I expected the worst possible outcome because the issue is far bigger than ME/CFS, it's all psychosocial trials. The whole thing would need to be torn down and there is no way that the establishment is going to do willingly do that to itself. It would expose the entire rotten edifice of...
One paper I saw on functional weakness found abnormal activation in DLPFC which is also involved in affective disorders and this was interpreted as proof that emotional state was interfering with normal activation of motor pathways.
There's clearly a concerted global effort to rebrand all these disorders of unknown aetiology under the MUPS/functional umbrella and cart all these patients off to psych. It's a good tactical move now that PACE has been debunked. Instead of continuing to fight on the ME/CFS battlefield where...
I don't want to criticise a graduate student too harshly. But this isn't an English literature or business administration degree, it's healthcare. So if your work is not up to scratch, they need to be told this. In a normal environment, this person's work would have been flagged as not being up...
My impression is that EDS (the hypermobility one that conveniently has no identified genes) is the diagnosis du jour by some physicians who want to avoid the stigma of an ME/CFS diagnosis which, let's face it, is the most stigmatising diagnosis there is, possibly more than AIDS and...
What plan of action? Any action an ME patient takes generally makes the condition worse. There are no evidence-based treatments and no known causal mechanism.
Another thing I found weird is that one of the interventions was raising arms above the head. I mean, don't many of us do this when washing hair, picking stuff off the shelf in the kitchen etc. many times a month and this does not help. I know that for me this triggers my POTS badly.
Another thing I thought was weird is that baseline measurements of heart rate were taken in 2013 and then there's a big gap until 2016 when improvement is noted. My POTS has also improved significantly in that time period with no gravity exercise intervention at all.
I've had near-identical experiences in partial remission periods: hiking for miles without rapid muscle fatiguability and PEM, followed by a sudden fall off the cliff (metaphorically speaking) the next day where literally even walking around the block on flat ground makes me weak, shaky, out of...
Unsurprising. You find similarly weak relationship between objective and subjective cognitive dysfunction in other brain conditions like Parkinson's disease and major depression. To my mind this is another reason why subjective outcome measures in trials are so dangerously misleading.
I saw a fundraiser just yesterday for a young woman in NZ where the same claim was made, i.e. that CCI surgery is not available there. This surprised me given that NZ is an advanced first-world country and made me wonder whether mainstream surgeons there simply saw no indications for such an...
IMO, a blinded study where neurologists/neurosurgeons who are not affiliated with those clinics performing surgeries on ME patients rate MRIs of ME patients and normal controls for presence of CCI.
Um yeah ok geniuses and what if the non-patient patient has 'incidental' flu-like symptoms all the time or every time they exert themselves like by walking around the block? Normal and temporary fluctuations of the body my ***.
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