Tuesday, July 5, 2016

Is being a member of an ME support group holding you back?


Some medical professionals seem to believe that being in an ME support group is bad for us. I believe that they have misunderstood the studies, and that they fear that support groups make us feel that we have no hope of improving. I think that, in fact, being a member of a support group is good for us, and that the data supports this.

Why do some medical professionals view ME support groups with suspicion? This puzzles me because I help to run a small local group, and I am often told by members how helpful it is. Where does this negativity come from?

The first study that I came across which looked at the issue was one by Sharpe, Hawton, Seagroatt and Pasvol, published in the BMJ back in 1992. It said that "Functional impairment was significantly associated with … belonging to a self-help organisation". This is a formal way of saying that patients who did not improve much were more likely to be members of a support group. Many people would read that and think that it stated, quite clearly, that being a member of a support group held patients back. But that isn't what is says: it is easy to jump to a wrong conclusion.

For example, there is an "association" between smoking and heart disease: that doesn't mean that everyone who smokes will have a heart attack, nor that all those who suffer heart attacks have been smokers. It simply says that people who smoke more are more likely to have heart attacks (or that people who have had heart attacks are more likely to have been smokers). Back in the 50s and 60s lots of doctors (most of whom smoked) argued that it could simply be that people with demanding or stressful lives were more likely to get heart attacks, and that these people were also more likely to smoke more. It took a lot of further investigations to prove the real link.

On the other hand, there is also an "association" in the UK between the number of consonants in the name of each month how cold it is. Months like December and January have more consonants than June or August, and are colder. No-one has yet suggested that re-naming January as Jaary will make it warmer. Sometimes statistics throw up meaningless "associations". Sometimes the association is not what it seems at first sight. Statistical analysis is very useful for showing up patterns that could easily be hidden in complex data, but it is not a substitute for clear and logical thought.

(There is a better explanation of this confusion here at phoenix rising.)

There were 144 patients in the study. They were assessed at the start, then again once more, anywhere between a few months later and 4 years later. 41 patients belonged to self-help groups, and it turned out that these patients did not seem to improve as much as the others did. But, and this is an enormous "but", you have to read the full report to find that people were only asked about membership of a self-help group at the end, not at the start. In other words it could simply have shown that people who found they were not improving much were more likely to join a support group: that makes sense to me!

A number of doctors believe that mental attitude is a key factor to recovery from ME/CFS, so it was easy for them to assume that being in a support group was harmful. They assumed that patients in such groups could get depressing views about the illness, and could be encouraged to do very little but rest. Simon Wessely (who was not involved in the study) wrote that although the authors emphasised that being a member of a support group wasn't necessarily why they didn't improve as much, a possible explanation for these "disturbing findings" are that patients' beliefs are an important factor in holding them back from improvement. Despite the more obvious assumption that patients who aren't getting better are more likely to join a support group, he instinctively read it the other way.

After this, there were a number of studies that asked at the start whether patients were members of support groups. The study in 2002 by Bentall, Powell, Nye and Edwards, published in the British Journal of Psychiatry, is an example. There were 95 patients who completed the study. As usual, the assessments were by questionnaire. Only 17 patients were members of a self-help group, but their statistical tests suggested that they made less of an improvement than those that were not in a group. We could challenge the strength of the statistics, but let's assume that the link is true. Does this now mean that membership of a support group is a bad thing? Well, no. Interestingly, the results of an earlier study by Powell and Bentall in 2000, and the 2011 PACE study show us that a very different interpretation is possible.

In 2000 the BMJ published a study by Powell, Bentall, Nye and Edwards with 127 patients. They were given sessions where symptoms were explained and a graded exercise programme was designed for them. They found that it made little difference whether a group received just two face-to-face sessions, or whether they had seven further sessions either by telephone or face to face. They also assessed patients after three, six and twelve months, and found that most of the improvements happened between the start and the next assessment.

The PACE trial had many more patients (640), and it too found that most of the improvements occurred between start and the next assessment. In both cases we have a rapid improvement after getting a diagnosis, having the illness explained, and a couple of therapy sessions. In other words, talking about the illness, understanding a little more about it, knowing that your symptoms were typical, and getting advice about exercise led to an improvement in the way they answered the questionnaires. But that's as far as it went. The improvement did not continue over time with further Cognitive Behaviour Therapy or with Graded Exercise Therapy.

Isn't that type of support pretty much what goes on in self-help groups? People meet others with the illness and discover that the symptoms that worry and puzzle them are, in fact, quite common; that it isn't early onset dementia; that it can be both unpredictable and difficult to manage. They get advice on how to plan their lives, how to avoid boom and bust, how to get the best out of things.

Surely the logical conclusion is that any people who have joined support groups during the very long wait to get an appointment at a specialist centre, have, thanks to contact with others with the illness, already worked through much of the help that the specialist centres have to offer. They will already have gained more knowledge and confidence about the illness, and already have reaped those benefits; the specialist ME centres will have little to offer in addition to that.

I am guessing that the reasons why some medical professionals can't or won't see it that way are that they do not accept that people with lots of experience with the illness have much to offer people new to ME/CFS (which I think is reflected in the way in which medical professionals favour the term "self-help" group). They may believe that all "self-help" groups are really offering is reassurance and some understanding of the illness, and, are suspicious that these groups may give the impression that nothing can be done, and that the outlook is utterly bleak. Most importantly, they have the idea that after patients have seen them and made some progress, these improvements steadily continue long after they have been seen: something that is shown not to be so by the PACE trial. This isn't unique to those treating ME/CFS of course. How many of us have been treated for something by a specialist, assured that the problem is all sorted, only never to see a clinician again for a follow-up appointment to see if there were any long-term side-effects?

In addition, a minority of those who specialise in ME/CFS appear to see support groups as a threat to their authority: this is particularly noticeable in the specific criticisms that patients have of the PACE trial (now supported by a number of researchers), where the reaction to these criticisms from some quarters is very defensive/aggressive.

So my thoughts are simple: being a member of a support group gives people with ME/CFS significant help in the long wait for an appointment at an ME/CFS centre, and that ME/CFS centres actually do not offer much more than the advice and social support available from good support groups. After all, no medical treatments whatsoever are available on the NHS for the treatment of ME/CFS.

By the way, please remember that all of these "improvements"
are improvements in the answers to questionnaires – subjective assessments. Psychologists have spent years showing how easy it is to manipulate people into giving the kind of answers they want to questionnaires: in particular, patients who spend time and effort (and often money) in treatments, often delivered by kind and thoughtful professionals, may feel that they ought to report an improvement even if there is no measurable improvement. This is a well-known effect: people feel "ungrateful" if they say that the efforts of the kindly therapist have been worthless, particularly if they have been told, repeatedly, how effective it is and how the patient themselves focus too much on their symptoms. The big question of course is whether there were any real improvements (objective improvements) such as with walking, climbing stairs, working full-time or part-time, or in general activites. It will not come as any surprise to you to discover that not many studies on ME/CFS have used real, objective assessments, and that these assessments show very little or no improvement. More of that later.


  1. The biopsychosocial school of thought (not really a school, just a belief system), which has been adopted by NHS for at least ME and CFS, holds that "CFS/ME" (their term) is caused by inappropriate illness beliefs - the patient has somehow become frightened that if she does too much she will get sick again, when she's not really sick at all. That is, her symptoms are "medically unexplained." And if they're medically unexplained now, they always will be. No new methods in science, no new theories in biology. This is important, because it underlies the whole theory: medically unexplained symptoms, or MUS (an insurance term).

    They then equate "MUS" with nothing biological here at all - rather ironic, given this is supposed to be the BIOpsychosocial school of medicine.

    The patient may really have been sick at one time, but is no longer - yet fears the illness that is long gone. Or there could be other reasons. But the problem here is she suffers from "false illness beliefs" in thinking she really is sick. That's why support groups are bad - because they support her in her "false illness beliefs."

    But she looks sick. Ah - that's because she's "deconditioned" from behaving like she was sick for so long. Graded exercise, combined with cognitive behaviour therapy to teach her she really isn't sick after all - and she'll be good as new.

    Then there is that little matter of deception - even though the doctor is supposed to know her symptoms are "medically unexplained," which they translate into not having biomedical causes, they let her keep thinking it is.

    So the doctor is told to willfully deceive the patient at the same time the patient is supposed to be separated from those who care for her (and actually believe she's sick).

    And that's the source of the belief (and it is a belief; nothing scientific here at all) that support groups will somehow harm the patient. They reinforce her own conviction that there's actually something physically wrong with her. Which is wrong because .... ?

    Suppose they are the ones who are wrong. How cruel to separate someone from people who are helping her live with the terrible disability caused by a serious biomedical condition. But they can't be wrong. That's impossible. They must be infallible.

    After all, if there were really biomedical evidence that could explain the symptoms; if, say, the US National Institute of Health (NIH) had hired the Institute of Medicine to come up with a new definition, and in that report, the IoM had insisted that this was not a psychiatric illness at all (they did, last year); if there were thousands of peer-reviewed, published articles on biomechanic, immune, neurological abnormalities - SPECT scans, blood tests, CPETs - they wouldn't keep saying this, would they? They'd at least put it in their footnotes and let the reader decide, wouldn't they? Surely a reputable journal would insist that they include references to research that disproved their theories, right? Isn't that the way scholarship is supposed to happen?

    Well - that literature is out there, but it is not cited. Ever. If anyone here is interested, a good summary of the literature is available here:

    This was a lovely post - but what a shame to have to write it.

    1. Lovely post, indeed, and excellent Comment, too, Mary! Thank you both.

      I was a SG Leader back in the mid-90s, and I know lives were saved by the information and understanding that group disseminated. The guest speakers who provided validation and specific symptom guidance were also life-savers (Katrina Berne, PhD was one of them). Alexis Shelakov, virologist and one of the 3 who walked out of the meeting that called this utter devastation CFS gave a talk that over 200 patients and family members attended. This could not have occurred without a support group to put it together.

      After TV and radio shows during a two day period with Katrina Berne, we had over 300 calls for help from those who were not even diagnosed but had specific identifying symptoms, people who were desperate and looking for help, people who could not understand why they felt so sick and why they couldn't do anything at all without needing to be in bed.

      I myself would not have been able to understand the damn disease if the support group leader, Lisa Johnson, had not put together a library of research articles that helped us understand the symptoms. She was leader prior to myself, and her guidance and leadership was instrumental in helping me carry on at a pivotal point in my illness progression.

      It is a shame that there are not as many SGs anymore, but our online presence has no doubt enlightened many, including more doctors and patients alike.

      Again, thank you both for this informative and encouraging article and comment.

    2. Thanks both for your kind comments, and for adding more meat to the bone. All of the people that have joined our small local support group have been so relieved to find that their weird and unexplained symptoms are common. Contrary to the idea that we hold people back, I believe that by tackling the boom/bust cycle, and coming up with efficient ways to do things, we help expand people's lives. As you both rightly say, how else would we get a proper understanding of the illness?

    3. I am a retired Nursing Professor and have both taught and done nursing research using the professional methodology (Following the rules and protocol for ligitament studies)... When reading scientific research I always look at the population samples and how they divided up the groups.
      The should always be one group called the control group to rule out any errors or potential weaknesses in a study.
      You have explained very well why this is done. You cannot draw conclusions that one thing causes something else in scientific research. The Golden rule is "You cannot prove anything in research, you can only 'show' or find 'support' to your hypothesis or research question.
      It is a shame that much of the research that gets attention from politicians or media is actually flawed in many areas. Also unless a research study can be duplicated more than once the results are considered only interesting and not conclusive.

  2. It all depends on which support group you join. Sadly, there are those that do harm by spreading false information and suggesting damaging therapies.

  3. True, and I agree that that is a serious concern: I know of one local group that was like that. But if we encourage people with ME to join a variety of support groups - facebook, charities, online groups, local support groups etc. - they will soon discover which ones give out poor advice. Isolation is a major problem when you have ME, and medical specialists need to recognise the value of the wide range of support on offer.