Articles on ME/CFS by Margaret Williams and Professor Malcolm Hooper 1986-2018 With contributions from Eileen Marshall (1994-2007) and others

Contemporary commentary on the publication of ICD-10 by David and Wessely:

https://dxrevisionwatch.files.wordpress.com/2019/12/swicd101993.pdf

Letter, The Lancet, Volume 342, November 13, 1993

Page 1247

Chronic fatigue, ME, and ICD-10, Anthony David, Simon Wessely

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Note: The ICD-10 Tabular List was endorsed by the Forty-third World Health Assembly in 1990; it was first used by member states in 1994. The ICD-10 Alphabetical Index (Volume 3) was published a couple of years later.

Chronic fatigue syndrome, as:

Syndrome – continued

[…]

– fatigue F48.0

– – chronic G93.3

– – postviral G93.3 ​

was included in Volume 3: The Alphabetical Index. The CFS term was not subsequently added to the Tabular List during the annual and three yearly ICD-10 Update and Revision Process and for ICD-10, the term remains an Index term, indexed to G93.3.

However, for ICD-11, the WHO has added CFS to ICD-11's equivalent of the Tabular List (the ICD-11 Mortality and Morbidity Statistics Linearization) as a specified inclusion term under 8E49 Postviral fatigue syndrome and also approved the insertion of reciprocal exclusions for all three terms (PVFS, BME and CFS) under ICD-11's MG22 Fatigue.

 

I'm not sure that the introduction of UNUM strengthens the case against SW. The arrangements to bring in LoCascio to the DWP must have been in place by late 1993. It would be reasonable to expect there to have been a lengthy period of lobbying and then meetings with officials and then ministers before this was finalised. The correspondence revealed between Mansel Aylward and SW in this period show him still to be a relatively insignificant player. The real action was elsewhere and we know nothing about it. SW may have been a useful scapegoat

 

Extract from a response from Jo Paton, WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College London, 16 September 2001 to the late Connie Nelson:

The ME Action UK site owned by Stephen Ralph is no longer available, but a copy of Ms Paton's response can be obtained from:

https://web.archive.org/web/20101009130340/http://www.meactionuk.org.uk/whomisc.htm

(...)

2. Classification of Fatigue Syndrome/Chronic Fatigue under ICD-10

We have sought clarification of this matter from WHO and quote below from a statement published by the then Director of the Division of Mental Health.*

In ICD-10, `Fatigue Syndrome’ is classified as an inclusion term under F48.0. Neurasthenia. `Postviral fatigue’ is excluded from this category and should be classified as G93.3. This latter category mentions `benign myalgic encephalitis [sic]’ as an inclusion term.

“ Although in clinical practice it is often very difficult to determine the role of viral infections in chronic fatigue, and although scientifically the need for two separate categories is not well established, these have been adopted for ICD-10 because of varying recording practices. It is to be hoped that the issue of the classification of fatigue syndrome will be resolved through research in the coming years, so that adjustments can be made in ICD-11, if necessary.

“ In the meantime the following rules are recommended for the coding of `fatigue syndrome’ according to ICD-10:

“ Category F48.0 Neurasthenia [fatigue syndrome] should be used for all patients fulfilling the criteria for this disorder. If the neurasthenic syndrome develops in the aftermath of a physical disease (in particular influenza, viral hepatitis or infectious mononucleosis), the diagnosis of the latter should also be recorded.

“ Category G93.3 Postviral fatigue syndrome should be used for conditions with excessive fatigue, following a viral disease, that do not fulfil the criteria for F48.0 or where no further clinical evaluation as to these criteria are performed.”

“ The use of the term `benign myalgic encephalomyelitis’ should be avoided, until the status of this condition has been clarified.”

We have checked extensively and are sure that this statement from WHO has not be superceded by any more recent statement.

(...)​

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*Note, I don't think this "statement published by the then Director of the [WHO] Division of Mental Health" from which Ms Paton quoted, in 2001, was a public domain statement and it's not known which former Director of the [WHO] Division of Mental Health had originally issued the statement, in which year, for what purpose or to whom.

But the statement may have possibly originated from Norman Sartorius, a former WHO Director of the Division of Mental Health and a former president of the World Psychiatric Association and of the European Psychiatric Association. His tenure as Director of Division of Mental Health would fit with the timeline.


Edited to add: Note also that Prof, Sir David Goldberg (Professor Emeritus, Institute of Psychiatry, King's College London - which is a WHO Collaborating Centre) and a co-author of the "Reattribution Model" for somatoform disorders, had a long collaboration association with Norman Sartorius and the WHO's Bedirhan Ustun.

Goldberg had chaired the working group for the development of the WHO's ICD–10 Primary Health Care (PHC) diagnostic and management guidelines for mental disorders and was part of the working group for the Institute of Psychiatry's print adaptation of this WHO publication for UK use, for which errata slips had to be inserted, after the book had been printed, to correct errors around ICD coding that had been introduced by the Institute of Psychiatry and corrections made to the IOP's website pages based on this adaptation.

 

This can be true but they are also invaluable and are fascinating to read. I have read a lot of them over the years, including before I wrote anything about PACE, and have found a lot of useful information. Magical Medicine really captures what happened in PACE, but it is true there is a lot to whack through, including thickets of verbiage, to get to the main points. For academic researchers, these are incredible primary source documents for what was going on when they were written, including in post-PACE years. But Williams/Hooper are clearly interpreting events, and sometimes the interpretations predominate or seem to exaggerate or exceed the available facts. These articles will be a gold mine for future historians of medicine investigating how this happened.

 

It definitely began around the CDC but the last 1.5 decades are mostly his and his colleagues' fault. He did not start the fire but he keeps stoking it, making sure if burns us well and good.

 

I don't doubt that the unscrupulous government lobbying of the disability insurance industry, and particularly UNUM (formerly UnumProvident), which has a presence in the US and UK, played a major role in psychologizing ME.

But you need academics to publish papers in order to lend a scientific credibility to your manipulations of government policy, and that's when the Wessely School and their counterparts abroad became useful.

The disability insurance industry pays to set up entire university departments to study things like the biopsychosocial model, to help create an air of scientific credibility.

UNUM paid £1.6 million to help set up the UnumProvident Centre for Psychosocial and Disability Research at Cardiff University in the UK, to research into psychosocial factors in disability.

And you have the Leonard D. Schaeffer Center for Health Policy & Economics at the University of Southern California, which Schaeffer gave $25 million to help set up in 2009. Leonard Schaeffer is the founding chairman and CEO of WellPoint, the largest disability insurance company in the US.

 

@Hip

Thank you for including Dr. Hyde's article. Appalling though it is that physicians would "laugh themselves silly" over the sufferings of pwME. If this was portrayed as "misguided imagination" or a psychological problem, it should not have been scoffed at. Or, do many in the medical fields laugh at those with all manner of psychological problems. Are these patients often a source for comedy in medicine? Fodder for comedy skits at medical conventions?

ETA: very important to note - ME is not a psychological problem!

 

I suspect it's just like with climate change and tobacco. The industry rewards scientists that produce the evidence they need and the scientists know what is expected of them and that rewards will come. Both the behavioural and insurance industries are huge. It would be surprising if they didn't fund the research that will advance and protect their interests.

As for the CBT/GEt theory, it's really difficult to believe that someone could so consistently get things wrong merely due to incompetence. And we know there are conflicts of interest and that the full extent of them is probably hidden.

 

Sometimes I doubt that. And then I see things that make me not doubt it. Some people really are foolish to the extreme, negating all intelligence they bring to the mix. And we are dealing with pretty extreme levels of foolishness so it's pretty much tradition at this point, psychosomatic "medicine" will always be this backwater of idiotic beliefs and "is it incompetence or malice or both?", same as it ever was. It's basically a field of fake science built to produce nonsense, and so it goes, always producing the same garbage but there's an endless market for it.

The parallels to climate change are striking. People can tell themselves all sorts of things about what other people are doing wrong. In our case it's a weird combination of Peter principle and Dunning-Kruger. Some parts malice, some parts pure incompetence, all modulated by beliefs that make no sense but then that's the nature of beliefs, not making sense is basically the point.

 

Very useful to have in one place. I've just read this one: http://www.margaretwilliams.me/1995/franklin-and-behan-lecture-coventry1995.pdf

One of the less political and more medical social history-focused docs as it is a write-up from a talk by Franklin and Behan to a local meeting of medical-related people in that area organised by the leader of the ME support group.

I'm particularly astounded by the second half from Behan on the research given it is 1995.

I'm not up with everything enough to know what of these suggestions have been tested further since to rule in or out, or if there are types or complexities unbundle these findings/ideas further but a lot still resonates as being fascinating.

For example there is a description of research done in 1995 in Glasgow that sounds like the forerunner of the 2-day CPET

But also thinking about future research, ideas for places to look, the APPG, and current projects looking into what might be short-term possibilities for management or treatment I'd love for things like this - which seem to pull a few ideas of that time together - to be gone through here to list the concepts and see what has moved on and so on?