Recommendations for the Recognition, Diagnosis, & Management of Patients with Post COVID-19 Condition ('Long COVID'), 2021, Nurek et al

Abstract
Background: The present work aims to provide a rapid expert guide for Post Covid-19 Condition (“long covid”) clinical services. In the absence of research into mechanisms, therapies and care pathways, yet faced with an urgent need, guidance based on “emerging experience” is required.

Methods: The authors generated 33 recommendations pertaining to the recognition, investigation, and management of long covid. These were distributed online to a Delphi panel of UK doctors (any specialty) with an interest in, lived experience of, and/or experience treating long covid. Over two rounds of Delphi testing, panellists indicated their agreement with each recommendation (a 5-point Likert scale) and gave comments. Recommendations eliciting a response of “strongly agree”, “agree”, or “neither agree nor disagree” from ≥90% of respondents were taken as showing consensus.

Findings: Thirty-three UK-based clinicians representing 14 specialties completed both rounds of the Delphi. Twenty-nine (88%) had lived experience of long covid and five (15%) were clinicians developing services for long covid. Of the 33 recommendations presented in Round 1, 18 were incorporated into the final list, 13 were amended to reflect respondents’ feedback, and two were excluded. Of the 19 presented in Round 2, 17 were added to the final list and two were excluded. The final list thus comprised 35 recommendations: six pertaining to clinic organisation, 13 to diagnosis of the underlying disorder, and 16 to management.

Interpretation: Long covid clinics need to operate not in isolation but in the context of rapidly evolving practice amongst both GPs and specialists. Care pathways in holistic care, investigation of specific complications, management of potential symptom clusters in cardiac disease, dysautonomia and mast cell disorder, and individualised rehabilitation are needed.

Might require signup to access, https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3822279

 

From Final List of Recommendations

...

4) It is inappropriate for long covid clinics to be led by mental health specialists e.g., IAPT, clinical or health psychologist. They may be useful in supporting the multispecialty team but do not have the expertise to investigate and manage potential organ damage

...

20) For patients with fatigue and worsening symptoms hours to days following an activity, emphasise the importance of an initial phase of convalescence followed by careful pacing and rest

21) Support patients in shifting their mental timeline of recovery to reflect the likely prolonged course, with a possibly long phased return to work

22) Further support patients with signposting to patient resources. Applicable resources may include: management of post-exertional symptom exacerbation, activity pacing, acupuncture, diagnosis-specific management as relevant

....

"The experience of many patients is of post-exertional symptom relapse. Physical or cognitive workload beyond the patient’s “energy envelope” may cause an exacerbation of symptoms including fatigue, fever, myalgia, and breathlessness.44 Exacerbations may manifest immediately or after a delay of 24-48 hours and may last days or months. As the threshold for this effect varies not only by patient but over time, pacing needs to be flexible and careful."


Of note, no mention of ME at all (that I spotted).

 

"As covid-19 is a new condition with both lasting organ damage and excess deaths reported,8 it cannot be assumed that patients are suffering “merely from post-viral fatigue” and that rehabilitation is sufficient, or indeed that viral persistence has been excluded. However, input from expert physiotherapists and occupational therapists who are familiar with the condition is an important aspect of caring for long covid patients.9,10 Patients require a holistic clinical approach that prioritises investigation of potential physical pathology.2,11 The lead clinician should be a doctor, “well versed in multisystem disorders”, working across disciplines, and able to refer to specialists."

If ME had been properly researched and cared for then there would be no need to make any of these points.

 

I think that the bias of the physician-patients shows through clearly in this paper. They do not have “merely PVF” (aka ME although they’re careful not to mention). They have all the symptoms of ME but wish to be taken seriously and treated by proper consultants with actual tests. They don’t mention anywhere that this constellation of symptoms exists as part of ME. They don’t mention it at all. It is jarring to see the difference between how the two diseases are linked in the US by patients and NIH, but kept very far apart by physician-patients in the UK.

it’s possible to sign in on the pre-print page but I’m having issues with Disqus. If anyone agrees w me and can sign in to comment, please do.

 

There is a bit of a confusing message on the status of this paper. Someone tweeted that BMJ and Lancet rejected it, and so they are publishing it on a pre-print server for consideration by another journal, but I'm not sure who that person is in relation to the paper's authors. Except the pre-print server says it's the Lancet's, so I don't know.

https://twitter.com/user/status/1382446127186911236

 

As to why they don't see the connection: "the fatigue".

https://twitter.com/user/status/1382619496481980420


When you accidentally describe ME but don't know it because you think it's "the fatigue":

https://twitter.com/user/status/1382612463397527555

 

A couple of comments have appeared underneath the pre-print, https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3822279

 

And one of the authors, Delaney, is asking for comments so they are welcome.

 

I finally got signed in. Added a few comments. Tbh, this paper has me in an actual rage. Stop w the excuses. Try harder. Look at your counterparts across the pond who have made ME central to their approach to LC, modelling protocols against the ME ones, mentioning in most papers and presentations. Work to overcome this massive entrenched bias against ME. It’s total bullshit and I have little faith given how clearly their discrimination shows through.

 

I believe this has now been published as

Recommendations for the recognition, diagnosis, and management of long covid: A Delphi study

Abstract

Background: In the absence of research into therapies and care pathways for long covid, guidance based on “emerging experience” is needed.

Aim: To provide a rapid expert guide for GPs and long covid clinical services. Design: Delphi study. Setting: Primary and secondary care doctors.

Method: The authors generated recommendations pertaining to the investigation and management of long covid. These were distributed online to a panel of UK doctors (any specialty) with an interest in, lived experience of, and/or experience treating long covid. Over two rounds of Delphi testing, panellists indicated their agreement with each recommendation (5-point Likert scale) and gave comments. Recommendations eliciting a response of “strongly agree”, “agree”, or “neither agree nor disagree” from ≥90% of respondents were taken as showing consensus.

Results: Thirty-three clinicians representing 14 specialties reached consensus on 35 recommendations. Chiefly: GPs should consider long covid in the presence of a wide range of presenting features (not limited to fatigue and breathlessness) and exclude differential diagnoses where appropriate. Detailed history and examination with baseline investigations should be conducted in primary care. Indications for further investigation and specific therapies (for myocarditis, PoTS, mast cell disorder) include hypoxia/desaturation, chest pain, palpitations, and histamine-related symptoms. Rehabilitation should be individualised, with careful activity pacing (to avoid relapse) and multidisciplinary support.

Conclusions: Long covid clinics should operate as part of an integrated care system, with GPs playing a key role in the multidisciplinary team. Holistic care pathways, investigation of specific complications, management of potential symptom clusters, and tailored rehabilitation are needed.

Open access, https://bjgp.org/content/early/2021/07/27/BJGP.2021.0265

 

"The British Society for Allergy and Clinical Immunology (BSACI) would like to respond to the article by Nurek et al.1 We appreciate this is a growing area of interest, and that further research is needed, but we feel that this article makes conclusions that are not supported by evidence, and which has the potential to trigger unnecessary referrals to allergy and immunology clinics, which are already facing huge pressures.

In Box 1, described as ‘ Known examples of conditions associated with long COVID’, included are ‘Mast cell activation, including urticaria, angioedema, and histamine intolerance’, along with ‘New-onset allergies and anaphylaxis’. It has been recognised that SARS-CoV-2 infection can be associated with urticaria and angioedema,2 as is the case with many infections,3 but there is no evidence to suggest that acute infection or long COVID causes new allergic sensitisation or manifestations of allergic or atopic diseases including anaphylaxis. Similarly, it is not clear that urticaria itself is increased in long COVID, after the initial phase of infection. The term ‘histamine intolerance’ can be misleading in that there is no clear evidence to support a role for ingested histamine in chronic urticaria, a well-recognised auto-immune disorder.4,5"

https://bjgp.org/content/72/719/259.1