The History of my Medical Appointments 2014

As I type this I am still in a state of shock and bewilderment.

I feel hopeless and I am a fighter. I am strong, I do not crumble under the cruelty of the NHS but this time I feel am defeated and I have no one else to turn to but America.

I collapsed in South Africa in 2010 in Cape Town over a period of years where eventually the liver specialist Dr Epstein said “you are sick. Probably small duct PSC like your mother”. Possibly the only and last sensible words ever said to me.

On return to the United Kingdom, they just do not believe I am sick. Even when I am vomiting bile for three weeks at a time, am losing stone after stone and cannot digest food: they do not believe I am sick.

Is this the stigma of having a diagnosis of M.E/CFS or is this just doctors refusing to listen? You know, I don’t think it is. I think it’s the ATTITUDE and ARROGANCE of the doctors in this country and having travelled the world seeking answers I think it’s only a problems with doctors from the UK. They think they are God.

My mum has PSC and has been left to die from sepsis on numerous occasions and has been treated appallingly by some of the top names in liver care in the United Kingdom.

Now the doctor I saw is the best of the best, like the Gandalf of Liver Disease.

I walked into the room and shook his hand and he looked at me, puzzled as to why exactly I was seeing him when I had seen two top consultants who are also supposed to be the best of the best, one of them left us waiting 8 months to see what he would do, in the end we got our money back with a note saying “I am too busy”.

All patients deserve to be listened to, whatever their history and treated fairly and with compassion under any doctor, be in NHS or private.

I feel like I have been treated like something one has stepped in and it is not good enough.

Now for the history

I wish to make it clear that I am not trying to push for a diagnosis or condition, I am not a hypochondriac nor am I stupid. I know my body and I know something is very very wrong and cannot get any consultants to take me seriously.

My mother suffers from Primary Sclerosing Cholangitis and has had a liver resection because a doctor, who shall remain nameless, who I am SO ANGRY AT, refused her a transplant when she so desperately needed one. I have seen my mother suffer for almost ten years because of this and have almost lost her six times from cholangitis and sepsis. I’ve been through all her procedures with her, seen all the consultants and understand that her case is not a typical case of PSC which has been confirmed by all the top clinicians and surgeons in the field as well as in South Africa. My mother has never had a raised Alk Phos nor has she been jaundice during her attacks yet Professor Malago treated her as a cholangitis case.

My history is rather complicated. I suffer from a condition called Ehlers Danlos Syndrome which is a connective tissue disease. I became unwell in the November of 2007 after a viral infection, initial symptoms were fatigue, sporadic vomiting and diarrhoea and raised liver enzymes.

I spent a lot of time in Cape Town, South Africa from 2009-2012 and it was there that I collapsed with “mysterious” attacks every six months or so of vomiting which would last a week, severe upper right quadrant pain, fever and raised liver enzymes, CRP and white cell count. These attacks coincided with my being in South Africa so I was treated there instead of in the UK.

It happened so many times it was concluded by the consultant there that it was acute cholecystitis and I was prepped to have a cholecystectomy but chose to have the operation in the UK at Worthing Hospital. I became immediately worse after the operation. I honestly believed it was a simple gallbladder problem; who am I to think otherwise! On my last visit to South Africa I had a scan and was told because of a dilation that it was likely I had some form of sclerosing cholangitis like my mother. I returned to the UK and my GP referred me to George Webster at UCH. By this time augmentin which I was given for the attacks had stopped working so my GP changed it to cefuroxime.

During 2012/2013 I was incredibly ill with a heart problem and I would black out every time I tried to stand up and had frequent seizures. This prevented me from seeing George Webster on the NHS although I did manage to have an MRCP. I kept trying to get up to London but every time I blacked out. I was subsequently diagnosed with Postural Orthostatic Tachycardia Syndrome which is now under control and enables me to once again be able to travel without fainting. The new tablet was only prescribed in October 2014 so I’ve only literally just stopped fainting and having seizures.

UCH discharged me understandably, so I went to see George Webster privately. He said that there were no biliary strictures but I did have a possible pancreatic divism. He said that the infections would settle down but they didn’t. My mother is under Steve Pereira privately so I went along to see him with her one time and he hinted that my problems could be down to Sphincter of Oddi dysfunction due to my Ehlers Danlos which would be very hard to diagnose. Again I was too ill with fainting and seizures to follow this up on the NHS.

The attacks began to get worse and I had to be on cefuroxime permanently as the attacks would just come back. They often came back regardless of the antibiotic so I had to take ceflclor for an acute attack which would clear it up in a week and keep me stable for about six weeks.

I had no more money to go privately so I was then recommended the Royal Free Hospital by a fellow patient so I asked my GP to refer me and I had my first appointment with Dr Patch on 3rd April 2014.

I attended the first appointment alone and it was fairly routine. I explained what had been happening and Dr Patch said it may be necessary to do a biopsy. He also wanted an ultrasound scan. In his letter to my GP he made a comment which I did not think was particularly helpful, that I stated to him that I have an Ig G deficiency and hypogammagloublina and that labels were “unhelpful”.

I find this rather insulting, I have a letter confirming the diagnosis from a top immunology Professor at the University of Stellenbosch, of which I attach plus blood results. If this is a reason why these attacks are occurring surely it is important?

Nothing was said or done anyway and a follow up appointment was made for 3rd July. This was the last time I was fully mobile and as well as I could be. Since that appointment I have been bedridden and wish to highlight from hereon in the severity of my condition. During this appointment Dr Patch was so rude! My mother was with me this time and can bear witness to his behaviour.

The computer systems were down and he came storming out of his office with a face like thunder and when we were eventually called in, he was cursing the computer and paid little attention to his patient. He was also angry that he had not managed to get my MRCP results from UCH – so he had basically made the appointment on the crux of that scan and therefore dragged me all the way up to London for nothing. The logical thing to do would surely, given my symptoms, done another MRCP but no. I believe he wanted to schedule an Ultrasound at the Royal Free.

The day after seeing Dr Patch, on 4th July, I collapsed with the worst attack to date. I vomited bile for an entire week, I was shaking and trembling and could barely stand and was in agony. Dr Patch was informed and told me to go to my local hospital. I told him that they wouldn’t help me and explained what happened after my gallbladder operation * see footnote. My G.P arranged an emergency ultrasound on 11th July which revealed four large masses on the liver and a dilated bile duct.

After three weeks on Septrin the attack slowly subsided and I went for a CT scan on 29th July which came back with no abnormalities but I was diagnosed with Focal nodular hyperplasia. The CT report highlighted a “suspicious area” which Dr Patch has never told me about to this day.

The attack came back on my birthday, August 24th and was even more deadly and violent than the previous month. I had the rigors, I was sweating and shaking, vomiting for a week again and for the first time I had severe stomach cramps and electric yellow diohrrea which went on for a week, I couldn’t eat, couldn’t keep water down, was dehydrated and severely weak. My mother telephoned Dr Patch and begged him to admit me into the Royal Free which he refused. Given the state I was in I should have been an inpatient under investigation – not to admit someone that ill is barbaric and in my eyes, negligent. My local hospital won’t touch a patient if they are under a London consultant. That’s just the way it is. My mother wrote to Dr Patch on in July trying to get him to understand how ill I had become so quickly and we never received a response. We kept ringing and ringing his secretary but still he never replied to that letter which is just bad manners, no matter how busy a doctor may be.

I’m unsure how I got from August 24th to the present date – a combination of septrin and ceflclor.

In November the Septrin stopped working and I had the worst attack I’ve had to date and I was rushed into my local hospital. The doctors there listened to me thoroughly but because I had no notes or care plan, they did not give me antibiotics despite my CRP and liver enzymes being raised.

I was sicker than I had ever been before, I could not even stand to wash myself, I couldn’t hold a fork to eat, I was so weak and the rigors were horrific and took over my whole body, trembling from head to toe and the sweat was pouring off of me. I didn’t eat for over a week and by now had lost over a stone in weight since July. The upper right quadrant pain was so bad I was in tears and screaming, I couldn’t lie on my right side at all. I increased the dose of septrin but it wasn’t working. I was extremely drowsy as well, lethargic and very confused, I didn’t know what day of the week it was.

I remembered that when we were in New York one of the doctors gave my mum when she had an attack – Rifaximin. I asked my GP to prescribe some and it worked and within 24 hours the rigors had stopped. After a week I felt strong enough to shower again and was getting up. If Dr Patch isn’t convinced these attacks are cholangitis related, WHY DOES IT RESPOND TO THE RIGHT ANTIBIOTIC?!!!

I had been so ill I had to cancel Dr Patch a few times and finally saw him in clinic on 27th November and he was the rudest he has ever been to me, completely dismissive.

When I walked into the room he didn’t shake my hand, didn’t look up to acknowledge my presence, you could instantly tell that he wasn’t interested.

I immediately told him about the attacks I’d been having since July and he just barked “symptoms”, no sympathy, nothing. I started to describe the attacks when the phone rang and he spoke to the person on the other end for about 3 minutes and when he had finished he never bothered to ask about the attacks and just told me to get on the bed to examine me. He then left the room, then started to phone someone to cover him as he had to leave clinic, he seemed more concerned with getting out of there than seeing his patients! He then came back and told me that the tumours are harmless which is fine, I was happy with that. I then queried as to why when I had an attack, the common bile duct was dilated. My G.P told me, and you can confirm with him, that if the bile gets blocked, then it clears itself, it’s going to be VERY HARD to pick up on a scan. I told Dr Patch that my G.P said this and he said your bile ducts are fine, there is no evidence that there are any duct problem and we haven’t seen the inside of the ducts because we haven’t done an MRCP.

I stopped in my tracks. What do you mean you haven’t done an MRCP? With my family history and symptoms, EVERY doctor I’ve ever seen said an MRCP or ERCP is the FIRST THING NEEDED.  It turns out the scans that Dr Patch had arranged at my local hospital were just basic MRI scans which took place on 12th September – no wonder it didn’t show up anything. And Dr Patch told a barefaced lie by saying there is no evidence of biliary problems: it was on the ultrasound and it was on the MRCP report from George Webster stating I had a possible pancreatic divism which when I asked, Dr Patch TOTALLY DISMISSED.

It was only when I started to get angry that Dr Patch agreed to a proper MRCP but by then I had totally lost faith in him and I said that I don’t believe you understand how ill I have been.

He then said that PSC sufferers always have a raised alkaline phosphatase and that if I had small duct PSC that can only be confirmed by a biopsy which he was unwilling to do because my Alk phos hadn’t been recently raised although it had been in the past. I think this attitude is terrible – what harm is it to run a biopsy and if I do have fatty liver like he says, surely the level of damage should be assessed?

I tried to explain at my appointment yesterday that two days prior to my mother’s emergency liver resection which had to occur as the left lobe of the liver had completely died from cirrhosis, that her Alkaline Phosphate was not raised – only her GGT which sat at 96. For some reason in both our cases bloods do not give a full picture but Dr Patch would NOT allow me to speak.

I also told him about my electric yellow greasy stools and that I could not eat without it going straight through and he completely ignored it – considering my vitamin D is very low surely malabsorption should be investigated but instead I was ignored and left to suffer.

He then told me that I am trying to chase a diagnosis that I don’t have. I said fine, if it’s not the actual PSC then perhaps, like Steve Pereira said, it’s a bile flow problem due to my EDS – he dismissed this and said it wasn’t his speciality.

I showed Dr Patch some abnormal blood results picked up when I was in hospital, raised complement C3 and C4 which has been shown by researchers to be raised in autoimmune liver disease. He barked at me again “not my field”. Surely it’s his job to find out – anything to deny the fact that I am ill.

On 27th November I received a letter from Dr Patch stating that had requested an MRCP which is UNTRUE as you have read the above. I requested the MRCP – I insisted on it, Dr Patch would never have bothered had I not.

Needless to say, I no longer wish to be Dr Patch’s patient. When I do finally get a diagnosis confirmed, I shall be taking this further.

I was then referred to the best of the best, Dr Hirshfield at Queen Elizabeth Hospital, Birmingham.

Present Day – 23rd March 2015

I walk into Dr Hirshfields office, he shakes my hand and he looks rather baffled to see me, as if I should not be there at all.

He frowns and me and says why have you come all the way up here to see me when you’ve seen the best consultants in London.

Because they never listened to me I replied. Not one has sat me down and gone through how bad my symptoms have become.

Dr Hirsh then proceeds to get my MRCP scan up from 2013 on the screen and says there’s one tiny lesion – nothing to worry about. I said, er, I sent you the CT scan report from July that shows FOUR MASSIVE LESIONS.

He then says there is nothing to worry about. I ask him how he can be 100% sure if they are not cancerous, if there are no cancerous liver cells if they are not biopsied. Oh we won’t do a biopsy.

I ask then about these horrendous attacks and pain and he says to carry on rotating septrin and cefaclor, like it’s totally normal.

I then ask him to write to my GP giving authorisation for IV antibiotics if I am admitted into hospital.

He then looks at me and says, with a look of almost anger on his face, that “nobody gets admitted into hospital anymore.” He muttered something about the Government and said you literally have to be dying of a heart attack or a stroke to be admitted, or be in a car accident. Even transplant patients are turned away because of no beds. So he said no admissions for me.

It’s a good job I have a stash of IM antibiotics at home then isn’t it.

He didn’t want to know about the griping pain, the yellow greasy stools, any of it. When I asked if it could be my pancreas divism, he said no. People with pancreas divism don’t get symptoms, same as people with liver tumours don’t get symptoms but if you scour the internet you’ll find a different picture. Doctors are so out of touch with patients.

By then I started crying and getting fairly hysterical.

He then said he would take me in for one day and do everything, an ultrasound, an MRI and a fibroscan, then call if he finds anything – or I have the option to have all these tests done under George Webster privately. It’s my call.

But just like my mum who was told no she couldn’t have an MRCP – I was told MRI only. It’s the radiologists who decide what scans you should have apparently, mot the doctors – same as it’s the microbiologist who decides if you get antibiotics or not. Doctors don’t actually hold that much power in the hospital.

Paroxysmal sympathetic hyperactivity

Despite most people thinking M.E is merely just a bit of tiredness, one of my worst symptoms is just the opposite. My nervous system is in a permanent state of hyper arousal, or fight or flight mode. I produce too much adrenaline whilst somehow being crushingly exhausted at the same time.

Now my symptoms seem to fit the following even though I have never been diagnosed – only with POTS and syncope (fainting). My cardiologist doesn’t really know what to do with me but the following makes a lot of sense. Hydrocephalus is associated with Ehlers Danlos Syndrome which I have so this is definitely worth following up.

Paroxysmal sympathetic hyperactivity (PSH) is a syndrome that causes episodes of increased activity of the sympathetic nervous system. Hyperactivity of the sympathetic nervous system can manifest as increased heart rate, increased respiration, increased blood pressure, diaphoresis, and hyperthermia.[1] Previously, this syndrome has been identified as general dysautonomia but now is considered a specific form of it. It has also been referred to as paroxysmal sympathetic instability with dystonia, or PAID, and sympathetic storm. Recently, however, studies have adopted the name paroxysmal sympathetic hyperactivity to ensure specificity.[2] PSH is observed more in younger patients than older ones. It is also seen more commonly in men than women.[2] There is no known reason why this is the case, although it is suspected pathophysiological links may exist. In patients surviving traumatic brain injury, the occurrence of these episodes is one in every three. PSH can also be associated with severe anoxia, subarachnoid and intracerebral hemorrhage, and hydrocephalus.[3]

When I get these episodes my temperature goes up and I BURN, literally, my body feels like it’s on fire and my face goes bright red, my pupils dilate and my heart rate goes up to around 130 bpm. It feels like being on the magic roundabout. I drip with sweat, and when I say drip I mean pouring from my scalp down my face and onto the floor in puddles. I have to bathe twice or three times a day.

I also shake and tremor like I have Parkinson’s Disease, I cannot even hold a fork. I get myoclonic jerks, my legs will spasam and jerk themselves about like they have a mind of their own (pity they don’t when it comes to walking!).

When the symptoms become too bad, I get seizures. I am on pregabalin but it doesn’t help these symptoms.

I told my doctor how bad it was getting and he suggested a low dose of Clonazepam, one three times a day to calm things down.

In the mornings I definitely felt calmer, my heart rate felt steady. I still shook a bit but I was definitely feeling no fight / flight symptoms.

Afternoons are the worst. For some reason my autonomic nervous system goes berserk and that’s when the seizures kick in and I get this whooshing / fluttering rushing up and down my arms and legs which is just horrible and no doctor has been able to tell me what it is, I just get on with it. The afternoon dose of Clonazepam isn’t really helping the situation as its not strong enough but it’s all a work in progress.

It’s really hard to control as anything like light, sound, smell and movement can trigger it off.

Cort Johnson says the following on his website:

The vagus nerve is a big deal in more ways than one. Not only is it responsible for telling the ‘fight/flight response’ to go to sleep, it’s also the conduit through which most of the body’s immune signals get to the brain and through which the brain’s immune signals pass through to the body. The anti-cholinergic functions of the vagus nerve make it a key part of the anti-inflammatory response.  Low PNS activity is associated with increased inflammation, making it no surprise that reduced PNS activity is common in cardiovascular disorders. An over-active sympathetic nervous system, for instance, is believed to skew the immune response in the Th2 direction resulting in increased antibody production and decreased protection against intracellular pathogens.  Turning the SNS down could then improve antiviral defenses and reduce autoimmune processes.

Read more: System Reset: New Way To Reduce Fight or Flight Response Found

This makes total sense to me – I cannot sleep either.

I am seeing an Endocrinologist soon about my raised cortisol so I will see if that is related to my symptoms and keep you posted!

Support of the Extension of the 9/11 Health & Compensation Law

I write this post as someone from the outside of the first responder community, I am not a police officer or a firefighter but through wanting to help others with health problems similar to our own, the 9/11 community embraced me as one of their own and some of my good friends responded to the tragedy on that terrible day which is why I feel so passionately about the extending of the 9/11 Health and Compensation Act.

The following was written by the 9/11 Rescue Workers and Friends group – Claudia Thomas and I urge you to send to your Congressman today.

SEND TO: (Newspaper Editors, Television Stations, Congressional/Senatorial Representatives)

Dear (NAME), (TITLE),


As a 9/11 (Responder/Survivor/Family Member), I want to bring to your attention important information as concerns the condition of our 9/11 Community since 2001; myself, being but one of them.

I was a (responder/survivor/family member), and currently live in (State name).  I (or loved one) have been a participant in the WTC Health Program.  The Program is funded from the Zadroga 9/11 Health and Compensation Act that was signed into law, January 2011(1).  This program is set to run out of funds next year, leaving us without much needed benefits.

Statistics show that over 30,000 Responders and Survivors have one or more health conditions as a result of toxic exposure at the sites, with the greatest number of those sick or who have died, having served/survived the attack at the World Trade Center.  Over 3,500 ‘currently’ have 9/11 related cancer and those numbers are tragically expected to grow exponentially in the coming years.  There are over 70,000 in the World Trade Center Health Program, which also treats responders/survivors from the Pentagon and Shanksville, Pennsylvania sites(2).

Are you aware that over 429 out of the total 435 Congressional Districts of our country have responders/survivors of the September 11th attacks residing in them(3)?

An extension of the Zadroga 9/11 Health Care and Compensation Act would continue this much needed Health Program, and provide monitoring and health care for responders/survivors in all 50 States.  Further, it will continue the Victims Compensation Fund (VCF) providing economic relief from losses incurred from the sicknesses, and for families who have lost their loved ones due to toxic exposure related illnesses.  The Reauthorization of the law would also secure the City of New York’s contribution of 10% matching cost to the Health Care Program; and extend NIOSH support of the WTC Health Registry.  Finally, and equally important, the extension would provide needed research for 9/11 related illnesses.

On December 3, 2010, the NYCPBA (Policemen’s Benevolent Association), reported that the 986th Responder had passed away from 9/11 related illness(4).  This number did not even take into account the Survivors who also succumbed.  Current estimates show more than 1600 have passed(5).  We must, as a nation, honor those who served or were caught up in the chaos and toxins through no fault of their own.  We (My loved one) did what was right to serve community and country as was needed at the time of the attacks, and for months following, finding ourselves (or them) sick and/or dying from our efforts.  The Veterans of 9/11 need your support in passing the “James Zadroga 9/11 Health and Compensation Reauthorization Act of 2014”, (HR. 5503 and S.2844).  We did the right thing and ask you do so also.

Thank you for your consideration and recall also, that during those horrific days, our country promised to ‘Never Forget’… we haven’t and hope you haven’t either.

  • R. 847 (111th): James Zadroga 9/11 Health and Compensation Act of 2010
  • World Trade Center Health Program participants by Congressional District CDC/NIOSH November 2014
  • World Trade Center Health Program – Annual Statistics as of 9/30/2014
  • NYCPBA The Chief, December 3, 2010
  • 9/11 Rescue Workers and Friends Forum – Roll of Honor and Remembrance


The Story the Media Don’t Tell…

I write with regards to various media articles published on 14th January 2015 referring to Chronic Fatigue Syndrome and exercise. Before you decide not to read the rest of this blog, I urge to change your mind and read the real story about Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) because there is more than one side to the story. I am aware the printed articles stemmed from a press release from the Science and Media Center so I have no gripes with individual reporters, they are just doing their job.

Firstly, one mistake all media seem to make, not just one isolated journalist, is that Chronic Fatigue Syndrome is merely a case of “fatigue”. Please also bear in mind that the Daily Mail published this article back in 2010:–Ive-seen-ill-Lynn.html

The correct name for CFS is Myalgic Encephalomyelitis which is classed as a neurological disease by the World Health Organization ICD10 G:93 although many practitioners do not refer to this term.

The definition of fatigue: “Physical fatigue is the transient inability of a muscle to maintain optimal physical performance, and is made more severe by intense physical exercise” – from Wikipedia.

Kings College and the psychiatric lobby who support them have deliberately ignored current research on exercise and push the “fear avoidance” and “abnormal illness beliefs” rhetoric onto patients.

“The thought is that if we change the patient mental outlook and induce Graded Exercise Therapy (GET), we will cure the disease. It is distressing, to me and to my patients, those doctors are still following this destructive approach of labelling patients as psychiatric. ..Let me be emphatic, this is a physical disease. (Derek Enlander)

For many years now, the rise of prominent British psychiatrists Professors Simon Wessely, Peter White, Michael Sharpe and their European counterparts have had their opinions hold sway over an illness that is not even within their education remit. Diagnostic uncertainty has led to a circle of doctors who believe M.E is psychosomatic. Just because the NHS in the UK, has not developed proper testing or will not pay for the more expensive tests that can show up the underlying possible causes of M.E , it is extremely dangerous to then make the jump to say that patients should be considered as either having psychological difficulties or an adjustment disorder.
On the basis of these minimal criteria, anyone newly ill with M.E, going to an uninformed clinician is likely to be given a somatoform misinterpretation or be referred down a psychiatric pathway, away from the truth of their physical disease and exposed to potentially abusive treatments that deny their physical reality. (Michael Evison)

Many neurologists I have come across do not understand M.E as a distinct disease let alone believe it is a neurological condition as defined by the World Health Organization.

So deeming it not a real disease, the doctor has no other choice but to diagnose the neurological symptoms as a “functional disorder” or “functional somatic syndrome” which in reality couldn’t be further from the truth. The patient KNOWS they are sick but the medical profession thinks they are bringing it on by themselves.

Much is now known about M.E that these theories should no longer hold sway but sadly they do. Autopsies on various patients have shown inflammation in the dorsal root ganglia (spinal cord) and severe viruses in the brain. [1]

The problem is that in the United Kingdom, for example, there is not one specialist unit or consultant who deals with the very severe end of the spectrum of the illness. Doctors come across these patients who are underweight, paralysed, and mute, often tube fed and are aghast. Since they believe M.E is psychosomatic, instead of going to read published papers proving WHY the patient is sick, they assume the patient is making themselves sick and calls in liaison psychiatry. Why else would a patient be in hospital? M.E doesn’t make you sick now, come on? Patients are woken up in the middle of the night, the lights blared in their faces and made to get up and turn the light on to end the torturous pain it causes. Of course the patient can’t move. I’ve witnessed one young lady having a seizure and left on the floor in a pool of her own urine. The nurse was heard to say “you can change this behaviour, you can get up if you want to”. Such abuse of patients’ needs to end yet it is happening every day. Of all the cases like this I have heard – 99% of them were given a clean bill of mental health – no mental illness or issues reported.

Patient Testimonies:

I participated in Graded Exercise therapy via the <name of a ME/CFS specialist unit>.  This lead to a relapse, at home, and made me unable to sit upright for 1 year due to pressure in my head, and chest pain. I then relapsed and ended up in my local NHS Hospital in a cardiac care unit.”

I worked with a physiotherapist, who also had no experience of M.E. I began to seriously deteriorate, and 4 months in, suffered a major relapse. I had a kind of undiagnosed ‘stroke’, collapsed, and became incapable of looking after myself. When I went to the hospital I could walk 100 yd., feed, wash and dress myself. When I left I could not weight bear at all, had no leg muscles to speak of, and needed two people to transfer me on and off the toilet and in and out of bed. I had little use of my hands and was totally bed bound. I could not tolerate sitting upright against the pillows, conversation was beyond me, and I could barely manage to feed myself by picking up food in my hands — cutlery was out of the question. Nine years later I have improved, but I’m still bed bound.”

My understanding is that GET for CFS was originally created for a patient group who were alleged to have a ‘functional’ (i.e. psychological) illness founded on symptom-focusing, maladaptive avoidance of exercise, and deconditioning etc. So, allegedly, there was no biomedical illness to treat, but it was simply maladaptive behaviour/cognition leading to exercise intolerance and deconditioning.

The theory behind the therapy was that patients were supposed to be introduced to exercise in a steady and progressive incremental fashion, and that fluctuating symptoms were to be ignored: If the therapist made allowances for fluctuating symptoms, then they would be complicit in, and encouraging, the patient’s maladaptive behaviour, helping to validate the patients false illness beliefs and therefore the therapist would be helping to propagate the illness further. The therapist was not permitted to take into account the fluctuating nature of the symptoms. Awareness of symptoms was absolutely discouraged and fluctuating levels of symptoms were disregarded. Steady incremental increases in exercise were prescribed, regardless of symptoms.

But times have changed.

Professor Ian Lipkin, the world’s top virology expert and the man who discovered the SARS and West Nile Virus is now heavily invested in M.E research.

“There is no question in my mind that this is a physical disorder. The fact that we haven‘t been smart enough or invested enough in it to sort that, doesn’t mean that this is anything else.” (Professor Ian Lipkin)

With regards to the PACE trial of which you report, of the 3158 patients screened for eligibility for the trial from secondary fatigue clinics 1011 did not meet the inclusion criteria, the Oxford criteria. These criteria exclude those with neurological signs and symptoms so by definition this trial had nothing to do with myalgic encephalomyelitis (ME) as classified by WHO.[2]

The sentence continues by stating that the PACE Trial studied: “CFS defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Oxford criteria)”.

This is exactly what the ME/CFS community has been saying from the outset, namely that the PACE Trial was not studying those with ME so what was the point?

GET and CBT produced a change in patient’s perceptions and beliefs about their disability but not the reality of their disability…

Patients recruited into the study displayed horrendous levels of disability both when measured subjectively (SF-36) and scientifically (distance walked in 6 minutes)

CBT was no better at improving the distance walked in 6 min than doing nothing at all ( standard medical care) GET produced an increase in distance walked in 6 minutes of 35 metres compared to doing nothing at all. The difference is statistically significant but clinically and practically insignificant. 27% of the GET data remains unpublished.

A recent study compiled by Norwegian CFS Experts stated

“One of the most misconceived treatments recommended by the medical profession is graded exercise therapy, yet 79% of the participants experience deterioration as a result.

It stands to reason that with such limited energy to expend, using too much on exercise leaves woefully little, if any, energy for tasks of survival such as fixing meals, eating, paying bills, and bathing.” [3]

Patients in the PACE trial who received only Specialist Medical Care showed some improvement in all areas (more than the authors had anticipated). In fact, that improvement was generally greater than the extra improvement added on by giving the patients about 12 sessions of GET or CBT (which was much less of an improvement than the authors had anticipated). The level of Specialist Medical Care experienced by the patients in the PACE study is not normally provided at ME centres.

When normal people go walking or bicycling or jogging, it is called “aerobic exercise” because while their body is exercising, it’s using normal amounts of oxygen from air with carbon dioxide being expelled through their lungs.  If you do aerobic exercise regularly, it is good for you.  You get stronger and can go longer times or distances.  For a normal person, aerobic metabolism can be measured with heart rate:  (220 – your age) times 60% for the lower bound, (220 – your age) times 80% for the upper bound. [4]

If your heart rate exceeds the upper bound, you’re no longer operating in aerobic metabolism – your body will shift into what is called anaerobic exercise.

Weightlifting is an example of anaerobic exercise – you go past the point where the muscles can get enough oxygen from the lungs, and they start breaking down muscle to get it.  That’s okay – the muscle rebuilds stronger.  But if you have to give the muscles a two-day rest, so in training, you either alternate working on upper body one day and lower body the next, or do weightlifting every other day.

If you push harder than that – even as an athlete – if you go too far with the supposedly aerobic exercise that your body switches into anaerobic, or do anaerobic exercises (like weightlifting) too frequently, the body starts living in anaerobic metabolism, and that is bad, because breaking down too many proteins this way poisons the body.  If you don’t have the good sense to stop, your body does – eventually it will MAKE you rest.

A gung-ho young athlete who is improperly trained can screw himself up with too much anaerobic exercise, and then his/her body will just refuse to keep going – for up to 3 weeks.  That is called “over-training syndrome.”

Professional and collegiate trainers keep close tabs on their athletes because of this.

The following is also taken from Mary Schweizer, M.E/CFS patient, blogger and PHD: For some reason patients with M.E/CFS’s bodies shift into anaerobic metabolism (generally anything that sends our heart rates over 100) too soon.  In my case, just walking does it when I’m sick.  So you could say that our bodies are responding to “normal” activities as if we were athletes pushing too hard, that is, to a certain degree we are perpetually in the midst of “overtraining syndrome.”

Researchers use the VO2 MAX test (or CPET – Cardio-Pulmonary Exercise Testing) to measure this. [5]

People with a bad heart have the same problem, and again they turn to the VO2 MAX stress test to measure it.

A recent set of studies* have found that those of us who are REALLY sick score badly on just one day of exercise – which then makes you wonder about the over-prevalence of heart attacks among us.  So a score in the danger range (that would be me off Ampligen) should be taken seriously.

Most patients in this study are not going to score THAT low – they will score low-normal.  The problem is, so do couch potatoes.

The amazing thing Staci Stevens and Chris Snell* found was that high-functioning patients may score the same as deconditioned controls (the afore-mentioned couch potatoes) in one day of exercise – but on the SECOND day, the controls’ scores don’t change, whereas the patients’ scores plummet IN HALF.

Which makes sense if you have a good understanding of this disease.  But is really quite an astonishing finding for outsiders.

AND it is the best argument we have with which to make the case that graded exercise programs can hurt patients.  Can make them worse.  In some cases, can leave them paralyzed (something no one in government wants to talk about).

I am happy to be interviewed if you are willing to show another side to M.E/CFS

Yours respectfully

Gabi Lewis

Neuroimmune Alliance






The Case of Karina Hansen

I am writing with regards to a very serious and urgent situation happening in Denmark, a repetition of the Justina Pelletier case but worse, as this case has support across Europe by a group of so called prominent psychiatrists. It is the incarceration of a gravely sick young woman, Karina Hansen, who suffers from a serious physical disease, being held in a secure unit against her will. I would like to say that this case is one of its kind, an isolated incident, perhaps a medical misunderstanding, but that sadly is not the case.

Both the APA (American Psychiatric Association) and the broader psychiatric profession, are currently indulging in a seriously unjustified power grab, and they and their claims are in desperate need of much closer and tougher (and ongoing) external scrutiny then they have been subject to date. [1]

Diagnosed with M.E after contracting an Epstein Barr infection at the age of 16, Danish citizen, 25 year old Karina Hansen is like many people across the world coping with severe M.E. Before February 12th this year, she was being cared for at home by her parents who follow the advice given by the ME experts and her GP about her well being and treatment. She has been diagnosed with M.E by at least four doctors. She has tried a Graded Exercise treatment programme in the past but it exacerbated her symptoms to such an extent that she had to stop.

This is a sad echo of Sophia Mirza who died in 2005:-

The following information was supplied by Mrs Criona Wilson, mother of Sophia Mirza, on 24 January 2011:

“The 2nd person, a woman aged 32, (Sophia Mirza) was reported to have refused to eat and drink. She was supposed to have refused to see a doctor.” Both of these statements are incorrect.

“The doctors had treated Sophia, who had severe M.E, as being mentally ill, despite the fact that The World Health Organisation states that it is a physical disease. They forcibly sectioned her in a mental hospital. Having been released from there by a tribunal, her doctor removed her from that practice. The doctor in the second practice told me that M.E was a mental illness and that she let patients ‘get on with it’. Sophia was terrified of calling on that doctor, as previously it had been made clear to her that she could, once again, be ‘sectioned’. Because of her severe symptoms she was unable to eat or drink, save for a minute amount. After she died the doctor refused to visit to confirm Sophia’s death. Apparently they too had removed Sophia from their practice, four months previously and without our knowledge. There was no help for Sophia.

“Sophia had to suffer in unbearable agony and die alone. To infer that it was Sophia’s ‘free choice’ is not true. Being frightened of the doctor and being unable to eat or drink are totally different from refusing to see the doctor and refusing to eat.”

Críona Wilson (Sophia Mirza’s mother) [2]

On Feb 12th 2013, 5 policemen from Holstebro county, Denmark, came to Karina’s house and forcibly removed her from her bed. There were also 2 doctors, a locksmith and 2 social workers present.

Karina called for her mother’s help, but her mother was blocked by the police from aiding her. Karina used her mobile phone for the first time in years to call her mother, her father, her cousin and her sister, Janni. Karina is so ill that she can usually only speak in one or two word sentences, but during her removal she managed to call her father and say: “Help Dad, in my room”, and to her sister: “Help, Janni, I don’t know where they are taking me”. Karina’s mother could not answer her phone because she was surrounded by policemen.

Karina was then driven to a hospital in an ambulance. Her parents were not told where Karina was being taken or what reason they had for taking her. No paperwork was given to her parents. Later that day, they got a phone call and were told that Karina was at Hammel Neurocenter and that someone would call them every day at 10 a.m. to tell them how Karina was doing. They were also told that no one could visit Karina for 14 days.

On the morning of Feb. 13th, Karina managed to call her mother from her mobile phone. She said: “How can I get out of here? I can’t take this”. (”Hvordan kan jeg komme væk herfra? Jeg kan ikke klare det.”) Then the connection was cut.

A few days later, Karina’s parents got a letter from a psychiatrist, Nils Balle Christensen (NBC), which said he would be in charge of Karina’s treatment at Hammel Neurocenter. He also wrote that because “of her condition”, Karina was not allowed visitors for 14 days. That ban on visitors was later extended to three weeks because NBC was on vacation.

Nils Balle Christensen works at The Research Clinic for Functional Disorders and Psychosomatics. He and his boss, psychiatrist Per Fink, believe that M.E is a functional disorder. In Denmark, a functional disorder is understood to be a psychosomatic illness. The treatments the clinic recommends are: exercise, (GET), cognitive behavioral therapy (CBT) and anti-depressants. The psychiatrists at this clinic have no experience with severely-ill M.E patients and we fear that Karina is being treated incorrectly and that their mistreatment of her will lead to a severe and permanent worsening of her condition.

Karina’s parents have not seen their daughter since Feb. 12th

Karina’s parents and sister were at the Neurocenter on April 1st to try to visit Karina, but the parents were not allowed to see her. Karina’s sister, Janni, who is a nurse, was allowed to see Karina for a few minutes. A staff member followed Janni into the room. Janni said that Karina was extremely pale, was not able to talk, and did not show signs she recognized Janni. Janni often saw Karina when she was at home as she helped their mother care for Karina. In Janni’s, opinion, Karina’s condition is worse now than before she was hospitalized.

Why was Karina forcibly removed?

Karina’s parents and lawyer have still not received any official paperwork from any government body or doctor about the reason for Karina’s removal.  They have not received a treatment plan or copies of Karina’s journals. No charges have been made against her parents. This case has never been heard by a court. Karina’s parents do not know when/if they will be allowed to see her or when/if Karina will be allowed to come home. Karina’s parents and her lawyer have power of attorney for Karina, but this is being ignored. The regional state administrations for Mid-Jutland (Statsforvaltningen Midtjylland) are trying to appoint someone from their office as a guardian for Karina.

The only information the family receives about Karina comes from a head doctor from Hammel Neurocenter, Jens Gyring (JG). He now calls Karina’s father twice a week and tells him how Karina is. But the parents have a hard time trusting what is being said because they get conflicting information. NBC says Karina is improving every day, but JG says there is no change. Her sister thinks Karina is worse. JG says he is taking all of his orders about Karina’s care from NBC and that the treatment given is a rehabilitation program.

There are many unanswered questions, such as:

Which government body gave the order to remove Karina from her home and which doctor signed it?

What law was used to remove Karina?

Why are the parents and the lawyer not allowed to see any paperwork about the case?

Why are the parents not allowed to visit?  Are there any charges made against the parents?  Karina’s mother was paid by the county to take care of Karina and there was never any report of neglect. After Karina was taken, her mother was fired from her job on the grounds that the job was no longer needed. [3]

Since I have been working as a patient advocate for neurological diseases, I have witnessed the shocking abuse of a group of very sick and disabled people just like Karina Hansen. I have worked on two cases preventing the sectioning of a patient.

The situation in Denmark does not only affect the Hansen family; it is setting a precedent for the treatment of patients with Myalgic Encephalomyelitis and other related diseases and this needs to stop. I am calling to EVERYONE to support ANY action taken to the European Courts to pass legislation to prevent any patient with Myalgic Encephalomyelitis being sectioned under the mental health act or to have parental custody withdrawn to the state.

For many years now, the rise of prominent British psychiatrists Professors Simon Wessely, Peter White, Michael Sharpe and their European counterparts have had their opinions hold sway over an illness that is not even within their education remit. They are psychiatrists, not doctors. Diagnostic uncertainty has led to a circle of doctors who believe M.E is psychosomatic. Just because the NHS, in the UK, has not developed proper testing or will not pay for the more expensive tests that can show up the underlying possible causes of M.E , it is extremely dangerous to then make the jump to say that patients should be considered as either having psychological difficulties or an adjustment disorder.
On the basis of these minimal criteria, anyone newly ill with M.E, going to an uninformed clinician is likely to be given a somatoform misinterpretation or be referred down a psychiatric pathway, away from the truth of their physical disease and exposed to potentially abusive treatments that deny their physical reality. (Michael Evison)

Many neurologists I have come across do not understand M.E as a distinct disease let alone believe it is a neurological condition as defined by the World Health Organization.

So deeming it not a real disease, the doctor has no other choice but to diagnose the neurological symptoms as a “functional disorder” or “functional somatic syndrome” which in reality couldn’t be further from the truth. The patient KNOWS they are sick but the medical profession thinks they are bringing it on by themselves.

Much is now known about M.E that these theories should no longer hold sway but sadly they do. Autopsies on various patients have shown inflammation in the dorsal root ganglia (spinal cord) and severe viruses in the brain. [4]

The problem is that in the United Kingdom, for example, there is not one specialist unit or consultant who deals with the very severe end of the spectrum of the illness. Doctors come across these patients who are underweight, paralysed, mute, often tube fed and are aghast. Since they believe M.E is psychosomatic, instead of going to read published papers proving WHY the patient is sick, they assume the patient is making themselves sick and calls in liaison psychiatry. Why else would a patient be in hospital? M.E doesn’t make you sick now, come on? Patients are woken up in the middle of the night, the lights blared in their faces and made to get up and turn the light on to end the torturous pain it causes. Of course the patient can’t move. I’ve witnessed one young lady having a seizure and left on the floor in a pool of her own urine. The nurse was heard to say “you can change this behaviour, you can get up if you want to”. Such abuse of patients’ needs to end yet it is happening every day. Of all the cases like this I have heard – 99% of them were given a clean bill of mental health – no mental illness or issues reported.

The little boy in Germany who was exercised to his limit and died of a brain aneurysm, the woman in Holland who was refused screening for a lump because her doctors deemed her a hypochondriac and she died of breast cancer. These cases are REAL and are happening across Europe because no one is standing up for the patients.

M.E. is a disease, a disease that has been diagnosed for half a century and coded under neurological diseases in ICD-10, the World Health Organization’s current International Classification of Diseases (G93.3) – and it has been there for FORTY YEARS. [5]

The whole “CFS problem” might not have gotten away from us had the authorities followed the advice of specialists who strongly suggested, in 1987, that the 1980s outbreaks were due to M.E.

And M.E. would be a well-known disease today, as M.S. is, had it not been for a cult of British psychiatrists who claimed to follow the theories of “biopsychosocial” medicine (and whose answers fit well the needs of insurance companies and national health agencies to save money after the unexpected jolt of AIDS). [6]

“I have always despised the concept and name “chronic fatigue syndrome,” created in 1988 to describe a group of patients who had previously been thought to have “Chronic Epstein-Barr Virus.” “CFS” is not scientific. It is a social construct, a shape-shifter, something that gets redefined as those in a position of power, or society at large, wish to redefine it. But it had one advantage. It helped researchers study a group of patients who have been sick for decades with a mysterious, apparently contagious, disease. It helped researchers define subgroups of patients who exhibited similar patterns of biomarkers and pathogens. If CDC defines CFS so that those patients are no longer considered to have the disease, then what can we say they have? And what is left that can be called “CFS”? “Funtional Disorders”, “Functional Somatic Syndromes?” [7]

Some medical historians consider neurasthenia to be the diagnostic predecessor of Chronic Fatigue Syndrome (CFS).  The following commentary on neurasthenia is a section from a book entitled, “A Handbook of Practical Treatment” edited by John H. Musser, M.D. and O. A.  Kelly, M.D. which was published in 1912.  The first sentence sets the tone for the whole discussion and provides a link to modern CFS research: “When we come to study the symptoms of neurasthenia, we find that they are essentially those of chronic fatigue.” [8]

Simon Wessely in particular liked the term but in choosing the term neurasthenia, Wessely referenced not Freud but a New York physician named Beard who coined the term “neurasthenia” in 1869. Beard’s book, “American Nervousness”, is well-known among women’s studies professors for advancing the theory that girls who were allowed to study science and math in high school would end up with either a shriveled uterus (his version of “hysteria”), or struggle with a life-long “nervous condition” (neurasthenia). Beard openly wondered whether allowing girls to attend high school would result in the death of the “American race”: The “Celtic race” (Irish immigrants) did not permit their daughters a secondary education, and they enjoyed large families as opposed to the smaller numbers of children born to the middle class of the “American race”.

“Beard and Mitchell have returned to obscurity, but their disease [i.e. neurasthenia] is back with a vengeance. My local bookshop has just given “ME” (myalgic encephalomyelitis) the final seal of approval, its own shelf, a necessary manoeuvre since five books on the subject appeared in as many week, and there was no space left between meditation and menopause… all the ME books draw on immunology, virology, allergy, and AIDS where needed (which, in the case of AIDS, should be never)…A little more psychology and a little less T-cells would be welcome” .What your patients may be reading Wessely S BMJ 1989:298:1532-1533. [9]

I have to say I never thought I would see that book cited as a reputable source by a contemporary scholar, but both Wessely and the late Stephen Straus of NIH used it frequently.

“In England, the insistence that CFS is really neurasthenia has led to cruel results, with women thrown into mental hospitals against their will. CBT (to cure the patient of her “inappropriate illness beliefs”) and GET (to get her back into shape after she has allowed herself to become deconditioned) are the only treatments recommended by British public health.”

The result is that patients with the most severe cases of this disease are forced into hiding, bereft of all medical care whatsoever.

M.E. would never be linked to the mysterious illness of the late 1980s as a possible biomedical explanation except in reverse. British psychiatrists eagerly grabbed the name “chronic fatigue syndrome” to portray M.E. as a psychogenic illness, “neurasthenia” (formerly known as “the vapors”). According to the British psychiatrists (Simon Wessely, Peter White, Michael Sharpe, Trudy Chalder, among others), patients with CFS had allowed themselves to become deconditioned because of “inappropriate illness beliefs.” A course of “cognitive behaviour therapy” (CBT), to teach the patient she wasn’t really sick at all, followed by “graded exercise therapy” (GET), to get her back into shape and on the job, was all that was needed.

British psychiatrists used a definition that omitted the sickest patients, excluded anyone with a physically diagnosable condition, and included patients with depression and anxiety disorders. Nothing could be further from the Fukuda definition – yet even today, because they say it is “CFS,” the media and many medical experts assume it is the same thing.

Now back to Karina.

This consulting doctor, LG, called Karina’s GP on May 1st and told her that a psychiatrist in Copenhagen – who had never seen Karina – concluded from his information that Karina must be in a “lunatic-like state” and should be committed immediately. The GP did not want to do this; she wrote that there should be an evaluation to indicate if this was necessary. The GP warned the parents about the contents of the call from the Board of Health’s consulting doctor.
I want to make it clear: this circle of psychiatrists DO NOT BELIEVE IN ILLNESS.

Neurological diseases are a complicated area that psychiatry has decided to wander into over the past twenty years or so creating a friction between those who genuinely can diagnose proper neurological conditions and those who believe only in “neuropsychiatry”.

Thirty years ago, M.E was considered a form of hysteria, the term “neurasthenia” was used to describe a condition that doctors primarily thought existed in the mind. Psychiatrists went on to develop the terms “functional disorder” or “conversion disorder”.

The tide is turning against the old school of thought but a group of somehow influential Danish psychiatrists including Karina’s doctors are trying to reclassify entire illnesses, including ME, irritable bowel syndrome, pelvic pain, post pregnancy pain, chronic whiplash pain, the list goes on, as a new invention called “Bodily Distress Disorder” which is incredibly worrying and Karina is their new guinea pig to experiment their theories on.

The Bodily Distress definition was introduced in 2010 by a Danish psychiatrist, Professor. Per Fink who heads The Research Clinic for Functional Disorders and Psychosomatics in Aarhus. As far as he is concerned, functional disorders are psychosomatic (in the mind) and patients (including those with M.E) are treated with antidepressant medication. M.E is not the only illness PER FINK wants to classify. Anyone working in gynaecology or gastroenterology needs to be very concerned.

Per Fink wants “One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders, as representing “body distress” instead of “well-recognized illness.”
The man is completely deluded and crazy yet somehow he has the ear of the Government. His theories are completely washed away by medical science.


These psychiatrists have support from the likes of Professor Peter White and Francis Creed who have prominent positions within Government advisory roles in the United Kingdom. Things could start getting a whole lot worse for many patients.

Take the case of Justina Pellitier in the United States. Justina was diagnosed with Mitochondrial Disease but doctors at Boston Children’s Hospital decided to override this and diagnose her with somataform disorder.

Now that the tragic abduction of Justina Pelletier by Boston Children’s Hospital has been resolved after a national outcry, a bipartisan group of Congressional representatives are introducing new legislation to prevent the kind of medical abuses that led to Justina’s forced confinement for more than 16 months. Justina’s situation is not unique, but representative of a larger problem with Child Protection Services and hospitals all across the U.S. that use the foster care system to legally abduct children for medical research. [10]

I call upon everyone who reads this letter to send it en mass to your MP, your GP to your local newspaper, to anyone and everyone. If we don’t fight back, then we will see a complete collapse in the way neurological diseases and women in general are treated by the medical profession.

The Danish State believe Per Fink’s “version” of M.E, not the official WHO classification which has resulted in a serious breach of human rights.

Do not let the rest of Europe follow, please support Karina Hansen.

Kind Regards

Gabi Lewis










[10] .


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,

“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.


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.” (

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:

For more information on my work please follow me on Twitter @ActionNowGal and see my website

Thank you for reading.  


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