"The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

Daisymay said:
My memory is that Strauss and co actually stated at the time that they went with the name CFS specifically because they didn't want to give the illness any validity as a physical disease, so it was a name to actively trivialise and done on purpose.
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I would be interested to know what was actually said but I find it hard to believe it was quite that.

I imagine that Strauss was saying that he did not want to give the illness the implication of some known physical mechanism, such as causation by a virus or presence of inflammation of neural tissue when no such physical mechanism was known. That seems to me entirely sound thinking and in line with what I put above - to be less misleading than 'ME'.

To me the value of CFS is to point out that we do not have evidence of the existence of some new specific mystery illness caused by some new specific mystery virus. And the fact that people like Hillary Johnson seem still to think that we do suggests that there is good reason to use the term. I prefer ME/CFS because it counterbalances with the implication that we are not just dealing with chronic fatigue but rather with a specific syndrome that is probably quite close to Ramsay's account of long term problems but has nothing much to do with the concept of ME generated to explain the acute illness at the RFH that was probably rather poorly documented and of relatively little relevance to most PWME these days..
 
My impression is that the author seems to believe that CFS is caused by an undiscovered AIDS-like virus. Maybe I'm just misunderstanding.

And then it's hinted that there is some establishment coverup. Again maybe I'm misunderstanding.

I can see why this narrative appears to patients who have genuinely been failed. It's also useful if you have a book you want to sell. The US have some good researchers and advocates but this does more harm than good.
 
https://publications.parliament.uk/pa/cm200607/cmselect/cmhealth/503/503we79.htm
3. Terminology is confusing but important: the term "ME/CFS" reflects the two interchangeable terms (myalgic encephalomyelitis and chronic fatigue syndrome) that are listed in the World Health Organisation's International Classification of Diseases where, since 1969, ME has been classified as a neurological (ie an "organic") disorder. However, certain UK psychiatrists and the Government bodies they advise use the term "CFS/ME"; on their own admission, they do so merely to placate patients by retaining the term "ME". Their recorded intention is to eradicate "ME" and to re-classify "CFS" as neurasthenia (a mental disorder). This has serious ramifications for patients, since mental disorders receive lower rates of State sickness benefits and are excluded from medical insurance cover.
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I recall that somewhere there is a record of some meeting minutes (I think) that covered preference for CFS/ME vs ME/CFS, as that gave better emphasis for their preferred CFS terminology. But cannot track it down/
 
Chris said:
These are Strauss' own words in a letter to Fukuda, for anyone here who would like to interpret them... Especially the "desirable outcome" part.
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That seems to me pretty reasonable, and consistent with what I had suggested, even if I think on balance it is either badly worded or wrong.

He was arguing against a 'discrete form of fatiguing illness' and in the sense that I understood the term ME I think at that time I have sympathy. ME was some speculative discrete illness defined by a physical mechanism linking a virus to the brain and it was fairly clear to virologists like my mother that the evidence wasn't there.

No doubt Strauss had his own view but he does not push it in that text. He just says idiopathic. He seems to miss the PEM side of things but if he was faced with a wide range of patients some of whom did not have PEM then that may have been a reasonable view.

Put differently, we now recognise that there is a discrete form of fatiguing illness with PEM but I am not sure that has much to do with the idea of ME that Johnson is perpetuating and Strauss was rightly trying to deflate.
 
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Rapid response by Derek Enlander to an article by Strauss in the BMJ (2002). I think Dr Enlander is now mostly retired but others might know more.


Caring for patients with chronic fatigue syndrome
BMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7330.124 (Published 19 January 2002)Cite this as: BMJ 2002;324:124

Rapid Response:
Strauss and the old ME / CFS credo at NIH
Sir, I am dismayed at the editorial of Steven Strauss and his current
knowledge of ME/ CFS. He promotes the thought again that this disease is
a shallow mainifestation of a patient's mind, and the only treatment
therefore is cognitive therapy, pacing and graded exercise. In fact
grading of exercise is very difficult, more often overexercise produces
relapse. He further shows his lack of knowledge by purveying the notion
that the disease is a 1980's invention. Ramsay's seminal work in the Royal
Free Hospital seemingly is unknown to him or is to be sloughed aside.

His position as chief of the Laboratory of Clinical Investigation,
National Institute of Allergy and Infectious Disease certainly was not
obvious in his thinking related to research approaches in this disease.

The NIH credo in ME/ CFS is not new but continues to be immersed in old
doctrine rather than new ideas.

Derek Enlander

1 Stephen E Straus BMJ 2002; 324: 124-125

2 Ramsay M The saga of the Royal Free Disease 1955 ME Assoc.
 
The letter from Straus is, of course, revealing, but it shows only reasons for the retention of the name rather than its original selection. For that one would have to have information from 1987/88. That information clearly shows the dismissal of ME.

It is interesting to note that it was not ME with which he was drawing comparison in his letter to Fukuda but CFIDS. By that time the name was already established.

Given the nature of the man, and the fact that he must have been fully aware of ME, one has to consider whether his views were coloured by personal considerations. Alexis Shelokov was interested in the subject. He researched the Richmond Lodge outbreak and was present at both the 1978 PVF conference in England and, along with Parish, the meeting in the spring of 1987 when the name CFS was chosen. He was, or had been,a director of NIAID, but reported somewhere that colleagues held him in low esteem, thinking that he had worked in biowarfare labs. He maintained that his work had been on vaccines. One does wonder whether it was Straus to whom he referred.
 
CFIDS came into being because Nancy Klimas had a clinic in San Francisco where she treated AIDS patients. When HIV was discovered to be the cause of AIDS she found that many of her patients were HIV -ve. They were then reclassified as CFS but felt they still had many of the same symptoms as AIDS patients so they said they had CFIDS.

This is one of the reasons the US researchers felt it was an immunological disease rather than an problem with energy and exertion.

I am not saying it was correct just that it came from this.
 
It is fair to say that the outbreak at Tahoe - and outbreak is the correct term as it spread through the community - is a mystery disease because the microbe was never discovered despite the CDC being sent to find out what was happening. Instead they ignored it and took the opportunity to push the idea that fatigue was a continuum. That already existed and was not derived from anything that happened at Tahoe.

Likewise the cause of the RFH outbreak was never found though the suspicion is that it was an enterovirus with many of those not being identified by 1955. Doctors at the time did their best and treated and supported patients for the rest of their lives with very little research money and ignored by the authorities who were responsible for public health.

Unless all the outbreaks round the world were really cases of mass hysteria then something caused them. Given that covid is causing long term illness that looks like ME in a lot of cases, that would have to be mass hysteria as well.

There are infections that spread through the community and leave people with a long term illness which is called ME/CFS nowadays and many other people who get an infection and never recover. To say it is a mystery and there was no political will to get to the bottom of it is completely true and is being played out again with longcovid.

It is only by the hard work of patients and some brave researchers and supporters that we have not been totally forgotten.
 
I apologise for returning to an issue arising inthe Straus letter. I am not unmindful of the fact that it may be considered boring. Life can be.

I am not sure that anyone has picked up on the fact that the reference to "shrill pressures to justify an entity of dubious validity such as CFIDS" is not original. It mirrors almost exactly the language of the 1987 lecture by Eisenberg, published in 1988, in which the reference was to "the spurious disease construct which legitimises and thereby perpetuates chronic illness behaviour".

I do not at present have the original text before me, but when Goldberg referred to the matter in his 1991 paper in "Postviral Fatigue Syndromehe stated that Eisenberg went on to say that there have been a number of successors such as "chronic mononucleosis", and would no doubt include PVFS in its various guises. " He (Eisenberg) considers them to be the somatic presentation of personal distress, "legitimised by a newly fashionable diagnosis"".

Incidentally, the 1987 lecture was not the first occasion on which Eisenberg had spoken in such terms. It goes back to at least 1985 with his paper at the Second International Conference on Illness Behaviour. This helps to establish where Straus was coming from.
 
Mithriel said:
CFIDS came into being because Nancy Klimas had a clinic in San Francisco where she treated AIDS patients. When HIV was discovered to be the cause of AIDS she found that many of her patients were HIV -ve. They were then reclassified as CFS but felt they still had many of the same symptoms as AIDS patients so they said they had CFIDS.

This is one of the reasons the US researchers felt it was an immunological disease rather than an problem with energy and exertion.

I am not saying it was correct just that it came from this.
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I don't have her exact words, but I have heard Dr. Klimas, an immunology researcher and clinician, say on more than one occasion that she was shocked to see the immunological abnormalities present in CFS patients that sought her out for help.
 
I've always had some sympathy for Strauss's views - especially at the time they were given.

When a diagnosis can be given without clear evidence of immune dysfunction a label like 'chronic fatigue immune dysfunction syndrome' can encourage somewhat snide views. I think that's just another reason to be cautious about any claims patients make.
 
Esther12 said:
I've always had some sympathy for Strauss's views - especially at the time they were given.

When a diagnosis can be given without clear evidence of immune dysfunction a label like 'chronic fatigue immune dysfunction syndrome' can encourage somewhat snide views.
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It seems to me the same can be said, perhaps even more so, about the term myalgic encephalomyelitis.
 
Willow said:
It seems to me the same can be said, perhaps even more so, about the term myalgic encephalomyelitis.
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That's true, and it does cause problems. I think ME has an advantage from having come from within the medical profession rather than from patients, and from having emerged before the mighty wars began. Also, people using it tend to do so with an awareness that it's likely to be a placeholder.
 
Esther12 said:
That's true, and it does cause problems. I think ME has an advantage from having come from within the medical profession rather than from patients, and from having emerged before the mighty wars began. Also, people using it tend to do so with an awareness that it's likely to be a placeholder.
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I think the term CFS, which came from the medical profession, was also originally intended to be used as a placeholder until more was known about this emerging condition. We, unfortunately, are still waiting for that to happen. In the meantime much negative, harmful fallout has occurred from use of this term. But here we still are, decades later. :(
 
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Jonathan Edwards said:
I imagine that Strauss was saying that he did not want to give the illness the implication of some known physical mechanism, such as causation by a virus or presence of inflammation of neural tissue when no such physical mechanism was known.
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Esther12 said:
I've always had some sympathy for Strauss's views - especially at the time they were given.

When a diagnosis can be given without clear evidence of immune dysfunction a label like 'chronic fatigue immune dysfunction syndrome' can encourage somewhat snide views. I think that's just another reason to be cautious about any claims patients make.
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Labels aside, Strauss was quite disparaging of people with ME and disbelieving of what they were experiencing. In one scientific paper, he concluded people with ME suffered from "histories of unachievable ambition, poor coping skills, and somatic complaints.” And he concluded a patient's perception of severity and response to treatment were correlated with their mood. In a 1988 New York Times article, he described patients as anxious, depressed and neurotic on the one hand or driven and under undue stress from busy lives on the other.

He was a strong proponent of the BPS model being advanced by Wessely et al in the UK by at least the mid 1990s and in 2000, invited just 3 others to NIH's CFS State-of-the-Science Consultation to improve the quality and direction of ME research - Wessely, Sharpe, and a US psychiatrist.

That same disparagement of the illness itself - not just of this label or that or of a given theory of biopathology - is seen in his congratulations of Fukuda noted above. Straus did not believe there was any physical component to this illness, even when the label used was CFS.
 
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