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 • 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. 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 • 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 • 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 • 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 • 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.
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
Sep 5 • 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 • 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 • 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 • 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 • 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.
Nov 20, 2021 • 6 tweets • 2 min read
1) Apparently, there is a belief that patients with medically unexplained symptoms (MUS) have a deviant way of presenting symptoms.
The following study, however, compared language use of patients with MUS to medically explained symptoms (MES) and found no systematic differences.
2) The authors report:
“Our findings suggest that, despite prejudices about MUS symptom presentations being subjective, vague or exaggerated, linguistic markers of patients with MUS are not different from patients with MES”
Jun 27, 2019 • 7 tweets • 2 min read
1) There’s a new interesting study out by a collaboration of ME/CFS patients and scientists.
They’ve sent Freedom of Information requests to 38 NHS specialist centers for ME/CFS and asked them about their information on harms by rehabilitative therapies such as GET or CBT.
2) The results are striking. Among the ME/CFS clinics surveyed, there was an almost universal absence of criteria for detecting harm, and no clinic reported any harm to have occurred in their patients, despite acknowledging that many dropped out of treatment.
