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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. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Jaybee00, Mar 29, 2022
    #141
    nick2155, EzzieD, Ariel and 10 others like this.
  2. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    As expected, Long covid patients in Australia are about to face the same abuse and gaslighting those of us with ME/CFS have experienced:

     
    Art Vandelay, Mar 30, 2022
    #142
    Hutan, alktipping, SNT Gatchaman and 4 others like this.
  3. Trish

    Trish Moderator Staff Member

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    I hope people like Long Covid physios and Physios for ME will contact these Australian clinics to tell them they are getting it horribly wrong.
     
    Trish, Mar 30, 2022
    #143
    MeSci, alktipping, SNT Gatchaman and 7 others like this.
  4. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    And a timely warning for those with Long Covid:

    As far as I know, there's only one "fatigue clinic" in Australia attached to a university (and we know who runs that one).
     
    Last edited: Mar 30, 2022
    Art Vandelay, Mar 30, 2022
    #144
    Hutan, MeSci, SNT Gatchaman and 15 others like this.
  5. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    SNT Gatchaman, Mar 30, 2022
    #145
    Art Vandelay, Ariel, cfsandmore and 3 others like this.
  6. Wits_End

    Wits_End Senior Member (Voting Rights)

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    Poor Maia: I didn't realise she'd been out so long (and it makes me feel old, remembering her as a promising junior). There are other tennis players I'm aware of out there who are in a similar situation - and at least one ballet dancer I know of, too. Horrible for all of them.
     
    Wits_End, Mar 31, 2022
    #146
    MEMarge, Ariel, Amw66 and 1 other person like this.
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Long Covid Podcast interviews doctor and researcher Ziyad Al-Aly, based in St Loius, USA about Long Covid. Not much news, but emphasis on the seriousness of the disease and how many people that are affected. He also says the work from patient advocates has been crucial for the field.

    Towards the end ME and other post viral illness are mentioned, and dr. Al-Aly says the Long Covid research is a silver lining as it will bring more help to ME sufferers. He also says that post viral illnesses have been known for over a hundred years but swept under the carpet. However, if it had been researched earlier, we would have been better prepared now to meet the challenges with Long Covid. Hopefully we'll not drop the ball again. People chose to ignore it, so now we have to start from scratch.

    https://www.buzzsprout.com/1835170/10209583

    He's on twitter and seems to be tweeting quite a lot on Long Covid, if anyone wants to follow him
    https://twitter.com/zalaly
     
    Kalliope, Mar 31, 2022
    #147
    nick2155, Hutan, MeSci and 12 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    (They mean people who end up more disabled as a result of exercise rehabilitation program, translation isn't great)
    https://twitter.com/user/status/1509502198174076937


    Also interesting for the legal eagles on the forum, and in general: long haulers stating they will pre-empt any attempt at forcing them into rehabilitation programs that they will hold service providers responsible if they deteriorate as a result:
    https://twitter.com/user/status/1509520660179136512


    Of course the service would simply discharge a patient doing that. I don't think anyone expects there to be any actual accountability for those services, they are fully assumed to be risk-free.
     
    rvallee, Mar 31, 2022
    #148
    MEMarge, Hutan, EzzieD and 11 others like this.
  9. Mij

    Mij Senior Member (Voting Rights)

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    Will they be denied disability benefits if they don't comply with 'rehabilitation treatments'?
     
    Mij, Mar 31, 2022
    #149
    MEMarge, Ariel, alktipping and 4 others like this.
  10. Sean

    Sean Moderator Staff Member

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    Sean, Apr 1, 2022
    #150
    nick2155, MEMarge, Snow Leopard and 6 others like this.
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Apr 1, 2022
    #151
    nick2155, MEMarge, Hutan and 3 others like this.
  12. mango

    mango Senior Member (Voting Rights)

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    Today in the journal of the Swedish Medical Association:

    Ny rapport om postcovidvården: Många upplever sig misstrodda
    https://lakartidningen.se/aktuellt/...ostcovidvarden-manga-upplever-sig-misstrodda/
     
    mango, Apr 1, 2022
    #152
    Hutan, Lilas, Ariel and 3 others like this.
  13. Andy

    Andy Committee Member

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    Andy, Apr 1, 2022
    #153
    nick2155, MEMarge, Hutan and 9 others like this.
  14. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Failure to consider long Covid impact will hit UK economy, says expert (Guardian, 31/3/22).

    Article also includes comments from Clare Gerada and Chris Whitty:

     
    SNT Gatchaman, Apr 2, 2022
    #154
    nick2155, alktipping, ahimsa and 6 others like this.
  15. Sean

    Sean Moderator Staff Member

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    mumble mumble :grumpy:

    :speechless:
     
    Sean, Apr 2, 2022
    #155
    alktipping, livinglighter, NelliePledge and 8 others like this.
  16. Hutan

    Hutan Moderator Staff Member

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    Hutan, Apr 2, 2022
    #156
    alktipping and Kalliope like this.
  17. mango

    mango Senior Member (Voting Rights)

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    Paywalled long read article in Swedish newspaper DN.

    Anna Voltaire fick postcovid: ”Jag blev 90 år över en natt”
    https://www.dn.se/vetenskap/anna-voltaire-fick-postcovid-jag-blev-90-ar-over-en-natt/

    ME is not mentioned in the main body of the article. However, at the very end there's this:
     
    mango, Apr 2, 2022
    #157
    Snowdrop, Wonko, Ariel and 4 others like this.
  18. Andy

    Andy Committee Member

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    Andy, Apr 2, 2022
    #158
    nick2155, NelliePledge, ahimsa and 5 others like this.
  19. Trish

    Trish Moderator Staff Member

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    The following has been passed on by a member with details of the event referred to in the quotes:

    The Science of COVID | Royal Society (30-31 March 2022)

    https://royalsociety.org/science-events-and-lectures/2022/03/tof-covid/
    The Science of COVID | Royal Society (30-31 March)

    https://royalsociety.org/science-events-and-lectures/2022/03/tof-covid/

    1 talk on 'Long Covid':

    Long Covid: A long lasting legacy of the pandemic?
    Dr Nathalie MacDermott, King’s College London

    (Clinical lecturer in paediatrics, paediatric infectious diseases and Immunology and bone marrow transplant )

    Program PDF here:

    https://royalsociety.org/-/media/ev...a=en-GB&hash=D7590FE9FD1F76B4ABA69C27C1E1CC59

    From biography / Abstract:

    Dr Nathalie MacDermott, King’s College London

    Biography: Dr MacDermott is an academic clinical lecturer at King’s College London funded by the NIHR. She works clinically as a paediatric infectious diseases doctor, but her research background is in epidemic and pandemic diseases. Her PhD, awarded by Imperial College London, investigated genetic susceptibility to outcome from Ebola virus disease in Sierra Leone [....] including post-Ebola conditions in Ebola survivors.

    She is currently investigating post COVID-19 problems (‘Long Covid’) in children utilising multidisciplinary clinical assessment, magnetic resonance imaging, immune phenotyping and, in the longer term, genetic analysis to understand the different phenotypes and pathogeneses of the varied presentations of this condition. Dr MacDermott also suffers from a Post COVID condition following becoming infected while working on the front line.


    Abstract:
    Long Covid: A long lasting legacy of the pandemic?

    Long COVID covers a multitude of persistent symptoms and conditions which follow on from acute COVID-19, whether severe or mild. The most recent report from the Office for National Statistics (ONS) estimates that 1.5 million people (2.4% of the UK population) were experiencing self-reported long COVID as of 31st January 20221, of which 45% had symptoms for longer than a year. The middle-aged adult population is most affected, particularly females.

    Reports from employers suggest a quarter put long COVID in the top three reasons for long term sickness absence. Similarly, there has been a 20% increase in applications for Personal Independence Payments in the last year. Long COVID affects approximately 2% of children and young people following acute COVID19, impactingtheir education, future earning potential and resulting in parental work absence. The economic impact of long-term sickness among the UK working population due to long COVID remains unclear but is likely substantial.

    Why has long COVID not been considered when deciding public health measures to mitigate spread of SARS-COV2? The long-term morbidity and disability of the UK population must be given due consideration, it will be a long-lasting legacy of the pandemic.

    But there's also:

    Lessons learned from the Pandemic for science communications in an
    emergency
    Fiona Fox OBE, Science Media Centre

    (abstract see progam link above)
     
    Trish, Apr 2, 2022
    #159
    Wits_End, MSEsperanza, alktipping and 7 others like this.
  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Montreal Gazette The link between long COVID and a medical mystery

    quotes:

    Once known as chronic fatigue syndrome, myalgic encephalomyelitis (ME/CFS) has long been poorly understood, overlooked and often stigmatized.

    Now, early research suggests, up to half of all COVID long-haulers could meet the criteria for an ME/CFS diagnosis. And as experts probe the link between the two illnesses — and COVID-19 cases continue to accumulate — ME/CFS patients new and old are urging people to recognize how debilitating and life-altering it can be.

    ...

    As early as the fall of 2020, the AQEM tried to raise the alarm about a possible link between long COVID and ME/CFS. In interviews, they warned people about the risks and pushed the government to prepare for the influx of ME/CFS patients they saw coming.

    But they feel their calls went ignored, compounding years of frustrations.

    For decades, Prud’homme said, people with ME/CFS in Quebec have felt neglected by the system, with little access to services or compassionate care, in large part due to health professionals not understanding the illness.

    ...


    Even in the most conservative of estimates, he believes the pandemic will lead to the number of people with ME/CFS in Quebec — estimated to be more than 70,000 at the moment — nearly doubling in size.

    “We weren’t equipped before the pandemic to take care of people with ME/CFS,” Moreau said. “So imagine now.”

    Simon Décary, a researcher at the Université de Sherbrooke, expressed similar concerns. He describes long COVID as an umbrella diagnosis with clusters of different diagnoses that fall under it, including ME/CFS.

    “We know there is a link, because we have the evidence of the overlap of the clinical symptoms,” Décary said. “But is it exactly the same biological process? That we don’t know yet.”
     
    Kalliope, Apr 2, 2022
    #160
    DokaGirl, cfsandmore, Dakota15 and 16 others like this.
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