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 …

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 …

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 …

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 …

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 …

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 …

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 …

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 …

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