PACE trial: What’s fear got to do with it?

Study finds therapy and exercise best for ME (from the Guardian, 18th February)

On Thursday, the results of a trial of various supposed methods of treating what the authors insist on calling Chronic Fatigue Syndrome were published, and to nobody’s great surprise, the most successful methods were found to be Graded Exercise Treatment and Cognitive Behaviour Therapy while a pacing technique was found to be the least effective. The study has been condemned by all but one of the British ME organisations, the so-called Association of Young people with ME (AYME). They were reported as saying they hoped the study would allay fears about Graded Exercise Treatment being harmful. (More: XMRV and Me, Scríbhneoir páirt-aimseartha, Stonebird [1], [2], Same Difference with comments from me, Nicky Reiss, CFS Untied, Tefalhead, Hilary Johnson, No Poster Girl; also see the Facebook thread that followed the Lancet’s announcement.)

AYME are remarkably isolated on this issue, and their inner circle are out of touch with not only the patient and advocacy community at large but also much of their own membership. They are surely aware that members have abandoned them lately over the therapies advanced by their medical adviser, Esther Crawley, as did one of their Patrons, Dr Nigel Speight, in 2009. Even Action for ME (AfME), which also has a reputation for not rocking the boat with the medical establishment, have come out and said that their members have reported that GET has been harmful to their health. Similar findings have been reported since the 1980s, and there have been many documented cases of patients’ health, and their lives, being ruined by over-exertion, often encouraged by doctors.

The question is what the patients who participated in PACE were really suffering from, because not everyone who qualifies for a diagnosis of “CFS” actually has ME. It has been stated elsewhere that severely affected ME sufferers were not included in the study, which is certainly good from their point of view but it does mean that the study is irrelevant to 25% of real ME sufferers. AYME are surely aware of the reality of severe ME as a large proportion of their membership has it (they have published two books on living with severe ME in the last few years, one by Claire Wade and the other by Emily Collingridge, both severely affected ME sufferers), and GET has been implicated in some of their deteriorations (notably that of Lynn Gilderdale). It’s also worrying that AYME are talking about getting the housebound involved, as if those people did not have enough to cope with already.

It’s worth noting that some patients do agree that CBT has some benefit in helping them to cope with the illness (there are a few such reports on the HFME’s list of patient accounts of CBT, although most of the reports there are negative), but they also say that it does not help reduce the symptoms and increase their ability levels. Putting housebound, let alone bedridden, patients through this would mean requiring them to make a potentially very damaging journey to wherever the ‘therapy’ was to take place, and reducing the time they could spend on looking after their personal needs or partaking in the few pleasures that are available to them, such as talking to (or otherwise communicating with) friends and family, and increase the time they spend lying in pain, on their own, staring into the gloom. If the patient cannot speak or has short limits on the amount of time they can tolerate another person’s company or speech, that will make including them in the study even more difficult, as well as unethical given the damage it would do to the patient’s health. In addition, the severely affected are those more likely to have classic ME which is hostile to these therapies; these are the patients they know would be harmed by them.

The reason the study found such a benefit in CBT and GET is that the criteria used for selecting participants, the so-called Oxford criteria, do not in fact isolate ME patients, as the vast majority of patient organisations and advocates will testify. Such broad case definitions are thought to be the reason why the incidence of “ME/CFS” is reportedly so high; by some estimates, the broadening of criteria increases the reported incidence five-fold. Patient organisations that use these definitions are likely to be catering for patients with conditions that match the CFS definitions such as the Oxford criteria, but are not ME as defined in the 1950s by Melvin Ramsay et al. There is nothing inherently wrong with patient organisations catering for patients with more than one disease (the Muscular Dystrophy Associations in both the UK and USA do this; the American MDA caters for motor neurone disease patients also); what is wrong is that they present research findings that may benefit some of their members as beneficial to all of them. A significant point of contention is the over-use of the term “fatigue” to describe the debilitation that comes with ME, something that many sufferers say it bears no resemblance to; one woman with severe ME, Amy Bakewell, said in an interview, “I do not feel fatigued or tired. I feel like I’m being physically crushed. I also feel spaced out”. Some say they have rarely felt tired, as they previously knew it, during the time they had been ill:

I had the flu recently and with it I experienced quite a bit of genuine fatigue. I felt extremely relaxed and drowsy and had lots of little naps throughout the day, I just couldn’t seem to stay awake. It really brought home to me the reason why there is such utter public apathy about M.E.: fatigue really isn’t that unpleasant! It is also not in any way, shape or form the main feature of M.E. If only it were.

AYME’s reaction to the study betrays an abject lack of respect and compassion on the part of those running it to their suffering members and their carers. Why do they talk of ‘fears’ of GET being harmful when that is what patients have overwhelmingly reported? Why do they endorse a study which deprecates pacing when their own members, including their published authors Claire Wade and Emily Collingridge, endorse it? It is the bread and butter of activity management for ME sufferers, severe or otherwise, and people I know who have ME have said to me that they have experienced bad spells with their ME and put it down to bad pacing. Do they really think their members, and so many patients over the years, have been lying?

Picture of Emily Collingridge, a severe ME sufferer, in hospitalSomething should also be said about the media’s response to the study. Two newspapers, the Daily Mail and the Independent, ran headlines along the lines of “Got ME? Then go out and exercise”, which is not what the study was saying at all; the Mail’s report had no reference to any critical response to the report, while the Independent had one paragraph at the bottom which quoted Peter Spencer, the chief executive of Action for ME. The Mail’s report has a picture of a young man pretending to be asleep (the expression on his face gives it away that he’s not) and bathed in light, as has been the case before with sleepy models that supposedly represent ME (the picture accompanying the BBC report is just as bad). The picture next to this paragraph (taken from the Stonebird website, run by Greg Crowhurst who cares for his wife, Linda, who also has severe ME) is of Emily Collingridge who doesn’t look glamorous yet sleepy, but sick and distressed. Even if they don’t call the illness “yuppie flu”, which the Mail has done on so many occasions, the use of these kinds of pictures gives that impression.

None of the papers seem to have addressed the issue of the almost total opposition among patients, the concern over who might have been studied and what their exact conditions were, and the welter of anecdotal evidence that suggests that GET is harmful. None of them appear to have contacted charities concerned with ME other than the two already mentioned; the group of scientists involved are known to be wedded to a partly psychological, fatigue-oriented model that does not take into account the distinctive features of ME, as opposed to chronic fatigue, and are widely distrusted by the patient community. They, like the media, have a distinct difficulty listening to patients who do not tell them what they want to hear.

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