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Medscape: 3 Years Into Long COVID: Where Do We Go From Here? (by Lisa McCorkell, Patient-Led Research Collaborative)

Discussion in 'Long Covid news' started by ahimsa, Jul 1, 2023.

  1. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Oregon, USA
    3 Years Into Long COVID: Where Do We Go From Here?

    https://www.medscape.com/viewarticle/993827

    "... approximately 6% of all US adults are currently experiencing long COVID, with Hispanic/Latinx individuals, transgender individuals, and cis female individuals facing the highest rates."

    (source = https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm )

    Hard to choose just one pull quote from this commentary but here's a short section that mentions ME/CFS.
     
    Sean, alktipping, Michelle and 2 others like this.
  2. EndME

    EndME Senior Member (Voting Rights)

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    Is the statement "our community is unfortunately growing larger and larger as the days pass." backed by data? The last data I saw, which is very hard to come across and definitely not too acurate, was that the number of Long-Covid patients had roughly stabilised with the number of recovering patients roughly being of the same order of magnitude of the new patients.
     
    Last edited: Jul 1, 2023
    obeat, Sean, alktipping and 2 others like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    I would imagine that the numbers are difficult to pin down for different reasons. some people may be experiencing remissions rather than completely recovering which of course nobody would be able to distinguish until the remission ends. People with LC/ their medics may not be considering that absence of symptoms doesn’t necessarily mean full recovery. And then there’s the impact of repeat infections.

    There’s also the issue of people having symptoms that go undiagnosed for months, or misdiagnosed as depression/anxiety. So if they subsequently get diagnosed they add to the numbers.

    As we keep saying here not enough is known in terms of research about the trajectory of ME/ numbers so difficult for LC to learn much from that
     
    Last edited: Jul 1, 2023
    obeat, Sean, alktipping and 2 others like this.
  4. EndME

    EndME Senior Member (Voting Rights)

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    I agree there are multiple difficulties and any assessement is hard and becoming increasingly harder to do in the future. However, that doesn't mean we should make up numbers. The numbers are significant enough already, they are gigantic! But the data I've seen, perhaps I've looked at the wrong data, doesn't suggest a big increase in the total people with Long-Covid, but rather a rough stabilisation https://github.com/bjornpiltz/ONS_LC. There's also a Twitter thread on the analysis of this data, but Twitter once again seems to be down.

    I'm also not suggesting that Lisa McCorkell is making up numbers, she's a great advocate with a lot of knowledge and access to data and the point of a news report is also always to create urgency.
     
    Last edited: Jul 1, 2023
  5. RedFox

    RedFox Senior Member (Voting Rights)

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    Well, those graphs are pretty scary. The number of pwLC with no activity limitations peaked and is going down, while the number with severe limitations has leveled out or it still increasing.
     
    Sean, alktipping, V.R.T. and 4 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    13,309
    Location:
    UK West Midlands
    I thought the severe one looked to be still increasing somewhat. unsurprising if people are getting wrong advice about pushing limits.
     
    Sean, RedFox, Trish and 1 other person like this.
  7. EndME

    EndME Senior Member (Voting Rights)

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    875
    There were some decent visualisation of the data. Unfortunately, with Twitter down I can't find it.

    At the end of the day it is the order of magnitude that is deceicive. Whether the numbers are still slightly increasing or have stabilised is not too decisive if one sees how significant they already are! The statistics of many other diseases pale in comparison to what is seen here. Other data suggests the same. The same has been the case for ME/CFS for decades. So apparently it's not the numbers that count. If the numbers were to double within a day, would anything change? Perhaps I'm being a bit too pessimistic and really good data would result in more action. I really don't know.
     
    Sean, alktipping and Trish like this.

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