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Extensive discussion re using actimetry here*. Also, bear in mind Jonathan Edwards's comment "When I acted as MRC advisor this recent time around the GWAS [Chris Ponting's] project was the one thing that looked worthwhile, apart from maybe some actimetry studies**...

I have a friend who quickly abandoned the psychology degree they started out on --- he said that most of the class were obviously there to try to figure out what was wrong with them ---- If you were normal then would you spend your time trying to figure others out?

Haven't read the comments above but I'm wondering how they will evaluate the "intervention"; I'm pretty confident that there will not be objective outcome criteria, like ability to return to normal life --- Why mess up the case for a treatment by testing if it has any real world benefits i.e...

Occurred to me that Jonathan pointed out that the term for rheumatoid arthritis could be include "D4"*. A GWAS study, into rheumatoid arthritis, would, presumably, quickly identify the gene that codes for D4. OK more difficult in the case of ME/CFS, since the population won't be as well...

To state the obvious, this is where GWAS is intended to help. E.g. there's some discussion here* re a candidate gene (TPPP1), identified through a small GWAS study, which may increase risk. Chris Ponting (DecodeME) has stated that the drop in the cost, of running a GWAS study, prompted him to...

Seems like Binita Kane is someone the ME/CFS charities should try to cooperate with --- seems to nail it!

What strikes me about this is a positive i.e. the availability of objective outcome criteria [EDIT - like data on school attendance] for unblinded studies - similarly, US Army studies (to support veterans) used geographical (movement) data from a phone --- another alterative objective outcome...

I used to watch Independent Sage (YouTube) and I seem to recall the issue of politicians saying --- "we've broken the link between infection and hospitalisation" --- being discussed. The point was that they may not have broken the link between infections and long covid ---- not to mention the...

Yes, the APPG, or at least some members, may be happy to raise the issue - can you link it to NICE linking up with Cochrane? Good old fashioned "chumminess", mixed with a dose of uncaring (not their family, friends etc.) and what seems like incompetence i.e. NICE/Cochrane agreement. Might be...

Some random thoughts re Peter White's article (or at least how I recall it). Brian Hughes has pointed out that unblinded studies require objective outcome criteria - we now have actimetry (FitBit type devices). Therefore, the outcome of an unblinded trial can be assessed objectively. If we...

Wonder if she was "selected" in the knowledge that would promote the ME/CFS cause but that seems ridiculous based on how excluded ME/CFS is ---- but yes, it's positive for a number of reasons 1 of which it makes it harder for those who challenge ME/CFS as a real (biological) disease.

Yip ---- let it die --- do nothing ---- and to be fair, while irksome to us (which they'll enjoy), it's a strategy that works! I'd just contrast this to Chris Ponting's approach. His friend Simon was ill and he was keen to do something to help. When the cost of GWAS studies dropped sufficiently...

Nice one Caroline - I can feel the salt being rubbed when I read this: "As NICE have just published a new guideline for ME/CFS informed by a rigorous and comprehensive evidence review----". Wonder how they are going to address that- 1) rubbish NICE's evaluation of the evidence - not attractive...

To be fair he/these statements get a fair bashing from patients - thanks. As for this statement*; I recall people on this forum stating that they'd use any treatment that works ---- it's just that we don't have any. *"Why deny patients with chronic fatigue syndrome treatments that can help?"

Yes it's a thing of beauty: "Quis custodiet ipsos custodes? (Who shall guard the guardians?) .. The current answer is ... no-one." Well I vaguely recall the guards calling Jonathan a pain in the flesh or some such ---- so I'd nominate you and Jonathan!

I recall Simon M, in a review of a previous metabolic study (by Hanson's group), writing something along the lines of --- we [this study] didn't find anything --- if we were to repeat this study then we'd introduce a stressor --- like exercise. So they've now done that follow up study i.e...

Haven't read the study (or even the abstract) but my knee jerk reaction is that they could have selected using actimetry combined with a diagnosis of ME/CFS. There are probably plenty of studies which demonstrate how actimetry could be used e.g. Friedberg* and (didn't think I'd even quote this)...

Yea carnitine is interesting to me. My wife has a neurological condition and low carnitine turned up in one of her tests; so she supplements with carnitine now. Our daughter has disabling fatigue - a doctor has commented that it looks like ME. If carnitine is relevant then Chris Ponting's GWAS...

Hi thought I'd flag this up here. In their response, to an EU Parliamentary Question [asked by Günther Sidls (MEP)], the EU Commission stated that it will "The Commission will support a [scoping] study to help identify high burden conditions [like ME/CFS & Lyme - long covid?] that are...

Just wondering how they are going to reword it -- Rosetta Stone-- some interesting translations/euphemisms --- for pain in the flesh substitute ----?