The growing crisis of long sepsis (Daily Mail)

Discussion in ''Conditions related to ME/CFS' news and research' started by Sarah, Jul 9, 2024.

  1. Sarah

    Sarah Senior Member (Voting Rights)

    Messages:
    1,495
    The growing crisis of long sepsis. It leaves sufferers with fatigue and brain fog - so when will the NHS start treating it properly?

    By Lucy Elkins 11:56, 09 Jul 2024, updated 13:09, 09 Jul 2024
    https://www.dailymail.co.uk/health/...anging-effects-NHS-tackle-growing-crisis.html
     
    EzzieD, ukxmrv, Sean and 12 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    14,087
    Location:
    London, UK
    Except that people with Long Covid don't get 'the help they need' because there isn't any beyond advice on not trying to push through.

    The 100 clinics are presumably sending people off for GET and CBT - the post-sepsis patients are probably lucky!
     
    EzzieD, ukxmrv, Milo and 22 others like this.
  3. Eleanor

    Eleanor Senior Member (Voting Rights)

    Messages:
    142
    I'll speak up for my local LC clinic, which hasn't tried any GET/CBT nonsense on me at all. But yes, 'get the help they need' is the wishfullest of wishful thinking. The most practical help they've given me - and it's no small thing - has been supporting me for ESA and PIP.
     
    Lilas, EzzieD, MeSci and 18 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,398
    Location:
    Norway
    A Norwegian study from last year showed that nearly 4 of 10 people who were hospitalised with sepsis had not returned to work after 2 years.

    ETA: Sorry, relied on memory which is never a good idea.. I wrote that they never returned to work, but the study said they had not returned to work two years after the sepsis. Have corrected.
     
    MeSci, Sean, Nightsong and 16 others like this.
  5. Sid

    Sid Senior Member (Voting Rights)

    Messages:
    1,109
    Not surprising. There was a study floating around twitter recently on 20-year follow-up after Long SARS. Out of 50 patients in that study, no one had returned to their premorbid level of activity.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9914492/
     
    Sarah, Kalliope, Milo and 9 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,001
    Location:
    Canada
    The evidence for this illness category is absurdly excessive, and it's still complete taboo and denied. It's probably the most thoroughly documented all-out-in-the-open scandal, and it may as well be known by a handful of people. Even with Long Covid I keep seeing people in the health care industry who try to get even just basic awareness done and get completely shut down, their career on the line if they keep pushing. And it seems that the longer this goes the harder it will be to change, evidence is literally reinforcing hardline positions. Exactly like with people who fell down conspiracy theory holes. They just go deeper down the hole.

    Is there even anything comparable to this? Of professionals, of almost an entire profession, being the main purveyors of disinformation and pseudoscience? Being so dogmatically incapable of accepting basic facts? I am really not aware of anything anywhere close to this. Corporate interests, influential people, organizational dictates doing this, silencing experts, sure, common. But the experts themselves? A complete oddity, to the point where psychosomatic ideology is basically a top 10 most harmful ideology in history, and I know the implications of what I'm saying.

    Although, LMAO:
    Some resources, nothing to show for it. Oddly enough, the resources have to be both adequate and well spent. But instead we get pseudoscientific garbage and, surprise, that never works. Most of it literally counts against, like spending money on HIV denial and calling it AIDS funding.
     
    Missense, Sarah, Eleanor and 15 others like this.
  7. Sid

    Sid Senior Member (Voting Rights)

    Messages:
    1,109
    No resources are better than some resources in this situation IMO. The "long sepsis clinics" would just be handing out the same harmful rehabilitation advice that they give us and LC people.
     
    Missense, Sarah, rvallee and 9 others like this.
  8. Sean

    Sean Moderator Staff Member

    Messages:
    7,605
    Location:
    Australia
    That was my first reaction.
    There simply is no excuse anymore for anybody, let alone health experts, to deny there is an extremely serious problem with the general phenomenon of post-infectious complications, and the way they have been so persistently ignored and/or mistreated by the medical profession.

    The lost opportunity costs from all this, not least of all for patients lives, is astronomical, and getting worse due to society being so unprepared for it and having to play catch-up.
     
    Missense, Sarah, Sid and 8 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    14,087
    Location:
    London, UK
    I think there is a risk of oversimplifying the situation, as has been clear for post Covid illness. ME/CFS type illness may well occur after sepsis but I suspect that most people who cannot work after sepsis, like a small but not insignificant number after hospitalisation for Covid, have major organ damage. So their problem has nothing to do with 'Long Covid or ME/CFS. Sepsis can leave you with 15% of normal kidney function, or 40% of normal lung function, both of which are likely to make it pretty hard to do much. You may lose limbs that needed amputating. You may be paralysed from the effects of brain abscess. And maybe as relevant as any of that is that at least 50% of people who develop sepsis have an underlying condition like diabetes or chronic leukaemia that means they are never going to be very healthy from that point on.

    But of course the real point is that we don't have anything in the way of treatment in either case so calling for fair numbers of clinics is just silly.

    Maybe another thing that is relevant, though, is that 40 years ago anyone ill enough to be admitted to hospital who was still unwell was likely to continue on outpatient follow-up in the UK system. Now they are discharged back to the GP because follow-up is not a recognised care requirement and not budgeted for. Even the kidney failure patients who need regular review may now not get care.
     
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,001
    Location:
    Canada
    Yeah the only people who would be "helped" by this are whatever low-grade clinicians get funded for doing useless work they could, and should, do in their sleep. It's a massive step backward, but things are so dysfunctional that it barely makes a difference. The one thing about total failure is you can't really fail worse, only longer.
     
    Missense, Sid and Peter Trewhitt like this.

Share This Page