Is this a still-smoking gun? Wessely, David, Butler, Chalder -1989

[Chrisb]

Another thread recently caused me to recall my introduction to the work of Wessely and Chalder in 1988/89. There was something in the ME Association magazine. I think there was a view at the time that it was absurd, but that it wouldn't catch on. Oh well.

This seems to be it:
http://bjgp.org/content/bjgp/39/318/26.full.pdf
Management of chronic (post-viral) fatigue
syndrome

P27 top of right hand column. "Sufferers have been told that " physical and mental exertion is to be avoided" (ME Action Campaign factsheet 1988). THIS MAY BE CORRECT IN SOME CASES, BUT THERE IS AS YET NO WAY THAT THESE CASES CAN BE IDENTIFIED. IN GENERAL SUCH ADVICE IS COUNTERPRODUCTIVE AND MUST BE SET AGAINST THE FOLLOWING (bolding mine)

-the harmful effect of disuse and inactivity on muscle function, in addition to respiratory and cardiovascular
performance;

-the psychological benefits of exercise on emotional disorders;

-the adverse psychological effects of lack of exercise;

-the deleterious psychological effects of avoidance of feared situations, as in agoraphobia;

-recent evidence that dynamic muscle function is normal in patients with chronic fatigue syndrome,
muscles being neither weak nor fatiguable."


As an analysis this could be considered third rate only in a system allowing for no lower categories. Whatever happened to peer review? Oh, I forgot, we know the answer to that.

Why would it be wrong to assert that what this paper suggests is that , within a group of patients, it is known that exercise will be inappropriate and possibly harmful for some, but that they should nevertheless be encouraged to exercise, on the basis that exercise may benefit others within the group, and it is not possible to distinguish between them?

This seems analogous to the idea of herd immunity, but at least in the case of vaccine damage there is supposed to be a compensation scheme.

The "treatment", says he mockingly -now that I do mock-seems to presuppose that the condition to be treated is entirely psychological or emotional. Presumably those who will not benefit may have a physical condition, but that can be ignored, on the basis that they are specific and not general cases.

In their world do muscles exist in complete isolation from and act totally independent of, other physical systems?

The recommendations include no further visits to specialists or hospitals unless agreed with the therapist.

Decisions such as this would normally be expected at well above the pay-grade of those involved, but this is exactly what happened a couple of years later. Does this tell us anything about this "research?.

It was always known that physical and mental exertion could be inappropriate for some but they went on to make that the basis of their system anyway.

 

[Chrisb]

As an afterthought, if it was known that, for some, physical and mental exertion was to be avoided how on earth did they manage to get PACE past an ethics committee?

Was this disclosed?

Did they say that they were by then able to distinguish between the groups?

If not should this not have all been disclosed to the patients to ensure informed consent?

 

[Chrisb]

The question arises as to what, if it is known and acknowledged that mental and physical exertion is to be avoided in some cases, is the minimum that a health service and its practitioners must do so as not to fall foul of legal or professional regulatory requirements, if susceptible patients are to be subjected to a regimen likely to cause such physical or mental exertion.

I would suggest the following as a starting point:

1. One is under a duty of care not to ignore or minimise this finding until it is disproved by robust science.

2. Ensure through proper distribution of adequate information that practitioners are made aware of potential risks to patients.

3.Ensure that patients are informed of this risk before giving informed consent to treatment.

4. Put in place protocols and guidance for practitioners to assist with the early identification of specific patients who might be damaged or harmed by the general treatment proposed, to ensure that "treatment" is not prolonged beyond the point where potential harm is observed.

5. Ensure the proper follow up and treatment of such patients with reporting to the DoH, comparable to the system for reporting adverse drug reactions. (Although no doubt both systems would be honoured more in the breach than the observance.)

6. Establish research to seek to identify in advance those in whom exercise, physical or mental, is contra-indicated.

Perhaps this is absurdly idealistic. It would be interesting if anyone knows what was actually done.