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:

http://www.dailymail.co.uk/health/article-1093016/Ive-seen-patients-paralysed-dying-Aids-victims-starving-children–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

[1] http://cfspatientadvocate.blogspot.co.uk/2014/04/ad-astra-per-aspera-dr-john-chias-ideas.html

[2] http://www.investinme.org/IIME%20Statement%202011-03-01.htm

[3] http://esme-eu.com/pacing/the-most-effective-rated-treatments-for-chronic-fatigue-syndrome-norwegian-article-article358-182.html.

[4] http://slightlyalive.blogspot.co.uk/2013_09_16_archive.html

[5] http://forums.phoenixrising.me/index.php?threads/repeat-test-reveals-dramatic-drop-in-me-cfs-exercise-capacity.24485/

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3 Comments (+add yours?)

  1. Merry Speece
    Jan 18, 2015 @ 21:59:09

    Thank you, Gabi Lewis, for your post. I have questions. Why do you say reporters are “just doing their job” by writing articles based on a press release from the SMC? Why do they feel obligated to respond to a SMC press release at all? And why would a good science reporter not look at the press release with a critical eye? Is a copy of the text of that press release available? How do you know that it was the SMC that contacted all these reporters? I assume that the SMC did do this, but I would like to know the source of your information. Thanks.

    Reply

  2. The Other Side Of The Stretcher
    Jan 19, 2015 @ 04:01:58

    Reblogged this on The Other Side Of The Stretcher and commented:
    What The Media Does Not Tell You!

    Reply

  3. tony
    Jan 22, 2015 @ 16:49:30

    This is brilliant and depressing at the same time..thank you so much for posting this I will try to send th his to my local health board my member of parliament,and g.p.

    Reply

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