Management of Long COVID

This wiki is intended for healthcare professionals and should not be considered medical advice.

Summary Table
Click here for a Google Docs sheet summarising possible management approaches to Long COVID.

General
Greenhalgh T. et al. (11 August 2020) Management of post-acute covid-19 in primary care. BMJ2020;370:m3026 doi: https://doi.org/10.1136/bmj.m3026

Barker-Davies, Robert M et al. The Stanford Hall consensus statement for post-COVID-19 rehabilitation British journal of sports medicine vol. 54,16 (2020): 949-959. doi:10.1136/bjsports-2020-102596
 * "Cardiac sequelae should be considered in all patients post-COVID-19, regardless of severity, and all patients should have an assessment of their cardiac symptoms, recovery, function and potential impairments. Depending on the patient’s initial assessment and symptoms, specialist advice should be sought, and further investigations may include a specialist blood panel, ECG, 24-hour ECG, echocardiogram, cardiopulmonary exercise testing and/or cardiac MRI."
 * "Patients with COVID-19 who experience the following symptoms: severe sore throat, body aches, shortness of breath, general fatigue, chest pain, cough or fever should avoid exercise (>3 METs or equivalent) for between 2 weeks and 3 weeks after the cessation of those symptoms"
 * "Following SARS in 2003, a post-SARS syndrome was described, with the same phenotype as postviral chronic fatigue syndrome, similar to fibromyalgia, with poor sleep, fatigue, myalgia and depression, with some unable to return to work as a result."

NICE
NICE (18 Dec 2020) Rapid guideline: [https://www.nice.org.uk/guidance/ng188/chapter/4-Planning-care Managing the long-term effects of COVID-19. NICE guideline [NG188 ] ] Published date: 18 December 2020

Responses and critiques to the NICE guideline: Gorna R, MacDermott N, Rayner C, O’Hara M, Evans S, Agyen L, Nutland N, Rogers N and Hastie C. (18 Dec 2020)Long COVID guidelines need to reflect lived experience. The Lancet. Published Online https://doi.org/10.1016/S0140-6736(20)32705-7

Sivan Manoj, Taylor Sharon. (23 December 2020). NICE guideline on long covid BMJ 2020; 371 :m4938 doi: https://doi.org/10.1136/bmj.m4938

SIGN
Scottish Intercollegiate Guidelines Network (Dec 2020). Long COVID (Patient Information Leaflet)

Scottish Intercollegiate Guidelines Network (Dec 2020). Managing the long-term effects of COVID-19.

International/Other
NIH (Updated: 17 Dec 2020) COVID-19 Treatment Guidelines ''Please note these guidelines are mostly restricted to COVID-19 in the acute setting with a small word here about long COVID.

Advice, Tips and Tricks for Long COVID as a patient
This is addressed to healthcare professionals with Long COVID but generally it will apply to your patients too.
 * Right to Choose: Under the NHS Choice framework, a patient can choose their consultant or service theoretically anywhere in the country but only before they get seen by someone who then are regarded as their provider and it becomes more complicated/a negotiation with the GP to get a second opinion. It is much easier to be seen by the right person in the first place. Talk to other Long Covideers as a patient because there are services, consultants and departments that have been problematic in their approach. A cardiologist with a specialist interest in POTS is likely better for Long COVID patients for example.
 * Which.co.uk. Patient choice: how to choose the right hospital and consultant
 * Rest and take regular breaks: Do not get affected by presenteeism for absence at work. You will likely need more rest and time off from work than you think. See Pacing Resources and Employment issues and sick pay. Do a slow phased return with occupational therapy input.
 * Work smart, not hard:
 * Eat That Frog! by Brian Tracy
 * Creative procrastination
 * Posteriorities as well as priorities
 * [placeholder]
 * Wearables: Anecdotally wearable devices that record heart rate and sleep quality as well as other fitness metrics are helpful. The Body Battery feature by Garmin devices can also be anecdotally helpful to aid pacing.

Useful Apps

 * Food Intolerances [paid] - aids in low histamine diet - Apple Google
 * Medicine aids e.g. [placeholder]

Useful Organisations
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Long COVID clinics
60 LC clinics announced by NHS England 18 Dec 2020

Pacing and chronic fatigue
Click here for Pacing Resources

This Week In Virology podcast episode - Long Covid Long-term COVID and ME/CFS: Discussing patients with long-term COVID and similarities and differences with ME/CFS.

Torjesen I. (21 July 2020) NICE cautions against using graded exercise therapy for patients recovering from covid-19. BMJ2020;370:m2912 doi:https://doi.org/10.1136/bmj.m2912 from:

NICE (July 2020) Statement about graded exercise therapy in the context of COVID-19.

Dysautonomia, Postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia
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Mast cell activation syndrome

 * AAAA - Mast Cell Activation Syndrome
 * this webpage summarises management of MCAS, be mindful this is an American organisation
 * Low histamine diet
 * Low histamine diet
 * The Swiss Interest Group Histamine Intolerance (SIGHI) Food Compatibility List and the SIGHI-Leaflet: Histamine Elimination Diet
 * ''See also Food Intolerances app under 'Useful Apps' above

Research involvement
UK Long Covid studies that are recruiting: [placeholder]

Return to work
NHS Employers: Supporting staff to return to the workplace

Please also see employment issues and sick pay page.

Service Design
Ladds, E., Rushforth, A., Wieringa, S. et al. Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality principles for services BMC Health Serv Res 20, 1144 (2020). doi.org/10.1186/s12913-020-06001-y

Background

Approximately 10% of patients with Covid-19 experience symptoms beyond 3–4 weeks. Patients call this “long Covid”. We sought to document such patients’ lived experience, including accessing and receiving healthcare and ideas for improving services.

Summary of key findings

This qualitative study of 114 people with long Covid in UK, including high representation from health professionals, has revealed a number of important findings. People experience long Covid as a confusing illness with many, varied and often relapsing-remitting symptoms, uncertain prognosis and a heavy sense of loss and stigma. They find it difficult to access and navigate services which they experience as fragmented and siloed; some described not being taken seriously. There appears to be wide variation in clinical practice (e.g. inconsistent criteria for seeing, investigating and referring patients), and in the quality of the therapeutic relationship. We identified a number of possible critical events which may have been partly due to overstretched, disjointed services designed to discourage face-to-face encounters. These findings informed draft quality principles.

Conclusion

Suggested quality principles for a long Covid service include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services.