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UK: Long Covid protests calling for more research, Wed 9th March 2022

Discussion in 'Advocacy Action Alerts' started by Noir, Feb 2, 2022.

  1. Noir

    Noir Established Member (Voting Rights)

    Messages:
    35
    Someone calling themselves Long Covid Patient Action Group UK on Twitter has announced protests calling for more research into long covid outside parliament in London on the 9th of March, and a simultaneous "Twitter storm" for those too unwell to come:

    https://twitter.com/user/status/1486762990959484933


    It's open for pwme to join:
    https://twitter.com/user/status/1488827206893809664


    I'm not part of the group, but thought I'd help share the info.

    I know that, compared to ME/cfs, long covid has gotten quite a lot of attention and research funding, but I think there's also a big tendency that long covid research suffers from much of the same as me-research, namely that the big national fundings often goes to "put a plaster on top"-type research instead of proper biomedical research aimed at finding out the underlying mechanisms.
     
    MEMarge, sebaaa, Alis and 17 others like this.
  2. winterwren

    winterwren Established Member

    Messages:
    8
    Can we all jump on this globally and make it as large as possible? It seems like the right time to finally have a loud protest, not a quiet sit in awareness day but a chanting with signs proper angry protest. ?

    I haven’t seen any other planned protests but maybe there are, I’m not that connected on social media.

    Stop psychologizing long Covid and ME, stop the gaslighting, start the research… all that stuff. Any twitter users and social media people on here that can help?
     
    MEMarge, alktipping, Binkie4 and 8 others like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    10,022
    Location:
    UK West Midlands
    Check out MillionsMissing
     
    alktipping, sebaaa, Alis and 5 others like this.
  4. winterwren

    winterwren Established Member

    Messages:
    8
    :angelic:
    MEAction is doing a lot of amazing work right now but I don’t see any millionsmissing protests planned for 2022. Possibly because of covid like last year but they also seem to be very busy with other types of events.

    I do think large but less organized protests would complement all the higher level advocacy going on, especially with long covid in the media right now… But I’m just dreaming, as usual :rolleyes:
     
    alktipping, Noir and Peter Trewhitt like this.
  5. Noir

    Noir Established Member (Voting Rights)

    Messages:
    35
    Last edited: Mar 9, 2022
    MEMarge, Binkie4, rvallee and 5 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Location:
    Canada
    Pretty decent showing, online and in person. Main hashtag used is #ResearchLongCovid. Lots of wording around people being "missing" and begging for medical research. From a small vocal minority, since most people aren't political, or aware. Familiar...

    Will some news media cover this? Or does this conflict too much with the official line about how the pandemic is over and LC is small and fully dealt with by GPs and dedicated clinics?
     
    MEMarge, alktipping, Binkie4 and 2 others like this.
  7. Noir

    Noir Established Member (Voting Rights)

    Messages:
    35
    Yes, it's all very similar to a certain other (or not so other) illness.

    There was media present in Scotland, but I haven't seen any articles online yet.

    https://twitter.com/user/status/1501594734300733446

    https://twitter.com/user/status/1501546950696570886


    I wouldn't bet on BBC News having anything about it though, eh.

    Well done to those who were there, it was great to see a protest, and a nice bonus with two locations at the same time.

    Still a bit frustrating to know how many with LC and ME who probably never even heard about it though. The biggest communities on FB and Reddit usually are the strictest when it comes to posting about advocacy and similar, either that or posts drown amongst all the other personal stories. One way to remedy that is by being better at coordinating those who actually do care in the future.
     
  8. Noir

    Noir Established Member (Voting Rights)

    Messages:
    35
  9. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    9,079
    Location:
    Canada
    It was promoted on the main LC Reddit forum. Not a lot of engagement but it was advertised plenty.

    The vast majority of people want nothing with being involved politically. This is why we have to live with a "small vocal minority", it applies to every single issue. The difference with us is that even a small dedicated minority is disabled and unable to do what even a small vocal minority of healthy people working on a cause can do. It's very hard to get people engaged about anything, and most don't know what to do anyway. Which is normal, this is why every community needs organizers who are able to pull off the heavy workload. We have none of that.
     
  10. Noir

    Noir Established Member (Voting Rights)

    Messages:
    35
    First media coverage by STV News in Scotland:
    https://news.stv.tv/west-central/campaigners-call-for-urgent-targeted-research-into-long-covid

    Video report on Youtube:

    https://www.youtube.com/watch?v=WuktMlkt4vI




    Parenting with Long Covid: ‘I can’t be the mother I want to be for my little boy’ , Metro does a text on the protest...but says it was held in Glasgow, not Edinburgh. In the fact box they say "The recovery time is different for everyone. The length of your recovery is not necessarily related to the severity of your initial illness, or whether you were in hospital.".

    They also link to a FB-group that does NOT allow activism/advocacy, instead of linking to the FB group that actually organised the protest.

    23/3:
    The Guardian used an image from the protest to illustrate this article.
     
    Last edited: Mar 23, 2022
    ahimsa, Trish and Peter Trewhitt like this.

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