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Your post sums up that failure to collect objective data shouldn't be tolerated - this crap shouldn't be funded by your government.

I've a friend who knows way more about food than I do --- his advice is any sheep's milk cheese --- seems there are even some English/UK cheeses made from sheep's milk (haven't tried them though).

Wouldn't it be a whole lot easier to use CBT, on the test group, and objectively monitor whether activity levels changed (from pre-intervention/baseline) i.e. using actimetry (FitBit type devices)? Having established that the intervention didn't work then why not publish that and suggest that...

Check out Crawely's SMILE trial of Lightning Process - the idea of doing a trial on pseudo science seems surreal/bizarre. Anyhow, it was published in the BMJ i.e. after the outcomes were switched from objective (return to school) to subjective (response to questionnaires in an unblinded study)...

I very much hope you are right - I, after all, have a vested interest in you being right/MECFS & long covid community (+Lyme?) working together. I'd tried to contact a few prominent people (with long covid) and (long covid) representative groups in the UK - never got a reply. I had noticed...

Just skimmed through the abstract and I'd be interested to see if the tested a large control group and a large ME/CFS group then would there be clear differences? I'm also wondering if the more knowledgeable would be concerned that the differences are artifacts of the technique - perhaps...

Haven't read the posts here or the abstract - so a few standard comments from me! I would have thought that what's more worrying is that rituximab, i.e. a go to treatment didn't work - not sure if "plasmapheresis or immunoadsorption" are really go to treatments for autoantibody/autoimmune...

Thanks Toying with the idea of copying the draft question to the APPGs (covid & ME/CFS) and the new Minister/Secretary of State for Health & Social Care and (now) UKCRC. My MP's assistant contacted me yesterday evening, to advise that my draft question was 1st item on the agenda for todays...

I've heard back from my MP's assistant re this draft Parliamentary Question*. Can anyone provide me with a link to the current position re Sajid Javid's initiative on ME/CFS - I'd heard there's been an initial meeting (attended by Charles Shepherd?) - so a link to that stuff might help to...

Again is this the sort of thing which, if it is really relevant to ME/CFS, would turn up via GWAS - some copies of genes related to this response increasing/decreasing risk of ME/CFS?

Yes - great to hear you are participating and thank you for doing that.

Not adding much but comments above ring true from very limited experience. I recall a PhD biochemistry student who had cobalt/B12 deficient sheep and control (not deficient). The ruminant samples, from the deficient animals, had a huge peak barely present in the controls. The student, of...

You might want to check out Chris Armstrong's 2016 (SOLVE) webinar*. From memory he discusses potential downstream effect of the switch in metabolism - bistability (ME/CFS disease state being stable). I wonder if GWAS (Chris Ponting's genetic study) will turn up clues. E.g. if it's the...

Yip I certainly haven't directly answered his question but if he checks out the paper(s) I've referred him to the I think he'll find what becomes of the various things being utilised /not utilised. Think Chris Armstrong looked at blood plasma and urine etc, using NMR, finding high glucose in...

Not sure it is e.g. I think Jonathan* has pointed out that the role of complement in Lupus became obvious from GWAS - following the same logic, a GWAS study should/may find indicators pointing to people with ME/CFS being stuck in a "lower energy mode" associated with post infection. *"I see it...

EDIT - "on brief reflection I may have reiterated my usual response rather than thinking of your question! Surplus this or that may not be a problem - the problem may be that the system isn't working normally/you persist in a "disease" state. Check out the papers I've referenced and bear in mind...

Precisely and presumably we'll need the key charities (like Forward ME?) and APPG (even the covid APPG) to lobby to get +ve recommendations implemented.

Not keeping up (as usual!) can someone send me a link to Javid's initiative (vaguely recall something about it). Thanks in advance

Those replies are normally provided by (uncaring) Departmental officials/civil servants - they probably/maybe get checked by the Ministers "minder" (SPAD) before they issue. With Sajid Javid, AKA a Minister with a personal interest, the replies would be more likely to commit to action --- if the...

I wonder if Chris Ponting's (genetic) GWAS study will provide a mechanism to test the brain inflammation theory? Possibly if the GWAS study points to immunity then that might support this brain inflammation research. EDIT - the fact that Jarred is using MRI then that would reassure me - my...