This follows on from my previous post on Prof Peter White’s new GETSET study: Do GET Yourself…
The star of the GETSET guide is ‘Julie’, a (presumably) fictitious patient who valiantly adjusts her activity diary to ‘stabilise’ her schedule so that she is doing a similar amount of activity every day. Julie has already become a favourite with online patients who are impressed with her remarkable level of activity for someone with CFS/ME. She now has her own Twitter account and according to her profile picture wears a Wonder Woman suit.
This is scarcely surprising, as before commencing therapy she was working five days a week, walking to work and back two or three times a week, attending a weekly yoga class, and going out with friends on Thursday and Saturday evenings. In spite of all of which, she sought medical help for CFS/ME.
I suppose we have to assume she is a typical patient of Prof White’s. Why, after all, would he choose to use a diary from an untypical patient? So once again we are left wondering what illness we are dealing with here?
Julie’s attempt to stabilise her diary is also interesting. From my experience of my own local NHS clinic, which used to be one of the better ones, setting a baseline level of activity for their own rather more patient-driven strategy usually entailed cutting back considerably on the total level of activity, partly by lowering standards on things like housework.
By contrast, the remarkable Julie was able to stabilise her week’s activity by fitting in an extra hour-long study period, trebling her hour-long reading sessions from two to six, introducing three hours of housework (which she had previously neglected entirely), spending an hour phoning round her friends (again previously neglected), going out for Sunday lunch, and even cramming in five extra hours of TV – all this at the same time as keeping up her two nights out a week, her yoga class and her thirty-five hours at work – though the latter now included three ten minute rest periods a day (so it’s good to see some pacing going on).
Presumably work were ok with these rests, though it does stand out as a possible example of the clinics expecting more cooperation from employers then they’re actually prepared to give. Nevertheless it is quite a feat, this ‘stabilisation’ of Julie’s; you have to wonder how she does it. Has she overturned the laws of mathematics?
Not quite, though the answer is Wonder Woman-like enough. She does it by taking twenty-one hours less sleep a week.
That’s right. You heard it. Twenty-one hours less sleep. That’s the equivalent of three hours less a night. All that neglecting housework was obviously making her dozy. Now she’s stabilised and doing all the extra stuff in an orderly manner, she no longer needs so much sleep.
And how long does this massive change take her: adding in three hours of housework, extra study and reading, extra time for friends, plus cutting out twenty-one hours of sleep etc etc? The guide warns ‘it may take a week or longer’.
Well, Rome wasn’t built in a day, but I suspect Prof White might have wanted it finished by the weekend.
On top of all this, Julie has to add in some stretches, and then some favourite exercise (on top of the three hours of housework she’s just introduced) and then increase the amount of exercise by ‘no more than’ 20% a week.
The guide advises:
You may find that at the beginning of a week when you have increased your exercise time that you experience some stiffness or fatigue. Do not worry – this is a normal response to increased activity. If you continue with your exercise, and do not cut back or add any other physical activities, your body will adapt.
Thank goodness for those adaptable bodies of ours. We’d be in a pickle without them, wouldn’t we?
Seriously, though, the more you read this stuff, the more you think they must be talking about something other than ME. Yes, many of us struggled on at work for ages, dragging ourselves around, but we didn’t manage two nights out a week and a yoga class as well. And if we stabilised to what we could readily cope with every week, we wouldn’t be adding in extra studying and housework thank you very much.
It seems obvious that this plan was not written by someone with ME, nor by someone who had ever listened to anyone with ME (not really listened). Even the grading of the different activities (into high, moderate, and low level activities and rest/sleep) is a nonsense.
OK, walking, shopping and yoga are classed as high, which is accurate enough; but working itself is classed as moderate, as is housework (which any ME patient knows is strenuous exercise). Showering is classed as low level, but this is also strenuous and can be a landmark activity. For many people with ME, it is all they can do in a day. Talking with friends on the phone can also be strenuous in its way. It is not ‘low level’ for most of us.
So are they really dealing with ME or with other forms of chronic fatigue?
The NICE criteria were used for the study. These were never intended for use in research and are unduly inclusive, as with Fukuda. They are only a little better than the much derided Oxford criteria. They require fatigue with (arguably) post exertional malaise but unless this is carefully defined, it can gather in all and sundry. Many other typical ME symptoms are mentioned in the NICE definition but only one of them is required. So we could be talking about a sample of patients most of whom do not have ME but some other form of chronic fatigue: a whole brigade of Julie’s.
This may indeed be the case because one of the exclusion criteria for the trial is ‘contraindications to exercise’, So really any patients with genuine ME should have been excluded from the sample. Research such as that by Prof Mark VanNess has shown that we have an abnormal response to exercise, while the US Institutes of Medicine suggested that ME should be renamed Systemic Exertion Intolerance Disease to describe the condition in terms of this essential characteristic. So ‘contraindications to exercise’ should certainly apply to us.
Indeed, patients have long suspected that many people with genuine ME have been excluded from exercise therapy trials (and also, incidentally, from NHS clinics) because it was clear they were too ill to respond well to the ‘treatment’ on offer. The trouble is such trials are nevertheless presented as relating to CFS/ME – or even just to ME – so that what may work for generic chronic fatigue is assumed to also work for what is an entirely different, much more serious, condition.
None of what I’m saying here is exactly groundbreaking and if I don’t get to the end of this soon one or two of you (Julie excepted of course) may be nodding off. But what I have less often heard discussed is the question of why proponents of the deconditioning (aka biopsychosocial or bps) theory do not simply accept that their ideas don’t apply to everyone?
If patients with fatigue due to depression, for instance, respond well to GET and CBT, then why not try to specifically identify such patients instead of dragging ME patients into it too? The researchers might then improve on what are quite frankly pretty mediocre results even with all the sleights of hand with the figures; they would stop getting hassle from us; and patients with ME could be finally left alone to get the rest we need. It seems to me that this would be win-win situation.
From time to time the bps researchers do this in a half-hearted way. They’ve been known to say that their research only applies to CFS, not to ME, for instance – and here in the GETSET paper, reference is only made to CFS, not to ME. But there is no consistency. The GETSET patients’ guide – in contrast to the paper – refers to CFS/ME, and when the two are conflated by reporters in the media, Prof White and his colleagues rarely if ever correct it.
So why do they insist on muddling us all together? Can they just not bear to lose us as their patients? Or could it be that they need us in some other way? Could it be that they need the presence of ME patients to make their theories appear to stand up?
Take deconditioning for instance. If you look at Julie with her five day working week, her walks, her yoga, her nights out twice a week etc, how can it be that she is deconditioned? Surely she does so much that she can’t be… But if she isn’t deconditioned, then how – according to the bps theory – can she be ill?
Maybe the researchers need the presence of some really ill people (who look like they might be deconditioned) to lend their theory some credence, to make it seem like they know what they’re talking about? Because Julie may benefit from the ‘therapy’ but she doesn’t fit the theory any better than we do.
Hmm, just thinking aloud really that last bit and it’s not really up to us patients to make sense of it all, more to point out where things don’t add up. So it may be worth summarising the blatant incongruities I’ve encountered while going through the GETSET guide one more time:
How can they claim there’s no implication that the condition is ‘caused by psychological factors’ when the treatment is based on deconditioning due to false ideation?
How can the treatment be relevant to ME if patients with contraindications to exercise are supposed to be excluded?
The GETSET paper talks about CFS and the guide about CFS/ME. Why the discrepancy?
How can a supposedly typical patient like Julie be deconditioned when she’s been working five days a week, attended yoga class, gone for walks, and had evenings out twice a week?
On top of which there are additional problems with the trial which I haven’t gone into here. These read a bit like the bps researchers’ greatest hits. They include:
- No significant improvement in physical functioning reported.
- Addition of a new primary outcome measure after the trial had started.
- All outcome measures were subjective and self-reported.
And, this being bps, there’s more as well of course. You can take a look at a detailed critique of the study from Dr Charles Shepherd of the ME Association here.
Right, Julie, it’s time for your yoga class now…
(Julie’s ‘before and after’ schedules can be found on pages 10 and 11 of the GETSET Guide.)
12 thoughts on “Spotlight on GETSET Julie”
Good article. GETSET Julie clearly doesn’t have ME if she can make such major changes in a week without crashing badly.
They are definitely not studying ME. Even when I was mildly effected and pushed myself to keep teaching part time for over a decade, any tiny increase of activity beyond my normal tipped me into relapses lasting usually 1 to 2 weeks before I dragged myself back to work again, getting sicker and sicker until I had to give up work.
I suspect they carefully chose only people with fatigue due to depression or not getting enough sleep. Yet despite that they still got insignificant results. What a fiasco. And so damaging to people with real ME.
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Ah, ‘Julie’ … I’ve got to wonder if there’s any ‘false ideation’ going on with her. *Sigh*
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The longer this whole, sorry BPS saga continues, the weirder and wilder their claims become. How can this guide possibly be aimed at someone who suffers from ME?
How could anyone with even the slightest knowledge of the illness think that this guide is relevant to ME sufferers?
The mind really does boggle, even on a non-brain fogged day.
The only advantage is that it shows just how ridiculous the BPS theory is. The (considerable) downside is that there will be poor, desperate, newly diagnosed people who will not yet have realised just how damaging this advice can be.
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True – to be told all you have to do to get better is exercise is such a welcome message to so many newly ill. If only it were true…
White is just making himself seem all the more childishly ignorant all the time.
I’d like to see White’s weekly schedule. I doubt that he does anywhere near as much as his supposed patient!
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I think their McGuffin is more “dysregulation” than deconditioning now…
Little did they know Julie was also sacrificing goats at a pagan rite and taking baby blood in capsuls as a supplement. She was anemic and possibly a vampire. *giggles* Before some researcher from the Uk tries to sue me for hurting their feelings consider the price of an international lawsuit, I’m from the US and we thankfull have real researchers here. (You do have some in the UK but the biopsychopathsocial dedicated are all not among them, they are at best the janitors of fatigue who cannot be proven wrong about therapy being good for depressed people and exercise being good for everyone who is tired or sick, less it end up in more noncompliant patients with other illnesses and cost the NHS and tax payers there a royal bundle from preventable problems when they don’t have the counterindication people with ME and CFS* have.)
*In the US we rarely use ME as you may know, so CFS is a often a synonym here at times due to official diagnosis/insurance/education hurdles. However I believe we do have ME here, given what I have read of the consensus criterias, etc.
I hope we may all be delivered from the “false cognitions” of the BPS-dogma and probably slightly tired mom Julie (btw pretty much everyone I’ve met in the last ten years has CFS by the standards set by “Julie” including my cousin who just gave birth, my mother who works 40 hours a week, and every person I went to school with…).
Thinking about it, wasn’t it the editor of The Lancet who wrote that half the published scientific research is wrong??
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I really enjoyed the humor with which you described the heroine of this ludicrous guide. Thank you so much for lightening the deadly serious load of how much our illness is minimized and misunderstood.
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More money & glory in it if you pretend it applies to the whole swathe of ME & cfs even while excluding those with PEM problems. Justifies more clinics, more references to psych “specialists,” more consultancies, more business for their businesses. And for their victims — contempt and defamatory pronouncements.
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I’m afraid you may be right…
Thanks to everyone who left comments. Sorry for late and minimalist responses this time.