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Interesting inhouse NIHR perspective: https://www.s4me.info/threads/long-covid-and-the-ghost-of-nursing-theory-2022.24898/

It's a form of 'tantalus effect' - reach out, seemingly achieve desired functionality, only for it to disappear as a result of reaching out. I'd also use a starter motor analogy - even if there's enough charge in the starter motor to get the main engine to turn over, there's never enough...

Applying for Public Committee Member Roles with the NIHR NIHR Evaluation Trials and Studies Coordinating Centre Patient and Public Involvement Reference Group Payments to Public Contributors The requirements look pretty challenging and I'm not sure that there's huge opportunity to impact NIHR...

I think it is more complicated than that - one would have to go through all the studies by individual lead researcher and/or Phd supervisor to collect the data - that could be done, though at this point I'm not sure of the value of doing that. Of the three you mention, as far as I can tell only...

That I think is covered by: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-407017 "Chalder receives salary contributions from the NIHR - declared in: Paediatric chronic fatigue syndrome: 25 year perspective and Graded exercise therapy for patients with chronic...

Re: the National Disability Strategy - ruled illegal at Judicial Review: Government ‘must tear up national disability strategy’ after high court defeat The national disability strategy is a Government initiative, as an independent body (similar to NICE) the EHRC is answerable to Parliament and...

I have no idea what this is saying about ME/CFS - I suspect nothing. The two references that are used to justify ME/CFS inclusion are Naviaux et al Metabolic features of chronic fatigue syndrome ,how that work is linked to this is not explicit, at least it is not made so in the text; there is...

In terms of diagnosis for individuals - as opposed to selection for research, biomarkers may be as problematic as they are helpful. At this stage we have no idea whether we are talking about a single condition with a single sequential pathophysiology for which a single biomarker would provide...

Time for capital letter soup. The UK's publicly funded research set up is pretty complicated and any process led by the MRC - which might now be overseen by UKRI with different priorities to the previous management - would not have a direct impact on NIHR. There is the Office for Strategic...

Article at Disability News Service https://www.disabilitynewsservice.com/new-concerns-over-equality-watchdog-as-it-scraps-disability-committee/ "The equality watchdog has secretly decided to scrap its committee of disabled advisers, without attempting to consult on the move with disabled people...

:emoji_rage:Funded by - National Institute Of Neurological Disorders And Stroke of the National Institutes of Health under Award Number R01NS111105. So why not open access ?!?:emoji_rage:

New relevant work from Conroy, Jason et al, discussed here https://www.s4me.info/threads/evaluating-case-diagnostic-criteria-for-me-cfs-toward-an-empirical-case-definition-2022-conroy-jason-et-al.24829/ Doesn't include NICE 2021.

It would certainly be a sea change in perception of patients - positive messaging from biomed sources etc. How far the tide will have shifted is a function of how big the problem is and we still have no idea what it is going to take to even get a half good picture of what ME/CFS is. We have to...

Depressive realism - https://en.wikipedia.org/wiki/Depressive_realism "the hypothesis developed by Lauren Alloy and Lyn Yvonne Abramson[1] that depressed individuals make more realistic inferences than non-depressed individuals. Although depressed individuals are thought to have a negative...

Always useful to look at the quoted source, in this case: Prevalence of post-COVID-19 symptoms in hospitalized and non-hospitalized COVID-19 survivors: A systematic review and meta-analysis to check whether hyperbole is being substituted for facts. What the source actually says: "In fact...

Re: "2.1. Participants The participants were from a high school in Shaanxi Province, China, a full-time closed management school where students with CFS are concentrated." Having consulted a knowledgeable person this is probably not as weird as it sounds in translation and what is meant is a...

Whatever you think - I can only offer suggestions from the sidelines as per https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406747 Darren Jones may feel conflicted over having a go at his local University so the Crawley aspect would have to be toned down - leaving...

Poorly informed or biased researchers will, excepting serendipity, produce poor research. There isn't, and never could be a criteria set - whether diagnostic or research focused, that can stop ill informed, prejudiced or mendacious researchers from producing inadequate, misleading or dishonest...

It may not be a killer, but I would guess the MPs for the four Bristol constituencies - E, W, S and NW together with the immediate surrounding constituencies of North Somerset, NE Somerset, Kingswood, Thornbury/Yate and Filton/Bradley Stoke might be wary of upsetting the applecart, although...

In the context of research there would have to be a definition of what is meant by "trigger". The common meaning is something which has causal impact, rather than simply meaning x preceding y. Defining trigger in ME/CFS is challenging because we don't know what any of the underlying mechanisms...