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Lost in Translation - The ME-Polio Connection and the Dangers of Exercise

by Nancy Blake(more info)

listed in cfs me, originally published in issue 228 - February 2016

Polio:

'During an epidemic [of polio] physical activity should be avoided entirely in minor illnesses.  The highly dangerous belief that malaise and other vague symptoms should be 'worked off' by exercise requires correction.'[1]

“Complete physical rest in bed from the onset of the pre-paralytic stage greatly reduces the danger of severe paralysis.  Severe physical activity at this stage is almost suicidal, while the continuance of even average physical activity is dangerous”.[1]

 

ME Plague, Ramsays and Plague

 

Ramsay, on ME:

‘The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.’[2]

Psychiatric view, used to support CBT and GET as treatments:

“9.15 We emphasise the vast literature on the adverse effects of rest, that can be found in literatures ranging from physiology, sports science, aeronautics, neurology, ergonomics, psychology and general medicine.105,208-211 We believe that rest per se is contraindicated in CFS. If it has a role, it is only as one component of a strategy for a short period, measured in days or weeks.”[3]

“Gradual, planned, mutually agreed and monitored increase in exercise forms the cornerstone of treatment. Excessive rest and the pattern of alternating over- and under-activity are counterproductive.”[3]

Exertion Worsens Symptoms, Rest Diminishes Symptoms

In recent months I have spent increasing time following Facebook posts in a range of ME, CFS and Fibromyalgia groups, as well as a group for Functional Neurological Disorders…the label used by some neurologists for their CFS patients.[4)

There is so much evidence across the board, of patients experiencing 'flare-ups' after exertion, though some don't really make the connection.  Patients know they need rest, many, with a degree of resentment, follow regimes of pacing, but I have yet to see real acknowledgement of the acute importance of rest from the inception of the illness, or the potential for complete rest to lead to a significant degree of recovery.

My own experience of this illness, over nearly thirty years. is that the link between exertion and getting worse has been consistent from the very beginning.  Equally important is that periods of rest cause my symptoms to diminish. 

These effects are proportionate in intensity and duration. In the course of a day, a bit too much normal activity around the house can very quickly lead to mental confusion, which half an hour of lying down will dispel.  After a few weeks of riding my bike, (following advice which I knew I shouldn’t have), the initial, exercise-induced euphoria was replaced by a relapse which took a year of rest to overcome. 

Tragically, the story of many, if not most of the severely or very severely ill is of a strong- willed  individual determined to fight through their symptoms, often having been given well- intentioned advice to exercise, but too often having been told that their financial support requires them to cooperate with a programme of Cognitive Behaviour Therapy and Graded Exercise Therapy, whose initial moderate illness transformed into a state of constant, intractable pain, complete incapacity, and, I only recently learned, intermittent paralysis.[5, 6, 7]

When I was first ill, I felt in my bones a deep terror of having it labelled psychiatric and being forced to run up and down.  I knew nothing, at that time, of the horrors of severe ME, but somehow, my body did, and warned me.  Fortunately, I was surrounded by sympathy, belief, and physical help, both at home and at work.  With absolutely no clue as to why I woke up every day barely unable to walk to the loo, or why this strange state of muscle failure just went on and on, I was both incredulous and quite scared.  Information obtained from the local medical school library seemed to indicate either multiple sclerosis, lupus, or canine distemper (!).  (In retrospect, these were all pretty close to the mark...autoimmune disorders, plus, in canine distemper, a viral disease which, if survived, often left neurological damage.)

 

Greg Crowhurst Severe ME

History of this Illness Resembles War Between Rival Factions

The history of this illness resembles that of a war between rival factions.  It is a war with thousands of casualties, including those who have died.  It is a war in which the most accurate, dispassionate, objective account sounds like improbably exaggerated hyperbole. The symptoms of severe and very severe  ME are from the seventh circle of hell.[6: 16-18]  The cruelty experienced daily from disbelieving family, friends, doctors and public and private agencies is often extreme.  Acknowledged even by psychiatrists as an illness in which exertion “exacerbates symptoms”, those same psychiatrists present as “evidence based” treatments a process of changing the “false belief that one has a physical illness” followed by a program of exercise. The fact that this does result in increasing severity is ascribed to “resistance”, and such outcomes are ignored, distorted or suppressed.[8, 9]

At its simplest, it is a war between those, beginning with Dr Melvin A Ramsay, who studied those who became ill during the 1955 Royal Free Hospital epidemic, and concluded that it was a serious, disabling physical illness, probably of viral origin, in which the most effective treatment was complete bed rest from the inception,[2] and psychiatrists, beginning with the Beard and McEvedy paper published in 1970,[10] which concluded that this illness was a form of “mass hysteria” and which led to the view that the best treatment was to disabuse patients of their “false belief” that they had a serious physical illness which was made worse by exertion,  and then to encourage (or coerce) them into exercise. This rather slight and insignificant piece of research, based on a few hours of study of Ramsay’s 15-year-old-notes, including the notes of patients whom he had himself dismissed as hysterical may have had little effect.  However somehow it came to the attention of the editors of TIME, the most influential news journal of the period.  A brief article, under the heading of ‘Behavior’ compared this outbreak of ‘mass hysteria’ to medieval dancing manias, ridiculed the efforts of the doctors doing medical research, and asserted that the final proof that it was just hysteria was that most of the sufferers were female.  With a circulation of 4,000,000 in the early 1970s, this 500 or so words defined the public, medical, and political response to this illness for at least a generation.[28]

In 1986, when I became ill, and finally, thanks to the article in The Observer of 6 June of that year,[11] had been able to give a name to my disease, the advice from the ME Association was to keep activity level below two thirds of one’s perceived energy level; the heartening prognosis that if one had been ill for two years, there was a 50% probability of being fully recovered within six years.  (In this era of a popular belief that exercise is good for everyone's health, and when one has a cold, or flu, only wimps go to bed...the right thing is to take something to suppress the symptoms and carry on, we are also told that no one recovers from ME -  what a coincidence.)

Bed-rest has become a lost medical recommendation, even regarded as dangerous.  Hospital rehabilitation practices urge a resumption of activity as soon as possible after childbirth, operations, including amputations, and recovery from infectious diseases.

This idea has been promoted after research on the effect of weightlessness for astronauts found them rapidly deconditioned after a period of bed rest.  These consequences have been hyped up, and used by psychiatrists to justify failure to advocate bed rest for patients with ME.[12] 

Evidence of Supportive Effects of Bed-Rest

However, a 2003 NASA review of research papers which included information about recovery from the effects of bed-rest induced deconditioning notes that many physiological measurements are not affected at all, most that are affected recover within a few days, some take a few weeks, and only a very few minor changes in immune responses take as long as six months to recover, even when bed rest has been protracted for as long as two months.
The article also affirms:
“Prolonged assumption of the horizontal body position reduces musculo-skeletal and orthostatic stress, facilitates cerebral perfusion, and usually lowers total body energy utilization in the sick and injured so that metabolic reserves utilized for maintaining upright posture and muscular activity can be directed to those needed by the immune system for recovery.” [29]

Yet guidelines for the treatment of ME/CFS warn against excessive rest, and describe the goal of treatment to be an increase in activity.[12)

My Own Illness Chronology

Back to my own story.  My experience of illness (now nearly thirty years) includes a sense that exertion somehow stimulates whatever pathogen is latent in my body into greater activity, and that rest - conservation of muscular exertion - seems to give my immune system a chance to ward it off.  Many people who have ME find themselves vulnerable to multiple infections, as though their immune system has lost the ability to fight other conditions.  My experience has been the opposite...when there is 'something going around', be it a cold, cough, flu or 'diarrhoea and sickness', I have, with some exceptions, either not got it at all, or only succumbed to a mild version.  My sense of this is that while my immune system is in a permanent state of trying to fight an enemy it can't find, it is giving very short shrift  to anything else that comes down the line.

Professionally, I was extremely fortunate.  At the time I became ill, I had had, for four years, my 'dream job', setting up and running a Social Services Day Centre for people with mental health problems.  In retrospect, one of the pressures which probably contributed to my becoming ill was that my approach - to use the principles of community and group therapy to help our clients get better - was in complete opposition to the Social Services intention to use the facility as a kind of activity-based dumping ground for long-term hospital patients now being discharged into 'care-in-the-community'.  The concept of mentally ill people 'getting better' was not part of their plan.  Four years of pursuing my objectives in the face of opposition from above had taken its toll. (It was some satisfaction that while largely unsupported by the Social Services Department, our work with our clients had gained the respect of many of the local, initially skeptical psychiatrists.)

After three months of being off sick, my only attempt to return to work was a disaster- I couldn't even sit up long enough to stay at a meeting.  However, thanks to an influential friend, I was offered the opportunity to fill in for the maternity leave of a Principal Officer Health. This post involved going to meetings and writing reports, at a higher salary level, and including an allowance for travel and telephone.  (Remember, this was the 80s.). My son and his friends, whom I had taught to drive, were victims of the high-levels of unemployment in Hull at the time, so were free to drive me and wheelchair me to meetings and then home again to bed, where I could spend days organizing things over the phone and writing up reports whenever I felt well enough, which was often in the early hours.  The Finance Officer, also a friend, provided me with an outdated PC, and I managed to master Wordstar enough to be able to write reports lying down with the keyboard on my stomach and the monitor beside me.  I learned that as long as I kept my head supported (many undignified postures required when chairs were low-backed) I could just about keep track of what was going on in a meeting.  (I fill in these details as a reminder that I was very ill, and that these are the kinds of help we need if we are to be able to manage any job.)

After the woman I was replacing returned part-time, I was offered the opportunity to use half of my time as the Department's first Information and Policy Officer for HIV. This opened up access to medical journals writing about retroviruses - viruses which have the ability to reprogram certain cells to reproduce themselves instead of performing the cell's normal function.  In the case of HIV, the reprogrammed cells are those of the immune system.  When stimulated, by any type of infection, to perform their usual function of reproducing in huge numbers in order to attack the invading pathogen, the infected cells reproduce in massive numbers to increase the spread of HIV, eventually destroying the immune system entirely.  Then death occurred because any of a number of pathogens which the immune system normally wards off had now become incurable and eventually fatal.

Persistence of Many Unknowns and Conflicting Guidelines

So back to ME, our mysterious illness in which muscular exertion seems to stimulate some pathogen which remains latent as long as we rest.  Is there some similar mechanism going on here?  Even the psychiatrists concede that exertion “exacerbates symptoms”; even the treatment protocols for GET note that “setbacks” can occur, after which the patient may not return to their former level of function. (NICE Guidelines for CFS/ME, 1.7.3.1 “After a setback/relapse, healthcare professionals should review the person's activity levels to re-establish a baseline and review the management plan. A gradual return, when possible, to previous exercise and functional routines should be encouraged. Activity should be increased gradually”.  Note “when possible”.  This is an admission that return to the previous level of function may not be possible.  The list of diagnostic features includes “physical or mental exertion makes symptoms worse”. Yet the goal of management, and of the treatment protocols, including for CBT, is “increase in activity”, while advice to rest completely is on the list of “things not to do”,  reiterated throughout the advice on management.)  The fact that this covert admission that their 'treatment' may result in a worsening of symptoms from which the patient  may not recover doesn't result in a withdrawal of that treatment is one of the hard-to-believe objective facts in this history.

Some researchers are now exploring the potential role of retroviruses in this illness, so my speculations based on my subjective experience plus my (limited) information about retroviruses may already be supported by research.

My passionate conviction throughout the course of this illness and my ongoing study of its history, its research, and the accounts of patients is that it is essential to treat this as a medical emergency in which complete rest is the most basic requirement.  And Graded Exercise, with the extreme damage that it can cause, should, in my view, be recognized as culpable medical abuse. 

Breaking News -  Change in the Law Regarding Informed Consent

The following links describe a legal case and change in the law re informed consent to medical treatment which seems to open up the possibility of legal redress against being prescribed GET, also against being denied disability payments or threatened with being sectioned.

http://forums.phoenixrising.me/index.php?threads/the-significance-to-me-cfs-of-the-landmark-change-to-the-uk-law-on-consent.41989/

www.me-ireland.com/bogus.htm

Medical Research Deficits: Still Lack Correct Nomenclature / Classification of Illness

I have been consistent in supporting a return to Ramsay's original observations and treatment recommendations, regarding that as even more important than a return to his name for ME, and I worry that the battle over the term 'myalgic encephalitis' has overshadowed concern with his recommendation for complete rest from the earliest signs of this illness.  As a patient community, we seem to be prepared to do battle for the name, but where is the battle for complete rest as an immediate and urgent medical response?

We rightly insist on medical research, we rightly demand diagnosis and some kind of medical treatment from our doctors....we expend our precious energy and resources in relentless pursuit of an as-yet non-existent cure, and no one tells us, or our doctors, that we need to stay in bed, not keep throwing ourselves around in this futile search, seeing doctor after doctor, going for appointments in which we are demeaned and insulted, or offered treatments which are guaranteed to make us worse, which in themselves are depriving us of our best chance for improvement, if not recovery.

I have supported the insistence on post exertional “malaise”, “neuroimmune exhaustion”, and “exacerbation of symptoms” as an essential diagnostic feature for the illness which Ramsay ultimately named “myalgic encephalomyelitis”.  I have argued that it is the psychiatrists who have the “false beliefs”, that we do have a serious physical illness, in which exercise does harm us.  I have quoted Ramsay's heartfelt concern for the housewife and mother, who rarely is able to get the rest she would need in order to have any chance of recovery.  I have seen this echoed in brave and heart-rending Facebook accounts of women struggling to meet standards they expect of themselves, feeling guilty because they are unable to carry out the family responsibilities which define them as good wives and mothers, making themselves more ill in the process of attempting to do so, too often while being attacked by those same family members with accusations of laziness and hypochondria.

While out in the battlefield, doctors appealing for help from the US Centre for Disease Control (CDC) in the face of outbreaks of a serious disabling illness of a type they hadn't seen before in both Nevada and New York State were rewarded by a belated and cursory investigation, consisting of looking at the notes of some of the Nevada patients and concluding that this was a not very important illness which people should be discouraged from taking seriously by giving it the name Chronic Fatigue Syndrome.  No attempt was made to inform either of the two groups that the other existed.  (Recently, I have learned that there were, in fact, three such groups.)  When guidelines were developed which made it possible to confuse the symptoms of this illness with those of major depression, the asserted link with psychiatric conditions was strengthened, while public perception of sufferers as lazy hypochondriacs was enhanced by the media label 'yuppie flu'.  (Apparently the effort involved in becoming successful, wealthy professionals brought on an illness which, according to the psychiatric view, is due to the “secondary gains” of the “sick role”. As this illness actually deprived the sufferer from experiencing any of the benefits of wealth, and often involved losing it, along with their jobs, their homes, and their families, it is difficult to identify what, exactly, these “secondary gains” might be.)   There is an undated letter from the head of the CDC to the doctor who developed the guidelines, congratulating him on how, by leading to a focus on the study of “fatigue” as a research topic, the concept of ME as a separate disease entity could be “evaporated”, an outcome he regarded as desirable. 

This was followed by a scandal in which research funding intended for CFS was diverted into other channels.[13, 14]

Here in the UK, the only funding allocated by the MRC for ME/CFS was awarded for a huge trial, comparing a range of treatments.  Led by psychiatrists, the results were used to justify promoting Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) as evidence-based, “safe and effective” treatments for ME/CFS; these were incorporated into both the NICE Guidelines and the US CDC Toolkit for the treatment of CFS. (Over a period of years, ME had disappeared altogether from the CDC's information about what had now become CFS.  This means that in recent years, the diagnostic label “myalgic encephalomyelitis”  (ME) no longer exists in the US, and patients given the label CFS may not even know about ME.)

The power and influence of the psychiatric lobby is such that when a million dollars was invested by the US National Institute of Health to develop diagnostic criteria for this illness, I assumed that the exercise was intended simply to gain some official rubber-stamp of the psychiatric view.  This opinion was shared by most of the medical researchers and advocacy groups.  Perfectly appropriate criteria, the Canadian Consensus Criteria.[15]  and the further  version, the International Consensus Criteria[16] had already been developed by the medical researchers, who wrote a letter of protest, which was ignored.  Only one or two reluctantly agreed to participate in the IOM process at all.  The NIH, rather than consult medical experts, as one might think appropriate in developing diagnostic criteria, seemed to be behaving as though they were selecting a jury....eliminating anyone with prior knowledge or who had already expressed a view.  ('Curiouser and curiouser', as Alice might say).  But, if the intention had been to gain support for the psychiatric view, the funders certainly didn't get what they paid for.

The report (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining a Disease), stated emphatically that this was a disease, not a psychiatric disorder, in which exertion of any type “may adversely affect many organ systems in the body”.  The first recommendation was to get rid of the name “Chronic Fatigue Syndrome”, replacing it with the term “Systemic Exertion Intolerance Disease”, intended to reflect that this is a disease in which exertion of any kind can do systemic harm, with long term effects on the patients. 

Predictably, the usual media denigration left off the word “disease” and proclaimed that this was a new term for lazy hypochondriacs.  Most patients seem to have responded with despair, at yet another misleading and potentially dismissive label.  However it seems that the psychiatric lobby have realized that if accepted, this report has the potential to dismantle their empire, and are insisting that “Chronic Fatigue Syndrome” will do just fine, thank you very much.[30]

The Polio - ME Connection

I knew that one of the earliest outbreaks of this illness was in Los Angeles, in 1932, and that the illness was at first considered to be polio.  However, it differed in that while polio was so often a disease in childhood or adolescents, most of the victims of this outbreak were hospital staff, many nurses and some doctors and other staff.  This was also a feature of the 1955 outbreak at the Royal Free Hospital in London.[17] When victims didn't go on to suffer paralysis, and as far as I know, there were no fatalities, it was called “atypical polio”, and later “benign myalgic encephalopathy” (or encephalomyelitis).  When it became apparent that patients often went on to suffer years of disabling illness, the term “benign” was dropped.  (One of the most notable aspects of ME/CFS is the degree of hostility which patients experience, and which seems deeply embedded in society.  I speculate that this may have originated when sufferers were suspected  of having simulated having polio, and  were considered to have had their deception  exposed by their failure to develop the permanent paralysis associated with polio.)

The simple equation: polio equals paralysis, no paralysis equals not polio, turns out to be not quite that straightforward.  Many, if not most people carry a range of enteroviruses, which  includes the three types of polio virus. Most carriers of the polio virus do not contract polio, and of these, many experience nothing more than the first stage, an apparently innocuous viral illness, respiratory or gastric, from which they recover.  A minority go on to the further stages of polio, when the virus replicates and attacks the central nervous system.  A minority of these go on to develop paralyses, from which they may experience partial or complete recovery.[1, 7] But, until I read Severe ME, the recently published book by Greg Crowhurst, I did not know that recurring paralyses, lasting from minutes to months, or longer, are a relatively common symptom in severe ME.[6]

I have long felt that “fatigue” is a very inaccurate term for what happens to us in this disease.  Progressive muscle failure is much more accurate, and failure upon exertion seems to progress to damage: paralysis as a further progression seems logical.  But it isn't just something going on in muscles - ME is characterized by a range of symptoms, and the IOM description - harm “to many organ systems in the body” is clearly going on, as well as the nerve damage evidenced by what happens to our muscles.  Some pathogen must be involved in producing all this: a pathogen stimulated by exertion, made dormant by rest, and against which, like with the polio viruses, varying degrees of immune function can make some headway if we can allow that to take place.[7), 26]

With this in mind, I began to research “atypical polio”and came immediately to the fact that in 1932, the very first name given to ME  was “atypical polio”.  Apparently, my eureka moment, seeing this connection as a new insight, simply is reinventing the wheel.[7]

But the really interesting article surfaced when I searched for the effect of exercise in polio. This brought me to a March 19, 1949 article, published in the BMJ by W Ritchie Russell, Neurologist to the Radcliffe Infirmary, Oxford, entitled Paralytic Poliomyelitis, the Early Symptoms and the Effect of Physical Activity on the Course of the Disease.[1]

Dr Russell explains that there are three stages of polio: the initial infection, from which many recover, the stage in which the virus is rapidly replicating and infecting the central nervous system, and the stage at which paralysis occurs.  The study on which he is reporting is on the relationship between physical exertion during this second stage and paralysis.  He concluded that the connections were significant; that paralysis often occurred in the specific muscles which had been used.  He concluded that it was essential to be completely inactive during this stage, that people with apparently mild viral symptoms should rest completely until fully recovered, and even that major sporting competitions should be avoided during the times of year when polio was most prevalent.

Here is some of what he had to say:

“During an epidemic physical activity should be avoided entirely in minor illnesses.  The highly dangerous belief that malaise and other vague symptoms should be 'worked off' by exercise requires correction.”

“Complete physical rest in bed from the onset of the pre-paralytic stage greatly reduces the danger of severe paralysis.  Severe physical activity at this stage is almost suicidal, while the continuance of even average physical activity is dangerous”.

And he adds: 

“The question naturally arises why certain patients continue average or severe activities after the onset of symptoms.  As has already been emphasized, these symptoms may be quite slight, but there is certainly no evidence to suggest that those patients destined for severe paralysis have less disturbing pre-paralytic symptoms than have the slight cases. The question cannot be answered with great confidence, but my impression is that often those who continue physical activity after the symptoms begin either are relatively insensitive to pain or have more than the average courage or incentive to continue work or play in spite of illness.  There is certainly no doubt that many of those most severely crippled have a remarkable strength of character and great powers of endurance.”

The description of the character of those “most severely crippled” sounds to me like a description of so, so many of our severely ill patients.  ME/CFS punishes the strongest, most determined among us...you can read it in every Facebook group...and in [5].

We must get Dr Russell's message, and its relevance to ME/CFS, as recognized by Ramsay, Acheson, and many other enlightened ME doctors, across and implemented in the routine care of those with ME.  We're in the grip of an epidemic as potentially damaging in the long term as polio. People with mild illnesses need in my view to revert the traditional practice of going to bed when ill and staying in bed until better. People who fail to recover from a mild viral illness should have the possibility of ME taken into account immediately, not after six months, and be prescribed bed rest immediately, and for a significant period.  In Ramsay's day, and in his care, patients did get better.  Who gets better now? 

Two postscripts:   

While writing this article, I was waiting to receive two books, both referring to ME/CFS as a modern plague. 

The first is by Jane Colby, the indomitable spirit behind the Tymes Trust.  Published in 1996, ME - The New Plague goes into detail about the polio connection, in an easy-to-read style. 

Plague, published in 2014 by Kent Heckenlively and Judy Mikovits,[18] provides us with an impassioned and extremely detailed account of the science, the personal interactions, and the various conferences and informal meetings relevant to the polio connection, the retroviral connection, and the history of Mikovits’ own rather stellar career as a cancer researcher and subsequent discoverer of the XMRV virus in ME patients, with all the controversy that aroused, along with her much publicized entanglement with the downfall of the Whittemores.  Clearly partisan, this book provides enough detailed factual information to allow the reader to make their own judgements. 

In my own efforts to understand much of the medical research, here is the book that teaches me what we need to understand what the researchers are doing.  In my efforts to understand where the various 'big names' in ME/CFS research are actually up to, this book tells me what meetings they went to and what they said and did in these meetings.

For a serious student of ME/CFS, Malcolm Hooper's lengthy and detailed accounts, such as Magical Medicine - Making an Illness Disappear, on the ME Action UK website, [31] and Les Simpson's book-within-a book, Ramsay's Disease - Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of Chronic Fatigue Syndrome (CFS) by Les Simpson and myself,[19] give the history in both the UK and the US up to the production of the International Consensus Criteria.  But for a thorough account of medical developments and medical politics up to the recent past, Plague[18] has answered nearly all of my questions. 

Since its publication, we have had two major reports from the US NIH, with mixed reviews.  Within the last half of 2015, thanks to the journalist David Tuller[32] and the eminent psychologist, James Coyne, there are increasing demands that the authors of the PACE Trial release their raw data, for it to be retracted, and for the treatment recommendations for CBT and GET to be withdrawn.  This movement seems to be gaining impetus as I write (December, 2015). [33]

References

1.         W Ritchie Russell, N. t. t. R. I. O. Paralytic Poliomyelitis, the Early Symptoms and the Effect of Physical Activity On the Course of the Disease. BMJ. 1949.

2.         Ramsay, M. Myalgic Encephalomyelitis: A Baffling Syndrome With a Tragic Aftermath. www.name-us.org/Definitions Pages/DefRamsay.htm  (accessed September 6, 2012).

3.         Royal Colleges of Physicians, Psychiatrists and General Practitioners. Chronic Fatigue Syndrome, Supports psychiatric view of CFS/ME. 1996.

4.         Stone, J.; Reuber, M.; Carson, A. Functional symptoms in neurology: mimics and chameleons. Practical Neurology: 104-113, Chameleons: Features that put you wrongly off a diagnosis: 'nice people get functional symptoms too' No prior history, no recent stress, came on after minor injury/pathological disease, assuming some structural abnormalities are significant. 2013.

5.         Invest in ME. Lost Voices from a hidden illness , 2nd ed.; Wild Conversations Press. Accounts from sufferers of severe ME. 2010.

6.         Crowhurst, G. Severe ME, 2nd ed.; Stonebird. Research and detailed information re Severe ME. 2013.

7.         Colby, J. ME The New Plague; First and Best in Education Ltd.: Peterborough UK.  Polio connection, info and advice re children with ME. 1996.

8.         White PD, G. K. . &. G. P. T. Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychological Medicine 2013.

9.         Courtney, T. Queens refuse access to the PACE Trial raw data. www.meadvocacy.blogspot.co.uk  (accessed March 1, 2013).

10.       McEvedy, CBA. Royal Free epidemic of 1955; a reconsideration. British Medical Journal, Using notes including those of patients already dismissed as 'hysterical', concludes ME is a form of 'mass hysteria'. This view dominates medical and popular opinion right up to the present. 1970.

11.       Finlay, S. An illness doctors don't recognise. The Observer.  The article that explained ME so I finally knew what my illness was. No definitive diagnostic test, no treatment, but you could get better if you rested. June 1, 1986.

12.       Members of the Committee. The Joint Report of the Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996 /CR54; Royal Commission; Royal College of Physicians, 1996.

13.       Gibbs, J. I. G. Audit of Costs Charged to the Chronic Fatigue Syndrome Program at the Centers for Disease Control and Prevention, 1998. http://oig.hhs.gov/oas/reports/region4/49804226.pdf

14.       Rehmeyer, J. Guest Post, pt. 1: Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome? www.lastwordonnothing.com/2014/04/23/guest-post-pt-1-why-are-doctors-skeptical-unhelpful-about-chronic-fatigue-syndrome/

guest-post-pt-2-why-are-doctors-skeptical-unhelpful-about-chronic-fatigue-syndrome/ (accessed December 29, 2015). www.lastwordonnothing.com/2014/04/24/guest-post-pt-2-why-are-doctors-skeptical-unhelpful-about-chronic-fatigue-syndrome/

15.       Canadian Expert Consensus Panel. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome 11 (1): 7-116, Most widely recognised by ME/CFS community; authors went on to produce the 2011 International Consensus Guidelines. 2003.

16.       Carruthers, B. v. d. S. M. International Consensus Criteria for ME (Myalgic Encephalomyelitis). Journal of Internal Medicine. Recommends mmediate diagnosis, requires PENE (post exertional neuroimmune exhaustion) for diagnosis. 2011.

17.       Ramsay, A. M. Myalgic Encephalomyelitis and Postviral Fatigue States, the Saga of Royal Free disease, 2nd ed.; The ME Association. Reprinted 2005; p 1, Muscle fatigability with long recovery period, circulatory impairment, cerebral dysfunction, variability of symptoms, chronicity. 1988.

18.       Heckenlively, K. J.; Mikovits, J. P. D. Plague; Skyhorse Publishing: New York, New York, USA. Details of viral rersearc/political/personal events re XMRV. 2014.

19.       Simpson, L. a. B. N. Ramsay's Disease - ME (Myalgic Encephalomyelitis) and the Unfortunate Creation of CFS; Kindle Direct Publishing, 2012.

20.       Campling, F.; Sharpe, M. Chronic Fatigue Syndrome (CFS/ME) The Facts; Oxford University Press, Inc: New York, New York, USA.  Many useful suggestions, promotes self-management and CBT/GET, no acknowledgement of failure to recover, or seriousness. 2000.

21.       Carin Willén, M. R. G. G. M. P. Pain, physical activity, and disability in individuals with late effects of polio. Archives of Physical Medicine and Rehabilitation. 79(8): 915-919, Recommendation for limiting exertion in post-polio. 1998.

22.       Stone, J. Functional symptoms in neurology, the bare essentials. Neurology in Practice 2009, 9, 179-189, Assumes chronic fatigue syndrome to be a functional disorder.

23.       Harvey SB, W. M. W. S. H. M. Etiology of chronic fatigue syndrome: testing popular hypotheses using a national birth cohort study. Psychosomatic Medicine. 70(4): 488-495, Exercise in childhood, adulthood, and continuing when already ill leads to CFS. 2008.

24.       Harvey SB, W. S. Chronic fatigue syndrome: identifying zebras amongst the horses. BMC Medicine  7(58): Fig 1: their model of CFS 'Maintaining factors - behavioral/ deconditioning' illustrates the Wessely School beliefs. 2009.

25.       Joyce JHMWS. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. Q J Med 90: 223-233, Because long-term severely ill patients often belonged to a self-help group and believed their illness to be organic, these are labelled 'predictors' of long-term illness. This becomes the justification for using CBT to change this belief. 1997.

26.       Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness; National Institutes of Health. Recommends getting rid of CFS as a category, renaming illness Systemic Exertion Intolerance Disease. 2015.

27.       Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness Report Guide for Clinicians; Guide for Clinicians; National Institute for Health. Guide to the IOM ME/CFS Report for doctors. 2015.

28.       TIME.  ‘Behavior: Mass Hysteria.  26 January 1970.

29.       http://ntrs.nasa.gov/archive/nasa/casi.ntrs.nasa.gov/20030052739.pdf

30.       White, Peter D. Chronic Fatigue Syndrome:  Right Name, Real Treatments, Rheumatology, 12 March, 2015.

31.       Hooper, Malcolm, Magical Medicine:  Making an Illness Disappear, ME Action UK,www.meactionuk.org.uk

32.       Tuller, David,  TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study,  published in four sections on the Virology Blog, which is maintained by Columbia University virologist, Vincent Ranciello.

33.       Cohen, Jon, Criticism mounts of a long-controversial chronic fatigue study, Science, (Journal of the American Academy of Science), 27 October 2015.

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About Nancy Blake

Nancy Blake BA CQSW, has worked in mental health settings since 1971. She served as Chair of the ANLP PCS (now the NLPtCA), on a National Working Party developing postgraduate standards for Psychotherapy (NVQ Level 5), and contributed to the document which led to NLP being accepted as a therapeutic modality by the European Association for Psychotherapy.  She has presented workshops at UKCP Professional Conferences on an NLP approach to working with victims of abuse, and in psychoneuroimmunology.  Recovering from ME since 1986, she is the co-author, with Dr Leslie O Simpson, of the book Ramsay’s Disease (ME) about ME, as well as A Beginner's Guide to ME / CFS (ME/CFS Beginner's Guides). Both titles are available both in paperback and Kindle formats on Amazon. Nancy was previously enrolled at Lancaster University in a PhD doctoral program; her thesis topic was Conflicting Paradigms of ME/CFS and how the Psychiatric Paradigm creates its Influence in contrast to the Medical Model. She may be contacted via alternatives@alternatives.karoo.co.uk  http://nancyblakealternatives.com/ Her books are available to purchase at www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

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