Long COVID: a clinical update Trisha Greenhalgh; Manoj Sivan; Alice Perlowski; Janko Ž Nikolich Post-COVID-19 condition (also known as long COVID) is generally defined as symptoms persisting for 3 months or more after acute COVID-19. Long COVID can affect multiple organ systems and lead to severe and protracted impairment of function as a result of organ damage. The burden of this disease, both on the individual and on health systems and national economies, is high. In this interdisciplinary Review, with a coauthor with lived experience of severe long COVID, we sought to bring together multiple streams of literature on the epidemiology, pathophysiology (including the hypothesised mechanisms of organ damage), lived experience and clinical manifestations, and clinical investigation and management of long COVID. Although current approaches to long COVID care are largely symptomatic and supportive, recent advances in clinical phenotyping, deep molecular profiling, and biomarker identification might herald a more mechanism-informed and personally tailored approach to clinical care. We also cover the organisation of services for long COVID, approaches to preventing long COVID, and suggestions for future research. Link | PDF (The Lancet)
On the Independent SAGE Substack TG summarises the paper in lay terms: Long COVID – a dystopian game of pinball
How unsurprising, a publication on Long Covid that has Greenhalgh as one of the authors and that barely mentions ME/CFS, especially as it is subtitled 'a clinical update'.
From the substack article: Always that great confidence that 'rehabilitation can help some patients'. Maybe it does, if it gets them to slow down and apply pacing instead of trying to push through, but equally, maybe it's rest, time, and the ability to get time off work and suitable help and support to actually enable pacing and rest that's key, not the rehab programs.
This is not the correct interpretation, there is no reason to think that it works in some and not others, not when natural remissions and recoveries are this common, which is well-documented. What this says is that any form of rehabilitation is useless here, that convalescence is more conducive to recovery, but it offers no guarantee. Health care resources are scarce. It's maddening seeing this profession maintain its fanatical obsession with wasting resources on things that don't work simply because their egos can't handle having been wrong about it, having been told for decades how none of this holds up to scrutiny. I wonder if Greenhalgh is aware that the term PESE was first used in the NICE guideline that has been rejected by the UK medical community. Probably not. I don't think she has said anything about it. For a profession where attention to details is important, they really struggle to pay attention to the most basic details at times, seem to only look for things that will be on the exam.
Even more notable though is that this only confirms all the early research and reports from hundreds of thousands of patients. Medicine has been in a holding pattern, refusing to act on it, but it was always correct. This says nothing more than the very first paper published by the Body Politic community. It's about 99% the same information that we knew by about mid-summer 2020, which has been confirmed again and again since then. Including by NASEM, whose report has not lead to any reaction or change. This should be interpreted the same way as thoroughly documented warnings about an imminent disaster, say a bridge collapse or something like it, or the accidental bombing of a city from massive and obvious failures in a chain of command. The complete lack of accountability in medicine is obviously not conducive to good outcomes, but hardly anyone seems to find problem with it. It's so absurd.
Greenhalgh seems to have lost the plot completely. If people have prolonged symptoms from organ damage that is just what we have seen with organ damage for decades - whatever cause - and so the name Long COVID is valueless. The value of LC is in describing those with prolonged symptoms and NO ORGAN DAMAGE. Since the majority of these people improve over a 2 year period they obviously do not have organ damage as a cause. Maybe they bought a Chatbot to write papers and it hasn't quite got the software it requires.
I agree with the point about excluding the LC group with relatively well understood (or at least demonstrable and accepted) organ diseases, eg fibrosing interstitial lung disease. These have existing research programmes. (For the others who meet the criteria, perhaps the term "ME/CFS" might be worth adopting and funding research into it, appropriate to the large number newly and already affected...) But I don't fully agree with "The value of LC is in describing those with prolonged symptoms and NO ORGAN DAMAGE. Since the majority of these people improve over a 2 year period they obviously do not have organ damage as a cause." We don't know there's no organ damage, or that it would be necessarily irreversible if present.
It also starts running into issues with how an organ is defined. For example, is the extra-cellular matrix an organ? The amorphous component of it another separate organ or sub-organ? What is the difference between an organ and a system?
Breathing Pattern Disorder. Incase anyone is unclear, in the NHS that means, you fools forgot how to breathe. Please ask for help, early intervention is key, a member of our HCP team is ready and waiting to patronise the breath right back in to your behaviourally challenged internal chest zone.
I would love to know whether Prof Greenhalgh avoids crowded indoor spaces and wears a well-fitting mask when she can't avoid them. I mean I would genuinely be interested to know. There's such a lot of do-as-I-say-not-as-I-do among the scientific community about Covid precautions.
I avoid crowds because I can’t get out of my bed thanks in large part to LC. Most people can’t avoid them. Not if they’re not already so sick they can’t work. Most people’s work involves lots of other people they work with or for. So not helpful advice. Lobby the government to have regulations on ventilation and air filtration in every workplace and every public space, trains buses everywhere. Every leisure venue and everywhere else people work or visit. People are forced to expose themselves at school colleges and work. So they won’t avoid the spaces of leisure. If the pandemic is over as they are told, they won’t avoid seeing their favourite artists perform and squeezing some enjoyment out of this miserable existence. So this isn’t good advice to land in the real life conditions in which people live. I live in a flat I can’t avoid the unventilated space outside my front door, not if I leave, not if I breathe. I block the cracks around the door to some degree but…This advice as usual is for a middle class professional already established in the career and not obliged to mingle to much or to get to every conference, someone with a top speed internet connection who mostly works from home and doesn’t live too close the other people. The advice wear a well fitting mask, well I do. But since one way masking in a miasma of Covid doesn’t offer the best protection, there are still your eyes unless googled up which she doesn’t suggest, and the seal on your mask can go any time and you simply have to remove it for certain medical and dental purposes, and almost no one else does wear a mask we don’t have the two way masking that is necessary, not in hospital not anywhere. I keep catching Covid and other chest infections from my caregivers and visits to hospital. So yeah of course wear a FFP2/3 if you possibly can. It will help. But the advice still is bad, given people are not provided masks by employers and they are actually banned from doing so by many employers who feel reminders of the threat of infections are bad for businesses where as actual sickness is fine. Also masks worn regularly are expensive, most people are struggling. Ask for respirator provision by employers. Ask for free respirator provision by government. Ask for subsidies and contracts to make maskin affordable. Fund the development of more comfortable reusable respirators. About three people in our whole country can get antivirals outside of hospital admissions. You can’t get a hospital admission even if you’re dying because our healthcare system is asset stripped to the bone. No beds no staff. The that ask your GP advice is worthless since they will have been advised to ration anti virals. I think everyone who can should lobby for anti viral access to be expanded. I don’t think we should pretend it’s an option for most acutely and chronically ill people. Rest up? Are you serious? Have they completely ignored the stripping of workers sick pay provision as meagre as that already was. I mean look at Royal Mail, you can’t go sick. Again this advice is for middle class homeworkers and high status employees. Or the odd worker in a Cooperative or with an unusually decent employer. It’s just not a thing , for most people. The kids are in school sick. So parents don’t get sanctioned for excessive absences. So they can keep their jobs and not become next out of work casualties of the punishing government and DWP regime. It’s mandatory for lower income people to just spread Covid about. I feel like it’s so cowardly for this researchers to put out advice that would be in applicable to most people instead of using their knowledge and privileges to fight for the people to not be put in the position of falling into further poverty or total isolation with no support or services or daily risk their own and their families lives and livelihoods. People are still dying and suffering debilitation. Little children too.