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Long covid—an update for primary care, the BMJ, 2022, Trisha Greenhalgh

Discussion in 'Long Covid news' started by Cheshire, Sep 22, 2022.

  1. Cheshire

    Cheshire Moderator Staff Member

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    4,675
    https://www.bmj.com/content/378/bmj-2022-072117

     
    ahimsa, Hutan, livinglighter and 3 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That is a very long winded way of saying we have no idea but I am not going to say that because it might make us look stupid.

    With the result the it looks about as stupid as it could.

    Why would one refer someone to a pharmacist or 'advanced clinical practitioner' whatever that might be?
     
    ahimsa, Hutan, FMMM1 and 16 others like this.
  3. Kitty

    Kitty Senior Member (Voting Rights)

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    Maybe because they're not GPs?

    Preferably, refer them to someone you wouldn't even find near a GP practice. The mountain rescue service would be ideal, they have those nice dogs. Or the Cones Hotline.
     
    ahimsa, Hutan, Moosie and 9 others like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I looked up advanced clinical practitioner. As I suspected it is a fake doctor with a master's degree in pretending to be important.

    Advanced clinical practice (ACP) is a defined level of practice within clinical professions such as nursing, pharmacy, paramedics and occupational therapy. This level of practice is designed to transform and modernise pathways of care, enabling the safe and effective sharing of skills across traditional professional boundaries.
     
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  5. Charles B.

    Charles B. Senior Member (Voting Rights)

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    This description of ACP may be the most discursive, meaningless combination of terms ever assembled. I'm certain these transformative practitioners wil get us moving far more efficiently and decisively in the Long Covid realm.
     
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    What a mess. First, this is definitely an improvement on the August 2020 paper, which was awful, but it's not even up-to-date with August 2020, so I don't know why this needed to be published. All the relevant advice in this document is exactly what we have been saying for decades, the patient community is behind all of the good advice, but it doesn't actually credit that.

    This paper basically sums up that the medical profession has learned nothing useful so far. Because all the useful things in it existed prior to and were put together by amateurs. Without really saying so. It basically amounts to: suck it up, we got nothing. As if patients were not already "self-managing", the same way people living in poverty "manage" living in poverty by... enduring poverty. So much for professional help.

    The only relevant and useful advice in it is not substantial and essentially amounts to pacing to avoid PEM/PESE. Without giving any details about either. It does not link to the NICE ME guidelines, from which the very term comes from, yet advises pretty much the same things. The same things that the UK medical system is currently fighting against, on which Greenhalgh is still on the wrong side. So it basically gives advice that is rejected but without naming the source of the advice, which is basically lose-lose.

    What it advises to GPs is basically aspirational and essentially amounts to a reversal of current advice generally used for chronically ill patients. Most of it is pure fantasy, GPs will not do those things unless they are instructed to in a formal process, a process which is being held more or less hostage with the rejection of reality and substituting their own over what mostly amounts to rejecting the very existence of PEM/PESE.

    DeLaney has been pretty good but I think his insistence to work with Greenhalgh is doing far more harm than good, it simply amounts to nothing. Overall this document is less substantial and informative than most of the amateur-produced content from the patient community, whether from us or long hauler communities. Much of which already existed in August 2020, so this is basically an update on an August 2020 document that still isn't even up-to-date with the state of knowledge in August 2020. A state of knowledge that thousands of long haulers with no medical training managed to integrate and contextualize in a matter of weeks because it's just that obvious.

    In the end this is mostly appropriation of patient advice that whitewashes its source. And it contains no actual professional advice or knowledge. And is still less substantial and informed than most of the amateur content.
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Also I don't know how this paper can recognize that there are no treatments for LC while CBT and GET are valid treatments for ME on the same basis of PEM/PESE. It just generically speaks of rehabilitation as a promising thing that needs to be researched all over again, which has already proven to be useless, despite the current standard of care being this mythical psychological rehabilitation. So it still mostly ignores current reality, the decades of history, the controversy over useless treatments based on invalid definitions, while essentially putting out the idea as something to be tried all over again.

    It advises vaccines as possible treatments, which is just wrong. It helps some, but it harms many and this is not recognized. Just a generic "discuss this with your GP", as if they know enough to make informed decisions.

    And this part is just absurd. It literally redefines being recovered as not being recovered:
    This is literally not recovery. In otherwise healthy young adults recovery means back to pre-illness health and function. Anything less is not recovery. This here explicitly defines recovery as not recovery. Jumped the shark here unless there is a recognition that this is a long-term disability, and it explicitly isn't.

    Even the references are poor. Ugh.
     
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  8. wastwater

    wastwater Senior Member (Voting Rights)

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    We often joke that I’d rather see the lady in the chip shop for my medical care or the GP meaning Guinea pig because they have healing properties
     
    Hutan, Lou B Lou, Colette and 4 others like this.
  9. Sean

    Sean Moderator Staff Member

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    holistic care

    “recovery” currently means developing the ability to manage limited energy, continuing pain, cognitive limitations, and ongoing flare ups in what has become a long term condition.
    I don't think those words mean what the guidance thinks they mean.
     
    Laurie P, ahimsa, bobbler and 14 others like this.
  10. dratalanta

    dratalanta Established Member (Voting Rights)

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    “recovery” currently means developing the ability to manage limited energy, continuing pain, cognitive limitations, and ongoing flare ups in what has become a long term condition.

    "Recovery" here means "no longer bothering the NHS". It's redefining disease in terms of the effect on doctors. Anything which causes the patient to no longer make practical and emotional demands on the doctor is "recovery".

    It's the most irrational, solipsistic, hierarchical, cynical and inhumane understanding of health one could imagine. But its proponents pass it off as holistic and compassionate.

    I'm bedbound, not working, and require two carers. I'm exhausted, in constant pain, and can barely string a sentence together. But I haven't been to my GP in ten years, don't get any social care, and don't get any benefits. I have 'developed the ability to manage' - meaning I'm fortunate enough to have family who are willing and able to care for me, because if I were on my own I'd be dead. Congratulations to me - I'm recovered.

    Long Covid patients, being more numerous than us and having been well organised right from the off, may be less tolerant of these nonsense word games than the post-truth brigade expect.
     
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  11. RedFox

    RedFox Senior Member (Voting Rights)

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    Obviously, recovery should be defined as a return to previous health. My main concern with redefining recovery as symptoms being adequately managed is that it could discourage biomedical research by giving people the impression that managing symptoms is good enough. However, I consider this unlikely if knowledge of ME keeps spreading. It's clear that ME symptoms are very difficult to manage, and that most people who pace carefully still experience severe disability. Biomedical researchers and doctors understand we desperately need treatments to be invented.
     
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  12. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    Management of ME is basically "stop living and just exist". Unable to work, see anything, do anything etc etc its hardly any form of life. If they are going to just define recovery as not bothering the NHS then we may as well just start an assisted death program instead, that would also result in a full and complete "recovery" for everyone that used it. The NHS clearly needs deep and lasting changes because not bothering the NHS is a failure in care not a recovery.
     
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  13. RedFox

    RedFox Senior Member (Voting Rights)

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    That's what I'm saying. The absolute best-case scenario is good pacing, where you rarely experience PEM but must continually refuse activities to stay out of PEM. That's so hard because the human urge to do things is so strong. Even in the best case, it's not really living.

    I'm not sure where this is stated in the BMJ article. Nor do I have any experience with the NHS as I'm American. But I can affirm that I hear about this happening to British pwME. Someone asks their doctor to help, for example, they get referred to a fatigue clinic, they get useless therapies for a while, then they get discharged--not because they get better, but because the clinicians throw up their hands. It's a travesty.
     
  14. Adrian

    Adrian Administrator Staff Member

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    It is also misinforming patients. If a doctor talks about recovery the natural thing for patients to expect is that it means they will get better. Thus it creates false expectations (and then blame when recovery doesn't happen).

    On an economic level it also presents issues in terms of if recovery is talked about the whole issue around long covid will be swept away and high infection rates will be tolerated.
     
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  15. livinglighter

    livinglighter Senior Member (Voting Rights)

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    'Recovery' means tolerance of debilitating symptoms and deteriorating health.

    It's not right at all, and I think this needs to be heard somehow. We know enough to say, according to my experiences, something is terribly wrong here.
     
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  16. livinglighter

    livinglighter Senior Member (Voting Rights)

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    Prior to this discussion on the redefinition of "recovery." What you've said above were the exact thoughts I had during a COVID Recovery Clinic. I've been meaning to make a post about my experience, but clearly, I'm too impaired to do it. The long in short is that the OT admitted the management advice works for those with a higher threshold for exertion. For those who have an extremely low baseline, i.e the severe, there is nothing. The severely affected will need to orchestrate their own support for daily living activities to avoid making themselves worse or ending up in squalid conditions, as there is no official plan in place between the NHS and Social Services to help them. In fact, in such cases, some boroughs are looking into whether children should be removed from homes due to safeguarding which the OT said they didn't feel comfortable initiating.

    I'll try making a post giving my full account, but I also wanted to mention it here because the article states that 'red flag' symptoms require specialist referral investigations - which hasn't been my experience with M.E or LC. So not only as part of 'recovery' are patients required to learn to deal with harrowing symptoms and significant disability, but they may also face barriers to secondary care specialist management due to ignorance or avoidance and the perception of what should be normal for a patient's 'recovery'. I've been told my chest pain doesn't require further investigation because, "based on clinical experience, it doesn't seem to cause any lasting damage, and patients do not die from it." Well, we might just die if serious alternative diagnoses are not ruled out, so they don't go unrecognised and mistaken for what patients must adapt to as part of recovery.

    Perhaps the information can be used at best to give reasons for asking for secondary care referrals for treatable alternative diagnoses for LC and M.E, given the overlap.

    Infographic: https://www.bmj.com/content/bmj/378/bmj-2022-072117/F1.large.jpg?width=800&height=600
    LC symptom management.large.jpg

    https://www.bmj.com/content/378/bmj-2022-072117



    [Edited for clarity and information]
     
    Last edited: Sep 30, 2022
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  17. John Mac

    John Mac Senior Member (Voting Rights)

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    https://www.bmj.com/content/379/bmj.o2502.full

    Behind a paywall

    I wasn't aware that "substance use disorders" were amongst the most visible and widespread of covid-19’s effects. But then I suppose if you work for a 'Substance Abuse and Mental Health Services Administration' then you see it everywhere - even when it isn't.
     
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  18. Andy

    Andy Committee Member

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    This letter has an intriguing title, "Long covid update for primary care should acknowledge functional symptoms" but the small amount we get outside of the paywall doesn't really give any hint as to the actual content.

    "It must be a fraught task, writing about long covid. The list of symptoms is huge and we don’t really know how it arises. I often feel inadequate faced with patients distressed by their long covid symptoms.

    I was …"
    Paywall, https://www.bmj.com/content/379/bmj.o2501
     
    It's M.E. Linda likes this.
  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    Sean likes this.
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    Moralistic medicine is the worst medicine. The idea that people's behaviors are what's wrong is as good as recipe as it gets to accomplish nothing at all. This is the medical equivalent of "your carbon footprint" or the now standard public health approach of "you do you".

    We have to move away from paternalistic medicine, not towards it. It's awful, literally the main reason why medicine is stagnant. This is the very reason why psychiatry is in such dire straits: it traces its origin to behavioral health, to the superficial study of people's outward behavior without any understanding of what goes on inside. People's motivations, a truly holistic model of reality, are far, far more complex than the sorry state of what modern healthcare has become, which is now basically this, a one-dimensional perspective of a complex higher-dimensional world, giving arbitrary 1-10 values on concepts that have no such values:

    [​IMG]
     
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