The supplementary material gives an overview of national guidelines and practices on ME/CFS in European countries (each EUROMENE member had to fill in information about their country), but it is mostly a stark lack of guidelines and knowledge that stands out.
@FMMM1 this might interest you.
As you indicate there are some studies that reported hypoperfusion in ME/CFS, but if this was what's causing the enormous disability associated with this illness and hypoperfusion is something that we can actually measure, I would assume that the results stand out more starkly than they did in...
Mod note: some posts copied, in order to remove off-topic strands of conversation from other threads. Grey font indicates strands being addressed on other threads.
As you indicate there are some studies that reported hypoperfusion in ME/CFS, but if this was what's causing the enormous...
So there was "no signifcant diferences in GDF15 between ME/CFS cases with mild/moderate disease, MS cases, and healthy volunteers". And they note that
"in rodent models, increases in circulating GDF15 are reported to be associated with reduced physical activity."
Doesn't that suggest that...
This is interesting, it's the misinterpretation of the Chalder Fatigue Scale that many suspect occurs in treatment trials:
This was a study with only 9 participants, so the authors could look at each one of them to see what happened and how to interpret their symptom scores. It could be that...
It has sometimes been said that fatigue is a continuum and that ME/CFS just forms an artifical part at the severe end. Patients are very ill because case definitions require them to be.
So if I remember correctly, this paper was relevant in showing that requiring a substantial reduction in...
Me 2. Seems like a narrative review of some small and poorly replicated studies.
I hope that these French researchers are able to continue their research in ME/CFS and do some larger, more robust studies.
Seems interesting.
Less than half of patients with gulf war illness agreed with the statement "feeling unwell after physical exercise or exertion". And there were no group by time difference in symptoms after the exercise test for the whole sample. That would seem to suggest a difference with...
Thanks @Hip I also think it's worth highlighting some of the differences between these theories.
I don't know where these figures are from but the consensus documents says that 135 or less is only potentially pathological. I suspect it's possible for people like gymnastics or ballet dancers to...
I think there are also some good points in here.
Perhaps if you write a critique of the things that are bad and send it in name of a patient organisation, they might consider changing it a little. Was thinking mainly of the things you said @Hutan: 'complex patients', emphasis on pelvic pain...
I didn't fully realize this and think it would be good for the MEpedia project as Trish explains.
I wonder how this normally goes: does Wikipedia have paid professionals that check the content that is being added?
This probably deserves its own thread.
ME Action sent a survey about case definitions to 65 ME/CFS clinicians or researchers. Unfortunately, only 22 completed the survey (6 clinicians and 16 researchers). In my view, it's difficult to make much of their responses, with one exception...
It is...
I think there are now three groups looking at these extracellular vesicles in ME/CFS.
A Spanish group published a study about this last year (Castro-Marrero et al.) Their study was preliminary as the sample size was really small; 10 ME/CFS patients and 5 healthy controls. They reported that...
I also thought the study is a bit confusing.
They start by comparing the number of circulating extracellular vesicles (EV) in several samples of ME/CFS patients compared to healthy controls. That's where they report a clear differentiation with a Area under ROC curve of 0.8.
But when they...
There was a segment on ME/CFS on an Austrian TV news program.
A direct link to the fragment can be found here: https://tvthek.orf.at/profile/Magazin-1/13890330/Magazin-1/14032702/Chronisches-Erschoepfungssyndrom/14595793
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