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My reading of it is that the flexion, hyperextension and rotational positions that, I understand, are required during the upright-MRI are the problem here, beyond any increase in normal activity levels. Some of these postures may require positioning and holding the head for relatively long...

Interesting findings. These are the natural conditions the immune system has developed in over millennia. Now we have a vaccine and a handful of studies and think we know everything. Do we...? I’m wondering what impact recalibration of the immune system by childhood measles infection might...

Yeah, I definitely agree it's a confusing questionnaire. I've not read the full thread, so I'm just answering in a general context... Some while ago I attended one of the NHS fatigue services' 10 week CFS management courses, or whatever they were called. It involved a group therapy CBT-type...

https://www.theguardian.com/society/2019/oct/08/jobseekers-told-to-call-their-depression-low-mood-on-applications?CMP=Share_iOSApp_Other

Thanks. I think it's a noble sentiment, and I can't see anything wrong with the text of your letter. However, I'm cautious about holding up so called 'evidence based medicine' as beyond reproach. EBM, and what is judged to qualify as EBM, is what's been used by policy makers to oppress us...

Finding out the mutation is present in 90% controls is a little bit perturbing, agreed. However, if we phrase it differently and say people without the IDO2 mutation can not get ME/CFS, they’re somehow inherently protected against the possibility of ever contracting it, then you can see why it...

https://www.getselfhelp.co.uk/act.htm For anyone else who didn’t know what ‘ACT’ is, it’s ‘Acceptance and Commitment Therapy’... If you get referred for ACT you really know you’ve reached the end of the line, lol. At least it’s a more honest way to patronise patients than CBT. Sorry, in a...

Oh I’d not heard about that. Was the death a patient with ME and/ or EDS? Which surgeon? One death out of 5 PWME would be a worrying stat. I think the overall death rate for OCF/ spinal surgery must be much lower than that.

The Costa et al 1995 study, you referenced, included 67 patients with ME/CFS and reported: "Brain-stem hypoperfusion was confirmed in all ME/CFS patients." So that appears to be quite a remarkable finding really. I've not read the full paper but would be interested to, if you could possibly...

I would imagine the advice is that the patient should do their normal level of activity in the days before the test. If they normally try and do a 4 or 5 minute walk most days, and half an hour cognitive activity, or whatever, they should continue with that, not rest completely. If the subject...

I've not read full paper, but don't think the authors' objective, at this stage, was to try and develop brain SPECT as a specific diagnostic test for ME/CFS. However, it can demonstrate characteristic findings that help support a diagnosis. The abstract also says "Patients with ME/CFS have a...

Sorry to hear this, I think he helped some people. I know of one person in the UK whose ME illness he helped diagnose and document as an expert witness for a legal case, I believe (but this was over 20 years ago). I agree he was something of a maverick and no doubt overly dogmatic in his...

The trend between CFS Ability scale and mitochondrial energy score is intriguing, and the Ability score was blinded to testing. Perhaps there is something there, and this should be explored further but the test is a long way from standardisation and commercial application. What would also be...

This, presumably, is Dr Myhill's clinic in Wales? So the blood samples would need to be sent by post, unless patients had the blood draw done separately at Biolab in London. So, JMH was "blinded to the *Ability*" (a mutually agreed number on the Bell Ability Scale, between patient and SM)...

I think they did that, but haven’t read the full paper. See this comment from the abstract: “compared with their counterparts receiving feces from healthy controls.“

https://www.theguardian.com/world/2019/aug/06/christian-science-church-medicine-death-horror-of-my-fathers-last-days The terrifying power of dogma!... Presumably, any similarities with the imposition of biopsychosocial therapies on patients with ME are entirely coincidental, according to The...

Re: The Guardian, I've long been puzzled by this also, but I think possibly their understanding of the issues has been heavily influenced by Dr Ben Goldacre, a former journalist for them, who wrote their weekly 'bad science' column for 8 years, and who, incidentally or not, is a protege of SW...

Wow... The vanity of MS is remarkable to behold. And his ability to indoctrinate naive journalists with a ready-made narrative (his preferred narrative) is both disturbing and uncanny. Don’t they come away from him with the sinister feeling they’ve been manipulated? He missed out “how they...

https://www.theguardian.com/us-news/2019/jul/16/pentagon-review-weaponised-ticks-lyme-disease

https://www.theguardian.com/lifeandstyle/2019/jul/15/mid-year-burnout-does-it-exist-or-are-we-all-just-permanently-tired?CMP=Share_iOSApp_Other