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Yes I'm told* that putting it on social media is a good idea - may force a response *Former colleague, who worked in the Minister's private office - my approach was/(largely) remains to write emails etc. However, their advice was to put it on social media - more public and thereby more likely...

Wondering if this will give Cochranites bright ideas - launch on the stock market and make some money ---- you can see the dollar signs!

Don't get all technical and analytical --- it's not like this is science!

I seem to recall that, in the initial vaccine trial, a small number of people reported side effects --- when they unblinded the trial they found that there was a higher number in the placebo group (saline injection?) compared to the group which was vaccinated.

Where to start. "We think it is important to assess self-report outcomes in routine clinical practice within the UK National Health Service, where the routine use of objective measures is precluded due to cost" This statement at least acknowledges that you should objectively monitor the outcome...

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!