SEVERE M.E DAY – A COMMEMORATION OF SOPHIA MIRZA 1973-2005

Today, August 8th, would have been Sophia Mirza’s 40th birthday.

To commemorate her I am writing this blog so that her plight may never be forgotten.

Sophia Mirza suffered the severest form of M.E. M.E is recognized as a neurological disease by the World Health Organisation and was understood as such until 1988 when a new criteria was born.

Sophia Mirza was tragically ill.

The following information is taken from the website her mother, Criona Wilson, built to raise awareness of the dire situation ME patients are finding themselves in, http://www.sophiaandme.org.uk

“Sophia was the youngest of my four children. As a child she had chicken pox. When she was 17 she was a passenger in two separate car crashes. Shortly afterwards, she was hospitalized with suspected meningitis and was given a lumbar puncture. At 19 she went travelling and working in Africa, before which she had to have multiple vaccinations. Whilst in Africa she had two doses of malaria.”

“In 1999, Sophia got the ‘flu. She could not recover from it. By December of that year she could only leave her bed to have a bath. In June 2000, she was moved into the tenth floor of a high-rise block of flats. There, she would have a bath each day where she relaxed for about an hour. Within three months she “crashed” and had become bed-bound. I could not understand why, as she had done nothing different during this time.”

“Her room had to be completely “blacked-out” and she also wore eye pads as any form of light seared her eyes and affected her in other ways. She had to wear ear plugs as any noise or sound, even the sound of a voice, made her even more ill. She could not bear to be touched for the same reason, even though she craved the human touch and the comfort it gave. Since that time she had been unable to have either a bath or a hair wash as water too magnified her symptoms. She was only able to lie on her right side. She had, for most of this time, been unable to speak. She had been unable to read or write, listen to the radio or have any electrical gadgets in her room. She was unable to have visitors. Her G.P was at a loss as to what to do. She suggested that Sophia was put “away in a home so her mother could get on with the rest of her life”. Her mother did not agree. Years ago, she had nursed patients with all sorts of diseases; never had she seen anyone so profoundly ill in so many diverse ways, as Sophia.”

Sophia’s doctors 100% believed she was suffering from a mental disorder. Her mother battled with the authorities and medical profession to prevent Sophia being put through this torment when she was clearly physically sick, but it was to no avail.

Criona was told that if Sophia refused to go to Old Church Hospital in Romford, or if she did not recover within the following 6 months, that she would be sectioned under the Mental Health Act, then added that if she tried to stop this, then the doctor would go to the courts to have her removed as the nearest relative. Furthermore, if she did not open the door when they would come to take Sophia away, that the police would be called to “smash the door down”. When asked how much better Sophia would get by these proposed actions, the reply was given that it was “none of your business, that it was for the courts to decide”.

In July, the professionals returned – as promised by the doctor. The police “smashed the door down” and Sophia was taken to a locked room within a locked ward of the local mental hospital.
Shortly after she managed to get referred back home, the damage inflicted by the hospital made it too late. From Tuesday 22nd November, Sophia could not move an inch, neither could she sleep.

On Friday 25th she died.

The pathologist at Brighton Coroner’s Court stated,

“M.E describes inflammation of the spinal cord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia”

Another pathologist said, categorically, that dorsal root ganglioitis is a pathological condition. He said psychiatrists were baffled by her illness but that “it lies more in the realms of neurology than psychiatry, in my opionion”.

Some of the worlds’ top institutions such as Stanford University, UCLA and Harvard have found links to ENTEROVIRUSES, particularly in the brain, and the HHV6 virus in spinal fluid in ME patients.

Despite all the research, the British system works like this. You are diagnosed with M.E, sometimes known as CFS, Chronic Fatigue Syndrome, but its real name is M.E.
Bearing in mind the NHS clinics & NICE Guidelines categorically state that they do not cater for the severely affected – which is a whole different spectrum of illness altogether.

The NHS clinic refers you for graded exercise therapy. You cannot even sit up in bed you are so weak so you politely say no thank you. You are then deemed a danger to your own health and mentally unfit to make decisions for yourself and psychiatry are called in.

This happens a lot when patients are admitted to hospital for ME, I’ve seen many cases where this happens. The worse case scenario is that you are removed from your own home, sectioned under the mental health act and placed in a ward where exercise is forced upon you.

This is real and is happening all over the world. Justina Pelletier is a recent example which hit the mainstream media.

If this story shocks you, saddens you and makes you want to do something about it, please join the NEUROIMMUNE ALLIANCE Facebook page for ideas, projects and awareness campaigns.

RIP SOPHIA MIRZA

Few Against Many – The Battle for Rehabilitation

How does disability affect us? How far can we go before we admit defeat? How do we learn to accept our limitations?

These are just a few of many questions I get asked on a daily basis. How to deal with the transition from being completely healthy to completely disabled, and if I am honest, I don’t really have the answer as it’s something I am dealing with myself.

I read somewhere that over 60% of disabilities happen later in adult life, that they are acquired as a pose to born disabled.

This isn’t a ranty piece or an “I’m feeling sorry for myself” piece. It’s a question of perceived disability – and how much is too much, how far is too far?

My rheumatologist said to me that once you put yourself in a wheelchair, you’ll never get out of it. I am battling between what I want and what I need.

As I write this I am feeling very frustrated. Not for me, for the needless suffering of millions out there like me who live like this day in, day out, in isolation, with no help or support. I saw a couple of people at the CFS clinic yesterday at the Royal Free Hospital, pale and shaking. I knew they would go away feeling hopeless and even more scared – most do. This feeling is exactly the reason why I founded Neuroimmune Alliance, so people didn’t have to be scared anymore, that they could understand their symptoms and why they are sick, get the appropriate tests and find other people to help and support them. Our network extends across the UK, South Africa, North America and Canada – we help and support people all across the Globe. It has taken me seven years to be diagnosed with a potentially fatal immune system disease – that was overlooked and scoffed at because I had a diagnosis of M.E/CFS – otherwise known as Chronic Fatigue Syndrome. I now have this diagnosis taken off my medical records but those who study the disease understand that my type of immune disease is primarily what CFS is – the name is merely a red herring.  I also suffer from a serious liver condition called Primary Sclerosing Cholangitis. Again, it’s taken me years to get taken seriously. I was laughed at by consultants when I said I was ill, I nearly died in hospital of a post-operative infection and still the consultant scoffed “it’s only your ME making you like this” as I writhed around in pain and in and out of consciousness.

How are we supposed to deal with our disability AND being treated like this by the system?

I know of one very brave young lady who was having such bad seizures whilst in hospital, the nurse left her lying on the floor in her own urine, telling her she could get up if she wanted to and must stop this behaviour at once. When I found out I was aghast and urged her to make a complaint against the hospital.

So how do I cope? What’s my secret? People ask me all the time how I keep going?

I can no longer function like a normal human being. There, I said it, round of applause please. I haven’t for sometime but I manage. Each trip I take, something happens and I end up in hospital. My legs just do not want to work, no matter how much massage or stretching I have, the EDS has wrecked my joints to the point that each bit of the leg doesn’t work in harmony with the other, my ankles do not want to move when I persist in putting each foot forward and I waddle like a duck before one part of the leg collapses in desperation – but I stubbornly persist, putting each foot forward, desperately looking around for handles or ledges nearby in case I fall over. Then there is the searing pain with each tiny step I take.

Lest we forget about the POTS. POTS is a funny one – sometimes it isn’t there (usually in doctors examinations) and I think “oh wonderful” and go about my day and then it hits like a tsunami, taking over my body and I can’t even think. If I’m not careful, I’ll black out altogether. Syncope the doctors wrote on my notes. My blood pressure plummets so low I don’t even feel like I am in my body, I feel like I am floating elsewhere, in another world and on another plane. Then there are the seizures – which tear my body apart, I feel like my soul is being ripped away, like Lord Voldemort after he tried to kill Harry Potter.

It honestly feels like someone has turned a switch on in my nervous system. I have giant surges of adrenaline, seizures, insomnia, blackouts. Then there is the worry that I have a tumour on my pituitary gland – but that’s another story for another day.

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.

Walking, or being upright for too long causes all the above symptoms. If I do not take adequate rest breaks or push myself too hard I will have a seizure. I live in a world where I have to have a bed to hand, peace and quiet and no stress but in reality that is hard to achieve. People say “well sitting up for a minute won’t hurt you” or “just try getting some exercise or fresh air” really haven’t got a clue. I’ve learned to live with my limitations  – it’s just something that I need to do, like taking insulin every-day or having to fit a prosthetic limb, it’s something I have to do but it doesn’t define me.

Otherwise the only way I cope is with the support network I’ve created online – people across the Globe suffering the same as I am. And I fight, I refuse to give into this and let it dominate my life.

In all honesty, I’ve given up on Western medicine and its ability to make me better. Nothing can stop these roaring infections I have in my bile ducts. I am resistant to many mainstream antibiotics and end up with severe cholangitis and pancreatitis. It could kill me, I am well aware. I have started taking a potent blend of Oregano Oil as it has antibacterial properties, even against MRSA or so I have read. No doctor seems to want to cure these chronic infections – my new liver doctor may come up trumps but I am not holding out any hope. Once the biliary system is damaged, it’s irreversible bar a transplant.

I have a lady from Beijing trained in Chinese herbal medicine, sports injury massage and acupuncture who has helped me more in two months than anyone has. She uses a substance called “Dragon’s Blood” from Beijing which is a potent blend of herbs that ease joint pain, and it really does work! I am starting to wonder if I would benefit from going to the Far East. Certainly these sorts of therapies are more readily available in Africa where I spend a lot of time, but most definitely NOT on the NHS.

As Incubus said “if you really want to live, why not try, and make yourself”. In other words, if you want help, you have to do it yourself as no one is going to do it for you.

I’ve been toying with the idea of a wheelchair for a long time now. Some see a wheelchair as a tool to independence – a means of getting out and about again. To me it signifies admitting defeat, that once I am in that chair I am never going to get out again. I want to walk, smell the ocean, stand on two legs and feel like a human being again. Maybe I am thinking wrong. My last ditch attempt is Tai Chi. It’s supposed to be good for the joints and good for the soul. You never know, it might just work. I will be blogging about my experience with that for anyone who is interested.

All these symptoms are just too much for the poorly trained CBT therapists to understand. We are told in NHS sessions that we focus too much on our symptoms and that we must think about the fact that our symptoms are being caused by anything OTHER than ILLNESS.

A recent study stated “Precipitating factors may include acute infective illness and/or excessive stress, while the illness is maintained by the interaction of behaviour, thoughts, emotions and physiology. For example, after a severe infection or other illness, attempts to get back to normal life may result in bursts of activity punctuated by the need to rest up to recover, known as all-or-nothing behaviour (Moss-Morris 2010Spence 2005). These periodic bursts of activity may exacerbate symptoms and result in failure, which further reinforces sufferers’ belief that they have a serious, ongoing illness.” (http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full)

I am sure these authors have never read Montoya’s work on persistent HHV6 infection then. People are seriously, actually dying and they publish this drivel. Since I began working with M.E patients in 2009, I can count over fifteen deaths. One is too many yet they go unaccounted for by the NHS.

If we don’t get better, the patients are blamed for it (testimony from a patient at BARTS). Have you heard anything like it! If it’s not illness making me pass out then…oh nevermind, I’m not even going to argue. Anthony Komaroff said at the recent Stanford Conference…. “the illness is not simply the expression of somatic symptoms by people with a primary psychological disorder. It was a fair question thirty years ago to ask whether people with these symptoms might not just be expressing psychiatric stress, amplifying normal body sensations, or even fabricating for secondary gain—was a fair question thirty years ago, but today it’s no longer a fair question.”

So it seems like its one girl vs the system. Sort of like Buffy the Vampire Slayer, only with crutches.

The actual charities who are supposed to represent us are doing absolutely nothing bar Invest in ME and I suppose I have to give kudos to the ME Association for flying Ian Lipkin over. Other than that its grass roots organisations like mine, the MEANI folk (ME Association Northern Ireland) and various underground bloggers and writers supporting patients.

Our clinic is experiencing every single hurdle you can imagine. 1. I can’t get any doctors interested in M.E and 2. What an earth do they need a clinic for when they are not actually sick. I had a great relationship with a local nutritionist and GP who had an interest in M.E. It was him who found my immune deficiency back in 2007. If anyone could take up Rich van Konynenburg’s work in Sussex – it was him but sadly he declined my offer and stated he believed in the psychosocial model of M.E which saddened me greatly, he wouldn’t even come to the Invest in ME Conference. If doctors aren’t willing to LEARN, how can they expect US to cope?

I am not sure how to find a new doctor. I will. I won’t blog my plans for all to see as it might lead to false hope and we’ve had enough of that now haven’t we (XMRV anyone!).

My ambition is to get proper immune system testing and virology done on every patient – and have every patient diagnosed PROPERLY – not people with hangovers, burn out, post natal depression being diagnosed with a serious neuroimmune disorder. I have meetings in place but whether they will come to any good, who knows. I will be struggling, fainting, sick and weak but I WILL get my point across and make some change.

Those who wish to hear the full Anthony Komaroff Stanford presentation can do so here: https://www.youtube.com/watch?v=nyyjRdbvPj0

For more information on my work please follow me on Twitter @ActionNowGal and see my website http://www.neuroimmunealliance.org

Thank you for reading.  

 

Will Peter White please stand up?

WILL PETER WHITE PLEASE STAND UP!

 Angry. Why am I angry? Because hundreds of thousands of people have a disease that is allowing doctors to abuse patients, all behind closed doors, for those who speak out to be deemed mentally unstable (of course, that’s an easy answer right?) and for those who are so severely ill being denied any tests or treatment because they cannot in the eyes of the medical profession, possibly be sick.

“What on earth am I talking about”, you may ask? I am talking about the disease that is laughed at every time its name is uttered. I myself cringe whenever doctors say it. I am of course talking about “Chronic Fatigue Syndrome” or to show respect to such a serious illness, Myalgic Encephalomyelitis.

The ‘doctors’ (I use this term loosely – since when is psychiatry an applied science?) in charge of the top M.E/CFS units in London (Barts, Kings, Maudsley) therefore setting the precedent for the rest of the country, do not believe in M.E – despite the same monotonous speech penned from the Department of Health stating that they follow the WHO classification of M.E as a neurological disease (ICD10-G.93).

I understand that these doctors do not believe M.E/CFS exists but they are wrong. So very wrong. I wish it didn’t exist either but it does. I understand that the psychiatric lobby will probably never admit that they are wrong but all I ask of them is one thing, and one thing only; READ THE EVIDENCE. Don’t IGNORE IT.

The evidence of M.E as a neuroimmune disease does not come from nowhere, the research has been conducted by some of the worlds’ most prestigious institutes; Harvard University, Stanford University, Colombia University New York. The man who is working on M.E right now is none other than Professor Ian Lipkin, the worlds’ top virus hunter who discovered the West Nile Virus and the SARS virus. Professor Lipkin is one of the most intelligent men in the world whose opinion cannot be ignored, yet it is and in a manner of gross negligence.

M.E is the illness caused by an infectious pathogen; that much is clear.

Jose Montoya from Stanford has showed that 11% of people came down with CFS following an infection with one of four pathogens and exclaimed that “our patients told us this all along yet a study had to be done to prove that they were right,” and then he turned to another recent study which showed that about 4% of adolescents who come down with infectious mononucleosis have CFS after 2 years. Importantly, he noted studies have suggested that the more severe the initial illness the more likely a person is going to come down with CFS and later suggested that giving short courses of antivirals to people with severe infection was an idea. Ian Lipkin, the most prestigious virus hunter in the world even stated at his recent phone in conference with the United States Centers for Disease Control that M.E is likely to be caused by an “infectious agent”.

Lipkin also spoke about the finding of an Anellovirus – which he stated he does not know the meaning of yet but Judy Mikovits remains convinced of a retroviral footprint in the blood of M.E patients.  

This does not fit in with the mass endemic lie of ‘CBT and Exercise’ and ‘most get better in months or years’ No. They don’t. People with fatigue, mostly get better. Not autoimmune disease which has no current treatment protocol on offer. (Ben Dixon).

Below are basic immune assays that have shown abnormalities in patients with M.E/CFS (taken from Redlabs).

 

PERFORIN EXPRESSION ASSAY

Natural Killer cells (NK) cells are cytotoxic cells that mediate the immune response against certain cancer and virus-infected cells. NK cells are normally found in the peripheral blood, and are classified by their cell surface markers as CD3-/CD56+cells. NK cells activity is altered in several disorders such as multiple sclerosis, lupus, and CFS, and is very sensitive to various environmental pollutants. Since NK cells play a central role in the defense against viruses, decreased NK activity can lead to the development of opportunistic viral infections. NK cells exert their cytotoxic effect by releasing perforin, a protein that will destroy the cytoplasmic membrane of target cells and finally kill them. Expression of perforin mRNA can be measured as a mean to evaluate NK cell activation.


ELASTASE EXPRESSION ASSAY

Elastase is an inflammatory protease expressed in immune cells (monocytes, neutrophils). Elastase contributes to immune defense by inactivating foreign bacteria but at the same time it causes damage to connective tissue, breaks down cytokines, immunoglobulins and immune cells receptors. An excess, chronic production of elastase is therefore detrimental. In CFS patients, elastase is responsible for the cleavage of RNase L. Expression of elastase mRNA can be quantified as a specific marker of inflammation.


CD57+/CD3- ABSOLUTE CELL COUNT

CD57+/CD3- cells are a subset of NK cells. Their exact function, and what differentiates them from CD56+ NK cells, is not well understood. The absolute number of CD57+/CD3- cells is low in patients suffering from chronic Lyme disease (a disease that follows an infection by a bacteria called Borrelia). Patients with very low CD57 have significantly more co-infections and persistent immunologic defects than patients with higher counts. In patients that respond to antibiotic therapy, the number of cells come back to normal, hence this is a useful marker to follow the effect of a therapy.


SOLUBLE CD14

CD14 is expressed in monocytes/macrophages and plays a critical role in the recognition of bacterial cell wall components (LPS). The extracellular part of CD14 can be cleaved and released in the plasma, where it will inactivate circulating LPS. Serum soluble CD14 levels are significantly elevated in patients with inflammatory bowel disease, Crohn’s disease, but also in patients suffering from Brucellosis or Lyme disease.


C4a SERUM LEVEL

C4a is an anaphylatoxin generated by cleavage of complement component 4 (C4), upon activation of the complement system. C4a increase causes local inflammatory response and symptoms of hypersensitivity. C4a levels are elevated following exercise in CFS patients. A US study has reported that elevated complement C4a was an early marker for Lyme disease in tick bite patients.

In the absence of laboratory tests to the contrary, chronic illnesses are often misdiagnosed as somatoform disorders caused by stress and other nonorganic factors.(9) Patients with CFS, FMS and GWI usually have cognitive problems, such as short term memory loss, difficulty concentrating and other problems, and physicians who find psychological or psychiatric problems in these patients often decide that these conditions are caused by somatoform disorders, not organic problems.(1) Stress is often mentioned as an important factor or the important factor in these disorders. Indeed, GWI patients are often diagnosed with Post Traumatic Stress Disorder (PTSD) in veterans’ and military hospitals.(10) The evidence that has been offered as proof that stress or PTSD is the source of GWI sickness is the assumption that veterans must have suffered from stress by virtue of the stressful environment in which they found themselves during the Gulf War,(10) but the veterans themselves do not feel that stress-related diagnoses are an accurate portrayal of their illnesses. Most testimony to date refutes the notion that stress is the major factor in GWI,(11) suggesting that stress, albeit important, is not the cause of GWI.(12) But most physicians would agree that stress can exacerbate chronic illnesses and suppress immune systems, suggesting that stress plays a secondary not primary role in chronic illnesses, such as GWI, CFS, and FMS.(1) However, in the absence of physical or laboratory tests that can identify possible origins of FMS, CFS or GWI, many physicians accept that stress is the cause of these chronic illnesses. It has been only recently that other causes were seriously considered, including chronic infections.  (http://www.gulfwarvets.com/article24.htm)

A majority of Chronic Fatigue Syndrome (CFS) patients have systemic bacterial and viral infections. In our study of 200 CFS patients we found a high prevalence (52%) of mycoplasmal infections. Using forensic polymerase chain reaction we also examined whether these same CFS patients showed evidence of co-infections with various mycoplasmas, Chlamydia pneumonia and/or Human Herpes Virus-6 (HHV-6). We found that 7.5% of the patients had C. pneumonia and 30.5% had HHV-6 infections. Since the presence of one or more infections may predispose patients to other infections, we examined the prevalence of C. pneumoniae and HHV-6 infections in mycoplasma-positive and –negative patients. Unexpectedly, we found that the incidence of C. pneumoniae or HHV-6 was similar in mycoplasma-positive and –negative patients. Also, the incidence of C. pneumoniae in HHV-6-positive and –negative patients was similar. Control subjects had low rates of mycoplasmal (6%), HHV-6 (9%) or chlamydial (1%) infections, and there were no co-infections in control subjects. Differences in bacterial and/or viral infections in CFS patients compared to control subjects were significant (P<0.001). The results indicate that a very large subset of CFS patients show evidence of bacterial and viral co infections.  (Bacterial and Viral Co-Infections in Chronic Fatigue Syndrome (CFS/ME) Patients Garth L. Nicolson,1  PhD, Marwan Y. Nasralla,2  PhD, Kenny De Meirleir,3  MD, PhD and Jeorg Haier,4 MD, PhD)

In his Testimony before the US FDA Scientific Advisory Committee on 18th February 1993, Paul Cheney, Professor of Medicine and Director of the Cheney Clinic, North Carolina and one of the world’s leading experts on ME/CFS, testified as follows:

“I have evaluated over 2,500 cases.  At best, it is a prolonged post-viral syndrome with slow recovery.  At worst, it is a nightmare of increasing disability with both physical and neuro-cognitive components.  The worst cases have both an MS-like and an AIDS-like clinical appearance.  We have lost five cases in the last six months.  The most difficult thing to treat is the severe pain.  Half have abnormal MRI scans.  80% have abnormal SPECT scans. 95% have abnormal cognitive-evoked EEG brain maps.  Most have abnormal neurological examination.  Most have evidence of T-cell activation.  80% have evidence of an up-regulated 2-5A antiviral pathway.  80% of cases are unable to work or attend school.  We admit regularly to hospital with an inability to care for self”.

Other infections that have been found are:

Coxiella

Chlamydia trachomatis 

Brucella

Chlamydia psittaci 

Borrelia burgdorferi

Mycoplasma

Mycopl. pneumoniae

Bartonella

Ehrlichia chaffeensis-canis 

Babesia

Anaplasma phagocytophilum   

Rickettsia

Mycoplasma fermentans

IgA/IgM intestinal bacteria (leaky gut) Detection of IgA/IgM directed against Klebsiella pneumoniae, Proteus mirabilis, Pseudo- monas aeruginosa, Citrobacter koseri, Psds. putida, Morganella morganii, Hafnia alvei

Now chronic infection is only one part of the story. The research by Fluge and Meller (you can read more about that here…. http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358) indicates that M.E is an autoimmune disease.

Now reading all of the above, one would logically conclude that this disease is a BIOLOGICAL one, a treatable one and most definitely NOT a psychological one. This is where it becomes baffling as a group of doctors have decided to reinvent a completely NEW disease and do what the hell they like with patients suffering from the original disease. In short: the patients eventually die, like Sophia Mirza, Emily Collingridge, Lynne Gilderdale and many many more.

Professor Peter White of the infamous ‘PACE’ trial sits quite comfortably on the new UK M.E/CFS research collaborative and I think people need to be crystal clear on who and what they are dealing with.

The below is part of a medical textbook that is used to teach medical students about M.E/CFS.  

I thank those on Phoenix Rising for pointing this out to me.

As CFS would normally not be diagnosed within this timeframe, that means basically most of us have a psychiatric reason for our symptoms (according to them).


This section (and the index entry on CFS) then directs then reader to the CFS piece in Section 22 (Psychological Medicine), where CFS/ME is listed under “Functional or Psychosomatic Disorders: Medically Unexplained Symptoms”. 

Anyway this is the text below and the details of the book.

Kumar and Clark – Clinical Medicine 

By Parveen Kumar, CBE, BSc, MD, FRCP, FRCP (Edin), Professor of
Clinical Medical Education, Barts and The London, Queen Mary’s School
of Medicine and Dentistry, University of London, and Honorary
Consultant Physician and Gastroenterologist, Barts and The London NHS
Trust, London, UK; and Michael Clark, MD, FRCP, Honorary Senior
Lecturer, Barts and The London, Queen Mary’s School of Medicine and
Denistry, University of London, UK

ISBN 0702027634 Paperback 1528 Pages 1283 Illustrations
Saunders Published August 2005

—————-

Contributors include:

—————-

Anthony W Clare MD FRCPI FRCP FRCPsych MPhil
Professor of Clinical Psychiatry
Trinity College, Dublin;
Medical Director
St Patrick’s Hospital, Dublin, Ireland

———————————

Peter D White MD FRCP FRCPsych
Senior Lecturer in Psychological Medicine, Honorary Consultant in
Liaison Psychiatry
Barts and The London, Queen Mary’s School of Medicine and Dentistry,
University of London, UK

———————————–

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We all have illness behaviour when we choose what to do about a
symptom. Going to see a doctor is generally more likely with more
severe and more numerous symptoms and greater distress. It is also
more likely in introspective individuals who focus on their health.

Abnormal illness behaviour occurs when there is a discrepancy between
the objective somatic pathology present and the patient’s response to
it, in spite of adequate medical investigation arid explanation.

FUNCTIONAL OR PSYCHOSOMATIC DISORDERS: MEDICALLY UNEXPLAINED SYMPTOMS

`Functional’ disorders are illnesses in which there is no obvious
pathology or anatomical change in an organ (thus in contrast
to `organic and there is a presumed dysfunction in an organ or
system. The word psycho-somatic has had several meanings, including
psychogenic, `all in the mind'; imaginary and malingering. The modern
meaning is that psychosomatic disorders are syndromes of unknown
aetiology in which both physical and psychological factors are likely
to be causative,the psychiatric classification of these disorders
would be somatoform disorders, but they do not fit easily within
either medical or psychiatric classification systems, since they
occupy the hinterland between them. Medically unexplained symptoms
and syndromes are very common in both primary care and the general
hospital (over half the outpatients in gastroenterology and neurology
clinics have these syndromes). Because orthodox medicine has not been
particularly effective in treating or understanding these disorders,
many patients perceive their doctors as unsympathetic and seek out
complementary treatments of uncertain efficacy. Examples of
functional disorders are shown in Table 22.4.

Because epidemiological studies suggest that having one of these
syndromes significantly increases the risk of having another, some
doctors believe that these syndromes represent different
manifestations in time of `one functional syndrome’, which is
indicative of a somatization process. Functional disorders also have
a significant association with psychiatric disorders, especially
depressive and panic disorders as well as phobias. Against this view
is the evidence that the majority of primary care patients with most
of these disorders do not have either a psychiatric disorder or other
functional disorders.

Table 224

Functional or psychosomatic syndromes (medically unexplained symptoms)

`Tension’ headaches
Atypical facial pain
Atypical chest pain
Fibromyalgia (chronic
widespread pain)
Other chronic pain syndromes
Chronic or post-viral fatigue syndrome
Multiple chemical sensitivity
Premenstrual syndrome
Irritable or functional bowel syndrome
Irritable bladder syndrome

It also seems that it requires a major stress or a psychiatric
disorder in order for such sufferers to attend their doctor for help,
which might explain why doctors are so impressed with the
associations with stress and psychiatric disorders. Doctors have
historically tended to diagnose `stress’ or `psychosomatic disorders’
in patients with symptoms that they cannot explain. History is full
of such disorders being reclassified as research clarifies the
pathology. A recent example is writer’s cramp (p. 1233) which most
neurologists now agree is a dystonia rather than a neurosis.

Chronic fatigue syndrome (CFS)

There has probably been more controversy over the existence and
aetiology of CFS than any other functional syndrome in recent years.
This is reflected in its uncertain classification as neurasthenia in
the psychiatric classification and myalgic encephalomyelitis (ME)
under neurological disorders. There is good evidence for this
syndrome, although the diagnosis is made clinically and by exclusion
of other fatiguing disorders. Its prevalence is 0.5% in the UK,
although abnormal fatigue as a symptom occurs in 10-20%. It occurs
most commonly in women between the ages of 20 and 50 years old, The
cardinal symptom is chronic fatigue made worse by minimal exertion.
The fatigue is usually both physical and mental, with associated poor
concentration, impaired registration of memory, irritability,
alteration in sleep pattern (either insomnia or hypersomnia), and
muscular pain. The name myalgic encephalomyelitis (ME) is
decreasingly used within medicine because it implies a pathology for
which there is no evidence.

Aetiology

Functional disorders often have aetiological factors in common with
each other (see Table 22.5), as well as more specific aetiologies.
For instance, CFS can be triggered by certain infections, such as
infectious mononucleosis and viral hepatitis. About 10% of patients
with infectious mononucleosis have CFS 6 months after the infectious
onset, yet there is no evidence of persistent infection in these
patients. Those fatigue states which clearly do follow on a viral
infection can be classified as post-viral fatigue syndromes. Other
aetiological factors include physical inactivity arid sleep
difficulties. immune and endocrine abnormalities noted in CFS may be
secondary to the inactivity or sleep disturbance commonly seen in
patients. Mood disorders are present in a large minority of patients,
and can cause problems in diagnosis because of the large overlap in
symptoms. These mood disorders may be secondary, independent (co-
morbid), or primary with a misdiagnosis of CFS. The role of stress is
uncertain, with some indication that the influence of stress is
mediated through consequent psychiatric disorders exacerbating
fatigue, rather than any direct effect.

Management

The general principles of the management of functional disorders are
given in Box 22.7. Specific management of CFS should include a
mutually agreed and supervised programme of gradual increasing
activity However, few patients regard themselves as cured after
treatment. It is sometimes difficult to persuade a patient to accept
what are inappropriately perceived as psychological therapies’ for
such a physically manifested condition. Antidepressants do not work
in the absence of a mood disorder or insomnia.

Prognosis

This is poor without treatment, with less than 10% of hospital
attenders recovered after 1 year Outcome is worse with increasing
age. co-morbid mood disorder, and the conviction that the illness is
entirely physical.

Table 22.5 Aetiological factors commonly seen in functional disorders

Predisposing

Perfectionist obsessional and introspective personality
Childhood traumas (physical and sexual abuse)
Similar illnesses in first-degree relatives

Precipitating (triggering)

Infections
Chronic fatigue syndrome (CFS)
irritable bowel syndrome (IBS)
Psychologically traumatic events (especially accidents)
Physical Injuries (‘fibromyalgia and other chronic pain syndromes)
Life events that precipitate changed behaviours (e.g. going off sick)
Incidents where the patient believes others are responsible

Perpetuating ( maintaining)

Inactivity with consequent physiological adaptation (CFS
and ‘fibromyalgia’).
Avoidant behaviours multiple chemical sensitivities (MCS) CFS
Maladaptive illness beliefs (that maintain maladaptive behaviours)
(CFS)
Excessive dietary restrictions (`food allergies’)
Stimulant drugs
Sleep disturbance
Mood disorders.
Somatization disorder
Unresolved anger or guilt
Unresolved compensation

Box 22.7 Management of functional disorders

The first principles is the identification and treatment of
maintaining factors (e.g. dysfunctional beliefs and behaviours mood
and sleep disorders)

Communication

Explanation of ill-health, including diagnosis and causes
Education about management (including self-help leaflets) .
Stopping drugs (e. g. caffeine causing insomnia, analgesics causing
dependence)

Rehabilitative therapies

Cognitive behaviour therapy (to challenge unhelpful beliefs and
change coping strategies)
Supervised and graded exercise therapy for approximately 3 months (to
reduce inactivity and improve fitness)

Pharmacotherapies

Specific antidepressants for mood disorders, analgesia and sleep
disturbance .
Symptomatic medicines (e.g. appropriate analgesia, taken only when
necessary).

————————————————-

This was taken off a Twitter Feed about Peter White and BARTS Treatment protocols – see picture. It’s a public disgrace.

 

 

Rumour also has it that Peter White is also involved in the Karina Hansen case – a severely ill Danish girl removed from her home and sectioned against her will, where her health and life are at risk. You can find out more at the Karina facebook page https://www.facebook.com/JusticeForKarinaHansen

In a culture where a disease is refused to be recognise; patients are getting sicker, there is only one thing left to do: BLAME THE PATIENT!!!

We need to stop this right now – we need to challenge these doctors, these clinics, these beliefs and stamp them out.

 

 

ME vs EDS (Ehlers Danlos Syndrome)

It seems that a lot of people I know with M.E are being diagnosed with Ehlers Danlos Syndrome and a lot of people are coming to me asking if they can have both diseases at the same time and if being diagnosed with one means they don’t have the other and how to tell the symptoms of one as a pose to another, so I thought I would write this blog in the hope that some of these issues are made clearer.

M.E (short for Myalgic Encephalomyelitis) is classed as a Neurological Disease by the World Health Organisation. It is an illness generally precipitated by viral infection and can manifest into neurological symptoms although patients can go as long as two years with only the viral symptoms and no manifestation of any neurological damage. EDS on the other hand is an inherited genetic connective tissue disorder.

World-renowned EDS expert, rheumatologist Professor Rodney Grahame (University College London) points out that, in America, almost 650,000 cases of Ehlers-Danlos Syndrome (EDS) are missed ANNUALLY, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (Fibro/ME/csf, POTS/OI etc.).

The following is taken from the Ehlers Danlos National Foundation:-

What is   EDS?

                                                                        

       

 

Individuals with EDS have a defect in their   connective tissue, the tissue that provides support to many body parts such   as the skin, muscles and ligaments. The fragile skin and unstable joints   found in EDS are the result of faulty collagen. Collagen is a protein, which   acts as a “glue” in the body, adding strength and elasticity to   connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous   group of heritable connective tissue disorders, characterized by articular   (joint) hypermobility, skin extensibility and tissue fragility. There are six   major types of EDS. The different types of EDS are classified according to   their manifestations of signs and symptoms. Each type of EDS is a distinct   disorder that “runs true” in a family. This means that an   individual with          Vascular Type EDS will not have a child   with Classical Type EDS.

What are the symptoms of EDS?

Clinical manifestations of EDS are most often   joint and skin related and may include:

Joints: joint hypermobility; loose/unstable joints   which are prone to frequent dislocations and/or subluxations; joint pain;   hyperextensible joints (they move beyond the joint’s normal range); early   onset of osteoarthritis.

Skin: soft velvety-like skin; variable skin   hyper-extensibility; fragile skin that tears or bruises easily (bruising may   be severe); severe scarring; slow and poor wound healing; development of   molluscoid pseudo tumors (fleshy lesions associated with scars over pressure   areas).

Miscellaneous/Less Common: chronic, early onset, debilitating   musculoskeletal pain (usually associated with the Hypermobility Type);   arterial/intestinal/uterine fragility or rupture (usually associated with the   Vascular Type); Scoliosis at birth and scleral fragility (associated with the   Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia   Type); mitral valve prolapse; and gum disease.

What are the types of EDS?

There are six major types of EDS. The different   types of EDS are classified according to the signs and symptoms that are manifested.   Each type of EDS is a distinct disorder that “runs true” in a   family. An individual with Vascular Type EDS will not have a child with   Classical Type EDS. Learn more   about the different types of EDS.

How is EDS diagnosed?

The categorization of the Ehlers-Danlos syndromes   began in the late 1960s and was formalized in the Berlin nosology. Over time,   it became apparent that the diagnostic criteria established and published in   1988 did not discriminate adequately between the different types of the   Ehlers-Danlos syndrome or between the Ehlers-Danlos syndrome and other   phenotypically related conditions. In 1997, a revised nosology was written in   Villefranche that redefined the types of EDS. Learn more   about the EDS nosology and how EDS is diagnosed.

How prevalent is EDS?

At this time, research statistics of EDS show the   prevalence as 1 in 2,500 to 1 in 5,000. It is known to affect both males and   females of all racial and ethnic backgrounds.

How is EDS inherited?

The two known inheritance patterns for EDS   include autosomal dominant and autosomal recessive. Specifics regarding   genetic inheritance may be found by following the link below. Regardless of   the inheritance pattern, we have no choice in which genes we pass on to our   children. Read more   about hereditary patterns.

What is the prognosis of   someone with EDS?

The prognosis of EDS depends on the specific   type. Life expectancy can be shortened with the Vascular Type of EDS due to   the possibility of organ and vessel rupture. Life expectancy is usually not   affected in the other types.

What can I do now?

The defining trait of those affected by EDS is   the search for information. The rise in Internet usage has delivered a   significant benefit to families affected by EDS. EDNF members are sharing   information on-line and learning from each other in ways that were impossible   nogt very long ago. Visit EDNF’s   Facebook page,   the EDNF Inspire   Online Community, or   look through the various EDNF publications available through the EDS Guides   menu on the left hand side of this page.

FOR MORE IN DEPTH SYMPTOMS PLEASE SEE THIS LEAFLET HERE http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

 

Most EDS patients are diagnosed by a rheumatologist, although the correct way to diagnose is through a geneticist which is commonplace in the United States but in the UK it is a condition that is very under looked by the NHS although Dr Hakim and the HMSA are working with NICE and Clinical Commissioning Groups to change this.

EDS is diagnosed using the “Beighton Scale”, which I will hold up for you now.

Now – back to the topic in hand, how do you know if you have ME, EDS or both?

Well the main way to tell is how you feel.

I’ve had EDS all my life and but I didn’t realise until 2010. It explains a lot of my problems growing up and general things that I could never put my finger on.

I’ve always had a problem with my knees. I could never run properly and my knees would buckle and my legs would sort of splay out to the sides, like Phoebe running in Friends! I was teased about it at school but instead of the school recommending I see a doctor, they made me run and work even harder which is damaging to someone with EDS.

I remember when my friends and I used to go to festivals, whilst carrying bags and tents from the car, they would be fine while I was in agony. And when we used to walk into town which was a good mile and a half walk, I would never be able to keep up and I would be exhausted on return. In fact everything used to affect me. I would get more hung over than everyone else, I would ache and be more tired that everyone else, I couldn’t jump up and down in the crowd. But I never thought much of it, I just thought I was weak and stupid.

I’ve always had problems with my back as well, lots of spinal pain and what I thought was knotted muscles in the shoulders but was actually the start of scoliosis.

EDS never actually made me ill though. Yes I would tire easily and not be able to carry things but it wasn’t until I got shingles that I got ill ill.

I’ve always been ill, all my life. I’ve had recurrent infections in the gut as a young girl which hospitalised me on numerous occasions, ear infections that would get so bad I would need to go into hospital to have them drained, and constant viral infections as a young adult and I was ALWAYS sick. On a night out with friends you could pretty much guarantee I would be sick! Even though I was always sick, I never actually felt like I had an ‘illness’ as such until I got ME – that hit me like a ton of bricks.

By the time I had got the Shingles in October 2007, the EDS had started to take hold a bit more. I could no longer carry bags without a great deal of pain and walking was getting harder. People at work used to complain about the way I walked up the stairs and how I always tried to get out of walking anywhere. They thought I was lazy and a shirker and to be honest, I thought the same. The fatigue was getting worse, at the end of the day I just wanted to sleep and my shoulders permanently ached but I still went out at weekends and had fun.

Then the ME hit and it was “bye bye” life as I knew it. None of the new symptoms I got were anything to do with the problems I’d had all my life.

After my first bout of shingles I generally felt weak and fluey day to day but I would have episodes of raging fevers and viral symptoms. I would lie in bed with a fever of 100 shaking and shivering, unable to move. I would vomit and just be so ill I would have to call in sick from work. Then after a few days the mysterious symptoms would disappear. Then they would come back again, the shingles rash would sometimes come back out, sometimes it wouldn’t. Now I realise I was infected with varicella, HHV6 and EBV but at the time I was scared witless and just thought I wasn’t exercising enough and was lazy and unfit so I joined a gym. I struggled, I really struggled. I would drag myself to the gym after work with a fever and a few days later the mysterious viral episodes would appear again. The sicker I got, the harder I pushed until I could push no more and I collapsed. I went to see a private doctor in London, in desperation and he said “what the hell are you doing exercising get out of London, go home”. So I did. My dad scooped me up, I sold my flat and was never well again.

I suffer with viral like symptoms every day – none of which are associated with EDS. In fact there is no research to link EDS with viral infection whatsoever, feel free to correct me if I am wrong.

I was later diagnosed with low NK cell function, hypergammagloublina, IgG subclass deficiency. Again, none of these immune system diseases are a part of the EDS diagnosis but they are commonplace in ME.

So how many people have been told they do not have ME, they have EDS and are suffering the same symptoms as me? Chances are you have both.

 

Primary M.E. is an acute onset biphasic epidemic or endemic  (sporadic) infectious disease process, where there is always a  measurable and persistent diffuse vascular injury of the CNS in both the acute and chronic phases. Primary M.E. is associated with immune and other pathologies.

(The Nightengale ME Definition) Ehlers-Danlos Syndromes Group: This is a group of

illnesses with a genetic predisposition to M.E. or M.E.- like illness. In fact it probably represents a spectrum  of illnesses that start with (i) hyper-reflexia syndrome, moving through any of the (ii) various Ehlers-Danlos Syndromes and climaxing in (iii) Marfan Syndrome where there tends to be early death if the aortic and cardiac changes are not repaired. Ehlers-Danlos syndromes can go undetected until what appears to be a switch is turned on, usually in late teens to early thirties. The “switch” may be viral or possibly age or hormonal related. Raynaud’s phenomenon is usually associated. Diagnosis: Briefly, patients over the age of 16 who can (i) touch their nose with their tongue, Byron Marshall Hyde MD

12

(ii) touch their forearm with the thumb of the same extremity (joint laxity), (iii) touch the fl oor readily with the full palm should be considered suspect for further examination. There are several fascination variations of Ehlers-Danlos. They are generally considered to be a group of genetic illnesses but in my examination of M.E. patients most often are not manifested until well past puberty and in adulthood. Additional generalized features of this spectrum of illnesses include (v) India  rubber or hyperelastic skin, (vi) easy bruisability (vascular fragility), (vii) Arachnodactyly (long spiderlike fi ngers). Many of the patients with a more severe form tend to be tall, slender with a dolidolichocephalic skull, high palate and long narrow feet with hammertoes verging on Marfan syndrome. (See Magalini, S. I., Magalini S. C. for both E-D Syndrome and Marfan 1  and Marfanoid hypermobility.)

 

A study done by John Hopkins University found that Among patients with CFS and orthostatic intolerance, a subset also has EDS. We propose that the occurrence of these syndromes together can be attributed to the abnormal connective tissue in dependent blood vessels of those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures. This in turn leads to increased venous pooling and its hemodynamic and symptomatic consequences. These observations suggest that a careful search for hypermobility and connective tissue abnormalities should be part of the evaluation of patients with CFS and orthostatic intolerance syndromes.

So was I genetically predisposed to have ME all along, because of having EDS?

This article is by Alan Pocinki at George Washington University Hospital.

By Alan Pocinki, MD
George Washington University Hospital

Joint laxity, or hypermobility, is a common feature of chronic fatigue syndrome (CFS).  In fact, I believe that it is a characteristic feature of CFS. Peter Rowe and his colleagues at Johns Hopkins first reported the association of CFS with orthostatic intolerance and joint hypermobility in 1999 [1], and since then, I have not seen a single CFS patient who was not hypermobile, not one.  Most hypermobile patients don’t look sick and, as a result, friends, colleagues and even doctors can be unsympathetic.  Furthermore, they may spend years unsuccessfully searching for the cause of their chronic pain and other symptoms because many doctors are unfamiliar with hypermobility syndrome and its complex set of symptoms.  Sound familiar?

The Beighton score is used to measure a person’s degree of hypermobility.  One point is assigned for the ability to accomplish each of the following movements:

  • bending your fifth finger back further than 90 degrees (1 point each side);
  • bending your thumb forward to touch your forearm (1 point each side);
  • hyper-extending your elbows and knees, that is, bending them beyond a straight line (1 point each joint, each side); and
  • putting your palms flat on the floor without bending your knees (1 point).

 

Dr Pocinki states that by treating the EDS symptoms, pain, sleep, fatigue etc, the CFS problems will go away but that is going by the gross assumption that CFS is merely FATIGUE when it is much more than that.

Yes I have always been more tired than the average individual but the tiredness associated with ME is not tiredness, nor is it fatigue. As Laura Hillenbrand, author of “Sea biscuit” once said, this illness to fatigue is like a nuclear bomb is to a match”. It is more like total body obliteration. The slightest of movements feels like climbing a mountain. The smallest of tasks are unachievable. The more severe patients have seizures when they try to exert themselves. Your body feels heavy and pulsated in pain. You can feel every gland, every lymph node, your body desperately trying to rid itself of the infections that got it in this state but it can’t, it is too weak.

The following is taken from Stanford Universities Website:-

At Stanford, we believe that a subset of cases of Chronic Fatigue Syndrome (CFS) may be related to infection. The nature of the association is still unknown, but we use two possible hypotheses in our research. One hypothesis is that the symptoms of CFS could be triggered by the persistent activity of a pathogen (for example, a bacteria or virus) in the patient. However, the second hypothesis is that the symptoms of CFS may be caused not by the pathogen itself, but rather by the body’s immune response to the pathogen.

Clinical, scientific and epidemiological observations made by several research groups, including our own, have led to the development of these hypotheses. From an epidemiological perspective, it has been known for many years that the onset of CFS is often acute and preceded by a viral or infection-like illness. Work led by Andrew Lloyd in Dubbo, Australia confirmed that the onset of CFS in some patients is marked by acute infection. Lloyd and his research team looked at acute infections of Epstein-Barr virus (glandular fever), Coxiella burnetii (Q fever), or Ross River virus (epidemic polyarthritis) in 253 patients.  They found that six months after the acute infection, 11% of the patients developed CFS.1 This study demonstrates that in Australia, a number of patients developed CFS following an acute infection.

John Chia, MD, infectious disease specialist, has reported numerous findings that suggest an association between CFS and infection with enteroviruses.  It has been observed that CFS patients commonly suffer from gastrointestinal complaints, and that between 35-92% of CFS patients have irritable bowel syndrome2. Chia has observed, “80-90% of our 1400 CFS patients have recurring gastrointestinal symptoms of varying severity… compared to only 3/100 controls.”3

In a recent study, Chia’s group found enterovirus VP1 protein in 82% of stomach biopsy samples of CFS patients, which “seems to correlate with the high percentage of CFS patients with GI complaints.” Additionally, “enteroviral protein was detected in the initial stomach biopsy specimens of six patients who developed GI infection before the onset of CFS, and also in biopsy specimens taken years later when the patients had persistent GI symptoms and fatigue.”3
“This finding suggests that enterovirus infection initiated GI symptoms and CFS, and the persistence of the virus years later likely was responsible for the patient’s symptoms.”3 Chia’s clinical observations and research thus suggest a strong association between enteroviral persistence/infection and CFS.

Additionally, A. Martin Lerner, MD, president of the Treatment Center for CFS, has reported in several publications that long-term antiviral treatment of a subgroup of CFS patients identified by different markers for herpesviruses have resulted in significant clinical improvement of their CFS related symptoms.4

In summary, it is plausible that the persistent activity of intracellular pathogens or the immune response against them could lead to the complex and chronic dysfunction observed in patients with CFS. Furthermore, it is possible that if the infectious trigger is appropriately identified, significant clinical benefit can be observed with appropriate long-term antimicrobial therapy.

The Ehlers-Danlos family of disorders is a group of related conditions that share a common decrease in the tensile strength and integrity of the skin, joints, and other connective tissues.[1]

In 1993, Beighton discussed the history of Ehlers-Danlos syndrome (EDS), beginning with a description of it in the fourth century BC.[2] The first detailed clinical description of the syndrome is attributed to Tschernogobow in 1892.[3] The syndrome derives its name from reports by Edward Ehlers, a Danish dermatologist, in 1901 and by Henri-Alexandre Danlos, a French physician with expertise in chemistry of skin disorders, in 1908. These 2 physicians combined the pertinent features of the condition and accurately delineated the phenotype of this group of disorders.

The amazing, almost unnatural, contortions that some patients with Ehlers-Danlos syndrome can perform often arouse curiosity. Historically, some patients with Ehlers-Danlos syndrome displayed the maneuvers publically in circuses, shows, and performance tours. Some achieved modest degrees of fame and bore titles such as “The India Rubber Man,” “The Elastic Lady,” and “The Human Pretzel.” Such clinical features also raise suspicion of the diagnosis when identified upon physical examination. Unfortunately, patients often go many years before being diagnosed.[4] 

  • Ehlers-Danlos syndrome type I (OMIM #130000, autosomal dominant): Distinguishing features include easy bruising, mitral valve prolapse, premature rupture of the fetal membranes, and premature birth.
  • Ehlers-Danlos syndrome type II (OMIM #130010, autosomal dominant): This phenotype is similar to type 1, but the effects are milder.
  • Ehlers-Danlos syndrome type III (OMIM #130020, autosomal dominant): Features include striking joint hypermobility and minimal skin changes.
  • Ehlers-Danlos syndrome type IV (OMIM #130050, autosomal dominant): Type IV is the vascular/ecchymotic form. Patients with type IV Ehlers-Danlos syndrome have prominent venous markings, which are readily visible through the skin. Diagnostically, this type is most important because patients are subject to spontaneous rupture of the bowel, medium-sized arteries, or both. Often, rupture leads to early death. Median life expectancy in these patients is 45-50 years.
  • Ehlers-Danlos syndrome type V (OMIM #305200, X-linked recessive): This phenotype is similar to, if not indistinguishable from, type 2; however, in familial cases, type V exhibits X-linked recessive inheritance.
  • Ehlers-Danlos syndrome type VI (OMIM #225400, autosomal recessive): Patients may present with retinal detachments, microcornea, myopia, and scoliosis. Differentiating hypermobility from neuromuscular hypotonia in these patients may be difficult.[10]
  • Ehlers-Danlos syndrome type VII (OMIM #130060, types VIIA and VIIB, autosomal dominant; OMIM #225410, type VIIC, autosomal recessive): Patients exhibit arthrochalasis multiplex congenita (hyperflaccidity of the joints without hyperelasticity of the skin), short stature, and micrognathia. Multiple congenital skull fractures have been reported in Ehlers-Danlos syndrome type VIIC.[11, 12]
  • Ehlers-Danlos syndrome type VIII (OMIM #130080, autosomal dominant): In addition to the other notable features, patients with type VIII Ehlers-Danlos syndrome have multiple skin striae and significant dental problems, including early tooth loss, periodontitis, and alveolar bone loss.
  • Ehlers-Danlos syndrome type IX (OMIM #304150, X-linked recessive): Features include occipital exostoses, bladder diverticula or rupture, bony dysplasias, and decreased copper and ceruloplasmin. Ehlers-Danlos syndrome type IX is no longer a subtype. Once the gene was identified, type IX was removed from the Ehlers-Danlos syndrome classification. The gene is related to a condition termed cutis laxa or occipital horn syndrome (see Causes).
  • Ehlers-Danlos syndrome type X (OMIM #225310, autosomal recessive): Patients exhibit poor wound healing, petechiae, and a platelet aggregation defect, which can be corrected with fibronectin supplementation.

 

A condition that appears to go hand in hand with EDS and is presented in a subset of ME/CFS patients is called POTS (short for Postural Orthostatic Tachycardia Syndrome).

There is a great charity called STARS where you can find out more on POTS and other forms of dysautonomia. http://www.stars.org.uk/

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadeness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.

Doctors aren’t sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS, but the current thinking is that they are the result of abnormalities in the sympathetic nervous system (which is responsible for decreasing muscle tone and increasing heartbeat in reaction to situations of stress or emergency) or the parasympathetic nervous system (which does the opposite) or both .

Physicians propose that these syndromes occur together due to abnormal connective tissue in dependent blood vessels in those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures (Rowe, Barron, Calkins, Maumenee, Tong & Geraghty, 1999). Simply put, this connective tissue abnormality allows excessive amounts of blood to pool in these patients’ lower limbs when they stand up.

Nitric Oxide deficit may play a role in POTS symptoms. Nitric Oxide (NO) is a very simple molecule whose job it is to control blood vessel size with changes in blood flow, changes in blood vessels during inflammation and blood vessel leakiness (Stewart, 2005). Some POTS patients have a deficit of nitric oxide (Stewart, Taneja, Glover & Medow, 2008.). This deficit may relate to the nitric oxide synthase molecule called nNOS, but it also has a compelling relationship with the hormone angiotensin-II. Together angiotensin-II and  NO may help to regulate sympathetic nerve activity in the brain and also in certain peripheral nerves (such as the splanchnic circulation). Moreover, angiotensin-II can result in increased oxidative stress which can itself reduce NO (Dr. Julian Stewart, personal communication, November 28, 2007).

This is interesting as it ties in with the work of John McLaren Howard who runs the ATP Profile Test through Sarah Myhill, and the work of Professor Martin Pall. All these theories can be found on my website if you are interested in further reading.

 

Adrenergic receptor dysfunction [6] with alpha 1 and beta receptor supersensitivity, hyperdopaminergic state [7] and high free plasma norepinephrine levels have all been described with POTS. Precipitating physical or mental stress can trigger symptoms and disease which may thereafter persist for long [2,3].

 

The War of the Words

Since my testimony to the Leveson Inquiry back in February 2012 , pleas for the barbaric portrayal of M.E patients to stop in the media have largely gone unheard. My testimony can be found on my website which is undergoing maintenance at the moment.

Lord Justice Leveson appears not to be bothered by the smearing and denigration of a patient population, 25% of which are severely affected, a percentage of that group are bedbound and on feeding tubes and have hickman lines in place.

The battle lines have now been drawn and an ugly fight has emerged. On one side, charities, patient advocates, some respected media and House of Lords peers and the other, psychiatrists who insist they have been venomously attacked by supposedly sick patients.

Times have changed. People are no longer the focus of Government policy. Human lives are not at the heart of Cameron’s “Big Society”, nor are they at the heart of the fruitless NHS Bill. Nothing this Government is doing has the benefit of the British people at the sole of its policy. When did Britain stop caring? Was it back in 1994 when UNUM signed a contract on welfare reform using a psychosocial model of illness to get people back into work – sick or otherwise? When did our NHS start failing its patients and decide that if it cannot help them – it would deny their very existence? This is where Wessely and his colleagues who support his psychosocial model of M.E come to fruition.

The so called media war against M.E patients began a week after Professor Ian Lipkin announced his XMRV findings at a Conference in New York.  Lipkins’ HGRV’s being the cause of M.E but we were sadly proved wrong, Judy Mikovits’ work was a mistake and it was time to move forward. One thing, however, emerged out of the ashes of XMRV, and that was that they HAD found abnormalities in B Cells and they intended to undertake further research on it. The pledged to find the cause of M.E and Lipkin boldly announced for patients to stand up for themselves and demand research and action from their Governments. Little did he know where that statement would take us.

It appears that the whole media stitch up was orchestrated, planned and calculated by Professor Wessely using his position at the Science and Media Centre to influence the spate of negative press. The fact that one article came out on the day of Emily Collingridge’s funeral was particularly telling.

The first signs of battle were when articles appeared in the Mail on 18th September (http://hanlonblog.dailymail.co.uk/2012/09/me-is-probably-a-mental-illness-after-all-but-that-does-not-mean-that-it-is-not-real.html), followed by Max Pemberton on 24th September

http://www.telegraph.co.uk/health/9559261/Why-few-dare-tackle-the-psychology-of-ME.html

and Damien Thompson in the Telegraph (http://blogs.telegraph.co.uk/news/damianthompson/100183212/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade) on 28th September.

How this systematic abuse of patients in the media can go allowed and unchecked remains a mystery to me and is something I shall pursue with the new Watchdog set up in the wake of the Leveson report, after all the Press Complaints Commission don’t want to know, they have made it clear that they are on the side of the SMC.

After these articles came out late September, a war emerged on Twitter. Various advocates, decent hardworking sick people like myself, tweeted the respective authors of the articles challenging them to look at biomedical facts about M.E.

Imagine how hard it is to run a charity which is trying to change perceptions of M.E when we are being portrayed as whingers and raving lunatics who won’t accept their mental illness. Our portrayal in the media is a far cry from the pictures of Lynne Gilderdale in her bed with a tube coming out of her nose. Given the fact that we live in times where terrorism is a commonplace occurrence, from 9/11 to the London bombings; it is an insult to be compared to terrorists. The comparison made me feel physically sick.

As one member on a forum said “I hope people do question the truth of these claims and let’s see the extent of the evidence. We all have access to a crime prevention officer and are all able to gain a high alert rapid response just by dialling 999. You would think reading this rubbish that there was an ME equivalent of a Taliban training camp. It is a pathetic article.”

Even Esther Crawley has jumped on the bandwagon stating she has been threatened and abused. A large list of WesselySchool supporters have come out and signed in support of the so called abuse.

http://www.independent.co.uk/voices/letters/ios-letters-emails–online-postings-2-december-2012-8373777.html

Myra McClure also reported the same when she published her negative XMRV paper.

So just exactly who are these so called abusers? I’ve never seen a malicious tweet to Max Pemberton as he claimed or any other journalist or health professional. I’ve never seen malicious emails or anything that could be considered hate crime. Just who are these people? Come out; come out, wherever you are.

Whatever the case may be, it just won’t stop, the never-ending denigration of M.E patients in the media. One journalist who published a positive article in our favour was warned off and received a letter from Wessely himself.

What do we actually want? Just a bit of fairness in medical practice  We want our disease to be treated and researched under proper criteria, not criteria that can include people with idiopathic fatigue and depression, at present anyone complaining of bit of fatigue lasting more than four months is being diagnosed with M.E – other neurological signs and symptoms are largely ignored.

And now for the psychiatry perspective: psychiatrists studying the viral neuro-immune disease known as M.E/CFS have been stating for years that the most rigorous Canadian Criteria (2003) for ME/CFS (Summary here: http://www.cfids-cab.org/MESA/me_overview.pdf ) are just too difficult to apply in research.

This is why when a team of psychiatrists (ask yourselves why are psychiatrists involved in drafting any policy on a neuroimmune disease?) were drafting the UK NICE Guidelines (see attachment CMO’s Working Group on M.E) they purposely left out the Cnadian Criteria with regards to diagnosis and management of patients. Hence Wessely gets his way by the use of the Oxford and Fukuka Criteria’s, thus strategically prolonging their beliefs for exercise and behaviour modification based treatment clinics, by lumping in together overweight/unfit patients, depressed patients, patients with unexplained fatigue and patients with anemia.

This team of prominent psychiatrists, known as the Chief Medical Officer’s Working Group, who have for far too long held sway over M.E treatment, dictate that patients with a diagnosis of ME/CFS are consistently refused and denied biological diagnostics, such as heart testing or immunological workups. This generates a self-fulfilling prophesy, a delusion on the part of psychiatrists that ME/CFS has no physical findings..”we were right all along”.

Moreover, the severely affected were excluded from the MRC current PACE “CFS/ME” trial (the management of which is directed by Wessely, who is also responsible for randomisation and database design):  “Exclusion criteria: subjects unable either to attend hospital reliably or to do therapies”  (ref: Trial Identifier: 3.6).  The Trial Identifier is clear (at 3.4) that: “CBT (cognitive behavioural therapy) will be based on the illness model of fear avoidance” and that “GET (graded exercise therapy) will be based on the illness model of both de-conditioning and exercise avoidance”, neither of which occurs in authentic ME: studies that specifically set out to demonstrate de-conditioning (for example, Bazelmans et al: Psychological Medicine 2001:31:107-114) and exercise phobia  (for example, Gallagher AM et al: Journal of Psychosomatic Research 2005:58:4:367-373) failed to do so.

What do these psychiatrists get in reward for their so called efforts in the face of adversity? A stinking great award in the shape of the Maddox Prize, hosted by SMC supporters ‘Sense about Science’. You couldn’t make it up if you tried. His organisation, the Science and Media Centre also came out for their 10th Anniversary in support of Wessely, with an article about being abused by M.E patients.

This is the man who said “Inappropriate referrals to physicians can lead to extensive physical investigations that may then perpetuate the symptom pattern of physical attribution”. It is this reason and this reason alone why I was ignored and told my pains were psychosomatic when in fact I have a serious liver condition and have been met with total disregard from the medical profession, refused antibiotics when my white cell count was over 20 and I was nearly in sepsis, all because the doctor thought, and I quote “you have M.E you were always going to be a difficult patient”.

“The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: the average doctor will see that they are neurotic and he will often be disgusted with them”.

I think you’ll find that this is what is known as the abuse of patients, not the other way round Professor Wessely.

All was not lost. Just when we thought we couldn’t sink any lower, our knight on a steed comes marching in, Professor Malcolm Hooper, denouncing Wessely’s award and demanding it is retracted. “He’s responsible for trying to make ME into a psychiatric condition when it’s not. He has done very poor science.”

Another opponent, the Countess of Mar, said: “I was absolutely horrified when I read he’d won the award and I would like to see it retracted.”

http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

Lady Mar hadn’t finished with Wessely yet. She sent him a scathing letter on 5th December http://www.meassociation.org.uk/?p=13875, criticizing his approach to M.E patients and his behaviour in general.

So where does this leave M.E patients? The outlook looks a bit bleak, Norway’s MRC have just refused funding for the second phase of Fluge and Mella’s Rituximab study, which is most disappointing as I was hoping the UK would be following suit but sadly the only research I can see is Peter White undertaking a new GET study, hopefully not with MRC funding.

Julia Newton I believe is working hard to incorporate Tilt Table Testing into the NICE Guidelines. She has also identified a link between those who can tolerate exercise and those who can’t. Her latest talk at NewcastleUniversity on 2nd October 2012 states

“As regards the thorny question of exercise, Professor Newton explained that it causes acid to build up in the muscles. ME/CFS people accumulate more acid on exercise, and struggle to get rid of it. Studies need to be done to identify which acid or acids are involved (thought to be lactic acid); the muscles and acid-transporting system need to be looked at in detail too. Certain types of exercise are very good at clearing acid and other types make it worse, because they increase the heart rate and push people beyond their anaerobic (lactic acid) thresholds, which they mustn’t go above – up to 80% is enough. The Newcastle team offer “Individualised Activity Management” (avoiding the dreaded e-word!) believing that, as with prescribing a medical drug, the choice, dose and duration of activity needs to be carefully worked out and agreed on to suit each patient.”

They have suggested autonomic and cardiovascular assessments for ME patients in the UK NHS clinics. This is a massive step forward to the NICE review which Neuroimmune Alliance has been working rigidly on.

Of course Wessely had to have his say about this, I can’t be bothered to go into his points but you can view them here…http://occmed.oxfordjournals.org/content/60/8/665.short

So what do I make of it all?

My opinion from conversations with Professor Wessely is that he isn’t evil; he isn’t out to try and murder patients. My feeling is that he has sociopathic qualities. He has to have absolute control. There cannot be room for any other viewpoint; it has to be his and his alone. He has ensured this  has happened by controlling what the media say though his role at the Science and Media Centre and through the establishing of his colleagues within various important roles within Government and research. All biomedical science is squeezed out; the field is surrounded by psychiatrists. Surrender to your enemy or fight for freedom. Both sides of the M.E story are not allowed to surface in the UK and this is why there is anger within the community, though I do not condone threatening behaviour of any kind.

A week in the life of an M.E Patient – PART ONE

9th September 2012

There are a lot of myths surrounding the disease known as Myalgic Encephalomyelitis (M.E). “Isn’t that where you can’t get out of bed?” or “ isn’t that where your tired all the time?” are questions I have had quite frequently. If only the answer were that simple. “ Doesn’t exercise make you better”?

So what exactly is M.E? My personal view is that it is a disease characterized by an excessive immune response to a virus which then destroys the brain and spinal chord. It has been classed as a Neurological Disease by the World Health Organisation since 1969. It was once referred to as “post-polio syndrome” and leading health practitioners have likened it to end stage AIDS and Cancer.

“They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, University of Miami, 2006 Press Conference.

The most untold suffering is not that caused by physical symptoms, it’s the anguish caused by disbelief from the medical profession. On top of the agonizing physical and mental stress caused by the disease, we are told that we are well, that exercise can make us better, that there is nothing wrong with us, that we are malingering or neurotic. It is widely acknowledged that many incidences of suicide result from the refusal of doctors to accept that sufferers are ill from Myalgic Encephalomyelitis.

Starting from today I am documenting several weeks in my world, the world of M.E in the hope that those reading may understand what this disease is and how significant its impact is. There are over 250,000 sufferers in the United Kingdom who feel how I feel every single day.

I wake up at around 9am. Even if I can’t manage to get out of  bed I try and get myself awake so I stick to my routine, if I throw myself off my routine my whole body suffers an internal breakdown. Upon waking, I am exhausted; I can barely open my eyes despite last night having gone to bed at 7.30pm and sleeping the whole night through – a rare occasion as I usually toss and turn until about 4am. My whole body aches and pulsates with pain radiating from my fingertips to my toes. My head throbs and bangs and my hair and bedding is soaking wet from the night. I try not to let this get to me and do not think of the day ahead, only minute by minute otherwise it’s just too big and too much.  I slowly get myself out of bed and upon standing the blood rushes to my head and makes the pain worse, typical orthostatic intolerance symptoms. I take two paracetamol and slowly tackle the stairs, one stair at a time, aching and creaking down like an elderly lady. I do like my morning cup of tea so head straight for the kettle and my weetabix and probiotic yoghurt. Once breakfast is over, I take my tea upstairs and set about taking my supplements and pills. I start by taking all my Co-Enzymes, Rhodiola, Magnesium and antibiotics. I then take my second round of painkillers. The B vitamins and painkillers coupled with the tea give me a slight lift so I prefer to tackle whatever tasks I need to do within those hours between 10am and 1pm. Today’s task is cleaning my bathroom which hadn’t been done in a few days, I like to polish the taps and mirrors when I can and wipe all the tiles down with bathroom spray. The whole job takes about 10 minutes but by the time I have finished I have sweat running down my face and my hair is soaking wet again. The exhaustion is profound, my arms and legs ache like I’ve lifted weights, I feel dizzy like I am going to faint and just so ill and flu like. I resign myself to the fact that I should have probably rested and will pay for the piddly amount of exertion I undertook. Wearily, I sit down and play with Roxy for a bit.

The sweat continues to pour off my body and when a bit falls on the floor I realize it’s time to tackle the biggest task of the day: the shower. I detest showering. Our shower comes out so piddly and washing my hair just kills, the pain of lifting my arms up to do it makes me grit my teeth every single time. Every day the thought of showering feels too much, I feel too exhausted to contemplate it but every day I grit my teeth and get on with it. I have to wash my hair everyday because of all the sweat otherwise it might not be so bad. Once I have finished I give myself a little round of applause.

Then the fun begins. I always emerge from the shower bright red, even though I have the temperature pretty cool and rinse my hair with cold water. I sit down on the bed and get redder and redder and hotter and hotter and the sweat pours off me once again. It takes about an hour to cool down by which time I am hot and sticky.

So far I’ve made a cup of tea, cleaned a few tiles and had a shower and it is 12noon. Today is actually quite a good day for me – the past three weeks have been far worse than this with no cleaning or housework at all and flat out all day. I already feel like I’ve run a marathon and the flu like symptoms are increasing as the day goes on. I put on a fresh pair of pajamas and get back into bed – the muscles in my legs and arms are burning and I have a burning pain down my spine.

1.30pm and I put my head down, I am usually so exhausted from being up (for four hours) I pass out around 1/2ish and sleep till 4pm but for some reason today I couldn’t sleep. If I don’t sleep in the afternoons all hell breaks loose. M.E clinics and psychologists do not advocate sleeping in the day but if I don’t, my vision goes blurred, I have been known to have seizures, vomit, get infections all from not enough rest and I get overtired and can’t sleep at night either. Then there is the effect is has on me the next day, I am like a zombie with no energy to even get myself out of bed.

 

12th September

This entry is very hard for me to write as I am feeling particularly ill today but it’s important for me to get people to understand how this illness grabs hold of you so quickly and symptoms wax and wane.

I didn’t sleep yesterday afternoon as I was watching the September 11th memorial at Ground Zero. I have also been working on my piece for the 9/11 tribute and part of my work with the Ground Zero illness sufferers. I am currently writing to the wife of a 9/11 victim which requires the right words and is quite upsetting and draining but important to do.

I got up at 8.45am, I was meant to have a manicure today but I woke up feeling heavy and fuzzy headed so I cancelled it. I had my usual bowl of cereal, cup of tea and medication but felt so unwell I laid back down and fell asleep, awaking again at 11am. My parents were going into town shopping so I set about my daily task which was tidying the house. I gave the bathroom a quick wipe down with some windowlene wipes which requires minimal effort and makes it all look shiny and clean. I did the same in the kitchen and then used my lightweight GTECH carpet sweeper round the house – perfect for people with disabilities. We have guests coming so I wanted the place to look spick and span. Half way through sweeping the upstairs I could feel my heart beating abnormally, skipping beats, very irregular and very fast, I recorded it at around 110bpm. My hands started to shake and I started to feel very dizzy but I always get like that when I stand so I continued, finishing the sweeping in about half an hour.

I sat down for a bit totally exhausted, too tired to feed my cat which would have to wait till parents got back – she’d had two breakfasts anyway, one at 8am and one at 9am!

The next job was to again tackle my daily shower, I felt so unwell I just had a quick one, shampooed my hair, no conditioner, quick lather and a teeth clean.

Showers kill me, I have no idea why, perhaps it’s the standing up but when I got out my whole world changed in a matter of minutes.

My heart palpitations became more irregular and it started beating even faster, I recorded it at 140bpm. I looked in the mirror as I put on some moisturizer and I’d turned a funny white/grey colour. My body felt so light, like I was floating and my head felt like it was buzzing and someone was drilling a hole in it and placing a piece of string and trying to pull me up through my head with the piece of string. I had to sit down. Throwing on some pajamas I climbed into bed, my head feeling like it was about to fall off. I started getting chills and shivering although my face and head was dripping in sweat, I looked like I was covered in water. My whole body was now shaking and quivering and I started to feel nauseous like I was about to throw up. I reached for the anti-sickness.

As well as feeling shivery and chills, I could feel the muscles in my arms searing with a burning pain. My spine had the same pain running through it and my back and neck seared with a ripping, dragging pain. I could feel the glands in my throat swelling and hurting.

I feel too ill to do much; even going on the computer is a major effort. It is now 2.45pm and my nervous system is so overwrought and strung out I know I won’t be able to sleep.

7.00pm

After a rest and watching Hollyoaks I am back in bed. The dizziness and shaking has got worse, my head is pounding and I can feel a fever brewing.

I also have twinges of pain in my liver and feel incredibly sick which I am now worrying about as I haven’t had an attack of Cholangitis for a while now. Generally feel pretty unwell but am remaining quite upbeat.

I have struggled sleeping today and feel like my body is burning more on empty and cannot even attempt to heal itself. 

My neck is by far (apart from the nausea and liver/stomach/bile duct pains) the biggest cause of pain, and the migraines burst through my head, neck, eyes and down into my neck and shoulders.

I can’t think of much else to say tonight, but everything I feel I know is signs and symptoms of continual recurrent infection on-top of the M.E itself – chronic flu-like symptoms and agonizing pain. Whenever you read about M.E no-one ever comments on how painful the condition is, all they focus on is fatigue but it isn’t really fatigue at all,  it’s bone crushing obliterating exhaustion, you can’t move, you can’t think, sometimes you can barely breathe.  

Sunday 16th September

After taking enough painkillers to knock out a small Elephant, I finally move tentatively toward the computer to finish this week’s entry.

Have not had the greatest of days. On Friday we had visitors, my Gran and her carer, my Uncle and his best friend all descended chez moi for lunch which of course means my three worst things: staying upright as of course no-one bothered to check I had a chair and was sitting down, noise and conversation.

All three activities make me feel so ill I am like a useless piece of goo for a few days afterwards. Experts prefer to call this “Post Exertional Neuroimmune Exhaustion”, a ridiculous inflammatory response that kicks in after activity, however small, but I prefer to call it a living hell.

I managed to get through the day anyway. I got up feeling pretty ill and managed to get myself dressed, as usual drenched in sweat after my shower. The family arrived at 11.30am and I managed to stay up until 2pm then I was exhausted and went to sleep.

Whilst I closed my eyes I saw flashes of light. I keep getting flashing spots when I close my eyes and my head feels like its spinning and sinking into the pillow and is going to come out the other side of the bed, a strange sensation.

Am having to take a break now as I feel too ill to type and am in too much pain, the back of my neck is ripping and burning, my head is pulsating with pain and my hands just won’t move to type. See you all later when I resume this entry.

7.40pm

Having got up at 9am, gone back to bed at 11am this morning with a fever then passed back out at 4pm I can safely say this day is a complete write off. I managed to eat some dinner and wipe up afterwards but the sweat is literally pouring off me, my head feels fuzzy and I am so dizzy I am frightened I am going to faint so I crawl back up to my room. My glands are all swollen and I have a fever. Whilst I was eating my dinner my right leg started jerking and convulsing as you do. My chest hurts and I am finding it hard to breathe and am constantly attached to my inhaler. Top it off, I am cold, yes cold, I have goosebumps. Must be the fever. This relapse is from having people round for a few hours, my body cannot cope with it and people just do not understand how draining it is when you are unwell.

Tuesday 18th September

My batteries are well and truly drained. I went to the chiropractor yesterday and sore doesn’t even come into it, I feel bruised and battered all over my body. I awoke at 9am and just could not get out of bed, my eyes kept closing and I felt heavy, achy and flu like all over my body but pushed on through and made my appointment at 11.40am. My head felt like it had wires coming out of it and people kept making the wires electric shock – like an inner vibration inside my head coming from an electrical charge. As the day progressed this pain got worse. I arrived home from the chiropractor to have some friends round; I could only sit up for 40 minutes as I felt so ill I had to excuse myself as I nearly fainted. As I was partaking in conversation I could feel my head spinning, so many things I wanted to say but too ill to say them. It was lovely to see my friends again, I never see anyone so I was so happy they were there even if I had to cut the visit short.

I went to bed around 2pm and when I woke, I could feel the post exertional malaise setting in. Bearing in mind all that triggered off a relapse was a visit to the chiropractors 20 minutes down the road and sitting in a chair talking to my friends for half an hour.

“Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or longer.

I awoke from my sleep feeling like I had the flu, basically. My muscles were throbbing and heavy, I felt weak and my pulse was far too fast.  I could barely move, I tried to turn over in bed but struggled to even do that. My head was sopping wet and I felt feverish. I awoke around 6pm and my dad kindly made me some spaghetti and heated it up as I was too weak to even get to the fridge. I watched TV for half an hour whilst eating a small portion of spaghetti then I collapsed back in bed again before I fainted.

I awoke the following morning and felt no better, in fact I felt even worse. To state I felt tired, or fatigued is ridiculous, if it wasn’t so serious I’d laugh. As Laura Hillenbrand, author of “Unbroken” and “Seabiscuit” states (Laura also suffers from M.E) “fatigue to this illness is what a nuclear bomb is to a match; it’s an absurd mischaracterisation”. The exhaustion drills right through to your bones, your body feels too heavy to move and when you do your head feels like its being held together by electric wires that keep shocking. My glands are so swollen they feel like giant bruises in my neck, under my arms and in my throat. The pain pulsates and radiates through your body, my hips grind together, my lower back clicks in and out of place and my knees just don’t support my legs, I nearly fall down the stairs when descending to get breakfast. I wonder if this latest relapse will last for long? I make a cup of tea and try not to focus on how ill I feel. After my usual routine of tea drinking and pill taking I feel a major migraine coming on so I take my strong painkillers and lie down, putting an episode of LOST on in the background.

I go back to bed at around 2pm but can’t sleep, I get an agonising ripping pain going through my liver and I feel like I am about to throw up. I run to the toilet but nothing so I take a few antisickness meds. Then I realize that I am missing the big Lipkin Press Conference in New York. Trying not to curse my terrible memory I log on to my computer and access Colombia Universities webcast. A mixture of good news and bad news, I knew that retroviruses and the association of them with this disease were over for now but I wasn’t expecting Lipkin calling all patient advocates to arms as it were, to fight for recognition. He also said he wasn’t giving up on M.E patients. Then a miracle happened – the fog cleared, the exhaustion and pain subsided enough for me to write a piece about the press conference.  Perhaps it was the two tramadol combined with the naproxen and paracetomol. Who knows, I managed to work until 4pm, then I microwaved some leftover Thai curry and am now back in bed not feeling particularly tired but feel motivated to actually do something. All those who keep banging on about ‘positive thinking’ can do one, I haven’t shed a tear for myself, only for others.

The pain in my back is still pretty bad though, my neck has seized right back up to where it was before and my lower back and hips are killing me. Oddly enough the work done on my ribs has helped loads; I can actually breathe again properly which is such a nice feeling after being so constricted for months on end.

22nd September

I wake up late after a rather bad night, lots of bad dreams and waking up in a sweat and a sore throat. I get up then realize this is probably a bad idea as the minute I am upright I start to shake, like a severe tremor. I feel shivery and freezing cold even though today is rather nice outside, and feel extremely viral, like I have a case of bad flu.

“A bad day”, I think, “oh well, it happens” as the past two days have been ok. I can feel I have a fever and feel rather dizzy but refuse to be deterred from getting a cup of tea. I make said cup of tea and the shaking gets worse. I have my breakfast and when putting the empty glasses in the dishwasher I come over really dizzy and drop one and it falls on the floor, miraculously bouncing and not smashing.

Am starting to get annoyed now. My parents go out and I feel slightly better after my tea so I tackle some light housework and have a shower, which nearly finishes me off.

After my shower I am so dizzy I nearly vomit, pulsing sensations going through my head and I nearly faint downstairs in the hall and the shivery flu feeling is back plus the shaking is worse than ever. Am putting myself on bedrest and will update later.

24th September

Today is a bad day. I went to bed early last night with a migraine and a fever, cutting X Factor short and missing Downton Abbey much to my annoyance.

I wake up at usual time, around 9am but today just cannot move. My body feels like a lead weight and my head is pounding. The plan today was to carry on with my awareness leaflet and just rest really, I was going to clean the kitchen as it was a mess from last nights roast.

I force myself out of bed for the usual tea/breakfast/pills routine but am just too ill. Forcing down a bowl of cereal I shuffle back upstairs with my tea and crawl back in bed. It feels as if someone has replaced my brain with cotton wool, my head feels thick and woolly and the atmosphere feels as if it were made of treacle, that I am wading through it and keep getting stuck.

I fall back asleep with Roxy for around an hour then try and get up, but feel too dizzy and ill, so weak like a floppy rag doll so I lie back down. I then get back up and repeat this ridiculous charade of getting up, too weak,  get back in bed for another few hours, until I realise I probably won’t sleep. It is now 2pm and I feel so dead. I made myself get up and have a shower but haven’t tidied away a single thing today. I haven’t eaten either, the thought of beans and egg on toast is tempting but I feel too weak to muster the strength to go downstairs which is a long way away, we have a huge house.

 

 

M.E, Gulf War Syndrome and the World Trade Center

I write this article with a sense that I am merely scratching at the surface here, that underneath all the findings I have unearthed, only few people have the answers and those people aren’t going to let go easily.

I’ve only ever been to America a few times and instantly fell in love with New York – I felt as if I could live there forever. Back in 2000/2001 I was happy, healthy, I had never heard of myalgic encephalomyelitis or Al Qaeda, never thought once about the effects of the Gulf War I had seen on television when I was a child until I became ill, never spared a thought for those veterans who served our country only to return tortuously ill, sick and destroyed.

My body is literally so full of toxins it doesn’t know how to function. I have brain dysfunction, massive immune system deficiencies, liver problems and infection outbreaks akin to someone with end stage AIDS. I am in a fragile state, I can feel my life slipping away and often find myself wondering how I ended up in such a mess.

My parents knew people in those towers. Luckily the husband in question didn’t go into work that day but as the 11th anniversary for the 9/11 attacks on New York and Washington approaches I found myself wondering what happened to the first responders, the ones who worked in the toxic dust cloud for months on end and discovered our stories are not dissimilar, the only difference is that those men and women were heroes, I certainly don’t call myself a hero and have the utmost respect for every one of them.

Many first responders who came to the rescue the day the World Trade Centre was attacked on September 11th 2001 have been inflicted with a menagerie of unexplained physiological symptoms that have baffled many medical professionals.

In the same way that the US Centres for Disease Control and the UK Department of Health lack a specified cause for Gulf War Syndrome, WorldTradeCenter illness as it is now being known as, has a whole host of explainable causes, if one bothers to look. [1]

When the planes hit the towers, the 90,000 litres of burning jet fuel created a cloud of thick, black smoke containing benzene, metals, hydrocarbons and many other chemicals. A number of research studies also show the collapsed towers produced a dust cloud containing thousands of tons of course and fine particulate matter, including pulverized cement, soot, pesticides, leaded and unleaded paint, hydrochloric acid, fiberglass, asbestos, wood, paper, metals, and polychlorinated biphenyls. [2]

As stated by Alison Johnson, Chair of the Chemical Sensitivity Foundation, presented testimony at the WorldTradeCenter air quality hearing held in Lower Manhattan by U.S. EPA Ombudsman Robert Martin on February 23, 2002

“It took months and in many cases years for the sick Gulf War veterans to realize that they had developed this new sensitivity to everyday chemicals. New Yorkers living or working near Ground Zero also may not realize at first that the symptoms they have developed can now be exacerbated by exposure to chemicals that never bothered them before 9/11.” [3]

Doctors at the Mount SinaiClinicalCenter for the World Trade Center Program in New York City have seen about 20,000 people. Almost half of them have been referred for treatment but what about the symptoms they can’t or won’t treat?

Symptoms certain first responders are experiencing mirror those of M.E and Gulf War Syndrome and Neuroimmune Alliance believes there is a link – that of toxicity.

“In the week of September 12 to September 18, 2001, Mr. Copp experienced an overwhelming exposure to chemicals and fungi at the site of the WorldTradeCenter terrorist attacks. Previously healthy, Mr. Copp has now been rendered totally disabled. Because of the nature of the damage to his immune, respiratory and central nervous systems, there is little likelihood that his condition will improve to the point where he would be able to resume work.
– He is permantly disabled.” [4]

Copp has suffered from five respiratory diseases, cerebral edema, chemically induced brain damage, thousands of blisters and lesions on his hands and arms, and immune system attacks amongst many others.  His biggest concerns are going blind because of glaucoma and that he suffers from postural orthostatic hypotension (he becomes unconscious without any warning).  His eyes also have multiple problems including a distorted lens, optic nerve inflammation and times at which he cannot see in color.  Mr. Copp also suffers constantly from infections.

An excellent recent example of how illnesses such as fibromyalgia might be triggered occurred in the setting of the deployment of troops to liberate Kuwait during the Gulf War in 1990 and 1991. The term “Gulf War illnesses” is now commonly used to refer to a constellation of symptoms developed by some 10%–15% of the 7 00,000 US troops deployed to the Persian Gulf in the early 1990s. The symptoms, which include headaches, muscle and joint pain, fatigue, memory disorders and gastrointestinal distress (Fukuda et al 1998), were seen in troops deployed from the United Kingdom (UK) and other countries as well (Unwin et al 1999). The panels of experts who examined potential causes for these symptoms and syndromes found that the sickness could not be traced to any single environmental trigger, and noted the similarities between these individuals, and those diagnosed with fibromyalgia and chronic fatigue. Furthermore, similar syndromes involving multiple somatic symptoms have been noted in veterans of every war the US or UK has been involved in during the past century (Hyams et al 1996). This suggests that war may be an environment where individuals are simultaneously exposed to a multitude of “stressors. triggering the development of this type of illness in susceptible individuals (Clauw 2003).

For many of those who were in or around the WorldTradeCenter on that fateful day of September 11, 2001, life has never been the same. Not only as a result of the obvious psychological trauma but also because many have been left with a host of physical symptoms and illnesses that the medical profession in many cases is unable to explain or effectively treat.

When the WorldTradeCenter collapsed a toxic concoction of chemicals and fine particles from pulverised debris was created which was breathed in by anybody in the vicinity. According to The Centers for Disease Control and Prevention (CDC) and other organizations anybody at Ground Zero could have been exposed to potentially harmful levels of dust, diesel exhaust, pulverized cement, glass fibers, asbestos, benzene derivatives and other airborne contaminants.

In the months following 9/11 the National Institute for Occupational Safety and Health (NIOSH) repeatedly sampled the air at Ground Zero. The samples showed the presence of various contaminants including those listed above but in most cases they were within acceptable limits. As always however these limits are set in isolation; it is not known how being exposed to ‘acceptable’ levels of multiple contaminants all at the same time affects health. In addition, the levels of toxic contaminants being breathed in by anyone in the vicinity of the WTC on 9/11 itself will obviously have been many times higher than those measured days, weeks and months later.

Many survivors of the WTC collapse and the rescue workers that responded report a wide range of symptoms which include:

  • Respiratory Problems
  • Allergies
  • Repeated Infections
  • Depression
  • Post Traumatic Stress Disorder (PTSD)
  • Fatigue
  • Cognitive Difficulties
  • Gastointestinal Symptoms
  • Irritable Bowel Syndrome (IBS)
  • Hypersensitivity to Chemicals (as in Multiple Chemical Sensitivity)
  • Muscular Aches and Pains

The illnesses reported by those at the WTC on 9/11 are remarkably similar to Gulf War Syndrome, both in terms of symptoms, and in the circumstances in which they arose. In both cases people were exposed to a wide variety of toxins and physical stressors while at the same time being under extreme psychological stress. It seems that in some people the body is simply unable to cope with such an onslaught and the result is dysfunction that affects every cell, tissue, and organ.

So on September 11, 2001, there was born another syndrome to add to the growing list of conditions which cause untold misery to the sufferer and which medical science is at a loss to explain. WTC related illness can therefore be added to Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivity, and others which all share symptoms, proposed toxic/stress triggers, and testable abnormalities on blood and other diagnostic tests.

Beyond Ground Zero

After being contacted by Elizabeth Beckmann from the support organization Beyond Ground Zero, The Environmental Illness Resource has set up a section of the site dedicated to WorldTradeCenter related illness. Elizabeth has provided an introduction and will post further articles in the future. Anybody whose health was affected by the WTC collapse is welcome to comment on articles, submit their own story or other information related to WTC illness, and talk with others affected in a new forum section specifically for this subject.

To visit the Beyond Ground Zero section simply click here; or click ‘Beyond Ground Zero’ under the ‘Patient Columns’ menu on the left side of the site.

If you wish to contribute to the Beyond Ground Zero section please contact us at support@ei-resource.org

My best wishes to all who are suffering from illness related to the WTC collapse; my thoughts are with you as well as with those who lost loved ones that day.

 http://autismandtoxins.com/

 What interests us is how M.E sufferers are infected with the same or similar bacteria, fungi and toxins that are present in WTC workers who breathed in toxic fumes from the building collapse. Most M.E patients we have come across did not work excavating remains of collapsed buildings or work with chemicals and fumes yet they are as infected as those exposed. What is the secret behind this mystery?

Infections found in patients with M.E/CFS, some of which I am positive for myself are:

Candida albicans

Cladosporium herbarum

Aspergillus niger

Alternaria alternata

Penicillium chrysogenum

Aspergillus fumigatus Ig

Chlamydia pneumoniae

Chlamydia trachomatis

Mycoplasma

Brucella   

Ehrlichia chaffeensis-cani

Borrelia burgdorferi sl

Bartonella spp

Babesia spp.

Anaplasma phagocytophilum

Rickettsia spp.

Coxiella  

Chlamydia Psittaci

Infectious agents in M.E/CFS has been a subject of controversy for many  years. It is the is the primary subject of journalist Hillary Johnson’s book “Osler’s Web” which I highly recommend ordering to understand this disease in its entireity. Oslers Web begins with the events of Incline Village, Nevada and the common finding of Chronic Epstein-Barr Virus infection. In 2009 it was subsequently thought to be a retroviral disease after the Whittemore Peterson Institute findings. The disease has been compared to late stage AIDS by Dan Peterson, it leaves its victims with severe neurological defects; studies over time have shown Epstein-Barr virus, Human Herpes Virus 6, Simian Cytomegalovirus (SCMV, an ‘atypical herpes simplex encephalitis) and Human Lymphotropic T-cell Virus. People, and I am one of them, reported their illness began with the flu or a flu like virus from which they never recovered. My particular virus of choice was Shingles. In Hillary Johnson’s Oslers Web, CFS patients complained to their doctors that “they felt as if they had been poisoned or were experiencing something akin to radiation sickness”; page 71, Osler’s Web. MRI Brain scans revealed many of these patients had “punctate lesions”.

Dr. Elizabeth Dowsett – says CFS “strikes one clinically as being polio-like and it has often been diagnosed as ‘nonparalytic polio’ “

Dr. Bill Douglass  – “The evidence is fairly convincing that Gulf War Syndrome is..vaccination-induced chronic fatigue syndrome….Salk and Sabin opened Pandora’s Box and we now have 72 types of polio rather than three” [for the 72 enterovirus types?] [5]

I am unsure how many Ground Zero workers or Gulf War vets have a confirmed diagnosis of M.E – it may be an untapped group of people who desperately need help like the rest of us but Neuroimmune Alliance is keen to find this group of people and see if we can help them.

A January 2002 article that remains posted on the Fox News website declared it “junk science.” It was/is the emergent illness which afflicted persons exposed to the debris of the WorldTradeCenter collapse. Unofficially called “World Trade Center Syndrome,” its distinctive feature was the “the WTC Cough,” and its symptoms included shortness of breath.

The article attributed the ills of the afflicted WTC cleanup crew members to the 2002 “flu season.” It furthermore attributed the ills of Manhattan residents to “anxiety salted with hypochondria.” Its conclusion was that only “minor and transient health effects from the site” were to be expected. The conclusion was wrong.

A newly emerged illness had just made the scene, and just as quickly on the scene was a political operative ridiculing people’s notice of it. Then came November 30, 2004, when it was officially disclosed that some of the afflicted crew members of the ground zero cleanup operation were actually suffering from the trapping of air. These workers were suffering from Small Airways Disease, and it was the end-expiratory CT scan that confirmed it to be true. The standard chest CT scan overlooked it.[6]

Denial? Sound familiar?

 

 

 


[1] Raphael, K., Natelson, B., Janal, M., and Nayak, S. A community-based survey of fibromyalgia-like pain complaints following the World Trade Center terrorist attacks. Pain, 100:131-139, 2002. Abstract

 

[2] (PCBshttp://www.msnbc.msn.com/id/44263614/ns/us_news-9_11_ten_years_later/t/world-trade-center-dust-witches-brew-toxins/#.TyRTvYHpeNY

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