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Wasn't sure where (or if) to put this. But the level of waste (something which politicians love to hammer the NHS for) related to COVID is incomprehensible - if Government invested a fraction of the cost of this waste in research and care, thousands of lives would be improved. "Nearly one in...

Oh my ! No wonder there was such anxiety amongst the usual subjects re: the new Guideline, not only has MRC abandoned them this has the potential to cut off the ever flowing NIHR cornucopia of funding for psych approaches for ME/CFS at source.

Difference between Briefing Paper and Briefing Note - the ideal for the latter = single page A4 at 14point type face. In this case ME/CFS is peripheral to the central issue which is "use of public funds: fairness of distribution and effective use thereof, plus a couple of add ons: gender...

They listed the Pariante, Goldsmith and Risdale awards, what's missing is the direct support via the NIHR Specialist Biomedical Research Centre, but the apportionment of salary and oncosts for Chalder, Pariante and Risdale(?) directly to ME/CFS research is difficult to account for and probably...

That's a very efficient way of targeting effort - there's no point in contacting candidates in a GE who are a) never going to win, or b) represent a Party that will have no impact in the forthcoming Parliament. Personalising contact is important, a letter needs to come from someone who is on the...

Certainly with/without 'reported PEM' is a viable categorisation - but caution is needed to avoid introducing a prior discrimination i.e ME/CFS/not ME/CFS, when there is no prior pathophysiological evidence on which to base that discrimination. PEM may turn out to be descriminatory as a proxy...

I've added link to the op - appologies for omission :oops:

No from me. Also 'shudder' at "briefing note" - I'll start work on something, will share via dm - could get a bit messy for an open thread.

A long jargon filled paper of psychologists writing about psychology for other psychologists - v heavy going ! However there is a genuine attempt to get to grips with the problems that psychological (and by extension, psychiatric) research faces. "The reformers’ efforts to create a scientific...

Kinds of Replication: Examining the Meanings of “Conceptual Replication” and “Direct Replication Maarten Derksen, Jill Morawski Abstract Although psychology’s recent crisis has been attributed to various scientific practices, it has come to be called a “replication crisis,” prompting extensive...

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...