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Long Covid in the media and social media 2022

Discussion in 'Long Covid news' started by rvallee, Feb 3, 2022.

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  1. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    Agree, these groups need to publicise their intent and membership at the very least.
     
    Haveyoutriedyoga, Mar 23, 2022
    #121
    alktipping and Ariel like this.
  2. Trish

    Trish Moderator Staff Member

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    If they are support groups for LC sufferers then membership is understandably confidential, as with Doctors with ME and S4ME.

    Any research grants any of their members have will be public information by the granting body. I'm not sure why this is being described as secretive. What am I missing?
     
    Last edited: Mar 23, 2022
    Trish, Mar 23, 2022
    #122
    MEMarge, alktipping, Sarah and 1 other person like this.
  3. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    Has anybody got information about the RE
    That's a good point actually some of these groups are peer support groups, I think the research / clinical learning networks should be more transparent
     
    Haveyoutriedyoga, Mar 23, 2022
    #123
    alktipping and Ariel like this.
  4. Ariel

    Ariel Senior Member (Voting Rights)

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    I had forgotten about the existence of this group. [Drs With Long Covid] Have they achieved anything? This tweet comes across like the LC issue being used as an opportunity for networking. Initially I was hopeful that such a group may draw attention to issues affecting LC and post-viral patients as they would have a lot of weight with the general public and the media. But this just seems like they have set up a closed group and lobby potentially in private only for the benefit of members of the group. I would be happy to be corrected. I hope they broaden their circle of perceived interest.

    (I am sorry, I tried not to be snarky and did my best! It's been two years now since many of us got ill, including me, so I am a little disappointed and frustrated.)
     
    Ariel, Mar 23, 2022
    #124
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Mar 23, 2022
    #125
    Lilas, cfsandmore, Kalliope and 1 other person like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Well, if they're happy with the way things are happening they can continue being a closed group no one's ever heard of other than the odd mention like that, having no visible impact on the widespread denial and mishandling of Long Covid.

    But the way things are happening is definitely terrible, and the silence of physicians with LC plays into it. If it's because of the discrimination they don't want to face, all the more reason to speak out, this discrimination is immoral and will continue to hurt them. Non-physicians, as we know, have zero influence on health care, if they don't act nothing will change.

    They could dramatically change the course of things. It would help them while helping millions. Doing nothing hurts everyone, they have a duty to speak out. Or that's the idea anyway, clearly duty is another meaningless word in medicine, it really refers to complying with rules. It's as if no one expects anything from anyone, no wonder everything's so broken.
     
    rvallee, Mar 23, 2022
    #126
    Lilas, Wits_End, geminiqry and 5 others like this.
  7. Ariel

    Ariel Senior Member (Voting Rights)

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    I completely agree with this. I have been quite stunned by the complete lack of what I would have previously thought was the bare minimum.

    And "some have NIHR Grants on LC"? Okay. What grants? What is their theory of the case? What are they hoping to achieve? Who are they helping?
     
    Ariel, Mar 23, 2022
    #127
    Lilas, rvallee, Sean and 5 others like this.
  8. mango

    mango Senior Member (Voting Rights)

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    Press release published by the Swedish Covid Association today:

    IVO riktar skarp kritik mot hantering av postcovidvård
    https://www.mynewsdesk.com/se/svens...ritik-mot-hantering-av-postcovidvaard-3171208

     
    mango, Mar 25, 2022
    #128
    alktipping, cfsandmore, Ariel and 5 others like this.
  9. Mij

    Mij Senior Member (Voting Rights)

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    After producing vaccines and treatments for acute COVID-19 in record time, researchers and drugmakers are turning to finding a cure for long COVID, a more elusive target marked by hundreds of different symptoms afflicting millions of people.

    Companies including GlaxoSmithKline (GSK.L), Vir Biotechnology (VIR.O) and Humanigen (HGEN.O) confirmed they had spoken to researchers on trials using their current treatments against long COVID. Others including Pfizer (PFE.N) and Roche (ROG.S) said they are interested but would not elaborate on plans.

    https://www.reuters.com/business/he...-begin-hunt-long-covid-treatments-2022-03-25/
     
    Mij, Mar 25, 2022
    #129
    Kalliope, alktipping, Wyva and 2 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    It's a running gag/gallows' humor in LC forums that the only relevant help and advice they ever got was from... the ME community and LC forums. Meanwhile the ideological bubble of medicine is still harping the same claptrap and selling it, even though it's less useful than the comments section of forums that experts never frequent.

    https://twitter.com/user/status/1507413657658880002
     
    rvallee, Mar 25, 2022
    #130
    Kalliope, Sean, alktipping and 1 other person like this.
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Mar 27, 2022
    #131
    Ariel, Trish and Andy like this.
  12. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Last edited by a moderator: Mar 30, 2022
    Jaybee00, Mar 27, 2022
    #132
    jaded, DokaGirl, Peter Trewhitt and 4 others like this.
  13. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Confusing sentence here—are there clinical trials of meds for chemo brain?

    “Monje believes that knowing those similaritiesgives the field of research into long covid “a real foundation.” She’s optimistic that some of the symptoms people are experiencing post-covid are reversible, and there’s already talk about testing drugs in clinical trials to treat “chemo brain” for those suffering from severe covid brain fog.”


    According to this site, there are no approved meds for chemo brain

    https://www.mayoclinic.org/diseases-conditions/chemo-brain/diagnosis-treatment/drc-20351065

    Actually weak pipeline for chemo brain

    https://ichgcp.net/amp/clinical-trials-registry/research/list?cond=Chemo-brain
     
    Last edited: Mar 27, 2022
    Jaybee00, Mar 27, 2022
    #133
    sebaaa, DokaGirl, Peter Trewhitt and 3 others like this.
  14. mango

    mango Senior Member (Voting Rights)

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    Article in the journal of the Swedish Medical Association:

    Ivo påtalar brister när Stockholms postcovidvård flyttades till Huddinge
    https://lakartidningen.se/aktuellt/...kholms-postcovidvard-flyttades-till-huddinge/
     
    mango, Mar 28, 2022
    #134
    cfsandmore and Kalliope like this.
  15. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    https://twitter.com/user/status/1507993154372321281


    A colleague's (boosted) 19yo daughter is now wrecked: bedbound in a darkened room, 4-5 weeks post "mild" omicron infection. Mum passed on a comment to me—

     
    SNT Gatchaman, Mar 28, 2022
    #135
    EzzieD, Amw66, Lilas and 9 others like this.
  16. Ravn

    Ravn Senior Member (Voting Rights)

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    One of my rules of thumb for judging an interview about LC or ME is how many times the phrase 'we don't know yet' is used. The more often someone says it the more credible I'm inclined to think they are. The two interviewees here scored pretty well.

    33min audio, ME gets a short mention.
    https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018836119/warnings-about-long-covid
     
    Ravn, Mar 29, 2022
    #136
    ahimsa, Wits_End, hibiscuswahine and 7 others like this.
  17. Midnattsol

    Midnattsol Moderator Staff Member

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    New rticle in Aftenposten about exercise and covid. The positives are that they say they screen patients so that anyone that get worse following exercise should not do it, but at the same time I wonder how well that screening process works. I also think some of the people who are able to exercise more during the treatment is learning to plan their ue of energy better, not necessarily "doing more". They are not back to normal.

    Stupid stuff about deconditioning, even with mild illness.

    Denne gjengen prøver å løpe seg friske fra senfølger etter korona
    This gang is trying to recover from late sequelae of the corona (A better translation of the headline would be "This gang is trying to exercise their way to recovery from late sequelae of corona")

    Some quotes from patients:
    About the program:
    It ends with Flottorp from our national institute of public health saying long covid is rare.
     
    Midnattsol, Mar 29, 2022
    #137
    MeSci, Wonko, Trish and 3 others like this.
  18. Andy

    Andy Committee Member

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    Andy, Mar 29, 2022
    #138
    Sean, oldtimer and Trish like this.
  19. Andy

    Andy Committee Member

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    Andy, Mar 29, 2022
    #139
    Ariel, ahimsa, Wits_End and 7 others like this.
  20. Mij

    Mij Senior Member (Voting Rights)

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    Long Covid isn’t the first illness of its kind — one where a patient has an infection or sickness, but the symptoms never truly go away.

    Researchers have struggled for years to understand post-viral diseases like myalgic encephalomyelitis/chronic fatigue syndrome and dysautonomia, a disorder of the autonomous nervous system. Currently there are no cures available. Patients with chronic, post-viral illnesses have often felt misunderstood and dismissed by the medical establishment.

    https://www.statnews.com/2022/03/29/nih-long-covid-sluggish-study/
     
    Mij, Mar 29, 2022
    #140
    Hutan, EzzieD, Ariel and 11 others like this.
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