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

...probably. It's worth a study.

 

"The links with ME are obvious, since it is now regularly stated that ME is 'caused by'(Wilkinson, 1988) or 'the result of (Shepherd,
1989 a) a virus. The description preferred in the scientific literature, ' postviral' fatigue, confirm current views on aetiology. Fatigue toxin has not disappeared either: in one outbreak an acidic toxic metabolite was found in the urine of patients (Hill et al. 1959). 'Fatigue vaccine' based on neutralizing antigens is available via a private allergy hospital (Byran & Melville, 1989). More subtle links are also evident in the relationship between epidemic Royal Free Dis-ease and poliomyelitis. One view is that the illness protected against poliomyelitis (Ramsay,1986), echoing Arndt, others believed that the fear of poliomyelitis in the prevaccination era facilitated the spread of a psychological illness(McEvedy & Beard, 1970).

Theories of infection provide a link between ME and 'disorders of fashion' (Stewart, 1989).The symptoms of ME overlap with those of chronic brucellosis, candidiasis and many allergy syndromes (Stewart, 1987; Straus, 1988). Such illnesses are not exclusive: ME is frequently alleged to be caused by Candida and associated with severe allergy (Dawes & Downing, 1989
Jenkins, 1989;MacIntyre, 1989), although ortho-dox practitioners are more sceptical (Shepherd,1989 a, b; Smith, 1989). Stewart (1989) has shown that of 50 patients who previously felt they had'environmental hypersensitivity', 32 went on to develop post-infectious neuromyasthenia. Most acquired their diagnoses after reading newspaper articles, and had multiple self-diagnoses con-currently. Suggestible patients with a tendency to somatize will continue be found among sufferers from diseases with ill defined sympto-matology and external (usually infective) caus-ation until doctors learn to deal with them more effectively.

One of the reasons for the rapid rise of ME (the ME Association is Britain's fastest growing charity, attracting 150 new members per week (Smith, 1989)) lies in the nature of the principal alleged aetiological agent. Viruses are among the commonest explanations given for non-specific transient illnesses that abound in the community (Pill & Scott, 1981). Such attribution has many features relevant to ME. The agent is external, and is beyond the subject's control. There is no 'maleficium' (Helman, 1978), nor guilt or self-blame. External attributions of illness to entirely organic causes distinguish ME patients from matched psychiatric controls(Wessely & Powell, 1989). "

(PDF) Old wine in new bottles: Neurasthenia and.... Available from:
https://www.researchgate.net/publication/20973575_Old_wine_in_new_bottles_Neurasthenia_and_'ME' [accessed Jul 27 2018].

This lengthy extract from Old wine in new bottles: Neurasthenia and ME by Simon Wessely perhaps partly explains the association in Wessely's mind between the MEA and viruses referred to in the earlier quotation. One can see the development of the idea. The MEA favours a viral explanation of the illness. The viral explanation apparently absolves the sufferer from justifiable guilt and self blame and prevents him or her from taking responsibility for the illness and recovery from it. Ergo membership of the MEA perpetuates the illness. It may have taken some time for the idea to be expressly stated.

There seem to be glaring errors. On the one hand he mentions the various alternative ideas which some sufferers held at the time, and possibly still do, and equates them with self help groups. On the other hand he quotes Smith and Shepherd with apparent approval as being orthodox and more sceptical. Ironic that these were the then medical advisor to the MEA and his successor. In any event my recollection is that the MEA was split roughly evenly between those who believed in viral causation and those who believed in other causes, mainly candida. It is therefore not entirely easy to follow the argument. But then it never has been.

 

You only have to glance at the Eisenberg reference [available here: pdf] to see that's *exactly* what they are doing.

"My argument will consist of four theses. First, that all scientific concepts are inventions of the imagination. Second, that the human sciences are beset by a paradox: what is believed to be true about behaviour affects the very behaviour which it purports to explain. Third, that the trajectory of illness is influenced by the beliefs patients and doctors hold about course and prognosis. Finally, that physicians, no less than their patients, are constrained by socially constructed roles."

 

Another book I'd like to get my hands on is the Ciba Foundation Symposium 173 monograph on CFS (1993). I suspect that some of the chapters will be similar to those in the book @chrisb and I currently have on order, but it is the discussions between chapters that are likely to be most revealing. I had a glimpse on Google books, but reached my page limit fairly quickly. Unfortunately it is only available as a rather expensive eBook from Wiley.

Yesterday, I noted that there was a similar symposium 5 years previously, reported on in BMJ by Jane Dawson in 1988 - Brainstorming in post viral fatigue syndrome. British Medical Journal, Vol. 297, No. 6657 (Nov. 5, 1988), pp. 1151-1152 - but not available in the BMJ's pdf archive for some reason.

It starts as follows:

I wonder if there was a transcript made of that meeting...

 

1988 "of objectively measuring the muscle (and mental) fatigue that is its hallmark"

1940 Tilt table test
1946 Quantitative EEG
1949 CPET

They didn't try hard enough. I can forgive them for mass spec (1947).

 

You've got to wonder if they ever read these over before they published.

Most people acquired their diagnosis BEFORE reading newspaper articles, too! Another example of @Webdog 's quantum effect in action! (I'm sure this is clinically meaningful, as I've a degree and a white coat -- somewhere.)

In all seriousness, the idea that the patient was able to find a meaningful diagnosis because it existed somewhere in the popular literature of the day is not the 'gotcha!' they think it is.

 

Chronic Fatigue and its Syndromes Wessely, S., Hotopf, M., & Sharpe, M. 1999 OUP has:



References:

4. [posted above] Follow up of patients with fatigue presenting to an infectious diseases clinic.
Sharpe M, Hawton, K, Seagroatt V, Pasvol G, Br Med J 1992
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883193/pdf/bmj00083-0025.pdf

44. Virtual narratives: illness representations in online support groups. Davison K, Pennebaker J.
In petrie K, Weinman J (ed.) Perceptions of Health and Illness: Current Research and Applications. London, Harwokd Academic Press, 1997

63. Randomised, double-bind, placeebo-controlled treatment of fluoxetine and graded exercise for chronic fatigue syndrome
Wearden A, Morriss R, Mullis R, et al., Br J Psych 1998 https://www.ncbi.nlm.nih.gov/m/pubmed/9828987/

64. Chronic fatigue syndrome: a follow up study Bonner D, Ron M, Chalder T, Butler S, Wessely S. J. Neurol. Neurosurg. Psychiatry 1994
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1072927/

From Bonner et al.:

In contrast with Sharpe et al [24] we found no association between membership of the
myaglic encephalomyelitis association and continuing morbidity at follow up. In our series only three of those interviewed were
active members of the myalgic encephalomyelitis association at four year follow up.​

Reference 24 from Bonner et al., is the Sharpe et al., follow up paper above.

 

You mean there was the quantum foam?!

 

Just sent off a note to Healthwise. I expressed concern regarding their list of ME/CFS patient group warnings, noting the absence of patient group warnings for other diseases.

I also invited Healthwise to join S4ME.

 

Re. the Wessely quote above. Typical for the BPS people, they do not understand human behaviour: the way patients behave is simply a reaction to the circumstances, which are unusual and therefore patient behaviour will also be unusual. Other illnesses don't meet such neglect and condescending behaviour by health authorities. This affects patients negatively and they adopt various strategies to deal with it, and often that involves seeking contact with people that understand.

If you keep telling a group of people their problems are all in their heads, eventually they will band together to defend against this form of gaslighting.

And of course that patient groups that are heard the least will tend to write the longest replies on the internet.

 

Anyone mind if I replace the word "groups" with "medical professionals"?

Still waiting for those secondary gains. Mind you, it's only been 4.5 years ...

The Wesselydrivel from the book above shows the typical reaction to criticism of a certain kind of psychoquack - just diagnose and label the critic some more!

 

Yes, I have been saying this for some years. Some of us are anxious about going out and about for example. Its not phobia either. Its experience. Things get very much worse, including exhaustion, pain, disorientation, etc., again and again, and its a prolonged downside, sometimes even permanent. So anxiety is adaptive here, not maladaptive.

We adapt to our circumstances in ways in which most people adapt, though with variation. Its the circumstances that are unusual, not our adaptations, and unless they bother to figure out the circumstances they will falsely perceive maladaptation.

 

It's appalling that a bunch of psychs can't tell the difference. I have a phobia, and the way I react when it is triggered is fairly unmistakeably phobic. But if my wife says "shall we go for a walk?" and I say "No, don't really feel up to it at the moment" that's a completely different kettle of fish. Are we to believe that trained psychs are acting in good faith when they say that they can't distinguish between the two situations? To label our preference for not doing things that exacerbate our symptoms as "phobia" is one of the more ridiculous examples of their taking one piece of medical terminology and misapplying it to a totally unrelated situation. Since when did saying "no thanks, don't think so" pass as a phobia? How did they pull that one off?

 

It is not really surprising. Who was it who said:

I also feel that this decision (to list CFS/ME under "other neurological disorders"), if it has been made, reflects an undesirable stigmatisation of psychiatric disorders. The main difference between CFS and the major psychiatric disorders is neither aetiological nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry.

It is also a most unfortunate message to send sufferers. It colludes with the erroneous belief that this is a severe disorder of neurological functioning for which there is little effect (sic) treatment, and a poor prognosis. It will discourage any sensible efforts at rehabilitation. As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome. I cannot believe that this is the intention of the Department, if only on grounds of cost!?

Undated letter Wessely to Aylward marked as received on 6.10.93

Perhaps the training only extends to identification of the power of lobby groups.

 

I have a question;

In 1969 (or whenever the WHO classified ME as neurological) were there any ME lobby groups to lobby them to do so?

 

[QUOTE=" External attributions of illness to entirely organic causes distinguish ME patients from matched psychiatric controls(Wessely & Powell, 1989). "[/QUOTE]

This is an example of the idiotic papers that were published at the time and have lead to a feeling nowadays that the BPS ideas about ME are well founded. It would seem obvious that psychiatric controls would not be likely to attribute their illness to entirely organic causes. They should have used physically ill controls.

As usual, I have no references as I lost them but one paper compared ME patients with people who had gone to A&E, or something like that. Of course they found that ME patients were more likely to attribute their disease to an entirely organic cause when the "control group" included things like "fight outside pub". The paper explicitly stated that they did not use controls with chronic disease as it was known that a chronic disease made you more likely to believe that things had an organic cause!

My favourite was one which examined GP records and found that people who went on to have CFS were more likely to have seen their GP in the previous year. The most common reason for the visit was "illegible"

 

The powerful one can define what is what and what is "normal".

I think a quote by Erich Fromm is quite suitable for so many situations:

"The most normal ones are the sickest and the sickest are the healthiest. [...] How happy he who has a pain when he lacks something. We know that if man did not feel pain, he would be in a very dangerous situation. But a lot of people, the "normal ones", are so adjusted that they have left everything that is their own. They are so alienated, so instruments become so robotic, that they no longer feel any conflict. That means their real feeling, love or hate, is already so repressed, so stunted that they form the picture of a chronic, mild schizophrenia."

https://www.youtube.com/watch?v=Dt09hfllNc8

 

Well, who can be blamed for disliking an association with psychiatry, looking back on their 200 years of history of violence, suffering, discrimination and degradation? I'm not the biggest fan of religions either due to their mostly violent and anti-humanistic past (and by times present).