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

Useful resource.

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http://www.margaretwilliams.me/

 

I'm not a big fan of these articles, to be honest.

I think they tend to overstate or dramatize a lot of things, mostly in relation to Simon Wessely.

 

Same. Biggest problem is they're too long and rambling.

 

I think many of them are articles of their time. Many were written when these guys were virtually lone voices. They are long and rambling because they had to try to provide context.

Our advocacy has moved on, but Hooper and Williams laid the foundations. Most of us here already know all this background and take that for granted now. 15 or maybe 10 years ago it wasn't like that.

Are these documents suited to our current advocacy efforts? No. They do provide a record or history of the ME struggle that should be preserved I think.

I am very grateful to both Hooper & Williams for their work. They risked a great deal and suffered slurs to their reputations because they were prepared to stick their necks out.

Note - I know Williams is a pseudo nom. I believe some people in high places knew who she was though and spread rumours about her.

 

I think there may be a danger in judging them by the needs of the current time rather than those of the time in which they were written. They were valuable in their time.

 

To show the value of these papers, here is something that seems to have passed us by

In 2016, to celebrate his 60th birthday The Royal College of Psychiatrists adopted a book from the College’s antiquarian collection to mark the occasion and to reflect how greatly he is esteemed within his own fraternity: the book is called “Observations on the nature, causes and cure of nervous, hypochondriac and hysterical (patients)”.

www.margaretwilliams.me/2017/thirty-year-retrospective.pdf

That tells you all you need to know about that Royal College's attitude towards their patients.

I suppose someone thought it clever.

 

I've read a number of these articles over the past few years, and found them both interesting and informative.

I am grateful to the authors for documenting the history of our disease and hence treatment by decision makers.

Coming from a North American perspective as I do, this information filled in the gaps about the experiences for pwME in the UK.

In Canada, we did not have government ME/CFS clinics providing GET/CBT.

Certainly some Canadians may have had to go through this, but if these clinics do exist here, there has not been to my knowledge wholesale referrals to such clinics in this country.


I don't think anyone would argue that preserving the history of ME is important.

The history of any issue, group of people etc., adds invaluable information to explain the present state of affairs.

Otherwise, we will have authority figures declaring as I have been told: "Medicine has always viewed ME as biomedical."

If we neglect to document and/or preserve the history that has been collected, those in positions of power will be able to deny any wrong-doing.

And, there will be much less pressure to remedy the situation.

(I wish to add that the retrospective goes from 1986 to 2018; surely articles from the last 5 to 10 years or so, must be relevant to our time.)

 

Those articles tied together so much for me when I was first learning about ME. Without them I could not have made sense of my daughter’s experience with doctors which was clearly due to the politics and issues around ME/CFS. I am so grateful for those resources.

 

Hooper's articles are a mixed bag, which could be seriously improved by major edits. Apart from any other reason, they are just way too long and rambling.

Williams' work is better quality, but could also use some editing.

That said, I am grateful for Williams' work in particular, and Hooper makes some good points along the way.

 

It is difficult to underestimate the value of these articles. We have a large community nowadays, information is easy to come by and there are charities like Invest in ME working to forward the science.

It was not like that at all. All we had was the wishy washy ME association and doctors and researchers who were not political at all so were ignored by the establishment.

The "Denigration by Design" paper was given to politicians and others and gave notice to the BPSers that someone was watching and documenting. If it had not happened they would have had much more power over us today. Think of Dave Tuller bugging the BMJ!

They were also a voice of hope to us as we watched the likes of SW lie about what our illness was. If people feel despair at times now the situation was much worse then when there was little way of supporting each other and there were no outside voices on our side.

 

If there is ever a public inquiry about ME these documents could be useful. They definitely need preserving as they document the appalling treatment of ME patients in this country over many years. Thank you so much Margaret Williams and Malcolm Hooper.

 

Absolutely. These articles help explain how a tiny group of psychiatrists, with Simon Wessely being the chief protagonist among them, managed in the 1980s to convince most medical researchers and clinicians that ME is an "all in the mind" psychogenic condition. Previously ME had been largely thought of as biologically-caused disease, ever since ME got its name after the 1955 Royal Free outbreak. But Wessely and Co in the 1980s changed the entire course of ME research.

Williams and Hooper explain why it was vitally important for the disability insurance industry to team up with Wessely and Co in order to recast ME as a psychological condition. This saved some disability insurance companies from a catastrophic loss of profits, in the face of the massive 5- to 8-fold increase in ME cases that occurred in the 1980s, and thus a huge rise in ME disability insurance claims. Make ME look as it it were "all in the mind", and insurance companies don't have to pay any disability support.

We are only now just starting to recover from the enormous setback that Wessely and Co created for ME/CFS research. But it still might take the field of ME another 10 or 20 years to recover, before medical researchers and clinicians finally stop viewing ME as "all in the mind". Most researchers still see it as psychological today. So I would say Wessely and Co set back ME biomedical research by 50 years.

That's why the history that Williams and Hooper document is important.

 

Didn't Charles Shepard say he was taught in the 1970's that ME was "hysterical nonsense"? I'm beginning to wonder if GPs ever took ME seriously.

 

In the 1970s, we had McEvedy and Beard, who proposed that the 1955 Royal Free ME outbreak was mass hysteria. These guys did not interview or even meet the ME patients of the Royal Free outbreak, so their work was really shoddy. There was some talk about this hysteria idea during that decade, but by the end of the 1970s, it was pretty much refuted that the outbreak was hysteria. So ME was still generally considered a biologically caused disease.

But then in the 1980s, Wessely stepped into the field, and as they say, the rest is history.

 

It is possible to give SW too much credit for events. It would seem that he merely picked up the baton deposited by the Americans and ran with it, endeavouring to overcome "therapeutic nihilism" on the way. The latter idea seems to have originated in Oxford. There is evidence of Strauss playing up the hysteria idea in 1987 and Eisenberg referring to the spurious disease concepts, and stressing the significance of Imboden et als research, by May 1987. Given that that was shortly after the CDC meeting agreeing the Holmes criteria it is probably to that meeting which one needs to look.

 

I'm not sure that a lot of people outside the UK realise the extent of the damage to patients by SW and Co, although their ideas were exported abroad and patients in other countries abused by their own doctors and health services. ME has the most awful stigma because of them, even now. They stifled proper research and set hope for ME patients back years. They call themselves Doctors. Will they ever be called to account for what they have done? Will the PACE trial ever be retracted?

 

In my opinion, no. Any efforts to do so is wasted in my opinion and could be better used elsewhere.

Possibly, but only once the accepted evidence base has built to such an extent that it proves what advocates have been saying all along.

 

I am not entirely sure who initiated the psychogenic view of ME/CFS in the 1980s. Wessely's first published paper on ME/CFS appears to have been in 1988 (see his list of ME/CFS papers here).

There were counterparts to the Wessely School in other countries: in the US, Bill Reeves of the CDC and Edward Shorter, in the Netherlands Jos van der Meer and Gijs Bleijenberg, in Denmark Per Fink, and in Australia Andrew Lloyd and Ian Hickie.

And let's not forgot that it was the US which in 1988 introduced the disease entity of chronic fatigue syndrome, whose ICD classification included psychological factors as possible causes (whereas in its ICD classification, myalgic encephalomyelitis is purely a neurological disease).

But to my knowledge the Wessely School in the UK seems to comprise a larger group: including Michael Sharpe, Trudie Chalder, Peter White, Anthony Cleare, Anthony David, Stephen Reid and Elena Garralda. Several of these Wessely School people, including Wessely himself, had links to disability insurance companies, which is a conflict of interest.


I am not sure about other researchers in the US, but Wessely seemed quite engaged in actively promoting his "all in the mind" view on ME/CFS. Wessely was an activist in the field of ME/CFS, and want to change opinion in the medical profession about this disease. And he had a knack for convincing people of his views.

The following article by Byron Hyde shows how Simon Wessely has an amazing ability to convince other medical professionals that his "all in the mind" view on ME/CFS was correct. It refers to a lecture Wessely gave in Canada (expenses paid for by the disability insurance industry):

Source: the above quote is from Dr Byron Hyde's website www.nightingale.ca in 2011, but it's no longer on the site.

I believe the Wessely School were also aiming to get the ICD classification for ME changed in order to make it into a psychologically-caused condition (fortunately they failed to achieve this).

Whether other researchers were as ambitious and as active as Wessely in promoting the "all in the mind" view on ME/CFS I am not sure.

 

@April, from what I understand, in the UK, at the heart of the GET/CBT for CFS movement, treatment is more definitely streamed into GET and coercive CBT; a more regimented approach.

I don't have words to adequately describe how terrible this must be for pwME in the UK, nor for those of us with ME in other countries who are horrified by this spectacle.

There may be many in Canada who have had to endure this debunked treatment, however, I am not aware of GET/CBT being a universal policy for Canadians with ME.

I think perhaps there could have been more official emphasis on the debunked ME treatments GET and CBT in Canada, given certain things falling into place. Hopefully that time is passed.

What seemed universal here were the concepts of ME as a psychological issue such as emotional burnout, depression, and/or mental illness, and over sensitivity to symptoms and decreased function.

Very much akin to the UK concepts, but without the regimentation of required GET and coercive CBT.

Rest as treatment was an early concept, however, there was, and still is much neglect, disbelief, and shoddy treatment here.

 

You've also got the work of Mansel Aylward @Hip. Very close ties to UNUM and was an advisor to the DWP. I believe UNUM funded the Centre for Psychosomatic Research in Cardiff where Aylward is a director.

Aylward was around before Wessely graduated and possibly influenced him.

Not sure of the timings & haven't the energy to dig through.