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Dr David Tuller 13th Nov: Trial by Error: the surprising new BMJ Best-Practice Guide

Countrygirl

Countrygirl

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http://www.virology.ws/2017/11/13/trial-by-error-the-surprising-new-bmj-best-practice-guide/

Here is an extract:

Trial By Error: The Surprising New BMJ Best Practice Guide
13 NOVEMBER 2017
By Steven Lubet, JD, 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.

The guide doesn’t refute the PACE trial by name. It doesn’t have to. With its strong emphasis on the many physiological dysfunctions that characterize the illness, the guide represents a refutation not only of PACE itself but of the deconditioning/fear-of-exercise hypothesis—the foundational myth of the CBT/GET cult. It is hard to imagine that any organization associated with the British medical and academic establishment would have published this document just two years ago, before patients’ concerns about the PACE trial mushroomed into an international scientific scandal. Someone over at BMJ obviously understands that the field has moved beyond the simplistic and unproven claims of the biopsychosocial field.

The author, Dr. James Baraniuk, is an immunologist at Georgetown University and an expert on ME/CFS as well as Gulf War Illness
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Countrygirl

Countrygirl

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deleder2k

deleder2k

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Cognitive behavioural therapy (CBT) The biopsychosocial model of CFS 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 to CFS diagnosed by CDC or Canadian Consensus Criteria that require moderate to severe fatigue with PEM.[1] [2] [3]

Around 40% of patients with CFS have clinical depression and/or anxiety, which is similar to many other chronic medical illnesses.[162] There is little investigation of reactive depression, anxiety, or stress reactions secondary to the illness compared with interest in a premorbid history of depression or generalised anxiety disorder. A suicide evaluation is standard practice for all patients who appear to be clinically depressed or highly stressed. In one UK-based study, suicide-specific mortality was found to be significantly increased in patients with CFS compared with the general population (standardised mortality ratio 6.85, 95% confidence interval: 2.22 to 15.98; P = 0.002) indicating the need for physician awareness and compassion in the care of these patients.[131] Age at death from suicide was younger in people with CFS (41.3 years) compared with that in the overall US population (47.4 years).[101]

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 of CFS, improve coping strategies, and assist with rehabilitation. CBT and low-impact exercise therapy are cost-effective with a good probability of yielding 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 postintervention 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 management studies found small benefits for exertional malaise, chills, fever, and restful sleep, but only in the face-to-face rather than the telephone-administered therapy.[226]

CBT should be planned by the practitioner as 'brain retraining sessions' to improve attention, working memory, and organisation of daily routines (e.g., going to social events, shopping, and other outings) to take advantage of periods during the day where fatigue is felt the least. Family sessions can help educate and inform spouses, children, parents, and other significant persons about the disabling nature of CFS.[225] Although referral to a mental health professional with expertise in CBT has been recommended regardless of CFS severity, the absence of a qualified CBT psychologist, social worker, nurse, or other practitioner with CFS training limits its availability.
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A

anniekim

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Not read through comments on this post yet. I am just skim reading the guide now, managed to get a copy, and will try to read properly. I have to say on reading so far I still have many concerns. Yes, the guide does point out there is research coming out that shows metabolic dysfunction and graded exercise can make many worse, which on the surface seems progress. Yet the treatment recommendations are still focused on rehabilitation and CBT. Also the document rightly says Oxford and NICE criteria should not be used but still wrongly recommends Fukuda as a valid criteria. It also criticises ICC criteria.

Also says the CFS definitions require PEM. Yet fails (purposely?) to point out that PEM is not essential under the Fukuda CFS defintion for a CFS diagnosis. Are they still wanting to include studies using Fukuda which we know uses mixed patient cohorts making the results dubious. A lot of the assertions use studies using Oxford and Fukuda criteria as evidence for them, even cites PACE as a reference for a claim.

To me, the BPS lot have their fingerprints all over the document and I am not surprised until this month Peter White was listed as one of the peer reviewers. It's a mish mash of a guide in my opinion.
 
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