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Someone's probably covered this but surely the question is how could the 2007 guideline have happened? If anything, that should be the subject of inquiry. Yip in the age of the FitBit researchers continue to rely on questionnaires - unblinded studies with subjective outcome criteria. So 10...

Yea sometimes people appoint someone on the basis of something they did elsewhere - without considering the context. Speculation of course.

Don't have much experience of Emerge Australia but I can't remember anything negative- they have run excellent conferences and I'm sure done a lot more - what's happened?

Is there a more complete form of the study protocol i.e. including all of the data they propose to collect? If something isn't listed as a primary outcome (actimetry in this case) then can the (actimetry) data be withheld - if it's listed as a primary outcome then is it expected to be disclosed...

Interesting I seem to have missed that. Here's an extract from the study protocol: "Primary Outcome Measures : Fatigue Severity Scale (FSS) [ Time Frame: The entire duration of the study is 3 years. ] The FSS comprises 9 questions, by answering which the patient can assess his limitations due...

Just emailed the trial lead "Sarah" [https://www.usz.ch/team/sarah-lavinia-florence-schiebler/]. I've suggested that Sarah might wish to check out this site - can't recall how you join though. *Sarah, [my story/background] ---I noticed a trial you are leading "Effectiveness of Acceptance...

Hopefully they are trying to help and they have the support of other clinicians to try to treat "Chronic Neurological Disorders Including Traumatic Brain Injury". However, the title brings to mind the comment "sorry, I haven't a clue".

There's an acquired brain injury clinic in one of the hospitals here in Belfast and it seemed to have a high proportion of young rugby players. I know of one person, who was told by a Doctor that they may have ME/CFS, who was briefly referred to this clinic.

I agree with the objective "Technology Assisted Solutions for the Recognition of Objective Physiological Indicators of Post-Coronavirus-19 Fatigue". I've no idea if the indicators they are suggesting [EDIT - are objective].

I've only read the few sentences above; however, I'm struck that if magnesium was a common problem in people with ME/CFS then surely it would have turned up in some studies? The results from the GWAS [Chris Ponting] study should help to test this theory. I think I vaguely recall a single...

Thanks Michiel -much appreciated.

Hi, got a response to another of my FOIs re meetings held between NICE & Cochrane: "Dear Xxxx, Reference No: EH-320401-Y1Y2R1 FREEDOM OF INFORMATION ACT 2000 Thank you for contacting the National Institute for Health and Care Excellence (NICE) with your request for information, sent to our...

I'm planning to ask a totally unrelated question re access to antivirals - in fact it may be unrelated to ME/CFS. I'm not clear, but my impression is that it's possible to be excluded from access to ventilators, due to underlying health conditions, and excluded from access to antivirals. So my...

Can anyone tell me how to submit a question to Independent Sage? Thanks.

Recalled that I'd suggested that the groups representing those with Long Covid should join this site. Again, I didn't get a response but since you're coming to the attention of more people, it might be worth highlighting that they might find this site useful.

Sadly true slightly(?) tangential - we have Diddo Harding appointed interim chief of new health institute ... well if you can't be part of the solution then make money from the problem the problem we have, is that we have a perception that this is about health --- it isn't

I've skimmed about 2 lines of this --- I'm struck how the sham/scam works --- pick something that cannot be objectively measured (pain in this case), then use a psychological intervention and (important bit) use subjective outcome criteria --- that way you can write some subjective psychological...

Great to see this @Robert 1973 . Glad you're getting some responses/engagement - this should help to alert the Long Covid community that they are next in line to be scammed by the same "researchers" who carried out PACE and all of the other unblinded studies with subjective outcome criteria in...

Pretty shocking --- filling your pockets from the public purse and wrecking the health service under the guise of "improvement" - no wonder @Jonathan Edwards packed it in (retired). --- the title of the new organisation ---National Institute for Health Protection ---- seems Orwellian

Yip and those [public servants] agreeing to funding for projects [UK - NIHR] which lack any meaningful outcome indicators (relying on questionnaires) should be challenged by the APPGs, public accounts committee +++ Haven't been keeping up but have these charlatans received funding from NIHR or...