A brief sad history of ME/CFS

For more than two decades, a deliberate muddying of the diagnosis of a serious chronic neuro-immune disease has misdirected much research. The disease Myalgic Encephalomyelitis was renamed Chronic Fatigue Syndrome, by the Centre for Disease Control in the USA, in the late 80's.

Because the criteria for diagnosis of Myalgic Encephalomyelitis has been weakened to the point that the people diagnosed as could include those without neurological symptoms, because the criteria (CDC's Fukuda 1994(1) and worse, the 2005 revised version(2) and the British Oxford definition(3)) diagnosed as people who had unrelated illnesses, the common ground being chronic fatigue, the research could not and did not reliably study Myalgic Encephalomyelitis.

The fake diagnostic criteria mentioned above also deliberately proscribed the many tests that would allow for a positive diagnosis, rather than a diagnosis of exclusion.

Meanwhile, people who actually had myalgic encephalomyelitis were misunderstood, mistreated and marginalised.

This process of confusing a specific biological disease with the very common symptom of Chronic fFatigue began at about the time that the financial impact of another illness caused by a retrovirus, HIV/AIDS, was becoming clear. The patients with ME/CFS were not dying like flies, and their illness helped make them invisible, as most were housebound and unable to protest, impoverished by years of illness. The disease became a stigma, patients were assumed to be depressed and lazy, yet ironically and conversely they were also and at the same time accused of being type A personalities who had burned out.

Neither of these explanations were true, for those placed in the ME/CFS patient cohort who actually had Myalgic Encephalomyelitis by the Canadian Consensus Criteria4. These patients were suffering a neuro-immune disease caused by an unknown pathogen, perhaps viral, perhaps retroviral. It was a devastating disease, described by some patients as a living death. A percentage of patients were bed bound, tube fed, on morphine pumps and unable to tolerate light or noise. Many of the infected were teachers or medical professionals, and some families had two or more people who were ill with CCC ME (Canadian Consensus Criteria / Myalgic Encephalomyelitis).

The cost of treating these patients (there were more of them than in the HIV crowd) was something that governments were happy to avoid, dealing as they were already with HIV/AIDS, and helping to avoid tackling this illness head on created a career path for the unscrupulous, deluded and greedy.

Two and more decades on, private funding into ME/CFS by the parents of a young sufferer helped to refocus some (not all, more later) of the scientific community on seeking the true causation of CCC ME. The Whittemore Peterson Institute at last held out some hope, for people who had been seriously ill for decades. They published a study in Science in October 2009(5), showing by one method that 67% of those CCC ME patients tested had a retrovirus, Xenotropic Murine leukemia-virus Related Virus. A second testing method showed XMRV in 95% of the patient cohort.

Within weeks, another study was published in PlosOne(6, 7), after allowing 3 days for peer review. The WPI study was under peer review for six months. This new British study was commissioned by the notorious psychiatrist, Simon Wessely, who had managed, over the last couple of decades, to become the pundit on all things CFS. Here are some quotes from him:

Professor Wessely has said:
"In Britain, people with chronic fatigue think that if they do too much the virus that caused it is still there and will come back and make them worse. That is catastrophising the illness. They don't think like that in France and they don't have the same outcomes. It is how you respond to symptoms that determines the outcome."

"Were not going to go doing more and more tests to find out, well what was the virus, because frankly, even if we found it, theres nothing were going to do about it.

" What lies behind all this talk of viruses and immunity ?... In consequence, talk of viruses and the immune system is now deeply embedded in popular consciousness ... Viruses are an attribution free from blame ... there's no blame, no shame and no stigma ... and here is the virus research doctor himself to protect us from that shame... And what is it he delivers? Respect!"

"Many patients referred to a specialized hospital with chronic fatigue syndrome have embarked on a struggle. This may take the form of trying to find an acceptable diagnosis, or indeed, any diagnosis. One of the principal functions of therapy at this stage is to allow the patient to call a halt without loss of face. ..... [M.E. patients are in] a vicious circle of increasing avoidance, inactivity and fatigue....... "

"Most CFS patients fulfil diagnostic criteria for psychiatric disorder. Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. .... Do any of these symptoms possess diagnostic significance? The answer is basically negative... The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. 'the average doctor will see they are neurotic and he will often be disgusted with them.' "

"Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits, etc)"

The man's cruelty knows no bounds. It would not be that extreme to accuse him, and his American counterpart, Bill Reeves (of the CDC), of a human rights crime against a seriously ill group of patients.

Since the Imperial College/Wessely paper was published in PlosOne, there have been other negative studies, and other positive studies. All the negative studies have two things in common. They used the loosest definition of the disease, either the Oxford or the Amended Fuduka (CDC 2003), and they failed to use the methods that were used by the WPI, despite having been given access to the techniques, and positive control samples.

As someone said "They forgot to take the lens cap off the microscope"

The really sad thing about all this is that if good research had been allowed centre stage in the late 80's and early 90's, when Dr. Elaine DeFreitas(8) first found a retrovirus in CCC ME patients, and if related research had been given the backing that it warranted, then many many fewer people would now be infected with XMRV.

This gamma retrovirus, XMRV, was first found in cases of Prostate Cancer (>30%), and has also been found in other sarcomas and Autistic Spectrum Disorder patients. It is possible that this, or other retroviruses are responsible for causing Parkinsons Disease, Alzheimers, Multiple Sclerosis, and other brain and nervous system malfunctions.

A retrovirus is distinguished from other viruses by it's ability to insert genetic material into the host's DNA, effectively hijacking the host cells for its own ends. They are sneaky, lazy, and they make you ill. To date, we know of three exogenous human retroviruses: HIV, HTLV and XMRV. They all make people sick.

There is a lot of work to do yet before we discover the full impact of exogenous retroviruses on humans, but a great start has been made. And yet, in the UK, all public Medical Research Council funding for ME/CFS goes to psychological research.

When questioned why this is, the MRC say that "no applications of sufficient quality asking for funding for medical research into CFS have been submitted". This is patently untrue(9). Between 2002 and 2008 there were 33 applications for funding for biomedical research into CCC ME.

The truth is that the Department of Health, umbrella department of the MRC and the NHS, rely on Simon Wessely, Peter White, Trudy Chalder and other psychiatric types for advice, and this group have built an influential empire on muddying the definition and mistreating the patients with CCC ME.

They believe that exercise and CBT is all we need to get well. Currently, there is a study in process at Bristol University of the Lightning Process under Dr Esther Crawley(10). They are going to subject children, some of whom really will have CCC ME, to a positive thinking regime sold by a pyramid selling technique, and invented by Phil Parker, who is doing very nicely thank you. This cannot be said for those CCC ME patients who have been through this process. As with the NHS program of Graded Exercise Therapy, the course encourages patients to ignore the symptoms of their disease. If this was all in the mind, then yes, it may work. But for children with a serious neuro-immune disease, it can, and has aggravated symptoms to the point where they can no longer function independently at all, and are consigned bed, relying on others for all personal care.

Esther Crawley's study will include 90 children between the ages of 8 and 18. This is unethical, when there has yet to be a study of the Lightning Process in adults. The strange thing is, Phil Parker does not allow criticism of his results on his website (and there is criticism, oh yes(11)).

People do die of complications of CCC ME: of cancers, of heart disease, of suicide because they can't stand the pain any more. Here is a list in memorium. It is by no stretch of the imagination extensive, or comprehensive.

1/ http://www.annals.org/content/121/12/953.full?guid=on (Fukuda 1994)
2/ http://www.biomedcentral.com/1741-7015/3/19/ (Reeves 2005)
3/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf (The Oxford Definition)
4/ http://www.co-cure.org/ccpccd.pdf (Canadian Consensus Criteria)
5/ http://www.sciencemag.org/cgi/content/abstract/1179052 (WPI study, 10/09)

6/ http://www.bmj.com/cgi/content/full/340/feb25_1/c1099 (Wessely/McClure Imperial College XMRV study - I see no ships!)
7/ http://www.bmj.com/cgi/eletters/340/feb25_1/c1099#231969 (be sure to expand the comments section)

8/ http://www.ncf-net.org/forum/revelations.html (on the DeFreitas study,1991)

9/ http://www.meresearch.org.uk/information/publications/casetoanswer.html (MRC funding bias explored)

10/ http://www.bris.ac.uk/news/2010/6866.html (Bristol Lightning Process study)
11/ http://www.sayer.abel.co.uk/LP.html (criticism of the Lightning Process)


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