Trisha Greenhalgh Profile picture
Jun 6, 2022 36 tweets 12 min read Read on X
THREAD on LONG COVID for non-specialists (GPs, patients). Covers what it is, who gets it, what causes it, what to do, what the outlook is. Drawing on in-preparation paper with @bcdelaney @ruairidhm @REvans_Breathe @sivanmanoj @LOCOMOTIONstudy
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[mute thread if not interested]
DEFINITION
A ‘patient-made’ term referring to symptoms persisting > 4 weeks after an acute covid-19 illness, and not explained by any other diagnosis. Includes ‘ongoing symptomatic covid-19’ (4-12w) and ‘post covid-19 syndrome’ (beyond 12w) [NICE].
nice.org.uk/guidance/ng188…
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The term ‘long covid’ also aligns with the World Health Organisation’s clinical case definition of ‘post-covid-19 condition’
who.int/publications/i…
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HOW COMMON?
Whilst most people who get acute covid-19 get better quickly, some don’t. In UK, 2 million people report symptoms for >4 weeks, 826,000 (42% of all long covid patients) in more than 1 year and 376,000 (19%) in more than 2 years.
ons.gov.uk/peoplepopulati…
4/
SYMPTOMS
Long covid is a constellation of symptoms across many organ systems. Fatigue is the commonest. Symptoms may fluctuate and flare up in response to triggers (physical or emotional). Great diagram here from David Jiang et al’s paper.
jacc.org/doi/abs/10.101…
5/ Image
Whilst the symptom list for long covid (previous tweet) is long and ‘non-specific’, they tend to occur in recognisable patterns (‘phenotypes’), as this paper from the @Join_ZOE study showed.
nature.com/articles/s4159…
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WHO GETS LONG VOCID?
Anyone can. It’s more likely after more severe acute illness and if
- female
- aged 35-69
- poor
- overweight
- other activity-limiting long-term conditions e.g. diabetes, heart disease
Systematic review:
ncbi.nlm.nih.gov/pmc/articles/P…
7/
WHAT CAUSES LONG COVID?
Many viral illnesses (including other coronaviruses SARS and MERS) produce prolonged illness (with fatigue a dominant symptom). But we don’t know why this happens in some people while others recover quickly.
tandfonline.com/doi/full/10.10…
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In long covid, the body reacts in a counterproductive way to the virus. Mechanisms include chronic inflammation, thrombosis (‘micro clots’) and endothelial damage. This impacts various organs—e.g. autonomic nervous system.
ncbi.nlm.nih.gov/pmc/articles/P…
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In some people, there is an auto-immune type reaction where the body starts to recognise its own tissues as foreign.
science.org/doi/10.1126/sc…
(But claims of ‘lupus-like’ syndrome and a major role for anti phosophilipid antibody are speculative)
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MENTAL AND SOCIAL EFFECTS
Being chronically ill and with unpredictable relapses may lead to loss of work, income and social interaction, leading to poor mental health. (But just because someone with LC has anxiety/depression doesn’t mean that’s what *caused* the LC).
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Paper here on the illness narratives of people with long covid. When this condition was first described, nobody believed in it and symptoms were dismissed by family, friends and health professionals. We know more now; this disease is real!
sciencedirect.com/science/articl…
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WHAT CAN GPs DO?
Patients with long covid greatly value input from their primary care clinician. Notwithstanding uncertainties and lack of definitive curative therapies, generalist clinicians can help patients a lot: see next tweet. Several appointments may be needed.
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GPs can help by hearing the patient’s story and validating their experience; providing holistic, relationship-based care; examining the patient in a face-to-face appointment; excluding alternative diagnoses; and directing to resources (links below).
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GPs can also manage specific symptoms & comorbidities (esp diabetes /CVS); monitor progress (physical and mental) and share the uncertainties of prognosis; helping set realistic goals for recovery; provide sick notes and support self-advocacy (e.g. with employer)
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WHAT TESTS ARE NEEDED?
There is no ‘standard panel’ of blood tests, images or other investigations for a person with long covid. This is because management is currently geared to identifying and managing risk factors and comorbidities, and treating specific symptoms.
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Unexplained fatigue needs basic tests to exclude anaemia, low vit D levels, heart failure etc. Breathlessness needs basic tests of lung function including oximetry and (if indicated) a chest x-ray. If pulmonary embolus suspected, patient probably needs specialist referral.
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Cardiac-sounding chest pain requires ECG and rapid-access clinic referral. Symptoms of autonomic dysfunction (rapid rise in pulse rate on standing) may indicate POTS (postural orthostatic tachycardia syndrome). (Often misdiagnosed as anxiety, sadly.)
ncbi.nlm.nih.gov/pmc/articles/P…
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‘Brain fog’ (poor cognitive function, memory probs) often accompanies (+ fluctuates with) fatigue. Use brief cognitive screening test (e.g. Mini Mental State). If unable to work or safety-critical occupation, refer for formal neuropsychological tests.
pubmed.ncbi.nlm.nih.gov/35136912/
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Allergic-type symptoms (urticarial rash, conjunctivitis, abdominal bloating, regurgitation) may respond to over the counter antihistamines. There are ongoing RCTs of specific antihistamines e.g. in the STIMULATE-ICP study.
stimulate-icp.org/about
20/
Sleep disturbance may respond to sleep hygiene measures, and possibly to melatonin if circadian rhythm is disrupted.
21/
ncbi.nlm.nih.gov/pmc/articles/P…
Patients may have heard about tests of clotting and inflammatory function. These are the subject of much research but are not routinely used in clinical practice (yet).
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ONLINE LONG COVID RESOURCES FOR PATIENTS
Nice one here from NHS Hertfordshire aimed at UK patients
Downloadable from hct.nhs.uk/media/4529/lon….
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Support for rehabilitation: self-management after COVID-19 related illness—a World Health Organisation guide for patients.
apps.who.int/iris/handle/10…
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For patients who prefer a book, try The Long Covid Self-Help Guide
amazon.co.uk/Long-Covid-Sel…
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For those who prefer a website, try Long Covid Recovery run by physiotherapists
yourcovidrecovery.nhs.uk
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If the patient’s main symptom is problems with breathing, there’s a specialist physio website on ‘Breathing Pattern Disorders’
physiotherapyforbpd.org.uk
27/
For patients who are trying to return to work after long covid, try this:
longcovidwork.co.uk
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SUPPORT GROUPS FOR LONG COVID
There are many. These are good:
Long Covid SOS longcovidsos.org
Long Covid Support longcovid.org
Long Covid Kids longcovidkids.org
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RESOURCES FOR HEALTH PROFESSIONALS
The NICE guideline on long covid
nice.org.uk/guidance/ng188…
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e-learning resource from the UK Royal College of General Practitioners:
‘Long term effects of COVID-19 and Post-COVID-19 syndrome’ elearning.rcgp.org.uk/course/view.ph…
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e-learning modules for health professionals from Health Education England on long covid
e-lfh.org.uk/programmes/lon…
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VACCINATION
Vaccination against covid-19 helps prevent long covid by reducing the chance of symptomatic infection, but it doesn’t fully protect. Some people will develop long covid after acute infection even if vaccinated.
ons.gov.uk/peoplepopulati…
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If you weren’t fully vaccinated when you developed long covid, a vaccination might help improve your symptoms but the improvement may be modest and isn’t guaranteed.
bmj.com/content/377/bm…
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MONITORING SYMPTOMS AND FUNCTIONAL STATUS
The best current guide to whether a patient is getting better from long covid is whether they feel better. The C19-YRS is a validated patient-reported outcome measure for use in clinic and research.
ncbi.nlm.nih.gov/pmc/articles/P…
35/
DISCLAIMER: I have not checked every word of every resource. Please don't send me abuse if you find a sentence that you don't agree with! (sorry but this happens a LOT).

Will add to this thread as new research findings emerge or review articles appear.
36/ end (for now)

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More from @trishgreenhalgh

Aug 1
Thread on our new state of the science review on #LongCovid. Commissioned by @TheLancet, peer-reviewed, coauthored with @sivanmanoj, @calirunnerdoc and Janko Nikolich. Link for free access is here (after 50 days that won’t work, then you’ll have to register and use this one:
1/kwnsfk27.r.eu-west-1.awstrack.me/L0/https:%2F%2…
thelancet.com/journals/lance…
In writing this article, we wanted to get the basic science of Long COVID into dialogue with the clinical management of this condition and the patient lived experience. @calirunnerdoc brought lived experience to our author team. 2/ Image
@calirunnerdoc Most but not all definitions of Long COVID put the cut-off at around 12 weeks (that is, if you’re still symptomatic 12 weeks after your initial COVID-19 infection, you’ve got Long COVID). 3/ Image
Read 21 tweets
May 22
It’s out! Our new state-of-the-science review of MASKS/RESPIRATORS in reducing transmission of respiratory infections. 13 authors (for our disciplines, see posts 3-4). 38000 words. 413 references. One conclusion: these devices work. For detail, read on. 1/
journals.asm.org/doi/10.1128/cm…
The commissioned review, which was independently peer-reviewed, had 3 objectives: 1. Summarize the evidence on masks/masking. 2. Examine why this evidence is so widely misunderstood, misinterpreted, or dismissed. 3. Outline an agenda for future research. 2/
Author team was chosen for breadth of expertise, including: public health, epidemiology, infectious diseases, biosecurity, fluid dynamics, materials science, mathematical modeling, data science, clinical trials, sociology, anthropology, psychology, and occupational hygiene. 3/
Read 48 tweets
Mar 18
BREAKING
The senior officers of the Royal College of Physicians commissioned a survey of MRCPs’ views on physician associates (PAs). They have today released the actual findings, but the back story is shocking. I’ll link to the raw data at the end of this 🧵.
1/
We now know that senior officers presented a flawed and distorted version of the findings at the Extraordinary General Meeting on 13th March 2024. Here’s my thread on that presentation (from before I’d seen the actual results).
2/
Of note is that after an outcry, the senior officer who presented the slides at the EGM resigned. He can tell his own story there. I am hearing he did not make the slides but was told he had to present them.
3/
Read 25 tweets
Mar 14
At yesterday’s #RCPEGM, a senior officer presented the results of a survey of MRCPs on their views about Physician Associates (PAs). They unwittingly supplied some good teaching material about how NOT to go about doing a questionnaire survey and how NOT to report the results. title slide 'RCP membership survey'
Here’s the first slide after the title slide. What do you notice? They jump straight into “methodology”. Students, don’t do this! Start with a RESEARCH QUESTION!! You must be clear what EXACTLY you want to find out, and from whom. Ideally, state some HYPOTHESES. "methodology" slide lacking research q
Here's the six questions that were sent out to MRCPs. Notice how the choice of words narrows the issue being explored. No Qs are asked about primary care (where PAs are seeing undifferentiated patients), yet RCP seeks to certify PAs for working in primary care. Six questions 1. How do you feel about physician associates being part of the MDT? 2. In secondary care, do you feel that you, or doctors you work with, are appropriately supervised and supported? 3. In secondary care, in your opinion, do you think physician associates are appropriately supervised and supported? 4. Does having a physician associate on your team impact on training opportunities for you? 5. Does working with a physician associate impact on training opportunities for doctor colleagues in your team? 6. Within your MDT, how well understood is the term ‘physician associate’?
Read 11 tweets
Dec 29, 2023
Our new paper:
‘Training needs for staff providing remote services in general practice: a mixed-methods study’, out today in @BJGPjournal
🧵 1/

bjgp.org/content/74/738…
Around one in 4 consultations in general practice occurs remotely (usually by telephone but sometimes as video or asynchronous e-consultation). Appointment booking and triage usually occur remotely too.
2/
Since the pandemic began, UK policy (especially English policy) has swung from ‘remote by default’ to ‘everyone has a right to a face to face consultation’. GP land is busy, has major workforce issues (esp not enough doctors) and is creaking under the strain of task-shifting.
3/
Read 23 tweets
Nov 29, 2023
Our paper on safety in remote GP consultations is getting a lot of coverage. Shout out to @oohGPwales who was lead author and analysed the 95 tragic safety incidents.
1/ 🧵
But NOTE: this paper is MAINLY about how remote care in GP land is remarkably SAFE. We followed 12 GP practices for 2y, looking for (among other things) evidence of patient harm from remote consultations. We found NONE.
2/
Staff in these 12 GP practices took a lot of measures to make sure that safety incidents didn’t happen. They often told patients “sorry you can’t have a phone consultation for that problem, you need to come and be examined”.
3/
Read 12 tweets

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