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I really don't keep up with this - I Googled "IAG + Cochrane" to confirm what the discussion was about - OK, just spotted it's in the title of the thread! I don't think we can object to Cochrane but I think a line is crossed when NICE links up with Cochrane - NICE is a public body, charged with...

Yes that occurred to me too i.e. the NIH study had found comorbidities. Perhaps diseases which can be mistaken for ME/CFS, i.e. from the NIH study, should form part of the exclusion process which leads to an ME/CFS diagnosis.

Not a criticism Arvo but I seemed to pick up somewhere that they'd identified genes re eating disorders. Seems to be a bit counterintuitive that CBT overrides your genes. I'd be content with a well conducted study which shows it woks though.

Thank you. I think it would be very good to cc NICE - I should have cc Cochrane but I didn't think of that. I did copy to the APPGs and ME Action & Action for ME ----. Andrew Dilnot gave a talk in Belfast a few years ago and he mentioned that you cannot ascribe a value/cost to some things ---...

Sent at last!

Just noticed in this weeks news item* that Professor Karl Johan Tronstad, one of those who met Savid Javid, has publicly challenged the use of "type of escalating training method that is often referred to as GET after the English term "graded exercise therapy"."** *Professor Karl Johan...

DecodeME might give a genetic clue e.g. what protects and what predisposes.

I've tweaked it a bit* ---- probably going to get a reply along the lines that NICE wouldn't base guidelines on unreliable evidence i.e. they would vet Cochrane reviews and remove any of poor quality. OK, if that's what they do then the patient community will be reassured. *Katy, Thank you for...

Someone on this forum said that they had come across a case where CBT was prescribed for someone who was nonverbal.

Some more random thoughts- The DecodeME study stands out as an example of how the system works effectively --- an expert group was formed, to identify promising research areas, and the outcome was the DecodeME study. So you have DecodeME (Chris Ponting) and (the recently rehabilitated) Action...

I still think we should write out our letter to Santa ---- whatever we want done ---- a re-run of the MRC group which led to the GWAS study or whatever. I hadn't realised that Javid was interested in this stuff--- the DecodeME study - a bright shiny bauble of cutting edge research which is the...

The Minister will get thousands of requests for meetings; to accept one it needs to be important. I wonder if those (particularly Conservatives) on the APPG(s), or others with influence, have highlighted concerns and this is the outcome ---- important to get this message across. We need to get...

One thought is that @Jonathan Edwards has pointed out that actimetry/activity studies could be useful in looking at "how to live with ME/CFS" (not sure if that's an accurate description - there's a thread somewhere). I hadn't checked the names (other than Chris Ponting) and yes I was quite...

"There’s been a real lack of research over many years." Hopefully he means research that is likely to tell us something not the stuff which has often been funded.

Here's a revised draft email to NICE*; I've mentioned @Jonathan Edwards expert testimony. I meant to send this today but I didn't get around to it; no point sending it now since they won't be reading emails over the weekend. *"Katy, Thank you for your email and apologies for my delay in...

Quite right. One of the things that bugs me about this mob is that they can do studies with objective outcome criteria (actimetry - FitBit type things) in fact there is baseline (pre-intervention) data from the PACE trial. If they actually wanted to research these interventions then they'd be...

Regarding the problem; I think it's summed up by this exchange*: @strategist "From what I understood with GRADE such studies would generally count as valid evidence. With the NICE guidelines the studies reached the appropriate low grade only when other factors were also taken into consideration...

I'm thinking of replying to my "friend" (in NICE) Katy's email along these lines*; grateful for your views. *"Katy, Thank you for your email. Re your comment that "The wording of the enquiry suggests that the Cochrane review mentioned is of psychological interventions.". My understanding is...

If Angela Vincent was talking about a particulate publication (evidence that IVIG worked) then it might be useful to post that study on his forum.

There's a consistent message on this forum that unblinded/inadequately blinded trials are fine (they seem to be normal in psychological interventions) but you must use objective outcome indicators such as actimetry (FitBit type devices), [EDIT - in these cases]-----. OK if you can blind, and use...