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The results of the this study indicate that this is indeed a problem. In my view, the authors downplay this soo much, that it becomes misleading. They only assessed ceiling effects by looking at what % of patients scored the maximum (greatest fatigue score) on all of the 7 items. Because this...

The ME/CVS Vereniging has responded to my Facebook post I'll hope it's ok to reproduce it here, as it might be relevant: ME/CVS Vereniging: "We are working on a translation into english. Anybody who is a native speaker who is willing to check our grammar? When the english summary is published...

Yes. It seems that the subjects were patients referred to the Brigham and Women’s Hospital because they had unexplained exertional intolerance. In some, a mitochondrial disease was suspected. As Snow Leopard pointed out most of these patients were excluded from the analyses because pulmonary...

Corsius et al. (2019). Zorg voor betere behandeling bij ME. Enquête onder ME-patiënten naar hun ervaringen met behandelingen bij ME. A new patient survey was published two days ago by the Dutch ME/CFS Association (ME/CVS Vereniging). It was conducted online in 2017 and had valid results for...

Normally the test is without bending your knees. (this was intended as a joke)

This is the case in Belgium. The ME/CFS 'experts' recognize some of the absurdities of the CBT-model so they have adapted it to make it somewhat more reasonable. But they still claim it's evidence-based by referring to trials that used the fear-avoidance model of CBT. You can't have your cake...

Thanks. It seems I was confused because the paper is just a short editorial. By the words 'Liverpool review' I thought there might be an extensive review of the best use of methods and treatment recommendations on this. Perhaps such a review by experts would be indicated, given how prevalent...

Can somebody point me to this Liverpool based review, I seem to have missed it sorry! Thanks in advance,

Here’s my short summary/impression of the 2019 OMF Symposium. Please be mindful that this is based on the livestream, so there might be some errors or some parts missing. Moreau finds something in the plasma I think the most interesting finding came from the Canadian researcher Alain Moreau...

Using the break to tweet some notes I've made: This was interesting:

Yes this is from the group that trialled that feasibility trial of ACT in ME/CFS. You can find discussions of it here and here. I've briefly skimmed it. Here are some notable sections: The author thinks that ME/CFS and stress-related exhaustion are quite similar: He seems to think the most...

I’ve just managed to read the report. I tend to agree with others that it makes sensible recommendations but that it has few concrete commitments, in particular when it comes to funding. Commitment but no funding What I hoped for is that the NIH would say that they want to see the ME/CFS field...

I sometimes wonder whether PEM would make everything worse. Say, a study that first lets patients with ME and controls overexert themselves cognitively to induce PEM and then measure the consequences on purely physical tasks, the day after. There might be an effect that the cognitive task...

Does anyone have access to the full paper?

As I see it this call for evidence is not NICE asking to send them any study on ME/CFS we find interesting or that we think they should read in formulating the NICE guideline. As I interpret it the scope is quite restricted to: management while the ME/CFS diagnosis is being made, monitoring of...

I also don't quite understand the issue of not reporting certain outcomes. For example, if an unblinded trial has subjective and objective outcomes and the former but not the latter show clinically significant improvements, then researchers could only publish the first and never report the...

From the outset, it seems that RoB 2 is quite friendly to flawed trials, not solely on the issue of blinding. For example, if the trial analysis was not in accordance with a pre-specified plan (question 5.1) that only raises 'some concerns'. So if the authors publish a protocol and then don't...

The revised tool seems to make it quite easy for unblinded trials to be rated as low risk of bias. The paper reads: More information is given in the supplementary material. Most of the risk of bias due to a lack of blinding is assessed at Domain 2: Risk of bias due to deviations from the...

The authors write that "conditions of chronic pain/fatigue may be treated together, using holistic interventions that include physical and psychological therapies." The reference that they use for this is the DSM-5 (weird!) and Tavel, M. E. (2015). Somatic symptom disorders without known...

I see it differently. Those who want to do away with psychiatric diagnoses all together remind me of those who prefer MUS over diagnoses such as ME/CFS, fibromyalgia etc. I think there are similarities in the debate. To outsiders it may seem as if criticis have a point because there are a lot...