The growing crisis of long sepsis (Daily Mail)

Sarah

Senior Member (Voting Rights)
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
Four days before her collapse, 'superfit' Katie, who had been teaching 13 fitness classes a week, visited her GP with 'shivering, bad muscle aches and just a general feeling of being unwell'. 'The GP told me to go home and drink Lucozade,' she says and, reassured, she did. It's advice she wishes she'd ignored.

Not only as she might then have avoided spending three months in hospital, but also because Katie, like thousands of others in the UK, still suffers life-changing after-effects — known as post-sepsis syndrome — seven years on.

The syndrome causes long-term effects that can be physical (from profound fatigue and joint or muscle pain, to hair and tooth loss); to cognitive (such as brain fog and memory problems); and psychological (with sleeping problems, flashbacks and nightmares not uncommon).

'Physically and mentally, I am a changed person,' she says. 'I used to be constantly on the go. I was the life of the party and would sign up for any charity triathlon going. 'Holidays involved skiing or coasteering. Now all that has stopped. All I can do is walk, at a slow, frustrating pace for everyone else.' She also lives with permanent fatigue and bad brain fog.

Indeed, a review published in the Infection and Drug Resistance journal last year highlighted 'many similarities' between the symptoms of post-sepsis syndrome and long Covid. It said: 'This raises the question whether these should be considered separate entities, or whether they represent the same condition.'

But whereas there are more than 100 clinics designated to treat long Covid patients in England, which are staffed by occupational health therapists, physiotherapists and specialist nurses, no such service exists for those with post-sepsis syndrome.

Dr Ron Daniels [intensive care consultant at University Hospitals Birmingham NHS Trust and CEO of The UK Sepsis Trust] says [...] 'We have seen a lot of resources devoted to people who survived Covid but developed long-term problems. But not for those who survive sepsis. It seems an injustice that those who survive one bug get the help they need, but those who survive another don't.'

Ideally, there would be similar clinics providing different services for those with post-sepsis syndrome, he adds.
 
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!

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.
 
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.
 
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.

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.

It should be noted that all the Long SARS patients in my experience were ‘severe’, as all our patients were very sick, hospitalized and many went through the ICU.

I will point out that clinically none of our 50 patients got their old life back with time and treatment. Some were never able to return to work. Some had a trial of return to work and failed. Some had a trial of return to modified work, which then failed. Some had seniority to move to an easier position at work, which then failed. Some returned to being able to look after themselves completely, but could not return to work or sports. Some needed ongoing help (usually family) to do their daily activities. Some persisted in doing their daily activities, but slowly and intermittently, with frequent rests and dropping out of all non-essential activities. Not one reported that they were fully recovered and back to all their pre-SARS activities.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9914492/
 
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:
We have seen a lot of resources devoted to people who survived Covid but developed long-term problems
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.
 
The 100 clinics are presumably sending people off for GET and CBT - the post-sepsis patients are probably lucky!
That was my first reaction.
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/
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.
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.
 
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.

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.
 
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.
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.
 
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