ME/CFS Skeptic
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2020: looking back at a year of ME/CFS research
2020 was an exceptional year in many ways. The coronavirus pandemic swept across the world causing more than a million deaths and forcing most developed nations into lockdown. Although COVID-19 brought havoc and despair, it also renewed scientific interest in postviral syndromes and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Hopefully, this will lead to a breakthrough …
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A closer look at the Qure Study
The Qure study was one of the largest randomized treatment trials for patients suffering from a postinfectious fatigue syndrome. Although the study focused on Q-fever, a disease caused by the bacterium ‘Coxiella burnetii’, it might have implications for patients suffering from long-lasting fatigue after COVID-19 or other infections. Dutch physician Mark Vink has written a …
A summary of our paper on exercise therapy and bias caused by lack of blinding
On 25 November a new paper was published by David Tuller (University of California, Berkeley), Caroline Struthers (Oxford University) and myself (Michiel Tack, a long-time ME/CFS patient). The paper is about exercise therapy for chronic fatigue syndrome and bias due to lack of blinding. This blog post provides a short summary. The paper was published …
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Why is ME/CFS getting so little research funding?
In a previous blog, Evelien and I argued that ME/CFS is getting less research funding than illnesses with a comparable prevalence and disability. In this article, we will try to get a better understanding of why ME/CFS gets so little research funding. Many causes have been proposed such as stigma, lack of a biomarker, mischaracterization …
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Criticism of the 2020 NICE guideline draft: some things that could be improved
On 10 November 2020, the National Institute for Health and Care Excellence (NICE) released the outline for its new guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In a previous blog post, I wrote a summary of this document, highlighting some useful recommendations and notable changes compared to the previous NICE guideline. NICE’s draft was welcomed …
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The new NICE guideline – a summary and discussion of the draft
On 10 November 2020, the National Institute for Health and Care Excellence (NICE) published a long-awaited draft for its new guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The document reveals how NICE is about to make a drastic change in recommending how the condition should be managed by healthcare professionals. While its previous guideline advised …
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Progress is happening: an overview of positive developments in the ME/CFS community
Evelien and I recently made an overview of ongoing or planned clinical trials for ME/CFS. We concluded that there are few decent treatment trials for ME/CFS in the pipeline and that things seem to be moving much faster for other illnesses such as multiple sclerosis and schizophrenia. Because some found our articles a bit depressing, we …
A disease funding comparison: is ME/CFS getting too little?
Evelien and I recently made an overview of clinical trials for ME/CFS that are in the pipeline. Although there are some reasons to be hopeful that things will improve in the future, currently there are few decent clinical trials planned or registered for ME/CFS. You can read our overview of ME/CFS trials here. As our …
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Summary of the NIH’s exploration of post-exertional malaise
The research team that is studying ME/CFS at the National Institutes of Health (NIH) has just published an interesting paper on post-exertional malaise (PEM). They formed focus groups and listened to patients’ experiences to better understand PEM. The authors write: “Historically, measurement of PEM has had considerable controversy, and patient groups have felt left out …
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A preliminary overview of NIH grant funding for ME/CFS research in the funding year 2020.
I’ve tried to make a preliminary overview of (extramural) NIH grants for ME/CFS research for the funding year 2020. The image below provides the shortened version. The longer version is available in pdf format in the link below. It provides an overview of the grants, a link to the NIH page info, and a short …
What’s in the pipeline? Ongoing, registered, or planned clinical trials for ME/CFS
Evelien Van Den Brink and I were interested in what clinical trials are currently planned or ongoing for ME/CFS. It can take many years to conduct a clinical trial and report the results, so we wanted to know what we can expect to come out in the next years. A search of databases that register …
My comments to the Cochrane review on exercise therapy for CFS
Problems with the amended version (Version published: 02 October 2019) part I. I appreciate the efforts made by Cochrane and the authors to correct some of the errors in the previous version of this review. There are however some major problems that remain and significantly impact the results and conclusion. I hope to clarify these …
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Why the Cochrane review on exercise therapy for chronic fatigue syndrome is still misleading
On Wednesday, October 2, Cochrane published a long-awaited amendment to its review of exercise therapy for chronic fatigue syndrome (CFS) [1] following a formal complaint to Cochrane’s Editor in Chief. Unfortunately, the published amendment does not address the main flaws of the review and continues to overestimate the evidence for exercise therapy in CFS. In …
Turning a blind eye to blinding
Blinding, sometimes called masking, is the process of keeping key persons involved in the conduct of a clinical trial unaware of group assignment. In a typical randomized controlled trial, neither patients nor therapists know who is getting the active treatment and who is getting a placebo pill. The idea behind this is simple: knowledge of …
The Guardian’s Science Weekly podcast and the Cochrane review
Yesterday, the Guardian’s Science Weekly podcast published an update of its episode titled: “What role should the public play in science?” [1] For those who might have missed it, the episode revolved around a Cochrane review on exercise therapy for chronic fatigue syndrome (CFS). [2] A Reuter’s news article had announced that a withdrawal of …
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The Cochrane correspondence
The Cochrane review on exercise therapy for patients suffering from chronic fatigue syndrome has been the subject of ongoing controversy. In October 2018, a Reuters news article suggested that Cochrane would temporarily withdraw the review due to pressure and complaints from online activists. Publicly released correspondence between Cochrane’s former Editor in Chief and senior employees …
