In the following discourse I shall endeavour to shed light on how, and perhaps why, a serious disease has not been taken seriously for nearly half a century. The disease is Myalgic Encephalomyelitis. Many people think it is the same thing as Chronic Fatigue Syndrome but I shall also explain why I do not believe this is the case. To achieve these goals I will give a brief history of major events in the history of this disease.

Much will be referenced but not everything because I have learned a great deal from documentaries, conversations with many sufferers and their carers, talks and much reading for my own interest without thought for writing such an article as this. I have no medical training and this is purely a layman’s account and conclusions.
Let us begin in 1955 when Paralytic Polio [1] was a much feared disease which attacks the nervous system and leaves survivors with paralysed limbs; the death rate was about 10% [i] [ii].
Staff at the Royal Free Hospital in London were becoming sick [iii] and admitted on to the wards with what was thought initially to be polio, but the virus wasn’t found. Eventually 292 staff, and 21 patients, were affected. The hospital had to close for three months.
However, there were many observable signs that indicated that there was infection and the nervous system was under attack. There were tender swollen lymph nodes, low grade temperatures unusual reflex responses, nystagmus [2] and muscle weakness. A core feature was, and is, extreme fatigueability of both muscle and brain from even mild activity.
Other common symptoms of M.E. are muscle pains, muscle twitches, tics, pins and needles not due to an obvious cause and lasting a long time, confusion, memory problems. There are very severe headaches. Stimuli such as sound, light, and touch can be overwhelming and painful. Also, there are paradoxically mild fevers, low temperatures, and sopping icy sweats.
There is insomnia or sleeping constantly but the patient never feels refreshed. There is dizziness, fainting, seizures. There are many other symptoms. Fortunately nobody has all of them, and symptoms and their severity may change throughout the day and over time. It can be unbearable and, for many, never ending.
Fatigueability is much more profound and disabling than fatigue or tiredness. Think of a battery that runs down very fast and takes ages to recharge and consider what that’s like when your body and brain are as useless as a dim torch that quickly goes out on a moonless night in unknown terrain.

Dr Melvin Ramsay, a tenacious and compassionate man, was the consultant for infectious diseases at the Royal Free in 1955 and spent the rest of his life until 1990 studying this horrific illness. He clearly described it in various Journals including the BMJ and the Lancet [iv] and over the years adopting the name of Benign [3] Myalgic Encephalomyelitis.
Although, as he said, there is nothing benign about it, so latterly dropped that word. Myalgic refers to muscle pain whilst Encephalomyelitis is inflammation of the brain and central nervous system. The name fits. Brain scans [v] [vi], post mortems [vii] [viii] and even in vitro muscle biopsy [ix] studies among many other research findings prove it.
Melvin Ramsay studied many similar outbreaks in other parts of the world from Iceland to S. Africa, and West Kilbride to South Australia. The Coxsackie viruses belong to the polio family. They were the triggers for outbreaks in Scotland and other parts of the world. Coxsackie is, however, not the only virus type to result in this devastating disease and many others have been regarded as triggers, such as Ross River Virus in Australia.
An outbreak in Incline Village in Nevada, beginning in 1984, seemed to be due to the Epstein Barr virus which causes mononucleosis (glandular fever) and so that apparently new chronic profoundly debilitating disease was briefly nicknamed chrono-mono.
It is not hard to imagine that if you were working at the Royal Free in 1955 and felt ill you’d be scared that this was the beginning of polio or this polio-like illness. Anxiety would have been a normal reaction and indeed about 10% of those who became ill were not confirmed cases of Myalgic Encephalomyelitis (M.E.) [x], ie they did not fit the recognisable clinical picture.

In 1969 The World Health Organisation classified Benign Myalgic Encephalomyelitis as a disease of the central nervous system, and since 1990 as “Other diseases Of The Brain” under the sub-heading Post Viral Fatigue Syndrome, i.e. it has been internationally accepted as a neurological disease stemming from a virus.

Remember, the only benign thing about it is it that it doesn’t usually kill, though for many, if it did it might have been a blessing as the most common cause of death for M.E. patients is suicide.  Now, keep in mind that diseases cannot be classified under more than one rubric [xi] [4].

Also in 1969, a student psychiatrist Colin McEvedy, studying for his PhD on his chosen topic of mass hysteria, decided to re-visit the 1955 Royal Free outbreak. He looked at the case notes but did not interview a single person with a conclusive diagnosis of M.E., despite the fact that there were many for him to chose from and some were still ill. He concluded that it was an outbreak of mass hysteria among nurses living in a Nurses Home. He and his supervising Psychiatrist, A W Beard, published a paper in 1970 [xii] in which it says “The data which support this hypothesis are the high attack rate in females compared with males”
Yes, it was easy to imagine the anxiety! But how could the conclusion of mass hysteria be in anyway scientific? As staff in a hospital are predominantly women is that not a more reasonable explanation for the high attack rate in women. Why did they not revisit the outbreak amongst 130 male soldiers, or 800 male soldiers in Switzerland in 1937 and 1939 [xiii] ?
It was hard to explain the radiographers, doctors or patients, or spouses who were affected but not living in the Nurses Home; hard to find the many in the community who also contracted the disease but did not work in the hospital; hard to explain outbreaks of this disease in all male environments. So he and his supervisor ignored all that. He ignored the fact that the Royal Free disease did not meet any of the other criterion for Mass Hysteria – for example it is a short lived phenomenon measured in hours – whereas 14 years later some patients were still too disabled to work.
Also, ignored were the objective signs which would never be associated with hysteria such as swollen lymph nodes and fever. Ignored too was the fact that the rare cases of mass hysteria tend to be among school pupils when one vomits and it triggers others. The gag reflex occurs when one sees another vomit so it would make sense that this is an evolutionary protective reaction from when members of a tribe ate something toxic rather than being a hysterical reaction.
This article should never have got past peer review. Why did the medical press accept its speculation and the mass media delight in broadcasting it? Could it possibly have something to do with these being male dominated occupations? It was easy for doctors to believe its conclusions rather than puzzle over the complicated clinical histories or dwell on the devastation to patients’ lives.
Consequently, they started to tell M.E. patients that there is nothing wrong with them. Family and friends often followed their example, resulting in snide remarks, callousness, shunning and, heartbreakingly, family break-ups. Often patients who challenged the opinion that it ‘is all in their minds’ were then: believed to be in denial, difficult or depressed; labelled ‘troublesome’; sent to psychiatrists; and in some cases even removed from their GP’s list.
Many parents have been accused of causing their child’s condition and some children were removed from home and put in psychiatric hospitals where their ‘treatment’ was nothing short of torture xiv. Some doctors who have stood up for their patients against this way of thinking have been reported, spuriously and not by any patients, to the GMC and had sanctions imposed until their case has been properly heard and they have then been exonerated.
Returning to Nevada and the outbreak of an M.E-like illness in1984, the epidemic in Incline Village was overwhelming the young internists [5], Doctors Paul Cheney and Dan Peterson. By May 1985 they had over two hundred patients affected with this puzzling disease. Though it started with a flu-like illness it resulted in chronic profound fatigue bordering on paralysis made worse by effort, severe neurological problems, severe headaches, swollen lymph nodes and many other symptoms.
Not everyone had exactly the same set of symptoms but all had neurological symptoms. Initially they suspected Epstein Barr but quickly concluded it was not the actual cause of the illness but something new. Eventually, they turned to the Centre For Disease Control (CDC) for help. It is possible that the epidemiologists had read Beard and McEvedy’s paper because neither of the two who came to investigate took it seriously.
They looked at case notes and found that all the patients complained of tiredness. They whittled them down to 15 cases who fitted their limited understanding and decided that it was not an epidemic. The junior epidemiologist was Gary Holmes. Back at CDC the patients became the butt of jokes. Meanwhile, there were less well known outbreaks all over the US. [xv]
How can you teach when you don’t remember words; or pilot a plane when you can’t concentrate or calculate anymore; how can you live when pain is a constant companion unresponsive to painkillers and the world of thought is a misty expanse of uncertainty, and your body so leaden that the cost in energy to get up to make a cuppa, never mind a meal, is more than you have in the bank?
Also in the 1980s, there was a great outcry about the HIV/AIDS epidemic. Billions of £s internationally, was poured into research and now neither of these diagnoses lead inevitably to death. Many of us can remember images of the stick thin, very sickly patients that Princess Diana visited. However, doctors who treated both AIDS patients and M.E. patients said of these two diseases they would rather have AIDS and that the quality of life for ME patients was much worse, except in the very final stages of AIDS [xvi].

In 1988 The Centre for Disease Control’s case definition labelled this complex multisystem extremely debilitating disease the ‘Chronic Fatigue Syndrome’. The lead author was Gary Homes. Although Neuropsychologic complaints were included in the ‘minor symptom’ list they were not essential. Further, when the CDC updated their criteria in 1994, known as the Fuduka Criteria, it became an even looser definition with no neurological symptoms listed. These Criteria are used for research into the disease.
Following this, a cadre of Psychiatrists in the UK decided that, to their minds, this hysterical/ psychosomatic / somatoform/medically unexplained symptoms (MUS) condition6 was perpetuated by ‘wrong illness beliefs’ which led to inactivity and, therefore, so they opined, that the patients were simply deconditioned. This cadre concluded that Cognitive Behavioural Therapy (CBT) to change their beliefs and some graded exercise therapy (GET) to strengthen their muscles and they’d be cured.
Remember a cardinal feature of this illness is muscle fatigueability. Think along the lines of metal fatigue where if you continue to ‘exercise’ the metal it breaks. GET is liable to further damage M.E. patients. Melvin Ramsay was clear from his clinical observations that those who did best were those who rested, especially at the outset, not those forced to exercise. He noticed that those who continued to struggle on became the worst affected.
A group of these psychiatrists wrote a new definition known as the Oxford criteriaxvii published in Feb 1991. Though others are listed the only essential symptom is fatigue. Mental illnesses such as depression and anxiety, which also cause fatigue, are not excluded. Note not fatigueability or the profound fatigue described by Melvin Ramsay but fatigue or, as most people, including medics, would think ‘tiredness’.
Tiredness or even fatigue is caused by many things including most illnesses but it is not a disease and so neither is the Oxford Criteria of CFS that of a disease. By sleight of hand a symptom is turned into a disease in the minds of most people. Then using patients who are ‘tired’, albeit abnormally tired, in trials for CBT and GET they then proclaim they can cure M.E.
The Oxford criteria is for ‘Chronic Fatigue Syndrome’, but then that term becomes used interchangeably with M.E. despite the fact that M.E. is neurological but CFS requires no neurological symptoms. Following that, and the involvement of this disproportionately influential psychiatric group, the NICE7 Guidelines for diagnosis and treatment are for “CFS/ME” and not M.E. (note that CFS takes precedence). CFS is not a diagnosis of any disease, and ME is basically made to disappear. What fine Medical Magic.
How could this be? When they contacted the CDC the neurological symptoms were the most worrying symptoms for Drs Cheney & Peterson, and for their patients, and were also clearly described by Ramsay. When a patient is found sitting on the kerb outside their house but doesn’t know how to get home it is worrying. When an accountant or a maths teacher can no longer do simple arithmetic it is worrying. When patient IQs drop by 25 – 40 points it is worrying. These are clearly neurological symptoms. Yet these definitions which do not require neurological symptoms is to be used for research! Why has this come about?
Two sets of criteria by two very influential countries and M.E. is virtually made to disappear or is confused with other conditions. Interestingly one of the authors of the extraordinary loose Oxford criteria is also an author of the updated looser USA Fuduka criteria, which has been used internationally for research, and that person is a British Psychiatrist.

Research using these sets of criteria produce very inconsistent and confusing results. Thus to those of a certain mind-set it confirms that this is not a real physical illness.

So who benefits from such medical magic? Medical Insurance companies don’t pay out for such illnesses, whether for private consultations, tests and treatment or for retirement on the grounds of ill health. Governments’ agencies don’t pay sickness/disability benefits to patients who aren’t believed to be ill and can’t prove by tests that they are. Government research authorities do not need to spend resources on a non existent illness.
It is also convenient for such bodies that the patients are mostly too ill to campaign and are ridiculed and maligned when they do and that no famous faces like Elton John or Elizabeth Taylor will campaign for them, as happened with AIDS.

MRI scans of patients of Drs Peterson and Cheney showed punctate lesions in their brains as did Patients of British Neurologist Prof. Leslie Findley [xviii]. MS patients have larger elongated lesions but fewer of them. AIDS patients in the final stages who developed dementia had the same punctate lesions.
Now for some more medical magic. Fatigue Syndrome is listed under the Rubric of Psychiatric Disorders by W.H.O. at F48 under neurotic disorders, and then under Neurasthenia. It is easy to see how Fatigue Syndrome and Chronic Fatigues Syndrome become the same thing in the minds of medics and so a fundamentally neurological disorder is transmogrified into a psychiatric one.
A sick psychiatrists’ trick and Myalgic Encephalomyelitis has been made to disappear again but reformed as a psychiatric illness. Indeed there was a long but successful battle, due to the one rubric rule, to have the British Psychiatrists have CFS removed from their Manual of Psychiatric Diseases.
But why are these psychiatrists so determined to claim this illness? The UK cadre of Psychiatrists may really want to help their patients; and they may truly believe their theory is right; and it is possible they have never read any of the properly conducted research on ME; or fully examined a real ME patient.
However, you might like to know that at least three of the leaders of the UK cadre of psychiatrists some of whom instigated the very loose Oxford Criteria, are consultants for the medical insurance industry.
Two of them were consulted for the updated US criteria and one of them is listed as an author. Their leader is also a government consultant and has been knighted. You might like to know, they were very influential in the Medical Research Council which grants research funding. A grand total of £0.00 was spent on M.E. biomedical research in the UK, until a whopping £400,000 was allocated in 2012! [8]
You may also like to know they were extremely influential in writing the NICE guidelines for diagnosing and treating CFS/ME and which discourage more sophisticated medical tests such as brain scans and looking for viruses such as coxsackie. In effect they blindfolded many doctors to M.E. and it is made to disappear yet again.
Successful as these exemplars of their profession may be, their jiggery pokery and hocus pocus have caused a great deal of harm. Look behind the vanishing cabinet and there still stands Myalgic Encephalomyelitis, a neurological illness classified as such by WHO. An illness can only be classified under one Rubric! Don’t be misdirected: don’t be fooled by the jiggery pokery and hocus pocus.
Despite being starved of government research funding for over 3 decades real science and proper scientists are slowly uncovering the truth. The Americans are coming round to calling it M.E. and have now removed GET from the suggested treatments. I don’t believe CFS and M.E. are the same illness because I don’t believe any of the definitions/criteria for CFS9 are of any specific illness.
M. E. was the name given to a very clear neurological illness and illness pattern described by Dr Melvin Ramsay and many others such as Dr E D Acheson. But whatever the label and whatever the illness all patients deserve and need to be investigated for the cause of their illness and provided with the most appropriate treatment. The medical magic described above prevents that.

There is an award winning documentary, Unrest, about ME (CFS) which shows you what is normally unseen. If you get a chance to watch it take it. And take a tissue!

 

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Notes

[1] The polio vaccination program only began in 1956.
[2] Involuntary eye movement
[3] Medically benign means non fatal, however, we now know that M.E. can kill.
[4] Rubric is a Heading or Guiding Principle. Under WHO rules a disease can only have one classification. It will be under one Heading and then under subheadings. M.E. is classified under G 93.3
[5] I get the impression that an internist is more like the UK’s Consultant in General Medicine than a GP, but some, like these two, practice in the community like GPs do in the UK. Family Doctors have more training in paediatrics and obstetrics whilst Internists specialise in Adult Medicine and have more equipment in their consulting offices to carry out tests than a GP in the UK would.
[6] These psychiatrists change the name when too many patients realise what they mean.
[7] National Institute for Clinical (now Care) Excellence
[8] In 2009/10 the MRC spent £29m on HIV research. It is estimated that there are 2 ½ times as many people with ME/CFS, than HIV/AIDS in the UK. Since 2010 the MRC’s HIV/AIDS research funding is part of a budget for global health issues including malaria, poor child and maternal health, and mental health. In 2012 that budget was £41m No further funding has been given to M.E./CFS research since 2012.
[9] Since I began writing this CFS has been included with ME in the WHO Classification of Diseases newest version
 

References

[i] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/148141/Green-Book-Chapter-26-Polio-updated-18-January-2013.pdf
[ii] http://vk.ovg.ox.ac.uk/polio
[iii] Ramsay, Melvin MA MD Myalgic Encephalomyelitis and Post Viral Fatigue Syndrome: The Saga of the Royal Free Disease Reprinted by the ME Association in 2005
[iv] https://www.bmj.com/content/2/5050/895 also http://www.hfme.org/wramsay.htm
[v] http://www.positivehealth.com/article/cfs-me/management-and-treatment-of-me-part-I

Also if anyone wants to see one of the nurses affected in the Royal Free Outbreak she appears just after 4 mins in in this video

 
[vi] http://www.meresearch.org.uk/information/publications/structural-and-functional-neuroimaging/
[vii] http://www.stonebird.co.uk/hooper.html (see eighth paragraph under subheading ‘ME/CFS causes of death’)
[viii] http://www.meassociation.org.uk/research/current-research/pathology-of-cfs/
[ix] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0122982
[x] Op cit
[xi] https://www.nice.org.uk/guidance/cg53/documents/chronic-fatigue-syndrome-myalgic-encephalomyelitis-review-consultation-comments-table2 page 31
Andre L’Hours written statement (WHO HQ Geneva 23 Jan 2004)
https://en.wikipedia.org/wiki/Talk:Chronic_fatigue_syndrome/Archive_18#Dr._Robert_Jacob_(WHO)
“It is unfortunate that NICE uses a terminology that is not specific. CFS is a broad umbrella. This needs to be clarified. It is not possible to make a deduction from CFS. Volume I is the relevant volume for ME. ME is classified at G93.3 and is a specific disorder. The term CFS, covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD Index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. The Index (i.e. Volume II) cannot be taken as definitive. In its Guideline, NICE has used an ambiguous term. The WHO does not recognise the term `CFS/ME’ and refers to it as `unfortunate’.”
The statement above was made by Dr Robert Jakob, Medical Officer (ICD), Classifications, Terminologies and Standards at the WHO H/Q in Geneva on 4th February, 2009.
https://www.nice.org.uk/guidance/cg53/documents/chronic-fatigue-syndrome-myalgic-encephalomyelitis-review-consultation-comments-table2
[xii] Colin P. McEvedy and A. W. Beard The British Medical Journal Vol. 1, No. 5687 (Jan. 3, 1970), pp. 7-11
[xiii] http://me-pedia.org/wiki/List_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome_outbreaks
[xiv] http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm (Search for Eaon Proctor) and http://www.hfme.org/topicmeandchildren.htm (see under Jane Colby The New Plague)
[xv] Ostlers Web By Hillary Johnstone 1996 (2006) Authors Guild Backinprint edition
[xvi] https://thoughtsaboutme.com/quotes/
[xvii] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/
[xviii] Television Documentary 1998
 

Some other sources:

• Action for ME magazines and website
• Articles by Prof Malcolm Hooper and Margaret Williams now collated at http://www.margaretwilliams.me/
• Dr Sarah Myhill’s website and TV interviews
• Dr Nigel Speight – testimony, talks, interview, statements etc.
• ME Association magazines and website
• MERUK Magazines and website, and taking part in some of the research projects they funded
• Walker, Martin J Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome 2003
• To compare some of the definitions/criteria in one place see https://me-pedia.org/wiki/Special:Search?search=criteria&go=Try+exact+match