BMJ best practise

It looks very different from what I would expect but I can only see the summary

  • Chronic fatigue syndrome (CFS) is characterised by a sudden or gradual onset of persistent disabling fatigue, post-exertional malaise (PEM, exertional exhaustion), unrefreshing sleep, cognitive and autonomic dysfunction, myalgia, arthralgia, headache, and sore throat and lymph nodes, with symptoms lasting at least 6 months.
  • Exertional exhaustion is the critical aspect that distinguishes myalgic encephalomyelitis/CFS from other nociceptive, interoceptive, and fatiguing illnesses.
  • The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production.
  • The primary goals of management are to provide a supportive healthcare environment with a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.
  • The chronic but fluctuating disabilities require substantial lifestyle changes to plan each day's activities carefully, conserve energy resources for the most important tasks, schedule rest periods to avoid individuals overtaxing themselves, and to improve the quality of sleep.
  • Medications are not curative. Pharmacotherapy is indicated to treat pain, migraine, sleep disturbance, and comorbid conditions such as irritable bowel syndrome, anxiety, or depression.
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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.
 
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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That seems to be pandering to the BPS people. I do think an occupational therapist can be useful in terms of providing adaptations and equipment to help make life easier.
 
Adrian said:
That seems to be pandering to the BPS people. I do think an occupational therapist can be useful in terms of providing adaptations and equipment to help make life easier.
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The OT I saw from the local ME service didn't offer any of that. When I asked about equipment etc. she said something like 'you have to see the uniformed OT's for that' - she only did the advice stuff - pacing relaxation etc. Different service. Never been offered it.
 
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James was preparing this around eighteen months ago and he had a session on it at IiME colloquium where he got input from the entire international research community. James takes a very measured responsible view of things and insisted that if people wanted change they needed to provide good arguments. Presumably it has taken some time for this to come through to being published.

It seems that James got invited to do this rather by chance because he had sent in a comment on some previous document. But he probably got the job because if people asked around they are likely to have found solid support. He is perhaps the most intelligent and broad-angled thinker amongst the established ME research community. He does not overstate his case. Peter White would have found it hard to cry foul.

This looks like more, solid, progress. (pedantic commas inserted)
 
So is this a sign that Peter White is backing down on PACE and the whole BPS thing and acknowledging that it included too many people with mental health issues and mild fatigue, not ME/CFS?

That always looked like a possible escape route. Will he now say: 'we weren't studying moderate to severe ME/CFS, we were studying mild chronic fatigue.' I wish he would come out and say it publicly.

I see he's still advising government and insurance companies. I wonder whether he's acknowledged this change of direction to them.

Has anyone managed to get access to the whole document. I don't want to pay for a subscription to the BMJ in order to read it!

And can it be submitted as evidence to the NICE review and to Cochrane?
 
RIP Oxford criteria

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% of the population have chronic fatigue[10] and would meet Oxford criteria for study inclusion
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More on GET
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. [...]
However, this highly generalised view and exercise prescription may not apply to the theories of metabolomics dysfunction and post-exertional malaise in CFS. [...]
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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And CBT

CBT is a psychotherapeutic intervention aimed at modifying thinking, feeling, and behaviour, and focuses on current problems. Therapists lead discussions and follow a structured style of graded interventions to address problems one at a time.
For patients with CFS, CBT is usually accompanied by a graded activity programme. CBT may help in dealing with a new diagnosis ofCFS, improve coping strategies, and assist with rehabilitation. CBT and low-impact exercise therapy are cost-effective with a good probability ofyielding symptom and functional improvements relative to speciality medical care alone.[218] Cost may also be decreased by self-management programmes.[219]

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.[157] [220] [221]
Furthermore, in routine medical practice CBT has not yielded clinically significant long-term benefits in CFS.[222] [223] [224] [225] A retrospective analysis of several stress managementstudies found small benefits forexertional malaise, chills, fever, and restful sleep, but only in the face-to-face rather than the telephone-administered therapy.[226]
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(Bold and paragraph breaks are mine).
 
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