Linking up with the Long covid community

F

FMMM1

Senior Member (Voting Rights)
Moved post

I emailed the LongCovidSOS group*, after noticing one of their members on the Independent Sage weekly YouTube video last week. Maybe there are people here who have contacts in the Long covid community?

*Email to LongCovidSOS group [info@longcovidSOS.org]
"Really just contacting you as you may find the ME/CFS community has knowledge & experience which may be useful - although, hopefully those with Long covid will not suffer the same marginalisation. One of the issue faced by the ME/CFS community is poor quality research, despite the fine words in this Parliamentary debate* it appears that nothing much has changed - poor quality studies, assessing exercise and CBT, which have no objective outcome indicators e.g. like electronic activity monitoring, are still being funded. So the researchers claim, based on flawed studies, that this is all in your head. The researchers who carried out low quality studies in ME/CFS are now being funded to carry out the same low quality studies in Long covid. Here's a website you may find useful - Science 4 ME [https://www.s4me.info/].
I've emailed some MPs recently re the issue of Government Department's funding low quality research into ME/CFS**.

Regards and good luck to you guys
Francis

*https://hansard.parliament.uk/commo...4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment

**Email to MP's re low quality research:
*"My [family member] -----

You participated in the Parliamentary debate on "Appropriate ME Treatment" - Thursday 24 January 2019. During the debate there were numerous criticisms of the Government funded [£5 million], 2005 to 2010, PACE trial which set out to assess whether ME/CFS could be treated using CBT or exercise therapy.

In November 2020 NICE published - "Evidence reviews for the nonpharmacological management of ME/CFS" which found that "the evidence [PACE and other studies] was of low and very low quality" generally this was, as in the case of PACE, due to "lack of blinding in the studies --combined with the mostly subjective outcomes".
[https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7 - See page 317]

So, as highlighted in the Parliamentary debate, PACE etc. were "low and very low quality" i.e. could not be used as a basis to assess treatment options. Interestingly, PACE was originally intended to include objective outcome indicators i.e. actigraphy - small wearable devices used to measure activity levels "But they never published that data and that data undoubtedly said that the interventions were no good, no use." [Note]. By using questionnaires the PACE study authors were able to claim that CBT and exercise therapy were effective in treating ME/CFS - basically using the strategy Sir Humphrey famously illustrated i.e. manipulating your audience to get the "right" answer - using questionnaires.

Last month Claire Hanna asked a Parliamentary Question [UIN 24368] - 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."
The weasel words from the SOS were "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.". The truth of course is that, despite the criticism expressed in the Parliamentary debate and the damning criticism by NICE, the same "low and very low quality" studies are being funded by Department of Health (via NIHR) and doubtless, the Department for Business, Energy and Industrial Strategy (via UKRI). I.e. studies evaluated using questionnaires not objective activity monitoring (actigraphy).

As Parliamentarians, how do you propose to address the issue that these Departments continue to fund "low and very low quality" studies in ME/CFS, and Long covid, despite Parliament's criticism?
In the Parliamentary debate it was stated that "90% of [ME/CFS] sufferers were working before they were diagnosed. That figure drops to 35% afterwards". There are an estimated 200,000 people with ME/CFS in the UK, people who are deprived of the right to attend school, university, work ----. Are these people less important than the researchers who received £millions for "low and very low quality" studies?

10,000s of people with Long covid now face the same experience as people with ME/CFS. The same Government buddy researchers, who delivered Government funded "low and very low quality" research in ME/CFS, are now being funded to carry out "low and very low quality" research in Long covid - I suppose you could call that "levelling up".

Will the Government not address Parliaments concerns and ensure that the research they fund uses objective outcome indicators (actigraphy)?


Thank you in advance for your assistance,
Xxxxx

Note - "But they never published that [actigraphy] data and that data undoubtedly said that the [CBT & GET] interventions were no good, no use." [Professor of Psychology, Brian Hughes - ]"


**pubaccom@parliament.uk
carol.monaghan.mp@parliament.uk
robert.goodwill.mp@parliament.uk
matthew.offord.mp@parliament.uk
amessd@parliament.uk
nicky.morgan.mp@parliament.uk
emma.lewell-buck.mp@parliament.uk
kevin.foster.mp@parliament.uk
ben.lake.mp@parliament.uk
liz.twist.mp@parliament.uk
nick.thomassymonds.mp@parliament.uk
patricia.gibson.mp@parliament.uk
darren.jones.mp@parliament.uk
mohammad.yasin.mp@parliament.uk
jim.shannon.mp@parliament.uk
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See this post:
https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-23#post-358389
 
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Hi, I think we should try to build links to the Long covid community. Long covid may help to decontaminate poorly understood diseases like ME/CFS - thereby helping us!

I've emailed "Dr Nisreen Alwan, Associate Professor in Public Health," [Southampton University] twice but haven't had a reply. Nisreen's pretty high profile so maybe someone to link up with - anyone got a contact with Nisreen?

@Michiel Tack
 
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Are you sure there are not people other than Alwan whom it might be better to try to contact? She may have learned something over the course of the last year but at the outset she seemed very eager to distinguish long covid from ME, for reasons which seemed neither scientific, nor empirical. There are some of us who would not regard her as a potential ally.
 
chrisb said:
Are you sure there are not people other than Alwan whom it might be better to try to contact? She may have learned something over the course of the last year but at the outset she seemed very eager to distinguish long covid from ME, for reasons which seemed neither scientific, nor empirical. There are some of us who would not regard her as a potential ally.
Click to expand...

Yes, her tone seems to have shifted somewhat recently - particularly since she may have seen that long covid is, too, being dismissed and that the separation has not offered protection against this - but she has been pretty adamant to keep them separate nonetheless. She also recently wrote something that did not mention PEM despite it being a common symptom of long covid. I hold out hope that she will shift further, as she is relatively high-profile in this area and has (in my opinion) not been as bad on the issue as others speaking about LC, some of whom have been actively hostile to MECFS. So I would not give up on emailing, but I hope there are also others worth contacting.

(I have long covid and MECFS but am not in the groups)
 
chrisb said:
Are you sure there are not people other than Alwan whom it might be better to try to contact? She may have learned something over the course of the last year but at the outset she seemed very eager to distinguish long covid from ME, for reasons which seemed neither scientific, nor empirical. There are some of us who would not regard her as a potential ally.
Click to expand...

Might explain why she didn't reply to my emails. I kind of had a feeling she mightn't wish to start challenging researchers [for doing low quality research] - being in the academic field herself but I guessed it was worth a try.

Thanks for the heads up.
 
FMMM1 said:
I've emailed "Dr Nisreen Alwan, Associate Professor in Public Health," [Southampton University] twice but haven't had a reply. Nisreen's pretty high profile so maybe someone to link up with - anyone got a contact with Nisreen?
Click to expand...

I applaud your efforts with MP's, but I'd be wary about encouraging individuals with ME to contact individuals in the Long Covid field by email. I imagine anyone prominent in Long covid is being besieged with contacts wanting them to support all sorts of initiatives, and they can't possibly be expected to reply to them all and to filter which are useful and which are quacks.

I think it's better for this to be done between organisations rather than individuals, for example in the UK, the MEA and Physios for ME have been actively involved in spreading the word to people with long covid and their organisations, and Solve in the USA have set up a long Covid group.
 
I'd think in the long run, people with LC that won't recover after >1 year or rather their patient orgnaizations will reach out to "us".

To some extent I think it's normal and healthy that many dont want to be put in the ME category since there isn't enough knowledge about the sub categories in LC, e.g. heart and lung damage, "normal" prolonged post viral fatigue etc.

We've seen with P Garner how this can backfire.

As for now I think it's their own fight and experience to make.
 
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I agree it might be better for organisations to get in touch with the different long covid communities. Check out Long Covid Alliance, that's just such a collaborative project.

Yet I also think it's quite frustrating to see how little attention people in long covid communities and support groups have for what happens in the ME/cfs-world, especially when it comes to the political side of it, with the lack of research and funding for instance. Personally I have a foot in each camp, and when the NICE guideline pause broke yesterday, two of the biggest LC-communities I'm in, with approximately 60,000 members, had 0 posts about it. I posted one; 0 likes, 0 comments, it was probably a miracle that the post was approved by the moderator in the first place...

Since long covid is a big category containing so many different diagnoses, where maybe 10-20% go on to develop ME, of course everyone hopes it's not them. Most want to hear happy stories, many are very defensive as soon as anyone mentions ME or cfs. For a year or two, as people hope to get better (and most do), most don't engage particularly much as advocates.

It doesn't help the way some social media are organised either, like Reddit, where posting rules can get suffocatingly strict, and where very powerful moderators can delete everything they don't like. So if the moderators personally have opinions like "long covid is not ME/cfs!", it's really hard to get through to the 25,000 other members in that community. If very few of those who suffer from ME/cfs are active advocates, I fear the percentage of advocates amongst long covid-sufferers is even lower.

For individuals though Twitter is a good place to connect with anyone who are open for it. Hannah Davis (@ahandvanish) and Body Politic (@itsbodypolitic) have been great advocates from the start.
 
There is a clear and growing realization in the LC community that medicine is not up to the challenge and that there are forces at play trying to delegitimize them. Many are seeing what's happening to us and see the writing on the wall.

So I expect more common efforts in the rather near term, they are very close to being ready to deal with the fact that they will need to fight for their lives and that we share all the same goals. At first there was concern that being associated with us would be bad for them, but it's become too obvious that as far as medicine is concerned, the association is there no matter what. Especially since the language is all the same, psychosocial this and mind-duality crap.
 
I expect the long term Long Covid sufferers will be seeing the similarities more and more. Once people have had Long Covid for over a year (so beyond the time most post viral illnesses resolve without treatment) they will find themselves completely abandoned, just as most ME sufferers have been.
 
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