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

[Woolie]

They had the data in PACE to look at this. Wonder why they didn't...

I wanted to add that the PACE authors tried to hint that their long-term follow-up failed because a large proportion of the people who responded to the follow-up were members of patient organisations - proportionately more than in the entire cohort:

The baseline characteristics of the participants who did and did not take part in this follow-up did not differ apart from the fact that participants who were members of a patient organisation for myalgic encephalomyelitis or chronic fatigue syndrome were more likely to take part (table 1).

White et al. are clearly hinting that those in patient organisations might be less likely to improve, but they are very careful not to make that claim outright. They just leave the sentence "hanging" there, so that readers will hopefully draw the same conclusions that they did.

This is a common strategy I've noticed in all the BPS work: if you can't make the argument without it sound lame or prejudiced, then just state the observation and leave the reader to work out what you're implying for themselves. You see this in the way they often just state that syndrome X or symptom Y is more prevalent in females than in males. 'nuff said.

 

[Lucibee]

Clearly, they included the item on alcohol consumption hoping that they could pin any non-recovery on bad behaviours like drinking too much. Inconveniently for them, it had the opposite effect.

I don't think that's fair. Alcohol avoidance because of exacerbation of symptoms had been noted long before they got involved.

It's more likely that they are trying to spin a patient personality thing - the A-type, perfectionist, neurotic, teetotaller. The only problem is that they have never measured alcohol avoidance before illness onset. Because if they ever did, they would find it's not true.

 

[Woolie]

I don't think that's fair. Alcohol avoidance because of exacerbation of symptoms had been noted long before they got involved.

It's more likely that they are trying to spin a patient personality thing - the A-type, perfectionist, neurotic, teetotaller. The only problem is that they have never measured alcohol avoidance before illness onset. Because if they ever did, they would find it's not true.

I just remember a few "patient vignettes" that members of that group created to train doctors, and in those, patients were often portrayed as unpredictable and highly impulsive - feeling too "sick" to go out a few days, and then going out for a two-hour walk followed by a late night at the pub. And in the training video, the professional had to help the patient see that this sort of boom and bust pattern is what's sustaining the illness.

 

[Lucibee]

I just remember a few "patient vignettes" that members of that group created to train doctors, and in those, patients were often portrayed as unpredictable and highly impulsive - feeling too "sick" to go out a few days, and then going out for a two-hour walk followed by a late night at the pub. And in the training video, the professional had to help the patient see that this sort of boom and bust pattern is what's sustaining the illness.

That's why I've never understood why they haven't got behind pacing as a management strategy. It seems like the most obvious solution. Unless they did originally, and found that it didn't cure people, so assumed that they were booming and busting in secret?

 

[Esther12]

Well that's been a very interesting day. All I can say is that they are experts at laying down the tracks and letting everyone else come to their own conclusions.
They themselves tread a very cautious path and are very careful NOT to say that "being in support groups leads to a poor outcome". If the occasional person messes up and says something "controversial", they get sidelined. I'd never really appreciated what good politicians these people are... Hmmmm.

Yeah, this is one reason why I think it's important to try to go back to original quotes when criticising their stuff... it's so easy to think that they said something that was merely implied by their words.

PS: Thanks to everyone for this long and interesting thread.

 

[JaimeS]

That's why I've never understood why they haven't got behind pacing as a management strategy. It seems like the most obvious solution. Unless they did originally, and found that it didn't cure people, so assumed that they were booming and busting in secret?

Never attribute to logic what can easily be explained by 'never thinking about something 'cause it's inconvenient'.

 

[chrisb]

I was also going to return to the question of rest as allegedly advocated by the "ME Society" according to Goldberg. There may indeed have been an ME Society though I have never heard of one and most of the discussion seems to have centred around the increase in membership of the MEA at the time. Although I no longer have evidence as to the advice of the MEA on the subject there is in the Jenkins/Mowbray book an article by David G Smith entitled The Management of Post -viral Fatigue Syndrome in General Practice. I am not sure as to the exact dates but I suspect that this was shortly after he ceased to be medical advisor to the MEA, although it is hard to imagine that his view as to practice had changed greatly in any intervening period.

His comment was "A gradual recovery programme is essential, as is the advice that too much rest is as bad, if not worse, than too much activity. Prolonged periods of rest are to be avoided as they lead to a perpetuation of the very symptoms being complained of." He advocated pacing with attempts to gradually increase activity, but not pushing on regardless. It is hard to see how Goldberg could have objected to that. Perhaps he had something else in mind.

 

[chrisb]

I don't think they've misunderstood at all. They're playing games

Far be it from me to comment. But.....it is always worth remembering Wessely's letter to Aylward in 1993 bemoaning the possibility that changes to the DWP Handbook would see ME regarded as neurological. It is hard to imagine that the Department of Health's Principal Medical Officer for Mental Health would not have been consulted over, and been part of the process. Jenkins was the holder of that post between 1988 and 1996.

 

[Snow Leopard]

I've seen papers where researchers have misquoted THEIR OWN PAPER! And it's then been used as evidence in NICE guidance.

Reminds me of Andrew Lloyd frequently claiming CBT works when speaking to the media. (conveniently forgetting that his study found no effect compared to a medical placebo).

 

[adambeyoncelowe]

I was also going to return to the question of rest as allegedly advocated by the "ME Society" according to Goldberg. There may indeed have been an ME Society though I have never heard of one and most of the discussion seems to have centred around the increase in membership of the MEA at the time. Although I no longer have evidence as to the advice of the MEA on the subject there is in the Jenkins/Mowbray book an article by David G Smith entitled The Management of Post -viral Fatigue Syndrome in General Practice. I am not sure as to the exact dates but I suspect that this was shortly after he ceased to be medical advisor to the MEA, although it is hard to imagine that his view as to practice had changed greatly in any intervening period.

His comment was "A gradual recovery programme is essential, as is the advice that too much rest is as bad, if not worse, than too much activity. Prolonged periods of rest are to be avoided as they lead to a perpetuation of the very symptoms being complained of." He advocated pacing with attempts to gradually increase activity, but not pushing on regardless. It is hard to see how Goldberg could have objected to that. Perhaps he had something else in mind.

As I understand it, Smith left the MEA due to his divergent beliefs. He'd apparently been convinced of the value of treating the condition with amitriptyline for sleep and Prozac for fatigue by one of the BPS lot. (ETA: This requires constant monitoring for interactions/liver issues.)

He then published a tract on this treatment regime, which was picked up by one or two newspaper columnists. That practice is still used by some BPS clinics.

His website still lists the details, and has a potted history: http://www.me-cfs-treatment.com

 

[chrisb]

As I understand it, Smith left the MEA due to his divergent beliefs. He'd apparently been convinced of the value of treating the condition with amitriptyline for sleep and Prozac for fatigue by one of the BPS lot.

He then published a tract on this treatment regime, which was picked up by one or two newspaper columnists. That practice is still used by some BPS clinics.

His website still lists the details, and has a potted history: http://www.me-cfs-treatment.com

I was only considering the question of exercise and rest. He did in the paper also recommend sedative antidepressants for sleep disorders and antidepressants for neuropsychiatric symptoms associated with the disorder, eg depression, agitation, mood swings and emotional lability. He suggested quadricyclics and 5HT reuptake inhibitors. I thought that the parting of the ways was more to do with the MEA wishing to retain the persistent viral model and him wishing to move away from that when findings were not replicated. I thought it was only later that he adopted somewhat strange beliefs. I may be wrong

The point I was wishing to make was that he was certainly not advocating total rest as might have been believed from Goldberg's comment about Me patient organisations.

 

[Lucibee]

His comment was "A gradual recovery programme is essential, as is the advice that too much rest is as bad, if not worse, than too much activity. Prolonged periods of rest are to be avoided as they lead to a perpetuation of the very symptoms being complained of." He advocated pacing with attempts to gradually increase activity, but not pushing on regardless. It is hard to see how Goldberg could have objected to that. Perhaps he had something else in mind.

Interesting to contrast the different approach to setbacks. Smith points out that "a continued high activity level can produce an exacerbation. The patient then feels that further exercise is impossible and this would probably result in their return to total rest and even bed from which the recovery process can be very slow. These features can be seen clearly when talking to patients who do not manage their problem well, where a story of 'ups and downs' of fluctuation with good days, bad days, good weeks or bad weeks is all too common."
(This is just before @chrisb 's quote about a gradual recovery programme.)

But then on exacerbations, he says, "When this occurs, the activity programme should be cut back, and recovery to the previous level of functioning may take a little longer than would be normal in an otherwise healthy person."

Contrast this with the PACE GET Txpist manual: "A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback. This is to reduce the many negative consequences of rest, and to allow the body to habituate to the increase in activity. If activity and exercise is reduced at this time, the boom/bust cycle continues, and the body is not able to desensitise to the increase in activity: which is, of course, an essential component of a graded increase in exercise and activity."

And the CBT Pt manual: "If you have a temperature or another illness on top of your CFS/ME, it is important that you increase your rest for a day or so, ie until your temperature returns to normal. Do not be tempted to rest for longer, or until all of your symptoms subside, as this may prolong your recovery."

 

[chrisb]

Yes, I thought Smith was at that time sound and I suspect that there were many, like me, who when we first heard of Wessely and Chalder, thought that they advocated madness which would never catch on.

 

[Mithriel]

I remember the MEAssociation and activists being incensed by this at the time as no one in the community had ever recommended total bed rest. It was a typical case of making an accusation they knew was untrue to bolster their ideas.

With there being no internet in those days (for me anyway!) I never got the details but there was a feeling abroad that Mowbray had turned to the dark side when he made the collaboration to publish this book.

It was a very shocking time. Everything had been going well with the VP1 test giving great results and other research implicating mitochondrial problems, then all of a sudden it became psychological and CFS.

 

[Trish]

I've just looked through Smith's treatment guidelines. He uses a tricyclic for sleep, and an SSRI taken in the morning for fatigue. Both started at very low dose and increased according to effects and side effects.

His treatment program starts with a very strict pacing to find base level, and that includes no TV, computer, reading or other mental or visual stimulation as well as physical activity pacing. And keeping regular sleep hours (length of sleep not specified). He reckons if you do this properly, you should then be waking refreshed every morning after a couple of weeks.

Then you very gradually add activity. If you wake unrefreshed you've done too much so you cut back to a level where you wake refreshed. I guess this could be a proxy for PEM, since if you have PEM you won't wake refreshed. So he's not advocating the GET style push through regardless of symptoms.

If you get an infection you should go to total bed rest until you recover from it rather than pushing on.

The program sounds like it was designed by someone who has no idea what real life is like. He expects people to be able to do exactly the same every day for months on end. Ha bloody ha.

He claims if you do this properly you will inevitably improve over time to a good level of functioning.

Edit: A couple of times he let his prejudices about who gets ME show - he gives as examples of things that are not too intellectually demanding and therefore OK to do - a couple of lightweight womens' magazines, and Radio 4 Woman's Hour.
And he describes ME as coming entirely from the brain and says stress is the cause.

 

[chrisb]

Edit: A couple of times he let his prejudices about who gets ME show - he gives as examples of things that are not too intellectually demanding and therefore OK to do - a couple of lightweight womens' magazines, and Radio 4 Woman's Hour.
And he describes ME as coming entirely from the brain and says stress is the cause.

I think something must have happened to change him. He never hinted at such views when writing in the MEA magazine or in his book.

To revert to Goldberg's criticism of advice from support groups in relation to rest, I have found the following quote by Wessely et al:

"For a long time the commonest advice that patients received from was a variety of sources is (sic) to rest, avoid activity, and wait for nature to take its course. An American self-help book (48) heads a section with the title "Rest, Rest and More Rest" and discusses "aggressive rest therapy", as does an English self-help title. (120)

48 Felden K Hope and Help for Chronic Fatigue Syndrome; The official guide of the CFS CFIDS Network. New York 1990

120 Franklin M, Sullivan J The New Mystery Epidemic. ME. What is it? Have you got it? How to get Better. London, Century 1989.

In Chronic Fatigue and its Syndromes. Wessely Hotopf, Sharpe at p342.

Exactly what these have to do with UK support groups is a mystery, so I shall have to keep looking.

 

[adambeyoncelowe]

I think something must have happened to change him. He never hinted at such views when writing in the MEA magazine or in his book.

To revert to Goldberg's criticism of advice from support groups in relation to rest, I have found the following quote by Wessely et al:

"For a long time the commonest advice that patients received from was a variety of sources is (sic) to rest, avoid activity, and wait for nature to take its course. An American self-help book (48) heads a section with the title "Rest, Rest and More Rest" and discusses "aggressive rest therapy", as does an English self-help title. (120)

48 Felden K Hope and Help for Chronic Fatigue Syndrome; The official guide of the CFS CFIDS Network. New York 1990

120 Franklin M, Sullivan J The New Mystery Epidemic. ME. What is it? Have you got it? How to get Better. London, Century 1989.

In Chronic Fatigue and its Syndromes. Wessely Hotopf, Sharpe at p342.

Exactly what these have to do with UK support groups is a mystery, so I shall have to keep looking.

His website explains why: he and a colleague tested lots of patients but couldn't find a single causative virus. Ergo, viruses couldn't be the cause and he was immediately taken with something like a central sensitisation theory.

 

[JaimeS]

Andrew Lloyd

Not of the Lloyd criteria?

 

[chrisb]

[I'm sure @chrisb will let me know if I've missed anything]

I think that I have at last found the relevant lines in the Wessely et al paper of 1991. It is much less overt than expected-one has to immerse oneself in the style to understand it. Abbey apparently had no difficulty picking up the reference. This seems to come in the same category as the Goldberg argument, but much better concealed:

Nevertheless, with the occasional exception (Edwards 1986; Dobkin 1989) patients with PVFS are usually told from a variety of sources that lack of activity is invariably and permanently a consequence of fatigue. Such advice may be both inaccurate and counterproductive, and may serve to perpetuate the very disability that it is intended to minimise. p312-313

One of the sources of such advice is clearly thought to be the support groups. Note the "may"s. There seems to be no evidence to support the conjecture. Earlier in the paragraph research is quoted but there is no reason to believe that it is directly relevant or applicable. They refer to healthy populations or those with pain symptoms. This seems to be the style-fill the work with citations and references and then argue by analogy, even though the analogy is rather unpersuasive.

 

[adambeyoncelowe]

I think that I have at last found the relevant lines in the Wessely et al paper of 1991. It is much less overt than expected-one has to immerse oneself in the style to understand it. Abbey apparently had no difficulty picking up the reference. This seems to come in the same category as the Goldberg argument, but much better concealed:

Nevertheless, with the occasional exception (Edwards 1986; Dobkin 1989) patients with PVFS are usually told from a variety of sources that lack of activity is invariably and permanently a consequence of fatigue. Such advice may be both inaccurate and counterproductive, and may serve to perpetuate the very disability that it is intended to minimise. p312-313

One of the sources of such advice is clearly thought to be the support groups. Note the "may"s. There seems to be no evidence to support the conjecture. Earlier in the paragraph research is quoted but there is no reason to believe that it is directly relevant or applicable. They refer to healthy populations or those with pain symptoms. This seems to be the style-fill the work with citations and references and then argue by analogy, even though the analogy is rather unpersuasive.

So yet another lie that's become a factoid in the BPS bullshit arsenal.