BMJ best practise

Trish said:
Looks a lot better than NICE guidelines in that it specifies PEM, talks of biological basis and emphasises need to not overtax energy.

I'm not keen on this part:
'a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.'

NO. I want a good physician who can make a clear diagnosis of ME and coexisting conditions and treat appropriately. And good advice on pacing using actometers, heart rate etc. I don't think that needs a 'team of therapists'. And 'improve functional capacity' sounds scarily like GET.
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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.
 
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.

On exercise:
"The chronic disability leads to a sedentary lifestyle that may foster deconditioning of muscular, cardiovascular, and autonomic nervous systems. This provides the rationale for supervised, very low impact exercise if a suitable, well-tolerated programme can be individualised for each patient. However, exercise may be counterproductive in severe and/or bedridden CFS because the treatment may induce post-exertional malaise (PEM) and prolonged exercise-induced exacerbations. Mandated exercise programmes with predetermined goals cannot be endorsed because of their potential to harm patients whose primary problem is exercise-induced loss of function."
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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?).
"Treatment is complicated by strong differences in opinions between patients with CFS and their support groups compared with medical specialists. CFS support groups preferred gradual exercise and pacing (91% vs. 50%), complementary and alternative medicine (74% vs. 16%), and pharmacological therapy (71% vs. 42%), while physicians recommended rehabilitative measures (28% vs. 94%). [183] These results indicate a large gulf between patients and doctors about treatment expectations of the rehabilitative therapies national guidelines and systematic reviews recommend, and indicate that patients are disillusioned and wary of the graded exercise and CBT those reviews espouse."
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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?
"Physicians are encouraged to conduct a thorough treatment history, identify all physicians and healthcare professionals (e.g., chiropractor, acupuncturist) currently involved in the patient's care, and obtain a list of prescribed medications, over-the-counter medications, vitamins, supplements, and homeopathic remedies. For some patients with CFS, their treatment regimens may be complicated and extensive. A general treatment strategy in such cases may involve a stepwise process of simplifying the treatment regimen across time (e.g., gradually reducing the number of medications). Treatment interventions tend to be multidimensional and tailored to each patient's circumstances. The focus of treatment should be orientated toward symptom management and functional improvement, and away from repeated, extensive diagnostic procedures, or ongoing referrals to additional specialists."
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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?
"The 'deconditioning hypothesis' proposes that CFS is perpetuated by reversible physiological effects of bed rest and avoiding activity, and that exercise will reverse consequences of deconditioning. [157] [200] [201] Exercise is presumed to prevent and reverse muscle atrophy and loss of sympathetic orthostatic reflexes, and therefore improve physical function. Exercise may be beneficial for recovery of athletes, healthy individuals, cardiac patients, and others who may experience temporary immobility, but it is not clear whether patients with CFS respond in the same way. Graded exercise has been proposed to treat 'typically Western diseases' associated with reduced activity in the modern lifestyle, such as accelerated ageing, premature death, low VO2max, cognitive dysfunction with reduced short-term memory and recall, anxiety, depression, chronic pain, constipation, and metabolic syndrome. [202] [203] Low grade inflammation related to interleukin-6 (IL-6) has been proposed as a common denominator. [204] However, this highly generalised view and exercise prescription may not apply to the theories of metabolomics dysfunction and post-exertional malaise in CFS.

There is widespread concern among CFS physicians that mandated exercise programmes can cause significant patient deterioration because of the exercise-induced musculoskeletal pain, neurocognitive impairment, weakness, and prolonged bed rest patients may require to recover from them. [205] What appears to be deconditioning may in fact represent the inability to generate adequate ATP for muscular work, [12] and intolerance of exercise-induced acidosis as the diagnostic PEM epitomises. [205]"
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I am loving the phrase "exercise-induced! :)

Some of the good stuff:
"It is inappropriate to use the 1991 Oxford criteria of fatigue as an alternative for CFS because the Oxford criteria are based on 'mild fatigue', do not require PEM, and allow inclusion of chronic idiopathic fatigue, depression, and other fatiguing conditions.[9] Up to 30.5% ofthe population have chronic fatigue[10] andwould meetOxford criteria for study inclusion. Studies that used the Oxford criteria are not representative of the more severe and restricted definitions of CFS that the CDC, Canadian Consensus,or SEID criteria define. Exercise and cognitive behavioural therapy studies that used the Oxford criteria for study inclusion are biased and misleading because people with true CFS are underrepresented, with excessive recruitment of people with chronic idiopathic fatigue and depression who are known to respond well to these modalities.[11]"
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"The biopsychosocial model ofCFS and its treatment with CBT has been adopted by many governmental organisations with the aims of eliminating many presumed psychogenic and socially induced factors that maintain illness behaviours.[205] The literature does not justify the biopsychosocial model of CFS when studies are limited to CFS patients with moderate to severe fatigue, and PEM in accordance with the Centers for Disease Control and Prevention (CDC) and Canadian Consensus Criteria.[1] [2] [3] Protocols are not standardised as there are significant differences in outcomes between different countries.[214] General practitioners and patients have reported negligible to minimal improvements in patients receiving CBT, with the improvements equivalent to counselling and supportive care.[194] Studies of CBT in people with CFS report significant improvements in mental health scores, fatigue scores, and 6 minute walking,[215] but effect sizes were low (Cohen’s d estimated at 0.30 to 0.35),[216] and were not corrected for multiple comparisons.[217] Studies using the Oxford criteria of mild fatigue may not be applicable toCFS diagnosed by CDC or Canadian Consensus Criteria that require moderate to severe fatigue with PEM.[1] [2] [3]"
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Simone said:
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.

On exercise:



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:
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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.
 
Trish said:
And is there any information on whether doctors actually read the BMJ best practice guides in preference to the NICE guidelines?
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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?
 
Trial By Error: The Surprising New BMJ Best Practice Guide
13 November 2017
By Steven Lubet and David Tuller, DrPH

Something has changed.

That’s the only explanation for the recent publication of a “Best Practice” guide for “chronic fatigue syndrome” (behind a paywall, unfortunately) from the BMJ Publishing Group. This thing is good. It’s very good, in fact. One bottom line at this stage for any treatment guide is the following: Would it lead a clinician to prescribe cognitive behavior therapy or graded exercise therapy for patients with ME, as opposed to those suffering from a vague fatiguing illness? The answer here is an unequivocal no.
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http://www.virology.ws/2017/11/13/trial-by-error-the-surprising-new-bmj-best-practice-guide/

Edit: thread https://www.s4me.info/index.php?thr...e-surprising-new-bmj-best-practice-guide.993/
 
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Just checked out the Recommendations section, which is of course where most people will swing to first ..


"Monitoring
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.[231] One strategy may
be to provide counsel to patients every 3 months and to reassess them for other health issues and treatable diseases.

Patient instructions
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"
 
My reading isn’t great right now but I’m intrigued by the ventrolateral periaqueductal grey matter bit in Aetiology

An alternative to fight or flight is the freeze response, which involves focused awareness, muscle rigidity, and immobility. This is caused by activation of the ventrolateral periaqueductal grey matter (VLPAG) that acts as a brake on LPAG functions and so blocks the muscle activity of the fight or flight response. Muscle tone and respiratory rate are high.
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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?
 
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