United Kingdom: Science Media Centre (including Fiona Fox)

Agree with all this.

Somewhere on S4ME there is a thread which lists all the things that SW has said which are very close to saying it’s all in the mind. Maybe someone will be able to find and share it.

Regarding the SW quote above, did you see the replies to your post that I linked to? The photocopy of the transcript on the Margaret Williams website looks pretty convincing. SW has challenged many of her claims but as far as I’m aware he’s never challenged this.

 

'From Trotsky to Brexit to Orbán’s attack dog: The man leading Hungary’s fightback against the EU'

https://www.politico.eu/article/tro...attack-dog-frank-furedi-hungary-fightback-eu/
.

 

The Science Media Centre 2013 includes the ME/CFS related awards to Tom Feilden and Simon Wessely that the SMC nominated them for, under their 'mental health research function' :

SMC
'Review of the first three years of the mental health research function at the Science Media Centre'


Included

'Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette's first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award.'

And

'The SMC jointly nominated Simon Wessely for the inaugural Sense About Science John Maddox Prize for Standing up for Science for his courage and bravery in speaking out on CFS in the face on intimidation, which Simon won.'

https://www.sciencemediacentre.org/...arch-function-at-the-Science-Media-Centre.pdf

.

 

Is it his handwriting ("Not for circulation", header notes, etc)?

 

There's this published by the SMC publications for scientists | Science Media Centre second document down under title "Advice for Researchers experiecing harrassment"
the download is a 2019 document.

"All researchers should expect their work to be scrutinised by the public, policy makers and campaigners. However, some researchers working on high-profile subjects that attract controversy, such as radiation, climate change, animal research, chronic fatigue syndrome/ME, or gender studies, have also found themselves targeted by people who have extreme views about their research"

Yes, I refer to it here along with his comments about somatoform disorders and engaging with the press for attention from policy makers and funders.

UK House of Lords/ House of Commons Questions

The handwritten comments on his speech was the one he gave on 12 May 1994 as the 9th Eliot Slater lecture at Queens Square It also contained comments about this UK made for tv film based on the life and death of Diane Longdon. She died in 1984, she was diagnosed with hysteria, had a non-epileptic seizure whilst being tested in the Maudsley Hospital, London. Two year's after her death in 1986, it was thought that Diane was suffering from ME. Wide-Eyed and Legless - Wikipedia film is available on Youtube. Her husband Deric wrote a book about their life titled Diane's Story.

The Joint Royal Colleges 5 year plan (when Wessely and Gerada were both Presidents of the respective colleges) set out CFS/ME linking it to:

Somatisation (Somatoform Disorders): Symptoms and Treatment (patient.info) MUS, MUP, FND

I can't find it at all but I distinctly remember reading it and there was considerable comment on it at the time. Does anyone have a link to it please?

Who is Simon Wessely?

Here's the Wessely quote thread Simon Wessely Research & Related Quotes | Science for ME (s4me.info)

ETC: Broken link

 

There's this open letter from the Countess of Marr in December 2012 Open letter from The Countess of Mar to Professor Simon Wessely | 4 December 2012 - The ME Association A couple of months after Wessely was awarded the John Maddox price for 'courage' in standing up for science.

At the moment I can't find the response from the Countess of Marr and others to this award announcement, nor the reply by his pals including Crawley.

'ME: bitterest row yet in a long saga' | Independent on Sunday | 25 November 2012 - The ME Association

The ripple effect is seen clearly in this incident, where Crawley was to give a talk at the Conference in Exeter. Paediatricians apologise but they don't identify the "muppet" who came up with title for today's conference | 18 May 2017 - The ME Association

 

Last two pieces and then that's me for the day.

• 3 months after the Chief Medical Officer's report on CFS/ME in January 2002, this debate took place in the House of Lords on 16 April 2002 Lords Hansard text for 16 Apr 2002 (220416-19) (parliament.uk)

"The Countess of Mar rose to ask Her Majesty's Government what is their response to the report to the Chief Medical Officer of an independent working group on chronic fatigue syndrome/myalgic encephalomyelitis dated January 2002.

The noble Countess said: My Lords, in view of the publication in the British Medical Journal of 13th April 2002 of its survey of so-called "non-diseases" and the prominence given by the press to chronic fatigue syndrome/myalgic encephalomyelitis as a non-disease, this debate has come at a very appropriate moment. I declare an interest in that I am patron of several ME charities.

On 11th January 2002, the Chief Medical Officer is reported as saying that,

• 
  "CFS/ME should be classified as a chronic condition with long term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease".
  

His choice of MS as an example is apt in view of the fact that this disease used to be known as "the idle man's disease". Like ME now, MS was dismissed as hysteria by some practitioners. The report contains the acknowledgement that,

• 
  "CFS/ME is a genuine illness and imposes a substantial burden on the health of the UK population".
  

I shall be characteristically blunt. Since 1969 ME has been formally classified by the World Health Organisation as a neurological disorder. The WHO has confirmed that it has no plans to reclassify it as a psychiatric condition in the next international classification of diseases revision which is due in 2003. However, since 1987 Dr—now Professor— Simon Wessely has been relentless in his proposition that ME does not exist. For example, in the journal of psychological medicine in 1990 he claimed that ME exists only because well-meaning doctors have not learned to deal effectively with what he called "suggestible patients".​

"

"Lord Clement-Jones: My Lords, I congratulate the noble Countess, Lady Mar, on initiating today's

16 Apr 2002 : Column 898

debate. I listened to her with considerable interest. I recognise the great strength of her feelings on the matter and her particular interest in the area. I declare an interest as a patron of the Tymes Trust, which supports children and young people with ME. It has an advice line that is manned by trained people with personal experience of the illness. Training days are run for various professionals, and the trust operates a professionals referrals service that enables doctors, teachers and others to consult ME specialists.
I became interested in ME more than 20 years ago when a close family member contracted the illness after having glandular fever. In those days, we had no idea what ME was. Over 20 years ago, there was some excuse for that, but now there is little excuse, least of all for members of the medical profession. ME is a serious illness, with no known cure. It has taken many years for that to be properly recognised. The illness has a profound effect on individuals and on entire families. In this country, it affects up to 25,000 children and, it is estimated, between 100,000 and 300,000 adults. Fifty per cent of long-term sickness absence from schools is attributable to ME. The cost of the illness is estimated at £4 billion.

I want to look forward from the chief officer's report. I will not dwell on the past in the same way as the noble Baroness did. I agree that Professor Wesley has not played a particularly glorious part in the controversy over ME, or indeed in that over Gulf War syndrome. However, I take a more positive view of the chief officer's report than the noble Baroness.

In 1998, the Chief Medical Officer set up a working party to examine the treatment and management of the illness. The document was published this year by the Department of Health. Despite the controversy—in a sense, the final outcome and the resignations may have been a good thing—and the year-long delay, the report came as a relief to sufferers. The new recommendations offer a major opportunity for change in the way that young people, in particular, are treated, supported and educated. The report acknowledges the disabling nature of the illness and the severe limitations that it can impose. It recognises the need for proper, multi-disciplinary assessment at the outset, so that a flexible treatment plan can be created.

The report was described by Val Hockey, the chief executive of the ME Association, as a wake-up call for the entire medical profession. I commend the chairman of the working group, Professor Allen Hutchinson, and the CMO on the outcome."

"Many questions arise from the work of the CMOs working group. First, there is the issue of training for doctors. Some recent articles written by doctors in the wake of the report are absolutely disgraceful and ignorant. I feel strongly about some of those reactive reports, and I shall also come later to the related issue of false allegations, which are relevant in this context. Often, such allegations arise from professional ignorance or, in some cases, sheer bloody-mindedness. We also had officials engaging in covert surveillance of people with ME. There are social workers and education officials who do not understand the condition. All those others need training. The department must say what plans it has. We need good practice guidance for social workers and other professionals, not just for doctors."


​

• 22 January 2004 Lords Hansard text for 22 Jan 2004 (240122-12) (parliament.uk)

"The Countess of Mar rose to ask Her Majesty's Government whether they subscribe to the World Health Organisation international classification of diseases for myalgic encephalomyelitis (ME) under ICD 10.G93.3—neurological disorders.

The noble Countess said: My Lords, first, I must declare my interest as patron of a number of charities that represent people with myalgic encephalomyelitis. ME is not a new disorder. There are many reports in medical literature dating from at least 1934. ME has been classified by the World Health Organisation in the international classification of diseases (ICD) as a neurological disorder since 1969.

In 1978, the Royal Society of Medicine accepted ME as a distinct entity with discrete signs and symptoms. In l988, the Department of Health and Social Security and the British Medical Association accepted ME as a legitimate physical disorder. In 2002, the Chief Medical Officer stated that ME should be classed as a chronic medical condition alongside multiple sclerosis and motor neurone disease.

Conversely, the WHO Guide to Mental Health in Primary Care, produced under the auspices of the Institute of Psychiatry, classifies ME as a mental disorder. I should explain that the Institute of Psychiatry is one of the World Health Organisation collaborating centres in the UK and, as such, is legitimately entitled to use the WHO logo. To the deliberately expedient or unwary, that can result—and, in the case of the classification of ME, has resulted—in confusion with the WHO in Geneva. Despite the fact that a senior civil servant in the

22 Jan 2004 : Column 1181

Department of Health has confirmed that it works to the ICD 10.G93.3 definition of ME/chronic fatigue syndrome, Ministers are providing false information to MPs by advising that it is the WHO itself that has reclassified ME as a mental disorder.
That is untrue. The WHO has confirmed in writing that the WHO Guide to Mental Health in Primary Care does not carry WHO approval and that it is "at variance" with the WHO's position on ME/CFS. The WHO has never classified ME as a psychiatric disorder and has confirmed that it has no plans whatsoever to do so.

Since 1992, one of the terms listed in the ICD as an alternative for ME is chronic fatigue syndrome. It is that term that is now used by international researchers and which has given rise to the confusing terms of ME/CFS and CFS/ME, a confusion that has served well the aims of a group of psychiatrists who assert that, whatever term is used, ME/CFS is simply medically unexplained chronic fatigue and that it should be classified as a mental disorder over which they should exert control."

It concluded with this from Lord Addington:

"Lord Addington: My Lords, I must admit to feeling as if I have put my head in a noose. We have medical disagreement raging across the Chamber and the use of words that I will not even attempt to understand. One thing is clear: the noble Countess's historical basis for complaint is solid. There is a tremendous tradition, when we do not know the medical or physical causes of something, of bringing in the quacks, to put it bluntly. That has happened on numerous occasions.

​

I shall give the House an example to add to the one that the noble Countess gave. Dyslexia is the one that I know most about. I can remember being told in the mid-1970s that my inability to read and write at the same rate as others was due to the fact that I came from a single-parent family. There are others examples, so I suggest that we take a sceptical look at things. With regard to the noble Countess's speech, I suspect that there are many libel lawyers who, on hearing our
22 Jan 2004 : Column 1190
debate, will react in the same way as someone on a diet looking at a cake shop window. It is a lovely feast that they cannot get at.
We must face facts. There have undoubtedly been occasions on which mental health problems have been suggested for things that turned out to be physical conditions. That has occurred. The fact that ME has a physical component—an initial physical component, at least—has been agreed by, I think, everybody here. "

​

The research referred to in the debate became the PACE trial!

We await the production by the Government of the Delivery plan (also delayed). De ja vue 26 years later.

 

This would definitely be something I would do, if he ever would talk to me--which he wouldn't, unfortunately. As a journalist, you learn early on never to quote as authoritative anything you haven't seen or heard yourself directly or know exactly the provenance of the document, who photocopied it, from what, where did they see the original document, etc. Smart people have had stories torched because of the failure to do this. I would definitely quote that Wessely statement at some point, but only as one he is reported to have said--not that he actually said it, unless I have more complete information.

 

I agree with this completely. But that's not quite the same thing as short-hand phrases like "it's all in the mind" or even "it's a psychological illness." As i said, in practical terms I don't think there's much difference. And certainly all the contradictory and stupid things they've said could be effectively cited to make the point that they do think psychological processes are at the core and need to be addressed. But I still think saying "it's all in the mind" is still an over-simplification--to me it means the symptoms are themselves purely imagined or made up and not "real." And I think they believe people have actual symptoms related to deconditioning, and yes, the deconditioning is driven by the purportedly pathological beliefs about illness.

In quoting them, I think it's important to be bullet-proof. Criticizing them as claiming declaratively that it's all in the mind or it's all psychological is not bullet-proof--for one thing, because they acknowledge the infectious trigger. I mean, this is how they have responded to the claim that "it's all psychological." It's a specious and sneaky argument--but they're technically right that they include infection in their model. As Jo suggested, a flat-out statement that it's all in the mind or all psychological provides them with strategic openings to deny they ever said those things. In other words, they have some plausible deniability.

I think it's entirely legitimate, however, to make an argument pointing out that, while they've never said those things specifically, or at least not in more recent decades, they do believe it's an illness driven by pathological thinking and behavior.

I've struggled with how to frame this issue over the years. In any reporting of anythng, it's important to anticipate the counter-arguments that can be made and not fall into the trap of creating an opening for people to make them. In this case, when an opening is created for them to say, Hey, I didn't say it's all in the mind, it provides them with an advantage they don't deserve. Best to avoid that.

 

Strongly agree with all you say, and I wish more people were aware of the pitfalls of getting the language and details wrong. I’ve always thought that the most bullet-proof way of framing their view is to say that they believe that ME/CFS is perpetuated by unhelpful beliefs (and deconditioning) and reversible with psychological (and/or behavioural) interventions.

When the physiologies of ME/CFS are understood, they will probably still try to claim that it doesn’t undermine their work, because their evidence of efficacy of CBT and GET is independent of aetiology. This is also why it’s a mistake to try to argue against CBT and GET on the basis of evidence of abnormal physiology – even if that evidence was robust. Remember, Chalder has claimed to be able to reverse fatigue in MS with CBT – to the extent that MS patients reported less fatigue than health controls! – and we have a pretty good understanding of the abnormal physiology in MS.


[edited typos for clarity]

 

An important point. I'm not sure about using reversible (they usually speak of improvement), but they present it as a treatment.

They take care to avoid all curiosity about what happens after the treatment, of course.

 

The descriptions in the PACE trial made it clear they considered the condition "reversible." Now I think they more often talk about "improvement" and tend to downplay, deny or obfuscate their prior claims.

 

Thanks, I'd forgotten about that. I'm thinking of the more recent, much slippier language.

 

They weakened the criterion for "recovery" on a global health questionnaire that was one of the four thresholds someone had to meet to be considered fully recovered in the trial, because they felt that someone getting better, rather than saying they were fully better, was on the "road to recovery" or something along those lines. It was a post-hoc change and it was part of the scam.

 

Got a few with their sources.

I guess it could be fair to say that they said it's behavioral, rather than psychological, but to me that's a distinction without a difference. I don't buy that they genuinely think it's relevant, or they wouldn't have spent this much energy inventing a concept completely detached from them.

There are plenty of quotes that openly mock the role of infectious triggers, as merely something that triggers our obsessive behavior. We've seen it again with Long Covid being blamed on lockdowns and trauma instead of, you know, the freaking virus almost everyone has had multiple times. These people just know not to say the quiet part loud in public, but I have zero doubt that to them, it is "all in the mind" and purely psychological.

I don't see the point in giving them credit when they more than earned never deserving the benefit of the doubt. Tobacco executives never slipped in saying that they knew their product was deadly, but in private correspondance of course they knew. And of course what people do matters far more than what they say.

 

And this was when they had the long term 135 week follow up (which should be long enough to say that’s a sign of how much they are likely to recover particularly if you map it as a trajectory from earlier measuring points)

and had objective data

both of which they just arguing about choosing not to use