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

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Cheshire

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This article updates and extends a previous BMJ Practice Pointer published in August 2020 when almost no peer reviewed research or evidence based guidance on the condition was available.1 In this update we outline how clinicians might respond to the questions that patients ask.
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What you need to know
  • Long covid (prolonged symptoms following covid-19 infection) is common

  • The mainstay of management is supportive, holistic care, symptom control, and detection of treatable complications

  • Many patients can be supported effectively in primary care by a GP with a special interest
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Fatigue—described by one patient as “like the most severe jet lag and hangover I’ve ever had”37—is the commonest symptom and may be associated with severe functional impairment; reduced exercise tolerance is also common. Some patients develop post-exertional malaise (PEM) or post-exertional symptom exacerbation (PESE),11 defined as worsening of symptoms following physical or mental exertion, typically 12 to 48 hours after activity and lasting days or (rarely) weeks.38 Long covid has evident (but under-researched) overlaps with chronic fatigue and myalgic encephalomyelitis.39Box 1 gives examples of patients’ accounts.
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https://www.bmj.com/content/378/bmj-2022-072117

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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?
 
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.
 
Jonathan Edwards said:
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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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.
 
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.
 
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:
What if I’m not getting better? said:
Early research on management of post-acute covid-19 assumed (explicitly or implicitly) that patients would recover, albeit slowly. Long covid specialist services in the UK were designed around this assumption and focused on assessment, rehabilitation, occupational therapy, and psychological support. Thirty months into the pandemic, it is clear that this approach helps many but not all patients, and that for a substantial minority, “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.
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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.
 
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.
 
“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.
 
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.
 
RedFox said:
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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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.
 
BrightCandle said:
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.
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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.

BrightCandle said:
If they are going to just define recovery as not bothering the NHS...
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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.
 
RedFox said:
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.
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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.
 
BrightCandle said:
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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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.

Do I need to see a specialist? said:
Many people with long covid can be managed effectively in primary care, but “red flag” symptoms (infographic) require urgent referral and action. Additionally, some patients—those with multiple severe symptoms (especially if both physical and mental health are affected), symptoms persisting after a severe acute illness (eg, a period in intensive care), atypical symptoms, profound functional impairment (eg, unable to work or attend college), and those needing confirmation that self-management or supported rehabilitation is safe and appropriate—benefit from specialist referral.63 Ideally, this should occur in a dedicated “single point of entry” long covid clinic. These integrated clinics spanning primary and secondary care give patients access to additional investigations and other specialists (typically including respiratory medicine, cardiology, neurology, rehabilitation medicine, therapists, and psychologists). Not all localities have such services, and in their absence, a thorough history and clinical assessment should enable a referral to be made to the most appropriate secondary care service. Table 1 and the infographic provide some indicators.

Because health services in many areas are currently very stretched, some patients may experience considerable delays even when their referral meets local criteria. Supportive care and symptom control from the primary care team may be helpful in the interim.
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What investigations should I have? said:
Long covid affects patients in different ways and to different degrees. Because a key component of care is investigating and managing risk factors and comorbidities, no standard protocol exists for assessment. Ideally, every patient should have an in-person consultation including a full history, clinical examination, and review of comorbidities and social circumstances.

Initial investigations are guided by the predominant symptoms (table 1) and are primarily directed at excluding serious alternative diagnoses. Patients may have heard about tests for immunological and clotting function; such tests are the subject of intense research currently, but they do not yet have an established role in clinical practice.
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Infographic: https://www.bmj.com/content/bmj/378/bmj-2022-072117/F1.large.jpg?width=800&height=600
LC symptom management.large.jpg

Symptoms investigation and management of long covid said:
Table 1
Symptoms, investigation, and management of long covid
https://www.bmj.com/highwire/markup/1074092/expansion?width=1000&height=500&iframe=true&postprocessors=highwire_figures,highwire_math
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https://www.bmj.com/content/378/bmj-2022-072117



[Edited for clarity and information]
 
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Letters
Long covid update for primary care
Covid-19 and long covid highlight the need to tackle behavioural health challenges

Greenhalgh and colleagues’ Practice Pointer1 and the Opinion article from Long Covid SOS2 serve as a reminder that “there is no health without mental health.”3

Behavioural health conditions—including mental health conditions and substance use disorders, which often co-occur—have been among the most visible and widespread of covid-19’s effects. Throughout the pandemic, patients with behavioural …
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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.
 
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
 
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:

3cff28e35ac1e6a63ce3121ed42255f9.jpg
 
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