Tag: NICE

Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review

Abstract:

In this article, we analyzed the systematic review by Kuut et al. into the efficacy of cognitive behavioral therapy (CBT) for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disease that predominantly affects women, and the eight trials
in it. We found many issues with the studies in the review, but also with the review itself.

For example, the systematic review by Kuut et al. included a researcher who was involved in seven of the eight studies in their review, and another one who was involved in five of them. Moreover, at least one of them was involved in every study in the review. On top of that, the three professors who were involved in the systematic review, have all built their career on the CB model and the reversibility of ME/CFS through CBT and GET and two of the systematic reviewers have a potential financial conflict of interest. Yet they failed to inform the readers about these conflicts of interest. Conducting a review in this manner and not informing the readers, undermines the credibility of a systematic review and its conclusion.

Regarding outcome differences between treatment and control group, it’s highly likely that the combination of non-blinded
trials, subjective outcomes and poorly chosen control groups, alone or together with response shift bias and/or patients filling in questionnaires in a manner to please the investigators, allegiance bias, small study effect bias and other forms of bias,
produced the appearance of positive effects, despite the lack of any substantial benefit to the patients, leading to the erroneous inference of efficacy in its absence. That CBT is not an effective treatment is highlighted by the fact that patients remained
severely disabled after treatment with it.

The absence of objective improvement as shown by the actometer, employment status and objective cognitive measures, confirms the inefficacy of CBT for ME/CFS. The systematic review did not report on safety but research by the Oxford Brookes University shows that CBT, which contains an element of graded exercise therapy, is harmful for many patients. Finally, our reanalysis highlights the fact that researchers should not mark their own homework.

Source: Vink M, Vink-Niese A. Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review. SciBase Neurol. 2024; 2(3): 1022. https://www.scibasejournals.org/neurology/1022.pdf (Full text)

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

By George Monbiot

It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

Read the full article in The Guardian HERE.

NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence

Abstract:

In 2021, the National Institute for Health and Care Excellence produced an evidence-based guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disabling long-term condition of unknown cause. The guideline provides clear support for people living with ME/CFS, their families and carers, and for clinicians. A recent opinion piece published in the journal suggested that there were anomalies in the processing and interpretation of the evidence when developing the guideline and proposed eight areas where these anomalies were thought to have occurred. We outline how these opinions are based on a misreading or misunderstanding of the guideline process or the guideline, which provides a balanced and reasoned approach to the diagnosis and management of this challenging condition.

Source: Barry PW, Kelley K, Tan T, et al. NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence. Journal of Neurology, Neurosurgery & Psychiatry Published Online First: 28 February 2024. doi: 10.1136/jnnp-2023-332731 https://jnnp.bmj.com/content/early/2024/02/28/jnnp-2023-332731 (Full text)

Long covid: research must guide future management

Back in February 2021, the UK government announced that £18.5m is being invested into clinical research into long covid by UK Research and Innovation (UKRI).1 In light of public and medical concern about the long term effects of covid-19 infection, this is welcome.

In 1988, colleagues and I published an article in The BMJ called “Post viral fatigue: time for a new approach.”2 This was an attempt by young researchers to make the case that viewing the syndrome through a more unified mental-physical health lens and epidemiological orientation might counteract the increasingly polarised debate between patients with post-viral fatigue or myalgic encephalomyelitis (ME) and their doctors. We called for a clearer operational case definition, a biopsychosocial approach, and an end to emotive language all round. A generation later and our calls remain current.

Bodies including the National Institute for Health and Clinical Excellence (NICE), the Scottish Intercollegiate guidelines network (SIGN), the Royal College of General Practitioners (RCGP) and the Centres for Disease Control and Prevention (CDC) in the US have all attempted to operationally define persistent symptoms and disability after acute covid-19 illness.3 I think the term used by NICE—post-covid-19 syndrome—is a reasonable starting point. NICE’s definition includes the phrase “not attributable to alternative diagnoses.” This seems obvious, and yet is critical, as this should not be a catch-all category where any disorder with unexplained symptoms can be attached. For example, if a patient recovers from the acute respiratory illness, but remains short of breath and is found to have pulmonary fibrosis or pericarditis by accepted criteria, or, experiences brain fog and mental slowing, later linked to microvascular infarcts on MRI—can they be removed from the post-covid-19 cohort? I would say yes. Their condition may be unusual, and it may be serious, but it is not mysterious. These conditions add to the tally of morbidity caused by covid-19, but not to post-covid-19 syndrome. This, however, depends on patients getting access to the right assessments and investigations and there have been many calls from long covid patients to ensure that they have proper medical assessment of their symptoms.

We must not fall into the trap set by all “unexplained” symptoms: endless investigation by clinicians who then impart the “good news” that the test was normal. Because there is no accompanying positive explanation for the symptoms, this is perceived as implying, “it’s not real” or somehow worse, that “it’s all in your mind.” A devastating and embittering experience for many patients whose symptoms persist, and ultimately unhelpful in reaching a solution.

Read the rest of this article here: https://www.bmj.com/content/375/bmj.n3109

Source: Anthony S David. Long covid: research must guide future management. BMJ 2021;375:n3109. https://www.bmj.com/content/375/bmj.n3109