ME/CFS Skeptic Profile picture
Exploring the history of psychosomatic medicine and research on myalgic encefalomyelitis/chronic fatigue syndrome (ME/CFS)
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Jan 25 5 tweets 2 min read
1) Interesting article about the German ‘Miracle’ study.

The project received ca. 2.5 million in funding to study neutrophil granulocytes and HDL in ME/CFS patients. Image 2) Neutrophil granulocytes cannot be easily cultured and must be examined immediately after removal and isolation.

The researchers, led by Dr. Alexander Dejaco at the University of Regensburg, suspect that these cells may play a key role in ME/CFS.
nachrichten.idw-online.de/2025/01/22/ukr…
Jan 7 8 tweets 2 min read
1) Interesting study with somewhat surprising results:

Mendelian randomization shows no sign of a causal relationship between major depressive disorder (MDD) and (self-reported) ME/CFS. Image 2) Previous studies noted that MDD and ME/CFS have symptom overlap and frequently co-occur. Some suggested that MDD might be a risk factor of ME/CFS.

Those studies, however, are based on correlation and cannot exclude confounders and determine causation.
Dec 29, 2024 9 tweets 2 min read
1) Here it is, our overview of the most interesting ME/CFS studies of 2024.

If you think we’re missing an important one, feel free to post it as a comment below 👇
mecfsskeptic.com/2024-looking-b… 2) A recent preprint used data from the UK Biobank and showed that there are many differences in the blood between ME/CFS patients and controls.

Their analysis suggests that these differences are not due to inactivity or deconditioning.
Dec 26, 2024 13 tweets 3 min read
1) In the process of reviewing the most interesting ME/CFS-studies of 2024.

I think this one ranks top of the list: Beentjes et al. Image 2) The authors used data from hundreds of 40-69 year olds ME/CFS patients from the UK biobank and thousands of controls. They controlled for sex, age and activity level and tested blood markers, proteomics and metabolomics,

medrxiv.org/content/10.110…
Dec 23, 2024 11 tweets 3 min read
1) Martha Exck and colleagues did a large online survey of 2,125 patients with ME/CFS and 1,800 with Long COVID on what interventions they find useful or harmful.

The study was partly supported by the Open Medicine Foundation (OMF) Image 2) Let’s start with the caveat that social media surveys like this have a large response bias and cannot tell us which treatments work or not, you need randomized controlled trials for that.

But it still shows some interesting things.
Dec 16, 2024 9 tweets 3 min read
1) Some background on the ongoing Cochrane saga...

Before 2019, several patients and researchers pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn. 2) It was Cochrane itself that came up with the initiative of writing an entirely new review with a new protocol, author group, an advisory panel, etc.
Dec 14, 2024 6 tweets 2 min read
1) This Belgian trial tested a combination of symptom-contingent pacing and dietary advice for Long Covid patients. The control group received standard physiotherapy.

Unfortunately, the intervention was not effective. Image 2) The primary outcome was 1-minute sit-to-stand repetitions which showed a non-significant difference of -0.97 [-3.70, 1.75]. The authors defined a minimally clinically important difference as 3 repetitions.
Dec 7, 2024 6 tweets 2 min read
1) The California Emerging Infections Program has a surveillance program for ME/CFS called STOP ME/CFS (Surveillance to Optimize Protocols for Early Identification and Subgrouping of ME/CFS). Image 2) STOP ME/CFS involves annual surveys to identify patients with an ME/CFS-like illness among Kaiser Permanente Northern California (KPNC) 's 4.5 million members.

The program published this preprint in collaboration with people from the CDC.
medrxiv.org/content/10.110…
Nov 29, 2024 20 tweets 4 min read
1) There are quite a lot of problems with this review of interventions for Long Covid.

First of all, the authors did not actually do any meta-analysis yet. The abstract does not make this very clear, but each of the reported outcomes reported is based on 1 study (n_trials = 1). 2) The repeated statements on physical and mental health rehabilitation (that it improves depression, quality of life, and recovery) are all based on 1 trial: the REGAIN study.
pubmed.ncbi.nlm.nih.gov/38325873/
Nov 23, 2024 12 tweets 2 min read
1) Which ME/CFS studies did the National Institutes of Health (NIH) fund in 2024?

We published a new blog post that briefly describes all projects.
mecfsskeptic.com/nih-funding-fo… 2) One of the most interesting studies takes place at Columbia University. It uses a smartphone app where patients can enter their symptoms and whether they are having a good or bad day.
Nov 21, 2024 8 tweets 3 min read
1) The German agency for research BMBF has published the results of their call for proposals on ME/CFS. Approximately € 15 million is going to 7 projects and research networks over the period 2024-2027. Image 2) There is one individual project called FAME which receives € 1.75. It is led by Dr. Bettina Hohberger and will study the role of autoantibodies against G protein-coupled receptors in ME/CFS patients.
gesundheitsforschung-bmbf.de/de/fame-funkti…
Nov 2, 2024 25 tweets 5 min read
1) The results of the FITNET-NHS trial have just been published, the biggest randomized trial for children and adolescents with ME/CFS.

Here’s a brief overview of its main results.
mecfsskeptic.com/fitnet-nhs-a-s… 2) 314 participants were randomized to receive either FITNET (online cognitive behavioral therapy) or Activity Management. Both interventions were delivered remotely and lasted 6 months.
Oct 16, 2024 14 tweets 4 min read
1) New blog post on hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobile spectrum disorder (HSD).
mecfsskeptic.com/heds-and-hyper… 2) Epidemiological studies show no clear relationship between hypermobility and symptoms such as chronic widespread pain, which questions the validity of these diagnoses.
Oct 2, 2024 4 tweets 1 min read
1) New blog post where we look at previous studies on 2-day exercise testing in ME/CFS.
mecfsskeptic.com/discrepancies-… 2) ME/CFS patients often have a significant decrease in their workload at the ventilatory threshold while no such decrease (or even an increase) is seen in controls.

This is one of the most consistent findings in ME/CFS research.
Oct 1, 2024 13 tweets 4 min read
1) This new review argues that 50% of Long Covid patients have ME/CFS but I think its conclusion is rather misleading.

Most of these studies are online surveys or data from ME/CFS clinics so have a huge selection bias. 2) Because Long Covid has been defined very broadly, the proportion that meets ME/CFS criteria is likely much lower than 50%.
Sep 18, 2024 11 tweets 3 min read
1) New blog post about the largest 2-day exercise study to date.

Big thanks to the authors, Dr. Betsy Keller and colleagues, for uploading the data to so that others can analyse and explore it.

mapmecfs.org
mecfsskeptic.com/the-biggest-2-… 2) Here are the results for peak oxygen consumption (VO2) which showed the clearest effect.

On average if you randomly chose a participant from each group and compared their percentage change from test 1 to test 2, the ME/CFS value will be lower 64% of the time Image
Sep 5, 2024 13 tweets 3 min read
1) New blog post on 'catastrophizing' and why this concept risks blaming patients by mislabeling their symptoms as exaggerated negative thoughts.
mecfsskeptic.com/catastrophizin… 2) Catastrophizing has been a popular topic because it is one of the most consistent psychological predictors of adverse pain outcomes. It is also central to the cognitive-behavioral model of ME/CFS.

There are, however, big problems with how the term has been implemented.
Aug 23, 2024 9 tweets 3 min read
1) Boom and bust, another ME/CFS myth?

In this new blog post we look at the evidence behind the boom and bust theory and how it originated.
mecfsskeptic.com/boom-and-bust-… 2) ME/CFS patients are often said to have an erratic activity pattern, where sudden bursts of activity are followed by prolonged bed rest. This ‘boom and bust’ pattern is thought to be the reason why ME/CFS patients experience frequent crashes and setbacks.
Aug 15, 2024 11 tweets 2 min read
1) Just published a new blog post on what severe deconditioning looks like and how it is different from ME/CFS.
mecfsskeptic.com/what-does-deco… 2) Interestingly the best evidence on deconditioning comes from NASA bed rest studies. Head-down bed rest was used as a proxy for the low gravity that astronauts endured in space.
Jun 28, 2024 17 tweets 6 min read
1) A new blog post about the problems with the criteria for Postural Orthostatic Tachycardia Syndrome (POTS).

It’s quite a long read, so I’ll try to summarize the main ideas in this thread.
mecfsskeptic.com/the-problems-w… 2) ARGUMENT 1: heart rate increases upon standing > 30 bpm are far from abnormal.

In this study of the general population, for example, more than half of healthy young adults had an increase higher than the POTS threshold.
pubmed.ncbi.nlm.nih.gov/31476713/
May 19, 2024 9 tweets 2 min read
1) Interesting new study from Canada from the research team of Dr. Luis Nacul.

The authors recruited participants from ‘CanPath’: a population-based cohort that includes data from over thousands of Canadians. 2) In 2016 19,145 of these participants responded to the question about a Chronic Fatigue Syndrome diagnosis. Of those participants 1.1% responded ‘yes’ to ever having been diagnosed with CFS.