The Times: Infectious diseases expert warns of spike in ME cases

Discussion in 'General ME/CFS news' started by lunarainbows, Jun 25, 2020.

  1. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    The NHS is facing a “post-viral tsunami” with thousands of people struggling to recover from Covid-19 and experiencing symptoms of the debilitating condition ME, a leading medical researcher said yesterday.

    Paul Garner, an expert in infectious diseases at the Liverpool School of Tropical Medicine, said he remained exhausted and lacking energy 14 weeks after having had the virus.

    Professor Garner said he is “unable to be out of bed for more than three hours at a stretch, my arms and legs are permanently fizzing as if injected with Szechuan peppercorns, I have ringing in the ears, intermittent brain fog, palpitations and dramatic mood swings”.

    Charities are predicting a sharp increase in new cases of myalgic encephalomyelitis (ME)or chronic fatigue syndrome as a result of...

    (paywall)

    https://www.thetimes.co.uk/edition/...s-expert-warns-of-spike-in-me-cases-307pfbjlg
     
  2. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    ahimsa, alktipping, Wits_End and 17 others like this.
  3. Squeezy

    Squeezy Senior Member (Voting Rights)

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    Terrific, thank you @lunarainbows

    I'm having one of those days where I'm gaslighting myself about my health - couldn't have read this at a better moment. :hug:
     
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  4. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Aaw Big hugs Squeezy :hug:
    you’re not alone, :( I think many of us end up doing that, so deep is our trauma and the gaslighting having been done to us.
     
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  5. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    There is someone in the comments of the article, that says a colleague has been referred to “post Covid clinics” that have been set up in London.

    Anyone know any more? Very worried this is GET & CBT...
     
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  6. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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  8. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I just skimmed it and noticed IAPT for psychological help/anxiety. But in general there seems to be a lack of anything relating to “post viral fatigue”, or ME-like symptoms, which seems odd. So I wonder then if these people will be sent onto the usual CFS clinics after these post Covid clinics, if their symptoms don’t improve.
     
  9. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Retired doc says this...

    upload_2020-6-25_8-38-21.jpeg

    I don’t agree with what they say, too tired to articulate more (woke up at 5.30am).
     
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  10. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    He isn't technically wrong. We don't know if they are the same or not.

    That doesn't mean it's not sensible to treat what looks like ME/CFS as such.

    Not that there's much in the way of treatment, but at least treating it as ME/CFS means knowing there's no guarantee people will ever recover and that GET can make things worse and that patients need to be protected from inappropriate psychiatric diagnoses and disbelief. Of course what many docs are going to do is the complete opposite of this because of the BPS bullshit.
     
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  11. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I agree @strategist

    Reading some of the other comments on that article (not the ones I’ve pointed out here), I’m reminded once again why I try not to read comments underneath articles. A lot of very ignorant people including “have you thought maybe it’s your lifestyle choices” that make you ill, “this is scaremongering“, etc...
     
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  12. Trish

    Trish Moderator Staff Member

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    This document says it is specifically for patients who have spent time in critical care in hospital. It seems to focus on those who had pneumonia and were on ventilators.

    There's no mention I can see of those who are getting post viral symptoms who have not been sick enough with Covid-19 to be hospitalised.

    The section on fatigue:
    It might be worth taking a close look at the Occupational Therapists document, and the MS society fatigue management courses, @PhysiosforME.
     
  13. Sasha

    Sasha Senior Member (Voting Rights)

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    What can be done by us, in terms of public statements and contacting the relevant professional bodies, to protect these post-Covid patients against GET, @Jonathan Edwards, @PhysiosforME?

    While the NICE guidelines are being reviewed and GET is under (hopefully unfavourable) review, it seems madness to ruin the health of another cohort of patients by using it.

    What can we do to protect these patients?
     
  14. Sasha

    Sasha Senior Member (Voting Rights)

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    I'd suggest posting a link to that video interview with Dr Nina Muirhead. I think that will kill that sort of argument stone dead.
     
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  15. Leila

    Leila Senior Member (Voting Rights)

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    I have a question, please feel free to move it if this isn't the right thread:

    Is there any proof/data on people actually really having anxiety after an infection, therefore deconditioning and developing something that for the uneducated eye looks like ME? (or rather chronic fatigue)

    What I mean by that: Where/how has the idea on this been born? Are there cases where a psychosomatic approach maybe is reasonable/adequate?

    I know e.g. when people have pain from a herniated disc they often go into a protective posture, stop moving around much and therefore develop more pain. From what I understand in cases like these it makes sense to encourage the patient to "go against their instinct" and "ignore" that their symptoms might get worse first before they get better.

    So I'm wondering if that could be the case in some post viral patients, too. I just don't understand how else they have come up with this idea to push them physically to go beyond their limits if there had never ever been cases where it has been successful.

    Hope I make sense..
     
  16. Sasha

    Sasha Senior Member (Voting Rights)

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    Can anyone able to post please post a link to DecodeME and ask patients to sign up and everyone else to tell every patient they know about the study?

    I'm not a subscriber and am not being given the option to post.

    This needs to be our message over and over in the comments section of every online article that we see now.
     
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  17. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    The idea was born in 1989 in a paper by Wessely and Chalder (before any studies had been done). They just made it up on the spot. Afterwards they acted as if it had been confirmed but as far as I'm concerned it has never been shown that this explanation is accurate for any patients.
     
    Last edited: Jun 25, 2020
  18. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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  19. Trish

    Trish Moderator Staff Member

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  20. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    As @strategist says a couple of people pretty much just decided that might be the case and then set about building their careers doing their darnedest to prove themselves right.

    They've maintained these abnormal illness beliefs by sneakily redefining other people's definitions of the disease so as to include as many patients who do not have the disease as possible and who, like most people, benefit from exercise.

    The establishment has colluded by rating "evidence" by who presents it rather than what is actually presented. Eminence based evidence as Prof Hughes so neatly put it.
     

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