U.K. APPG on coronavirus - a route to lobby for ME/CFS?

F

FMMM1

Senior Member (Voting Rights)
Hi just noticed that there's an APPG on coronavirus* and was thinking that this might be a useful vehicle to put pressure on the Department of Health and Social Care (which funds NIHR) regarding the funding of low and very low quality research into ME/CFS.

The same people who carried out these studies in ME/CFS are likely to move into Long covid - research - after all they have all of that ME/CFS experience! @Jonathan Edwards summed it up nicely "The vultures are circling - and babbling as they fly"**.

So maybe we could use the APPG on coronavirus* i.e. to put pressure on the Government to stop funding these low/very low quality studies in Long covid. If these researchers are challenged via that route then it should help to engrain a policy of not funding low quality research [typically unblinded and with subjective outcome indicators].

Anyone:
  • know the main Long covid lobbying groups/individuals?
  • have a contact(s) within these groups/individuals?

EDIT - I've copied a few emails to LongCovidSOS [info@longcovidsos.org] but they haven't replied - maybe they're busy with SOS!
I've also emailed Dr Nisreen Alwan but again no reply

*https://appgcoronavirus.marchforchange.uk/

**https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-151#post-314441
 
Last edited:
NelliePledge said:
As there is an existing APPG on MECFS I doubt very much the CV group will get involved directly in any lobbying on MECFS. It would be for the Chair, Carol Monaghan to engage with Layla Moran Chair of CV group to work out how the 2 groups can best work together.
Click to expand...

Perhaps I haven't made myself clear, if the Long covid groups (people with Long covid not the APPG on covid) challenge any proposals to fund (Long covid) research, which uses the flawed PACE approach, then there's a win for the ME/CFS community - why? Because the opposition to these flawed approaches isn't coming from a few (ME/CFS) nutters/flat earthers it's coming from those poor people with Long covid - an altogether better class of sick people. So NIHR get the message don't fund research which is unblinded and uses subjective outcome indicators (questionnaires); at the very least use electronic activity monitoring (actimetry/actigraphy) i.e. objective outcome indicators. The objective outcome indicators will show that CBT (psychological interventions) and GET (exercise) are useless - only to be expected.

So this isn't co-operation between the two APPGs, this is trying to get the Long covid lobbyists/activists to bring an end to the PACE type research i.e. via the APPG on covid& other routes. If you look at the Secretary of States [AKA Minister] for Health and Social Care response to this parliamentary question re using appropriate (objective) outcome criteria in ME/CFS & Long covid research funded by NIHR you'll see that his current line is the current "peer review" system fine*. We spend £5 million on PACE, a low/very low quality study, and the Minister thinks no changes are necessary! We may need those altogether nicer Long covid people to successfully change the Minister/NIHRs policy re funding low/very low quality research.


*Question
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria.

Answer
The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact.
https://questions-statements.parliament.uk/written-questions/detail/2021-06-29/24368/

@Sly Saint
 
Ah ok

i reckon the two guys who do the videos - recently had Brian Hughes and Nina Muirhead on - Gez Medinger and Asad Khan seem fairly clued up and more inclusive/open to PWME than most other LC advocates so could be worth contacting

but also maybe it would still be worth Carol Monaghan raising this with Layla Moran
 
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