Who was it that said being in support groups leads to poor outcome?

[JoanneS]

Anyone who has ever exerted themselves and now finds themselves suffering malaise might be deemed to be suffering from PEM.

I agree, unfortunately the concept and definitions of PEM is too open to interpretation, and in certain circles PEM is seen as the only definitive symptom of ME. So "malaise after exertion" becomes ME, disregarding all other symptoms.

 

[Sly Saint]

How like them to introduce the term without any definition.

I suppose they think it speaks for itself. The little question of what constitutes "post", "exertional" and "malaise" remains answered.

Anyone who has ever exerted themselves and now finds themselves suffering malaise might be deemed to be suffering from PEM.

why IMO Post Exertional Neuroimmune Exhaustion (PENE, ICC) is a better term but needs to be clinically proven (ie that elusive test that 'proves' what exactly is going on).

 

[Mithriel]

I noticed there's no mention of PEM in these early leaflets, did that term get coined later on?

In response to Wessley and friends, Ramsay said that exercise makes ME worse so if someone gets better with exercise they could not have had ME. It was taken for granted in the ME days that doing things beyond a variable point made you feel bad.

The other thing that was seen as basic was a variation in symptoms over hours, days, weeks, months and years.

That describes my illness and distinguishes ME from other diseases but it is not snappy. I just wish doctors thought about ME that way and we would all know what we are talking about.

We might be stuck with PEM though, at least until a mechanism is agreed. Personally, I believe a broken aerobic system is what is behind my problems in the same way that faulty glucose metabolism is behind my diabetes. We don't have to go into details of how my high glucose levels affect me because they are implicit in the faulty biology.

PEM describes the way people with ME feel on exertion so equating it with what other illnesses feel on exertion is a wrong use of the term.

It is like when they started using the term "learning disabled" instead of all the other terms from idiot onwards. It was a valiant try but I never felt it was accurate. Dyslexia, for instance, is a learning disability in that there is a problem specifically with learning but the term is already used in a less accurate sense.

I don't like it much but all we can do is insist they use the term accurately for what it is meant to describe.

 

[chrisb]

I'm getting really grumpy. Should it not be Post Exertion Malaise, otherwise it is something arising after "Exertional Malaise"?

 

[Lucibee]

I now strongly suspect that this snippet below comes from the MEAC 1988 leaflet, since the exact words seem to have been quoted by SW in various articles. But without seeing the rest of the leaflet, it difficult to know just how out of context this was taken. It certainly seems that later leaflets/factsheets were a little more carefully worded. And this is only the first bullet point, not the entirety of the advice given.

 

[Arvo]

OK. So, in summary, we have Sharpe's study in BMJ (1992) which claims to show an association between support groups and poor outcome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883193/ (with alternative explanations presented in correspondence by others)

...which in turn references Wessely's study on 50 patients (JNNP 1991): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014351/

...which Wessely also mentions in his chapter in the Jenkins/Mowbray book on Post-viral fatigue syndrome (1991).

Wessely mentions that "At the beginning of 1989 over 150 people a week were joining the principal patients' organisation." and cites David Smith's book "Understanding M.E.", which seems to be positive towards support groups.

Is that a fair summary?

R.E. Kendell, Chronic fatigue, viruses and depression, Lancet, 19th of January 1991
Referred to in newspaper Trouw of 9th of February 1991:

Kendell remarks on the side that ME patients don't like to hear that diagnosis, or any other psychiatric diagnosis, "especially not if beforehand it has been suggested to them that they have ME (...) The diagnosis depression implies that their symptoms are imaginary and only exist in their mind. Unfortunately this view, with its crude distinction between 'real' physical diseases and psychiatric illnesses, is shared by the ME patient associations in England and by many doctors.", according to Kendell.

Note how all the usual greatest hits fallacies come together in one early quote.

This piece was also referred to in the Dutch Nijmegen group's "part 2" about "Chronic Tiredness Syndrome" (a name they tried to launch here for a while, Chronisch Moeheidssyndroom, CMS), about "Psychosocial hypotheses" in Nederlands Tijdschrift voor Geneeskunde, accepted on the 8th of april 1991

and

K.E. Hawton and M.W. Hengeveld, Het chronische-moeheidssyndroom; psychiatrische aspecten (The chronic-tiredness syndrome, psychiatric aspects), accepted on 26th of July 1991 by the NTvG

It is overstuffed with every stupid, harmful thing by the Wessely School style psychiatrists you can imagine regarding ME/CFS, so the ideas were fully fledged by then. Including this:

Translated:

Another factor that contributes to the maintenance of the CMS is possibly the belief, strengthened by patient associations and by some authors (14) that physical and mental effort/exertion lead to damage and to possible relapse, so that the patients have to (keep) rest as much as possible.

Reference 14: B. Dawes, D. Downing, Why ME? A guide to combatting viral illness. London: Grafton, 1989. The book is also a reference in Wesselys Old wine in new bottles: neurasthenia and ‘ME’ from 1st of February 1990.

Also notice reference 13: MC Sharpe, J. Pasvol, K. Hawton, Chronic fatigue: initial assessment als follow-up of 200 cases, that doesn't name a source journal, but "to press."
So Hawton, an author of the Oxford criteria, was having a paper ready to print with Sharpe (so: close collaboration at that exact moment, and they authoreded together before, incuding the criteria) while he was also spreading their views in The Netherlands.

The reference is linked to how "the firm conviction of many CMS patients that their illnes is caused by a viral infection, might be of significance for the preservation/maintenance of the complaints, evidenced by a follow-up study in which a connection was found between these convictions and an unfavourable course/development/progress."
This sentence is right before the aforementioned quote btw.

This might still be of use to you at some point @JaimeS


Thank you @chrisb and @Lucibee for your contributions in this thread! Also very interesting from the dutch perspective, as the UK's Wesseley School and the dutch Nijmegen group have always been so closely connected.


Edited to add links to the sources.
Edited because I wrote the wrong newspaper name.

 

[chrisb]

Thanks for this post @Arvo and the ones on the other thread. I am trying to assimilate this new information. It is taking time. I wonder whether this subject needs a thread of its own for better understanding. I was aware from an obituary of J K Wing that there was formal collaboration, or perhaps liaison, between the Maudsley and Aarhuus, (in addition to Harvard), and now wonder whether there was something similar here. I thought that Hawton's interest in ME was peripheral to his main interest in suicide, but this may have to be reassessed. I have always regarded Hawton as being a step high in the hierarchy than Sharpe, though this may be incorrect.

As you observed elsewhere it is interesting that this occurred in what I regard as the gestation period for CIBA, which took place on 12-14 May 1992.

EDIT it is quite hard to place Kendell in the UK history. His role is unclear. It is interesting to see his influence elsewhere.

 

[Arvo]

May 30th 1991, Patient Care (journal that went to 115,000 clinicians):

The article Tips on chronic fatigue syndrome, by Buchwald, Gantz, Katon and Manu. (Buchwald and Gantz later said that while they had been interviewed for the article, they had not authored it.).

A seemingly nasty article (Manu and Katon thought ME was a psychiatric issue, so not surprising), with, among other things:

'Interaction with support groups should be discouraged, the doctors cautioned, since "chronic fatigue syndrome groups may be dominated by people who have the most severe illness (and a tenacious commitment to being sick).....And most groups are heavily invested in believing that chronic fatigue syndrome is a distinct postviral disease."'

(Source: Osler's Web, page 491)

 

[Arvo]

I wonder whether this subject needs a thread of its own for better understanding..

I think that might be a good idea, also because their ideas seem to sprout almost fully formed as a whole into being. There seems to be a distinct period of consolidation of the whole unfounded psychosomatic construct for ME between roughly 1989-1992, which leads back to Wessely's articles.
Bleijenberg is saying things (regarding IBS) in december 1989 that make me think that he already was familiar with their material by then or even had contact with UK psychiatrists. (Articles regarding ME were published in the Dutch Journal of Medicine (Nederlands Tijdschrift voor Geneeskunde) in 1988 that had Wessely as a source, so I'm rather sure Bleijenberg was familiar with their views.)

(Bleijenberg also said things in '87 that are the foundation of stuff that is now the basis of MUS here.)

Thanks for this post @Arvo I wonder whether this subject needs a thread of its own for better understanding. I was aware from an obituary of J K Wing that there was formal collaboration, or perhaps liaison, between the Maudsley and Aarhuus, (in addition to Harvard), and now wonder whether there was something similar here. I thought that Hawton's interest in ME was peripheral to his main interest in suicide, but this may have to be reassessed. I have always regarded Hawton as being a step high in the hierarchy than Sharpe, though this may be incorrect.

As you observed elsewhere it is interesting that this occurred in what I regard as the gestation period for CIBA, which took place on 12-14 May 1992.

EDIT it is quite hard to place Kendell in the UK history. His role is unclear. It is interesting to see his influence elsewhere.

1. Maudsley and Aarhuus vaguely ring a bell, but I'd have to look them up to place them. I'm currently unfamiliar with them.

So far it seems like I'm looking at a Strauss/Manu/CDC being mysogynist rotters providing a springing board for Sharpe/Wessely/White to make an attempt (and succeed) at hauling in "CFS" as their field of expertise. They start confident and pro-actively with the Oxford criteria, buoying on the still pervasive 19th century mysogyny within medicine, but also still a bit sort-of careful (their entry point was "working together" with medical experts, and they made a careful distinction between "CFS" and "PIFS", making the obvious and proven infectious nature of ME a "subset" so they wouldn't get egg on their faces if more stuff was discovered about the nature of the disease).

2. Hawton has written at least 3 articles with Sharpe ('90, '91 94) about CFS, and psychological sequelae of physical disorders/unexplained somatic symptoms. I think the article he has authored for the Dutch Journal of Medicine is an important document for ME historians following the thread of the UK psychosomatic group, because it shows their notions and just how much (nearly everything) they still say to this day was already fully-formed (unfounded of course) in July 1991, mere months after the publication of the Oxford criteria that, although obviously a shameless claim attempt by the psychiatrists, still tried to create an image of them being "balanced" and keeping the options of what ME was open.

A google translate version of it, which omits the included model:

Google Translate Version of Hawtons 1991 article in The Netherlands

And the accompanying model.

 

[glennthefrog]

answering the question in the topic's title: my EX wife constantly told me that I should get out of support groups because they were "making me sicker". Of course she was referring to mental illness (hypochondria, anxiety disorder, etc), not that she believed I suffered from a biological illness, she never even read fro ten minutes about me in 10 years of being my "partner"

 

[Invisible Woman]

It's interesting how even when ME is supposed to be considered psychiatric, it's still treated differently to other psych illnesses.

I believe group therapy is quite common in mental health where patients share experiences.

Even in AA (I'm not saying that's psych), where you might worry if one falls off the wagon they might take someone else with them, the benefits of working in a group and shared experiences far outweigh the risks.

So when it comes to support groups we are the exception but when it comes to exercise being a panacea no exceptions can be made.

 

[Snowdrop]

This whole idea of bad outcomes from being in a support group seems truly odd.

Perhaps I'm getting the idea from popular culture but don't people who present with mental health issues generally end up in a group setting for support while also getting individual treatment? I always thought this was rather common practice.

It seems that 'support' is only a problem when the people needing support are in charge. That may be more the issue -- they (BPS) are not in charge of the support and they don't like that.

ETA: a few words for clarity

 

[Invisible Woman]

It seems that 'support' is only a problem when the people needing support are in charge. That may be more the issue -- they (BPS) are not in charge of the support and they don't like that.

More like the BPS crew don't like ME patients asking awkward questions and asking for enough information so they can give informed consent to treatment. If new patients became aware of many of the problems they might have fewer participants in their research.

 

[Arvo]

Another source: in June 1988, A. Scott from the ME Association London/Richmond and E.M. Goudsmit, Teddington (Engeland) wrote a response to two articles in the Dutch Journal of Medicine (NTvG).

Link to their response

Moe van de virussen/Het postvirale vermoeidheidssyndroom
25-08-1988
While any attempt to disseminate information about the devastating illness myalgic encephalomyelitis (ME) must be welcomed, it is most regrettable that the NTvG chose to publish two very superficial and selective ‘reviews’ full of misleading statements and even factual errors (1988; 997-9 1988;and 999-1001).

The most misleading aspect of the articles were the many references to fatigue (moeheid). ME sufferers do not feel tired, they feel utterly exhausted! To use the term fatigue without once mentioning the severity trivialised the distress which ME sufferers experience. Had any of the authors been familiar with the clinical presentation of this disease, they would have been aware of that and their approach would undoubtedly have been different.

The many inaccuracies were also a source of irritation. For instance, Kapsenberg stated that there was a lack of evidence for an infective process (p. 998) during the first epidemics of ME. This assessment suggests that the author had skipped through the literature. Even during the epidemic at the Royal Free Hospital in 1955, there was plenty of evidence for an infective process (e.g. swollen glands, sore throats, fever and morphological changes in lymphocytes).1 The same article also implied that nurses, many of them experienced in treating poliomyelitis, suddenly developed a hysterical reaction to the fear of this disease. This however is pure speculation. As fas as the epidemic of encephalomyelitis at the Royal Free Hospital is concerned, there was no poliomyelitis outbreak in North London at the time and the nurses had no reason to be anxious. In fact, the early cases were initially diagnosed as glandular fever. Hardly the stuff of which outbreaks of mass hysteria are made!

Jennekens and Van Gijn too reviewed the background literature without checking the facts (1988;999-1001). The psychiatrists who proposed that the outbreak at the Royal Free was nothing more than mass hysteria did not have access to files of sufferers.2 The 100 case notes which they examined were of nurses who were considered by the attending physicians not to have had ‘Royal Free disease’ but other conditions.

The discussion of the Royal Free epidemic is just one example of the bias shown by the authors in their interpretation of the literature. It is our contention that they gave a distorted picture of ME and that this will do little to promote the understanding of this most debilitating illness. Dutch physicians deserve better!

Literatuur

1. Crowley N, Nelson M, Stovin S. Epidemiological aspects of an outbreak of encephalomyelitis at the Royal Free Hospital, London, in the summer of 1955. J Hyg (Lond) 1957; 55: 102-22.
   
   
2. Ramsay AM. Postviral fatigue syndrome. The saga of Royal Free disease. London: Gower, 1986.
   

A. Scott ME Association London/Richmond en E.M. Goudsmit
Teddington (Engeland), juni 1988

It shows that in 1988 patient support groups were already busy correcting false information, which was of course a thorn in the side of psychiatrists who wanted to claim their territory and relevance in ME/CFS by claiming patients were actually depressed/hysteric/neurastenic/hypochondric/delusional/whatever, because it broke their narrative.

 

[Arvo]

I'm really sorry that happened to you @glennthefrog .

This whole idea of bad outcomes from being in a support group seems truly odd.

More like the BPS crew don't like ME patients asking awkward questions and asking for enough information so they can give informed consent to treatment. If new patients became aware of many of the problems they might have fewer participants in their research.

It's only "truly odd" when you think about it from a normal, factual perspective. There is no reason or proof that support groups are bad for you, they are even actively encouraged in a lot of patient groups, because they can be a great source of support, sharing and education. If you go on about wanting a "holistic" approach to health care, then the reasonable follow-up of that is that you encourage patients to be as well-educated and supported as they can be, to try to maximise their quality of life.

However, when you look at it from a control/abuse/protecting your interests perspective, it makes perfect sense. (Al lot of the bps nonsense does this way, and by 1991 this was already the neat complete package of claims that it still is today, although currently hindered by actual science and a closer look at research papers). Saying patients get bad outcomes from support groups has nothing to do with actual reality. So far my earliest finds of the claim coïncide with Wessely & co trying to become involved in what was then recently dubbed CFS by the CDC (of which cases were rapidly growing, and it got a lot of attention aka potential money opportunities at the time), but there being ME associations, patients, a book (and some physicians) around who were knowledgeable about the physical and laboratory finds and character of the disease.

Spreading the unfounded notion that being in a ME support groups lead to poor outcomes (and e.g. that talking factually about ME somehow created new patients who fancied themselves ill) was an effective way of cutting off the spread of good information that countered their narrative by vilifying it. It was also one of the ways to ensure patients getting isolated, cut off from support, and the information and language they needed to explain what was thought to be happening in their bodies, which gave the psychosocial narrative more space for prominence and credence. At that time there was no internet, you got your information from newspapers, magazines and the evening news. And in the late eighties/early nineties still a lot, if not most, of the physicians were more than ready to believe that it was just a bunch of fussy wimmin. Normally a patient organisation can be a well-informed spokesperson to educate medics, even if acceptance may take while, but for ME that road was effectively closed off, because "everyone knew" they were just keeping people ill who were otherwise able to live normally, so they should not be listened to or taken seriously, especially not more so than those shiny new "experts" that came with easy, prejudice-confirming answers.

ps: Sorry if this sounds like a whole lecture. I've been reading a lot.

 

[Arvo]

EDIT it is quite hard to place Kendell in the UK history. His role is unclear. It is interesting to see his influence elsewhere.

Well hello there mr Kendell:



From "Postviral fatigue syndrome: time for a new approach" in the debate section of the BMJ by David, Wessely, Pelosi, 1988 (Which also thanks Peter White for his helpful advice.)

 

[chrisb]

Moved from this thread: United Kingdom: ME Association news

And in keeping with bps ideology, he discouraged the patient to join a support group or learn information about her illness.

The story of the damage that patient support groups allegedly do is intriguing. SW was obviously a keen proponent of the idea. It is , I think, unclear who originated it.

I was recently looking at the paper The chronic fatigue syndrome-myalgic encephalomyelitis or postviral fatigue S Wessely PK Thomas in Recent Advances in clinical neurology 6 published 1990 ed Kennard.

The chapter that follows it is Neurological Rehabilitation by DT Wade. At p149 he says "The management of disabling disease is being helped considerably by the development of self -help groups. These vary in their explicit and implicit aims, but their potential for help should always be considered."

Perhaps ME must be considered an exception.

 

[Arvo]

The story of the damage that patient support groups allegedly do is intriguing. SW was obviously a keen proponent of the idea. It is , I think, unclear who originated it.

One of the things I've looked into. At this point I'd say the originator is Wessely (though this topic is a process in development and I'm currently looking at other things) with Sharpe giving it a place in the CBM.

In January 1989, in the first article where he is proposing "treating" ME patients with CBT, he is actually published as saying: "Self-help groups can provide considerable emotional and practical support..[...].. Self-help manuals are also useful, and an informative handout should accompany the initial interview."
He means of course stuff he approves of, like stuff from Richard Edwards and a terrible book with a cover blurb promising to bring back the "spark" in the life of 'fatigued women', but the general idea is: support and info are good.

Butler and Chalder, his collaborators who provide him with the CBT expertise, even write an article for MEA, that is published in the Summer 1989 MEA Newsletter. (With thanks to @chrisb for providing that information.)

But from there things seem to sour.*

One of the things that happens is that there are a couple of books published in 1989 by people associated with ME support groups; D. Smith and C. Sheperd from the ME Association, and M. Franklin and A. MacIntyre from the ME Action Campaign.
Wessely obviously feels very attacked by them and writes a long, very vitriolic piece about them in his buddy journal (BMJ, 3rd June 1989 What your patient may be reading), where he portrays them as a sort of fiction and complains about how "especially psychiatrists" are "the villains", ending with "a little more psychology and a little less T cells would be wellcome".

Basically the ME-organisations are not particularly cheerleading his theories about ME and the accompanying CBT approach, although, looking back, they are actually quite open to some of the underlying theories and CBT as a serious treatment option. (There are of course also pieces that are very critical, like a response to Butler and Chalder's MEA piece with a bunch of scientific articles referenced - they will not have liked their patients having access to that.)

From this point on Wessely is homing in on patient's so-called "hostility" towards psychiatry.

*He could of course very well privately have had those ideas before, with the positive support group remark just him opportunistically saying what he thought landed best at his audience, posing as a benevolent ME patient helper, but I do get the impression it is like the angry response of a toxic boy who had expected to be greeted by his targeted girl with open arms, admiration and gratitude for his perceived awesomeness, and then wasn't.

In April 1989 Sharpe, who is in contact with Wessely, also starts to complain about the ME Association and the ME Action Campaign, because they are "rather disparaging of psychiatric treatment", advising that patients need to be encouraged to be as sceptical to their advice as they are about psychiatric treatments. He is at this point for me the first one that explicitly fits those support groups in the CBM, in a way that his Psych Department developed at the time, by assigning them to being a "maintaining factor".

While the notion of ME support groups being harmful to patients fits perfectly with the notions around hysteria, which were the basis for Wessely's image of ME (so I think the general idea is his), it was as far as I can tell so far Sharpe&co who first explicitly fit it into the illness model.



ps: thanks for bringing it up Chris, as because of it I found a possibly important snippet of information in one of my papers.

 

[Sean]

Nice work, @Arvo.

 

[Arvo]

Nice work, @Arvo.

Thank you. I hope in time I'll be able to share more of my research finds, but for now, I shouldn't actually be on here and process my notes!