Discussion in 'General ME/CFS News' started by BurnA, Oct 26, 2017.
Good to see PEM being taken seriously.
However, the prospect that CBT can change the illness beliefs of a patient, and that graded activity can reverse or cure CFS, is not supported by post-intervention outcome data.
Reference 157 is PACE.
Quite my impression, some parts are ambiguous; there are paragraphs about the stress hypothesis, for example that do not match with other biomedical researches talked about.
But, yes, still progress!
Oh, wow! Thanks Liv for the link to the whole document. This will take some time to read, but the extracts you've all been highlighting look like amazing progress.
I picked up on the same bit Trish. What supports the assumption that functional ability can be improved? The overall impression of the guide is quite good, I think, so I guess this is a hangover from the idea that patients can get better with theraputic support. Maybe also from medicine not wanting to admit they are powerless?
I'd like to see that bit improved but the rest is pretty good to be fair.
I suppose if you take the view that a decent Therapist would explain about Pacing to a patient, you could see that as improving functional ability, in that it lessens the risks of crashes. In the context of the paper it fits, it's just that we are not used to it being used in this context?
I am slowly working through the full document, and sadly it is proving mixed and inconsistent.
Still an important step forward, but also quite problematic. Three steps forward, two steps back, kind of thing.
Might have more to say when I have got through it (if I can make it all the way, not really up to reading this much heavy detail anymore).
For now, I recommend treating it with caution.
I think if anyone is pulling together published work into a treatment guide it will be a bit strange. It will need to talk of things like CBT/GET to get past the gatekeepers at the BMJ. So as you say a move forward but not as big a step as we would like.
This is definitely an improvement, but it is definitely a mixed bag in its attempts to appease the psychosocial school. It is good that it mentions CBT, but only as an aid to coping (as it is used with other chronic illnesses), not the PACE- style approach to address our supposed "false illness beliefs". It also mentions that CBT is most effective when there is comorbid depression, which is good. It also mentions that exercise is most effective when there is comorbid depression, but then proceeds to devote an inordinate amount of attention to exercise, regardless of the presence or absence of depression.
The bolding is mine, and is a wonderful acknowledgement to see. But it doesn't really gel with the notion that there is a rationale for exercise as a treatment. It acknowledges that exercise may be harmful, but apparently, only mod-severe "CFS" get PEM ( so those with mild "CFS" must presumablyhave a different illness entirely?).
This bothers me a lot. It implies that medical specialists are right, and patients are wrong, and seems to be priming doctors for a fight when it comes to treatment (your patients will disagree with you, just ignore them). I don't know any CFS support groups which have indicated they prefer "gradual exercise", and I doubt it would be preferred at a rate of 91% compared with pacing at 50%. Perhaps this is a typo, and the numbers are meant to be reversed?
This paragraph follows on from the previous one about differences of opinion about treatment. I couldn't help but feel that there is an implication that patients (who the reader has just been told strongly disagree with medical specialists as to appropriate treatment) have sought out unnecessary treatment, and so their treatment should be simplified and reduced. Why reduce a patient's treatment if it is necessary?
I am loving the phrase "exercise-induced!
Some of the good stuff:
Good highlights. Some awful stuff and some good stuff. The good stuff I think shows a genuine effort to try and get things right. The awful stuff is, unsurprisingly, all the stuff for which there is no good evidence and which conflicts with what patients report.
It is a step forward, I don't want to be too critical, but thetrs still a long way to go till something like this gets published and it's actually accurate, it ought Tobe so simple really, and not partly pandering to 'experts' who are simply wrong and out of date and who's influence just needs to be jettisoned as an unsightly mistake.
I thought that doctors were not obliged to follow NICE Guidelines or Clinical Knowledge Summaries for any medical condition, and so it was likely that most doctors wouldn't even read them. I also thought that these days the only guidelines they feel compelled to follow are the ones produced by their local CCG. I have no idea what they make of BMJ best practice guides.
Am I being too pessimistic?
In effect, it looks like two different documents that they have tried to blend into one but which clearly don't match well.
Large chunks of it have what looks suspiciously like White's grubby fingerprints all over it.
The BMJ are trying to have it both ways to save face. Bit late for that, isn't it?
I think we have the IoM report to thank for that it has legitimized that view and provided supporting evidence hence which makes it harder for those like White who disagree to challenge.
Trial By Error: The Surprising New BMJ Best Practice Guide
13 November 2017
By Steven Lubet and David Tuller, DrPH
Edit: thread https://www.s4me.info/index.php?thr...e-surprising-new-bmj-best-practice-guide.993/
for those not on FB:
Just checked out the Recommendations section, which is of course where most people will swing to first ..
Chronic fatigue syndrome (CFS) is a chronic medical condition, with a waxing and waning of symptoms and impairments.
Long-term management with a single primary care physician is recommended. Emphasis is placed on maximising
functional capacity and improving symptom management. Medications, redundant diagnostic and laboratory testing,
and ongoing consultant referrals should be kept to a minimum. Patients should be periodically reassessed for depression
as untreated and more severe levels of depression may lead to a slower treatment response. One strategy may
be to provide counsel to patients every 3 months and to reassess them for other health issues and treatable diseases.
Patients should be educated on how secondary physical deconditioning can emerge due to increased resting and
activity restriction. Difficulties and fears associated with attempting to increase levels of physical activity should be
normalised. Patients are instructed in establishing and maintaining a daily low-impact physical activity routine (e.g.,
walking, stationary biking, stretching, and swimming). Graded exercise programmes should be structured and monitored
to prevent cycles of over-exertion and prolonged inactivity. A referral to a specialist in cognitive behavioural therapy
(CBT) may also be recommended. Patients should be routinely monitored for depression and encouraged to engage
with personally meaningful activities and social supports. Where indicated, patients should be assisted in accessing
appropriate mental health care"
So.....whilst the headlines may have changed the underlying philosophy hasn't
Seems like it. Its peppered with that kind of stuff. On the one hand suggesting this and that test and then on the other deferring to mental health responses. My head is spinning trying to pin it down
My reading isn’t great right now but I’m intrigued by the ventrolateral periaqueductal grey matter bit in Aetiology
Why is this in there? Do they think this can be a cause of movement problems? I’m Curious because I’m investigating my own movement problems. These certainly don’t come on due to traumatic situations but is there something inferred about this mechanism being faulty?
Separate names with a comma.