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

[Barry]

I would like to thank all those who informed the study or commented on this paper, but in particular Mike and Maggi as those most closely involved with ME in Wakefield, and Simon Wessely of King's College London.

[my bold]

Don't know if the Mike was MS.

 

[Lucibee]

So were the prospective studies ever done reliably?

As far as I can tell, it is only prospective in the sense that they followed up patients after initial identification. All the factors measured (and found to be associated) were collected by questionnaire at least 6 weeks after the initial assessment, and for some, 5 years after.

As Charles Shepherd noted (pdf of correspondence), the alcohol avoidance factor could easily just be a key symptom of the condition that is simply indicative of severity. Association is not causation.

 

[Dolphin]

J Rheumatol. 2005 Dec;32(12):2416-20.
Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members.
Friedberg F1, Leung DW, Quick J.
Author information

Abstract
OBJECTIVE:
To examine the benefits and problems of a chronic fatigue syndrome (CFS) and fibromyalgia (FM) support organization as reported by its participants.

METHODS:
Active members (n = 32) and inactive members or dropouts (n = 135) of a regional support organization for people with CFS and FM completed a 26 item questionnaire by telephone interview or by self-completion and postal return.

RESULTS:
The most frequently endorsed benefits of membership were illness legitimization (67.8%), finding out helpful new information (66.4%), and feeling understood by others (62.2%). Lower frequency endorsements were given to: helped to find (35.0%) or deal with (38.5%) doctors, and helped to improve my illness (36.4%). The most frequently reported reasons for dropping out were inconvenient location (37.8%) or time (37.0%), too much negative talk or complaining (33.3%), too sick to attend (28.8%), and illness or coping improvement (29.6% each). The active-member group showed significantly higher (p < 0.04) symptom severity scores and less illness improvement (p < 0.01) in comparison to the inactive/dropout group.

CONCLUSION:
This cross-sectional study suggests that support groups for CFS are viewed as helpful by participants on a number of illness related issues. On the other hand, active members reported greater symptom severity and less illness improvement than inactive members or dropouts.

PMID:
16331774
[Indexed for MEDLINE]

 

[BruceInOz]

Not that I know of. It seems strange that a hypothesis presented over 20 years ago has not only never been confirmed with reasonable evidence, but is assumed as a fact by some people.

Strange is an understatement. But unfortunately par for the course.

 

[JaimeS]

radical Internet pressure groups

*waves*

 

[JaimeS]

Currently, Healthwise encourages support group participation, but has some warnings, including "Some groups may cause more harm than good if they don't have a positive and empowering approach."

Kaiser is beginning to creep me out.

Or is it just a matter of belief that the causation goes in the direction they prefer?

Clearly a belief. One would presume that people are more likely to make use of a support group if they need support. And that milder patients are likely to be less likely to seek and less likely to remain reliant on that support.

 

[JaimeS]

Thanks, community! <3

 

[Barry]

"Some groups may cause more harm than good if they don't have a positive and empowering approach."

How about striving for the truth, and the good science that goes along with that ... is that positive and empowering enough for these people I wonder?

 

[chrisb]

I apologise. I ceased my reading of the Abbey paper, referred to above, too soon-but there is only so much one can do in the call of duty. At p247 there is a paragraph entitled "The role of patient support groups" which it is probably necessary to quote in full if an understanding is to be gained of the intent:

The 1980s witnessed the rising popularity of self-help groups for a wide variety of medical illnesses and social problems. CFS is no exception and a number of groups with differing aims and different locations on the political spectrum have come into prominence. Groups often offer emotional and social support, advice about pragmatic issues, and advocacy both on behalf of individual patients and on a wider scale for the recognition of the disorder by government agencies and insurance carriers. The advice that they dispense is eagerly sought by patients, because there are few venues for obtaining information and individual physicians are often uninformed about chronic fatigue syndrome. However, in addition to the positive aspects of their work, there are concerns about potentially deleterious outcomes when therapies are advocated which may increase secondary disability (Wessely et al 1991) or are toxic, such as germanium (J Rennie personal communication 1990), or when groups are sponsored by commercial groups which may be involved in health fraud activities (J Rennie personal communication 1990). There has been no systematic study of the role of these groups, although this seems necessary, particularly in the light of the finding by Sharpe at al (1992) that participation in an ME support group is associated with poorer outcome.

The Wessely et al paper referred to is:

Wessely S, ButlerS, Chalder T, David A 1991 The cognitive behavioural management of the post viral fatigue syndrome
In: Jenkins R, Mowbray JF (eds) POst-viral Fatigue syndrome. Wiley, Chichester p305-334.

As Sharpe participated in the discussion following the presentation of this paper and did not demur from the remarks it is presumed that he broadly accepted this interpretation.

 

[FreeSarah]

You’re being very unfair on old Michael. I totally blame PR and S4ME for the fact that I’m still ill. My mistake was joining an online patient support group when I had only been ill for 12 years. I’d probably be fine by now if it wasn’t for you lot. You bastards.

 

[Sean]

 

[chrisb]

You’re being very unfair on old Michael. I totally blame PR and S4ME for the fact that I’m still ill. My mistake was joining an online patient support group when I had only been ill for 12 years. I’d probably be fine by now if it wasn’t for you lot. You bastards.

Not our fault. Blame the doctors. I was told that there was no treatment and advised to join the MEA and await developments. Thirty odd years later I am still waiting.

This question of support groups shows either a certain naivety on the part of Sharpe et al or a cynical use of language on their part-not implying, in the sure belief that others will infer. At the time there was discussion of the dramatic rise in membership of the various support group and suggestions that this was fuelled by self diagnosed people with all manner of ailments which might, or might not, have been related to ME. They could have taken more care to indicate what they were not wishing to suggest.

 

[Lucibee]

It's interesting to me that they don't ever seem to have formally tested this. Even if you find that an association is temporally related (ie, indicative of a causative process), you still need to do the experiments to check. It would be difficult to do in this case, because it would involve taking pts at initial assessment and randomising them to 2 groups - one that receives automatic membership to an ME support group, and the other group who are banned from joining any support groups (which would be unethical anyway). Then you would check to see whether one group was more severely affected than the other after several years or so.

Or alternatively, you could look at other conditions, say MS, and see if membership of a support group was associated with severity there. Is it? Does anyone know? Or is the answer too blindingly obvious to even bother looking?

 

[Sly Saint]

This question of support groups

Hmm, thinking about it........I was a member of AfME for the first 8 years or so. Does that count?
I have improved since I left, but then I also moved house later joined PR, and then here........(?)

 

[Barry]

Not our fault.

Errrmm ... it was satire

 

[Barry]

It's interesting to me that they don't ever seem to have formally tested this. Even if you find that an association is temporally related (ie, indicative of a causative process), you still need to do the experiments to check. It would be difficult to do in this case, because it would involve taking pts at initial assessment and randomising them to 2 groups - one that receives automatic membership to an ME support group, and the other group who are banned from joining any support groups (which would be unethical anyway). Then you would check to see whether one group was more severely affected than the other after several years or so.

Or alternatively, you could look at other conditions, say MS, and see if membership of a support group was associated with severity there. Is it? Does anyone know? Or is the answer too blindingly obvious to even bother looking?

They do seem to have this fixation on making bold claims without properly testing their validity. Sometimes a bit of a trial ...

 

[Lucibee]

Sometimes a bit of a trial ...

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

 

[Adrian]

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

I had thought they may have looked at it in the mediation paper. I have a vague memory that they didn't find an association (but that wouldn't be a point they would discuss in detail).

 

[Adrian]

It's interesting to me that they don't ever seem to have formally tested this. Even if you find that an association is temporally related (ie, indicative of a causative process), you still need to do the experiments to check. It would be difficult to do in this case, because it would involve taking pts at initial assessment and randomising them to 2 groups - one that receives automatic membership to an ME support group, and the other group who are banned from joining any support groups (which would be unethical anyway). Then you would check to see whether one group was more severely affected than the other after several years or so.

Or alternatively, you could look at other conditions, say MS, and see if membership of a support group was associated with severity there. Is it? Does anyone know? Or is the answer too blindingly obvious to even bother looking?

You could try to take the support group out of the equation and look at what the support group gives. For example, an understanding of the disease, a way of getting hints on how to manage better. Then try to assess the level of people's knowledge in different areas. The overall notion of a support group is probably not a good one since there is not much consistency across groups.

My suspicion would be that some people benefit from the base lining they do with CBT/GET and never progress past this. Basically by learning to pace and manage activity a bit better. But people who are active members of support groups have learned these things and hence gain no benefits. I suspect they may have encountered such things early on in small trials where they perhaps personally talked to patients a bit more rather than hiring therapists. But then let their prejudice dictate their interpretation.

 

[Lucibee]

I had thought they may have looked at it in the mediation paper. I have a vague memory that they didn't find an association (but that wouldn't be a point they would discuss in detail).

Ah - that's why I couldn't find it. "ME group membership" has morphed into "CFS group membership" by the time they get to the mediation paper. Given that it forms such a key part of their theories, I'm surprised they didn't include it as one of featured variables. But then the whole mediation analysis is fairly meaningless anyway.