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, arranged by presenting complaint/symptom.

General
National Center for Immunization and Respiratory Diseases (NCIRD), Division of Viral Diseases, Centers for Disease Control and Prevention, U.S. Department of Health & Human Services (14 June 2021). Evaluating and Caring for Patients with Post-COVID Conditions: Interim Guidance.


 * '' The term “Post-COVID Conditions” is an umbrella term for the wide range of physical and mental health consequences experienced by some patients that are present four or more weeks after SARS-CoV-2 infection, including by patients who had initial mild or asymptomatic acute infection.
 * '' Based on current information, many post-COVID conditions can be managed by primary care providers, with the incorporation of patient-centered approaches to optimize the quality of life and function in affected patients.
 * '' Objective laboratory or imaging findings should not be used as the only measure or assessment of a patient’s well-being; lack of laboratory or imaging abnormalities does not invalidate the existence, severity, or importance of a patient’s symptoms or conditions.
 * '' Healthcare professionals and patients are encouraged to set achievable goals through shared decision-making and to approach treatment by focusing on specific symptoms (e.g., headache) or conditions (e.g., dysautonomia); a comprehensive management plan focusing on improving physical, mental, and social wellbeing may be helpful for some patients.
 *  Understanding of post-COVID conditions remains incomplete and guidance for healthcare professionals will likely change over time as the evidence evolves.

Nurek M, Rayner C, Freyer A, Taylor S, Järte L, MacDermott N and Delaney BC. (8 April 2021) Recommendations for the Recognition, Diagnosis, and Management of Patients with Post COVID-19 Condition ('Long COVID'): A Delphi Study. Pre-print The Lancet. http://dx.doi.org/10.2139/ssrn.3822279

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."

Chaudhry A, Master H Top tips: managing long COVID Guidelines in Practice, 22 January 2021 Dr Ashish Chaudhry and Dr Harsha Master offer nine top tips for recognising and managing long COVID-19 symptoms in primary care.

Clare Rayner, Ashish Chaudhry, Asad Khan, Eleanor Balmer (February 2021). Manchester Long Covid GP Guidance: .

O'Sullivan O, Barker-Davies R, Chamley R, et al Defence Medical Rehabilitation Centre (DMRC) COVID-19 Recovery Service BMJ Mil Health Published Online First: 05 February 2021. doi: 10.1136/bmjmilitary-2020-001681 Introduction

[...] Defence Rehabilitation specialists at the Defence Medical Rehabilitation Centre (DMRC) Stanford Hall published a consensus statement, synthesised from a broad-based rapid review, on the specific rehabilitation needs of the post-COVID-19 population.'Domains covered included pulmonary, cardiac, neurological and exercise rehabilitation. This process informed the content of a 2-week residential rehabilitation course offered to all SPs who are struggling with prolonged symptoms after COVID-19.

The majority of DSHC physicians have managed patients with COVID-19 in the NHS, typically in large numbers. The experience amassed across the cadre, combined with physician referrals and clinical questions from DPHC, front-line commands and occupational medicine (OM), made it clear that clinical and occupational assurance of SP returning to work after COVID-19 illness would require a fully integrated clinical approach. A plan was developed in May 2020 by Defence physicians, and embraced by DPHC general practitioners, for diagnosis and clinical assurance of patients post-COVID-19 based on cardiopulmonary assessment. This proposal was positively received in June 2020 by OM and by Defence Rehabilitation specialists at DMRC. The collaborative effort between the four clinical cadres gave rise to the clinical delivery of the DMRC COVID-19 Recovery Service (DCRS). The pathway began assessment of patients in August 2020.

NHS Your COVID Recovery self-help website

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
National Center for Immunization and Respiratory Diseases (NCIRD), Division of Viral Diseases, Centers for Disease Control and Prevention, U.S. Department of Health & Human Services (14 June 2021). Evaluating and Caring for Patients with Post-COVID Conditions: Interim Guidance.

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.

COVID-NMA. Long Covid/rehab. ''This international consortium working with the WHO searches and evaluates the literature regularly for evidence of LC treatments. A single study there at the moment [Accessed 26 Jan 2021] ''

Conferences/Videos
AHP Leader. (17 April 2021) Long Covid Update Day (Video)

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.

As a patient, you may find it helpful to take this letter with you when seeing your healthcare professional:


 * Right to Choose: Under the NHS Choice framework, a patient can choose their consultant or service theoretically anywhere in the country (this is practically more limited and there are reported funding issues with CCGs) 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
 * Decision Fatigue
 * Below adapted from Procrastinate on Purpose by Rory Vaden
 * Prioritise Is it urgent? Is it important? the first priority should have your full attention. No more than five items per day. Multiply your lifespan - always worth *prioritising personal health* for more healthy quality of life later. Need to rest and pace.
 * Eliminate Is it important you do this? Sometimes non-urgent things are important to do regularly (like resting!).
 * Automate Time spent automating future tasks is a worthy investment.
 * Delegate It is probably worth investing 30 mins for every minute of work you do yourself on training someone else to do it.
 * Procrastination Do things too early and factors may change or it may be easier to do it later, wait until optimal time to act.
 * 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 reminder aids and symptom trackers e.g. Bearable

Useful Organisations

 * Long Covid Support
 * Long Covid SOS
 * Long Covid Kids
 * Long Covid Physio - Resources page
 * Long Covid Alliance
 * covid:aid
 * List of grassroots organisations compiled by covid:aid
 * For healthcare professionals as patients:
 * For medical students and doctors: Royal Medical Benevolent Fund
 * For nurses, midwives and HCAs: Cavell Nurses' Trust
 * For physios, allied health professionals and support workers: Long Covid Physio
 * For doctors in a training program: your local Professional Support Unit

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

Post-exertional malaise, fatigue and pacing resources
Click here for Pacing Resources

Syncope Trust And Reflex anoxic Seizures (August 2016) PoTS Patient Information Leaflet

Physiopedia - Long Covid

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.

U.S. Department of Health & Human Services, Centers for Disease Control and Prevention. Treatment of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC [Internet ]. 2019 [cited 2021 Feb 1].

Graded exercise therapy and CBT
Carolyn Wilshire, Tom Kindlon, Alem Matthees & Simon McGrath (2017) '''[https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724 Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial.]''' Fatigue: Biomedicine, Health & Behavior, 5:1, 43-56, DOI: 10.1080/21641846.2017.1259724 This paper discusses the serious flaws with the PACE trial which recommended graded exercise/CBT for chronic fatigue, re-analysing the trial data: "'RESULTS: None of the changes made to PACE recovery criteria were adequately justified. Further, the final definition was so lax that on some criteria, it was possible to score below the level required for trial entry, yet still be counted as ‘recovered’. When recovery was defined according to the original protocol, recovery rates in the GET and CBT groups were low and not significantly higher than in the control group (4%, 7% and 3%, respectively).'"

Wilshire, C.E., Kindlon, T., Courtney, R. et al. (2018) Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychol 6, 6 (2018). https://doi.org/10.1186/s40359-018-0218-3 Similar to the Wilshire paper above.

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.

NICE. (Nov 2020) [DRAFT FOR CONSULTATION Project documents | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management [Internet ] ]. NICE; 2020 [cited 2021 Feb 1]. 1.11.16 Do not offer people with ME/CFS:
 * any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
 * generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
 * any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy
 * structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS
 * therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process). 

Dysautonomia, postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia
Click here for Dysautonomia resources

Muzik O, Reilly KT, Diwadkar VA (2018) “Brain over body”-A study on the willful regulation of autonomic function during cold exposure. Neuroimage 172, 632–641. https://doi.org/10.1016/j.neuroimage.2018.01.067 Wim Hof breathing case report with imaging

Dysautonomia International (April 2021) - POTS & Dysautonomia in Longhaul COVID: Diagnosis, Treatment & Current Research (Video)

Mast cell activation syndrome

 * AAAA - Mast Cell Activation Syndrome
 * this webpage summarises management of MCAS (American organisation)
 * Low histamine diet
 * Low histamine diet (printable memory aid)
 * 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
 * Low histamine fish sources in the UK: Asad Khan's list of fish sources for MCAS sufferers

Glynne P, Tahmasebi N, Gant V and Gupta R. (June 2021) Long-COVID following mild SARS CoV-2 infection: characteristic T cell alterations and response to antihistamines. This prospective observational cohort study showed a reduction in symptom burden in those who received antihistamines with long COVID.

Effect of vaccination
See SARS-CoV-2_Vaccines

Research involvement and research priorities
Facebook group: COVID-19 Research Involvement Group [Facebook ]

UK Long Covid studies that are recruiting:
 * UK Studies signposted by NIHR (for those with a positive COVID-19 test, not LCers per se)
 * ClinicalTrials.gov Long Covid and Post COVID search terms
 * Filtered by UK Long Covid and Post COVID search terms

Other studies:
 * Jointly funded by MRC UKRI (scroll down) and NIHR(scroll down)
 * Post-hospitalisation studies
 * PHOSP-COVID
 * ISARIC4C

Carson, G., Long Covid Forum Group., Carson, G. et al. Research priorities for Long Covid: refined through an international multi-stakeholder forum. BMC Med 19, 84 (2021). https://doi.org/10.1186/s12916-021-01947-0

NIHR (16 March 2021) Living with Covid19 - second themed review on Long Covid

Return to work
Clare Rayner, Richard Campbell (03 April 2021) Long Covid Implications for the workplace, Occupational Medicine, 2021;, kqab042, https://doi.org/10.1093/occmed/kqab042 "'In conclusion, LC is an umbrella term for a prolonged illness with a diverse range of heterogenous and multisystem presentations. It impacts on ability to work, with major implications for OH services. RTW and rehabilitation plans need to be individualized and adjusted. Extended phased return will be necessary to take account of the gradual and extended recovery time for many patients.'"

Lalloo D, Williams A, Roy M, Macdonald EB, Rayner C. (25 Mar 2021) COVID-19 return to work in the roadmap out of lockdown: guidelines for workers, employers and health practitioners. Society of Occupational Medicine. London. 2021. Appendix 1 deals with Long Covid.

NHS Employers: Supporting staff to return to the workplace

Please also see employment issues and sick pay page.

Service Design
Selina Rajan, Kamlesh Khunti, Nisreen Alwan, Claire Steves, Trish Greenhalgh, Nathalie MacDermott, et al. (Feb 2021) In the wake of the pandemic: preparing for Long COVID (2021).

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.

Heightman M et al. (May 2021) [https://www.medrxiv.org/content/10.1101/2021.05.25.21257730v1? Post-COVID assessment in a specialist clinical service: a 12-month, single-centre analysis of symptoms and healthcare needs in 1325 individuals] [pre-print] medRxiv 2021.05.25.21257730; doi: https://doi.org/10.1101/2021.05.25.21257730

Primary care
Sofia Lind (21 June 2021) GPs given until end of next month to sign up to 50p/patient long Covid ES Pulse Today