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What I find annoying is that if these people have a case then why didn't they input to the evidence gathering phase of the preparation of the guidelines as those like @Jonathan Edwards and others on this forum did, or send a response to the consultation on the draft guideline (published November...

"The chief deficiency in any study on CBT and GET for ME/CFS is nearly always the same: an over-reliance on self-report measures in what are inevitably unblinded trials."

Reminds me of Karl Morten's description of working with Cara Tomas - she didn't eat during the day as this gave her more energy.

"We sure do. From where is the question." DecodeME - GWAS - actually something generated by MRC getting a panel together to identify promising research - @Jonathan Edwards was a member - DecodeME should e.g. indicate/settle the question of whether TRP receptors are relevant --- but also may...

I was going to ask @Jonathan Edwards where's the office/safe space to have those discussions and as per @Trish who should be in the room? Jonathan referred to physical chemistry being key to understand RA - presumably physical chemists were available via the university (and willing/able to do...

Yea there seems to be some supporting factors here e.g. the fact that there appears to have been a consensus (including the NHS England representative*) that the current guideline didn't meet patients needs. We can challenge/have a go at the system but if we can work constructively, with care...

Yea I agree "Might not “emotional dysregulation” be caused by an underlying “physiological dysregulation”?" so if you fix the underlying physiological problem then the consequential impact on your mental health (not sure that great term) may well disappear. "Though of course the BPS folk may...

I think I recall that Wenzhong Xiao (OMF) gave a presentation at the OMF Symposium which basically stated that the genetics didn't support the proposed role of TRP receptors in MECFS? I think they examined whether variations (SNIPs) in the TRIP receptor gene were related to ME/CFS - big no? I'm...

Yea if CBT & GET are not evidenced treatments for ME/CFS in adults (new guidelines) then how come these folks are being paid shed loads of money to "research", and presumably prepare care plans based on, these unevidenced treatments? Surely the least the public research bodies should do is...

My impression was that it was pretty positive - when will you (NICE) get on with publishing the guidelines? From a patient perspective that actually looks positive.

Yea addressing the consequences of ME/CFS, e.g. disabling fatigue resulting in financial stress, may improve the quality of your life but it isn't going to treat your ME/CFS.

Thanks to @Michiel Tack for pointing out that Aaron has been awarded a SOLVE ME/CFS Ramsay Grant - https://solvecfs.org/smci-ramsay-grant-program/

@Solstice were you part of the PACE trial?

Thanks for the laugh ---- don't try this at home! If I tried this in my local (public) park then I'd get a lift in one of those vehicle with flashing lights --- "Keep the faith"

Entirely reasonably I'm sure ----. I wonder if they're looking for feedback on some superfluous crap rather than focusing on the quality of the guidelines?

I posted here* re NICE's approach of using Cochrane review ---- if they're inviting comments then it might be an opportunity to highlight that Cochrane rated PACE etc. as "moderate" quality evidence and NICE (reasonably) found these studies to be "low and very low quality". *...

Sent this* - used a bit of a shotgun approach. "This month Prof. Gillian Leng (NICE chief executive - cc) announced that NICE "have signed a collaborative agreement with Cochrane. Cochrane has a well established reputation for producing high quality systematic reviews which take into account...

Weird, my knowledge of virus is limited but they basically need to get into your cells ("key" if you like) and then use the host cell to replicate the virus --- via the viral DNA/RNA ---- virus don't invade the mind, just the cells they can replicate in! The mind thing is no more relevant than...

If we have an expert re why NICE downgraded the assessment of PACE then it would be useful if they stepped forward. I've had a brief look (it's difficult to untangle). On page 317 NICE sets out the following: "23 The majority of the evidence was of low and very low quality. The main reasons...

I was thinking of sending this* to the APPG on ME/CFS and Long covid - copying in Prof. Gillian Leng (NICE chief executive) and the Secretary of State for Health and Social Care (which funds NIHR and NICE), MECFS & Long covid charities. Might be better if inaccuracies were identified here rather...