BMJ Management of post-acute Covid-19 in primary care, 2020, Greenhalgh et al

That was a very big miss, it's very prevalent. And exertion intolerance. Same with pain and brain fog. Many many misses.

It's a fine document for those recovering without post-viral symptoms. It just does not really take into account post-viral symptoms other than in passing and all recommendations conflict with current practice, hence have no chance of being done right. If medicine already took ME seriously and were properly trained on it it would still miss a lot but be generally OK. It simply does not consider the existing reality of systemic discrimination of this kind of illness, making it mostly a performative exercise.

 

Greenalgh is matey with Wessley and Gerada. My comment on her blog slagging off ME patient activists (HIV activists were the right sort of angry and so got somewhere, but the ME activists are doing it all wrong and creating "negative tension") was not posted - ie. censored. It was polite. She says patients don't have the necessary "equipoise" needed in science. From memory I said in the comment that scientists often don't have the necessary equipoise either.
https://blogs.bmj.com/bmj/2019/11/1...owards-an-institute-for-patient-led-research/

 

Actually one of the other comments said the thing about equipoise, not me. I think I just backed up that first comment, and may have mentioned ME, Cochrane or PACE. I have now discovered BMJ will not post a comment until you remove any references to ME, PACE, etc.

 

Under self management it mentions daily pulse oximetry...Do people get given oximeters then? I will read the full paper...

 

Yes, they do! Do people with ME get provided with oximeters??

 

Don't be silly Caroline. If you can't get referrals for comorbid symptoms because that would encourage unhelpful beliefs, why on earth would you be given something to objectively measure said symptoms ?

 

Lower blood oxygen in PEM is a feature here.
Given that it's not an automatic thing to look at it would be interesting to see if this is unusual or not .

 

Some notes from me (relevant sections with key bits highlighted)

I was struck by how much lung/breathing/cardiac issues were common - so very different from ME/CFS in that respect (I suspect co-morbidities were different too). Also many similarities, and I have focused on things that look relevant to ME/CFS and also on patient participation in the paper.

https://twitter.com/user/status/1293851089893314560


>
What are the symptoms?
Post-acute covid-19 symptoms vary widely. Even so-called mild covid-19 may be associated with long term symptoms, most commonly cough, low grade fever, and fatigue, all of which may relapse and remit.47 Other reported symptoms include shortness of breath, chest pain, headaches, neurocognitive difficulties, muscle pains and weakness, gastrointestinal upset, rashes, metabolic disruption (such as poor control of diabetes), thromboembolic conditions, and depression and other mental health conditions.424 Skin rashes can take many forms including vesicular, maculopapular, urticarial, or chilblain-like lesions on the extremities (so called covid toe).25 There seems to be no need to refer or investigate these if the patient is otherwise well.


>
Referral to a specialist rehabilitation service does not seem to be needed for most patients, who can expect a gradual, if sometimes protracted, improvement in energy levels and breathlessness, aided by careful pacing, prioritisation, and modest goal setting. In our experience, most but not all patients who were not admitted to hospital recover well with four to six weeks of light aerobic exercise (such as walking or Pilates), gradually increasing in intensity as tolerated.

Managing fatigue (mentions patient responses to cochrane)
>
The profound and prolonged nature of fatigue in some post-acute covid-19 patients shares features with chronic fatigue syndrome described after other serious infections including SARS, MERS, and community acquired pneumonia.19202244

The sportsperson returning to exercise (summarised from Stanford-Hall statement43)

• After recovery from mild illness: 1 week of low level stretching and strengthening before targeted cardiovascular sessions
  
  
• Very mild symptoms: limit activity to slow walking or equivalent. Increase rest periods if symptoms worsen. Avoid high-intensity training...
  

There is much debate and controversy about the role of graded exercise in chronic fatigue generally (see patient responses to a recent Cochrane review47) and in covid-19 in particular (see a recent statement from the National Institute for Health and Care Excellence (NICE)48). Pending direct evidence from research studies, we suggest that exercise in such patients should be undertaken cautiously and cut back if the patient develops fever, breathlessness, severe fatigue, or muscle aches. Understanding, support, and reassurance from the primary care clinician are a crucial component of management.

>
Advice for patients

• 
  
• Royal College of Occupational Therapists. How to conserve your energy: Practical advice for people during and after having COVID-19. https://www.rcot.co.uk/conserving-energy
  
  
• Chartered Society of Physiotherapy. Covid-19: The road to recovery activity planner.
  

Encouraging stuff here:
>
Implications for the primary care team
From the limited current evidence, we anticipate that many patients whose covid-19 illness is prolonged will recover without specialist input through a holistic and paced approach.
...
If 10% of covid-19 survivors experience post-acute disease, and we assume (conservatively) that half of all cases were not formally diagnosed, this translates to around 60 000 people in UK with post-acute covid-19 (around six per general practice).

Patients, many of whom were young and fit before their illness, have described being dismissed or treated as hypochondriacs by health professionals.4 They have rightly contested the classification of non-hospitalised covid-19 as “mild.”5 In these uncertain times, one key role that the primary care practitioner can play is that of witness, “honouring the story” of the patient whose protracted recovery was unexpected, alarming, and does not make sense.75


Patient participation
>
How patients were involved in the creation of this article
A patient contributed to the description in box 1. The paper was read by four additional lay people with experience of covid-19 in themselves or their friends or relatives, and extensively modified in response to their feedback before submission. Peer reviewers included people with post-acute covid-19. The main changes in response to patient feedback were in relation to management of fatigue.

 

Nonsense (sorry SimonM. Don't mean you.)

"One of the chief functions of therapy at this stage", Wessely and colleagues say," is to allow the patients to call a halt without loss of face...... The report ( the 1989 Wessely David Chalder Butler report) advises telling patients they don't have a life-threatening illness and that it is now time to' pick up the pieces'."

Per Caroline Richmond in GP Magazine in 1988, apparently in consultation with her co-member of Campaign against Heath Fraud member Simon Wessely. She appears to have had pre-publication sight of the report, and from that one must draw ones own conclusions. This seems to have been intended as a "puff" for the paper, but accidentally was published before it-hence a later correction.

 

It seemed others had prior right to post the documents on the forum. The documents in question were discovered by @AR68 and have now been posted by @Kalliope on the thread

Twitter account will provide headlines & quotes from the 1955 Royal Free Hospital outbreak to the day when each headline appeared - 65 years later

 

She certainly was. Some of us still remember this paper she co-authored with Wessely, where they promote the idea that the health complaints of a certain demographic (middle class women) should be dismissed by medical practitioners.

https://academic.oup.com/bmb/article/69/1/197/523356

 

How does anyone doing a proper job find time, within the working day, to write such bilge? Perhaps fiction has always been the favoured genre.

 

I have not read this but Simon's highlights seem to indicate the same old pernicious nonsense.
Most of it is rationalisation designed to prove that the input of every member of the team is so important.
(As opposed to admitting nobody has any idea what to do and has nothing to offer other than being polite.)

The irony comes when you look at the detailed advice.
The occupational therapists advise people on how to get away with doing less.
The physiotherapists advise people on how to do more.

We had the same nonsense for RA in the 1980s. Everyone thought they were doing great things, despite advising the opposite.

And of course the real political message in this case is that primary care should be in charge and no need to waste lots of money on specialists.

 

Four "rapid responses" have been posted on this article so far, https://www.bmj.com/content/370/bmj.m3026/rapid-responses

 

Pleasantly surprised by those replies, Arvind Joshi in particular...

 

Yes, but this bit still grates for me:

There is much we do know, from research on SARS-1, ME and other post-viral illnesses, yet almost everyone is ignorant of this because they never bothered to read the research before SARS-2 and few are bothering to read it even now. COVID-19 is far less novel than many people seem to want to believe. The decision to brush off longcovid (or ME) as psychiatric therefore reflects not the novelty of the disease, but the choice of the medical practitioner to be ignorant.

 

Yup.

Very well put. Adding insult to injury is doing harm and so is refusing to treat the injury. Medicine has been doing enormous harm for... well, forever. Health care needs emancipation, the same way good government needed to remove tyrannical control over the masses, nothing about us without us is the only way forward. I don't understand the logic behind doing medicine hostile to patients, it is so evidently morally and intellectually bankrupt, the disastrous outcomes it creates are entirely predictable. Time for this old profession to finally mature up a little, prima donnas are terrible at dealing with people, let alone the vulnerable.