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Recommendations for the Recognition, Diagnosis and Management of Patients with Long Covid




Literally hot off the press! This couldn't have come at a better time following my blog on Long Covid Clinics yesterday.

"Recommendations for the Recognition, Diagnosis, and Management of Patients with Post COVID-19 Condition ('Long COVID'): A Delphi Study" is a preprint with The Lancet. It has been written by members of the Long Covid Doctors UK Group. The authors are doctors who all contracted Covid-19 in the first wave and have been suffering with Long Covid ever since. Like me they know Long Covid to be a real disease, with real symptoms but we just haven't found the cause yet. I have it on good authority from one of the authors that this has been the second most popular downloaded preprint of all times!! So if you ever feel disheartened by all the negativity and disbelief surrounding us as LC sufferers - remember good people are on your side. This is the abstract from the paper I have included a link to the full one below.


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.


Recommendations made following the study: The ones that are highlighted are the ones that didn't happen for me due to gaslighting. When you see how many it is truly staggering. See what apply to you too.


Long Covid Clinics

  1. Consider long covid in patients with a clinical diagnosis of covid-19 as per WHO criteria7 or test-positive history with new or fluctuating symptoms including but not limited to breathlessness, chest pain, palpitations, inappropriate tachycardia, wheeze, stridor, urticaria, abdominal pain, diarrhoea, arthralgia, neuralgia, dysphonia, fatigue including neurocognitive fatigue, cognitive impairment, prolonged pyrexia, and neuropathy occurring beyond four weeks of initial covid-19

  2. Multispecialty long covid clinics should be led by a doctor with cross- specialty knowledge and experience of managing this condition

  3. Consider individualised investigations, management, and rehabilitation planning via a multispecialty long covid assessment service as local services allow. Prioritise physician-led medical assessments and diagnostics initially, and consider allied health professionals including physiotherapy and OT input as adjuncts

  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

  5. All under-18-year-olds need access to similar services run by paediatric specialists with knowledge of how presentations and treatments differ to adults and with close liaison with school

  6. Patients with comorbid mental health difficulties should have equal access to medical care as a patient without mental health difficulties and should not be triaged away from services .

Diagnosis: Respiratory (lung)

  1. In someone with long covid, symptoms of possible non-covid-19 related issues should be investigated and referred as per local guidelines. Long covid alone is not a sufficient diagnosis unless other causes have been excluded

  2. Carry out a face-to-face assessment including a thorough history and examination, consider other non-covid-19 related diagnoses, and measure FBC, renal function, CRP, LFT, thyroid function, HbA1c, Vitamin D, Magnesium,* B12, folate, ferritin, and bone studies

  3. In those with respiratory symptoms, consider CXR at an early stage. Be aware that a normal appearance does not exclude respiratory pathology

  4. Be aware that simple spirometry may be normal but patients may have diffusion defects indicative of scarring, chronic PEs, or microthrombi. Consider referral to respiratory for full lung function testing

  5. Measure oxygen saturation at rest and after an age-appropriate brief exercise test in people with breathlessness and refer for investigation if hypoxaemic or if any desaturation on exercise

Diagnosis: Cardiac (heart)

  1. Consider the possibility of a cardiac cause of breathlessness

  2. Be aware that a normal D-dimer may not exclude thromboembolism, especially in a chronic setting, and referral for investigation is therefore indicated if there is a clinical suspicion of pulmonary emboli. Additionally, be mindful that thromboembolism may occur at any stage during the disease course

  3. In patients with inappropriate tachycardia and/or chest pain, carry out ECG, troponin, Holter monitoring, and echocardiography. Be aware that myocarditis and pericarditis cannot be excluded on echocardiography alone

  4. In patients with chest pain consider a referral to cardiology as cardiac MRI may be indicated in a normal echo to rule out myopericarditis and microvascular angina

  5. In patients with palpitations and/or tachycardia, consider autonomic dysfunction


Diagnosis:others

  1. In patients with urticaria, conjunctivitis, wheeze, inappropriate tachycardia, palpitations, shortness of breath, heartburn, abdominal cramps or bloating, diarrhoea, sleep disturbance, or neurocognitive fatigue, consider mast cell disorder

  2. In patients with cognitive difficulties sufficient to interfere with work or social functioning, consider neurocognitive assessment

  3. In patients with joint swelling and arthralgia, consider a diagnosis of reactive arthritis or new connective tissue disease and investigate and refer as appropriate


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.


References This preprint research paper has not been peer reviewed. Electronic copy available at: https://ssrn.com/abstract=3822279 Funding: The first author is funded by the NIHR Imperial PSTRC; however, this research received no specific grant from any funding agency.





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