Linking up with the Long covid community

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

See this post:
https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-23#post-358389

 

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

 

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.

 

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)

 

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.

 

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.

 

There are some low key doctor to doctor contacts.

It's probably worth tweeting Jonathan Edwards testimony to NICE at regular intervals to pick up new LongCovid cases.

 

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.