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

both the 25% me group and Invest in ME used to have really good archives of all the 'old stuff' but since creating their new websites all of it seems to have gone. I don't know if it would be worth contacting them to find out if they have back-ups?
an "(1988) ME Action Campaign leaflet" does get referenced in various places including SWs 'Old Wine in New bottles', and also I think in Margaret Williams submissions to the Gibson Inquiry(2005?).

and again in SW
Management of chronic (post-viral) fatigue
syndrome

 

I was hoping someone on here might have it... Is anyone on here connected with either 25% ME group or Invest in ME?

 

I have forwarded your request to someone who has worked a bit with 25% group, but not heard back.

 

My wife made a serious tactical mistake today. She asked if I wanted to look at some papers before she threw them out. It was an old ME file-newer things are long gone. It looks like I was diagnosed, and joined the ME Association in 1985. There is a variety of old information sheets and magazines from then until about 1991. The advice given mostly seems sound - although I have not dared look at the parts which do not interest me!. I don't understand the fuss made by Wessely and Goldberg.

There seems to be an ME Action Campaign Factsheet from August 1990 and undated ME Information for Doctors, probably from the same time. I don't seem to have earlier factsheets. The advice in these seems perfectly reasonable. it could perhaps have been updated and modified-but, if so, that would suggest a much more moderate attitude than that displayed by the psychiatric zealots.

Perhaps the best find is an article by Chalder and Butler in 1989, prior to the publication with Wessely and David. There is a powerful rebuttal by Sullivan.

There are some benign pages from Ramsay. It does increase one's antipathy towards certain psychiatrists, responsible for the loss of this approach.

I shall have to see if I can copy and post some parts.

 

It's a Mary Sullivan. I thought she had written a book, but I cannot find a reference and may have dreamt that.

 

No. I may be daft, but I'm not that daft. It will come to me. I'm sure SW referred to the book I'm thinking of in his 1997 tome.

 

I thought it might be worth producing some evidence to refute the claim that "Furthermore, the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group ,the ME Society, which advocates total rest".

TO Woods DP Goldberg Psychiatric Perspectives: an overview British Medical Bulletin (1991) vol 47 no 4 908-918

This is MEA General Advice and Hints -undated probably about 1986

2 Excessive physical and mental activity is often the cause of relapse. This is included by way of a warning. It is possible to enjoy a long period of remission, experiencing only the occasional shadow of an ME symptom, when a brief period of extra physical or mental activity, to which you are not accustomed can bring on the severest of relapse.

The way to increase your activities and involvement in life is gradually and patiently

3 Take adequate rest. If you experience a deterioration in your symptoms you should take more rest. You will not be able to work them off or pull yourself together. At the beginning of your illness, rest should feature as your main treatment. It is possible that the maximum amount of rest taken at this stagee will result in a fuller recovery later with fewer relapses.

As you begin to recover , you will require less rest and you may find it helpful to work out a programme of rest and activity which helps you...

This is the MEA Guidelines for Sufferers dated 2/91

.....referral for active physiotherapy or "exercising yourself to better health" will probably leave you feeling worse and set you back.

Sufficient rest especially in the early stages and during setbacks is advisable. On the other hand prolonged bed rest beyond the acute stage has its dangers since it is possible to get trapped in a vicious circle of immobility and weakness. Within these general guidelines you will need to determine your own levels of rest and activity by experiment and experience.

This is the ME Action Campaign Factsheet August 1990

1 Rest and Relaxation

For people with classic ME in particular, excessive physical and mental effort is to be avoided and sufficient rest is essential. Important; If you do have muscle fatigue stay mobile if at all possible (ie don't stop moving altogether) but DO NOT EXERCISE UP TO OR BEYOND THE POINT OF EXHAUSTION- this could cause a serious relapse.

ME Action Campaign Information for Doctors undated-probably August 1990

Rest: Advise the patient to restand avoid unnecessary exercise, and to alter lifestyle to reduce symptoms. The patient may need to give up work or school for six months or longer. Return to work needs to be gradual....

Gentle Exercise: This may be within some patients capabilities. This is very variable....with sustained improvement a cautious increase in exercise can be encouraged eg gentle walking, but if overdone will lead to relapse. Most patients find their own safe limits and should not be pressured to exceed them. "Graduated Exercise Programmes (recently promoted as a "cure" by some doctors) can be dangerous and may cause prolonged relapse or deterioration. There is no evidence from controlled studies that graduated exercise is beneficial.

Dr Anne Macintyre


Most of this information was published over a year before the Goldberg paper. The evidence speaks for itself.

 

I missed one

MEA The management of patients with myalgic encephalomyelitis by Charles Shepherd June 1988

General Advice

The key advice to patients is that they must "listen to what their body is telling them" and act accordingly. In practical terms this means never exceeding their physical or mental limitations-where it can be avoided-by pushing themselves to the point of mental or physical exhaustion. Patients must learn to strike a careful balance between "beneficial exercise" and the dangers of immobility. Gentle physical exercise...should be encouraged-providing the patient feels reasonably well. Attempting more active evidence or active physiotherapy (which is wrongly recommended by some doctors) will only exacerbate the condition. Prolonged bed-rest is advisable only in the acute stage and should be supervised with great care in long term cases, who may become trapped in a vicious circle of immobility and weakness, and consequently become almost bed-ridden. No patient should, however, feel at all guilty about taking a period of bed-rest in the afternoon...

During a relapse...the patient should try to have a few days total bed rest, and then very gradually endeavour to return to normal...

Some psychiatrists may have failed to notice what most others know. it is easy to lose credibility.

 

You don't happen to have the 1988 leaflet that I mentioned above, do you?

 

Afraid not. I don't think the omission is vital. Anything it did say was corrected before Goldberg's comment. Would that he, Wessely and others had corrected their errors equally speedily-if indeed there were errors on the part of the charities.

 

I think this is my final offering on the subject

MEA Newsletter Winter 1989

A Letter from our President- Dr Melvin Ramsey

SO WHAT IS MY ADVICE TO THE TRUE ME PATIENT

Rest
Rest is a basic essential for all cases of ME. By resting I do not mean spending months in bed, although bed rest may be essential for some patients for short periods initially. By resting I mean taking adequate periods of rest and listening to what your body is telling you.

After the initial period of restthe patient should adopt a pattern of living well within the limitations which the disease imposes upon them. This will be different for different people. ME patients do not conform to one pattern.

Encouragement to take excessive exercise has proved disastrous in several recent cases. This does not preclude the taking of gentle exercise which is an important part of the patient's rehabilitation towards better health

WHAT IS THE FUTURE FOR ME PATIENTS

.......Correct management in the early stages is therefor essential, rest first and rest enough. Slowly and gradually build on your recovery as it begins with gentle exercise and increased activity according to the limitations the disease imposes on you .

Sadly he died fairly soon after.

The more I read the greater difficulty I have with Goldberg. Did he have something to sell? Considering the backroom influence he has exerted it is hard to have confidence. Was there really a gap in the market for Wessely, Sharpe and Co?

 

I remember Dr Ellen Goudsmit complaining about such claims. She pointed out that she edited the newsletter/magazine of ME Action in the early days (possibly under a pseudonym?). I'm not sure whether she ever mentioned this in submissions to the literature; she may well have done.

 

I remember all this stuff as I read avidly at the time because I had just been diagnosed after 17 years of not knowing why I could not do what everyone else could. Every suggestion of what could help went into a notebook as I worked out what I could do to finally work towards getting better while I still had a chance at life. It was a heady time full of hope.

In all that reading of books, magazines and scientific papers I never got the idea that total bed rest when you felt able to be up was of any use. Possible I missed something you could take out of context but I never thought of it as a plan.

The only thing like that I remember was the guy who wanted people to take something and have total bedrest to change their over breathing. He was seen as a dangerous crank by the community.

 

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

 

This is precisely the point. Ramsay always talked of relapse and remission, whilst saying that symptoms could be exacerbated by exercise. I think that this was regarded by the psychoquacks as reinforcing the dysfunctional cognitions and maladaptive behaviours. They did not like the language as it suggested there was a continuing something from which to relapse.

I'm not sure when PEM was first used. I was not aware of it until much later, but I may have stopped paying attention when it seemed that all hope was lost for proper science

 

According to MEpedia:

 

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.