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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.

Very strange, content-free abstract. I can't figure out what the intervention involved.

Full text up now: https://sci-hub.tw/10.1136/dtb.2018.000035

Central sensitisation: the latest Swiss army knife explanation for every chronic problem they can't treat.

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.

Another one bites the dust. I guess.

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 ***.

Me neither. I am very grateful to Jen for her advocacy. I think it's been effective. I just couldn't relate to her presentation at all and as a result did not show the movie to anyone in my non-ME family/social circle. There were also medical claims in the movie about NK cells, mold...

That's right, just as many who pursued rituximab got worse from the physical effort of getting to and from the treatment.

It seems highly unlikely that CCI can cause symptoms of ME/CFS. That of course doesn't exclude the possibility that someone has ME/CFS AND CCI or has CCI but was misdiagnosed with ME/CFS. Anecdotal recoveries from ME/CFS following surgical correction of CCI do not tell us anything about the...

Their entire careers have consisted of Machiavellian quest for power and denying patients the ability to survive in the world so that insurance companies and govt can save $ and they have the gall to talk about morals.

I actually can't bring myself to read this. Everything written by that man is pretty heinous.

Me too. And I doubt it was placebo because no other drug did anything whatsoever and this one made me able to walk around the hospital ward some having been bedbound for many months previously. Wore off after 24 hours or so.

Me either. This is just the latest in a long line of analogies psychiatry has used to try and understand the brain. As technology has evolved, so have these analogies. If you go back 100 years to Freudian psychoanalysis times, it was a hydraulic or steam valve model of the brain purporting to...