Thread of some quotes from Michael Sharpes #LongCovid presentation

"I help to set up a Post Covid clinic in Oxford which is based in a respiratory department but which is multiple disciplinary. And so I've had some clinical experience of the kind of patients that we're seeing"
"What's very striking in some of our patients is what you might call health anxiety. They are very focused on bodily symptoms, they're worried."

"Anxiety is prevalent in this population"
"A third to a half of patients have significant anxiety and because of that fearfulness they may avoid going out and they may spend a lot of time seeking information about their condition because it's known to be a little mysterious and they may seek a lot of medical care"
"I think I and my colleagues think social factors have an influence in shaping these presentations and the concern about symptoms. so here's an article by a well-known journalist [George Monbiot] in a well known newspaper and as you can see he says that"
"Long Covid could mean lifelong covid the effects can be horrible there's damage in the lung heart and brain and we should all fear lasting consequences"
"so if you're a somewhat vulnerable disposition and you're feeling unwell and you don't know much about your illness that is likely to make you more concerned and is not conducive to a positive approach to recovery"
"there are a lot of online groups, been even more important in this pandemic. great benefit to many patients who feel worried about their symptoms and feel maybe they're the only one to be able to share those experiences and get some support"
"potentially downside as we've seen with the chronic fatigue and me groups who are also moving into this space to some degree is the people that recover tend to leave"
"and you end up over time with the poor prognosis people who have a rather pessimistic view of the illness that they transfer to other people so i'm not sure that all the support groups have been entirely helpful in encouraging the patients to take a positive approach"
"doctors are sometimes unhelpful here. This is a quote from an immunologist reported in nature their physicians don't believe them and so they get psych referrals so you know it's not really real you're sent to psychiatry and his mission is to tell the people have a real disease"
"that's another noble mission but it can lead to excessive investigation... which isn't necessarily helpful to the patient and indeed can entrench the patient in worries that they have a disease and again distract them from the task of rehabilitation"
"one of the things we have found that we're trying to do with the clinic is prevent the multiple referrals so when i was saying that people get referred to multiple specialties that isn't just within the clinic people are rattling around the hospital"
"as you can imagine from cardiology to neurology to rheumatology and i think one benefit of having a Post Covid clinic is you can try and pull them in and keep a handle on that"
"and so you know we have a cardiologist we'll join virtually in our MDT but the patients don't all have to go to cardiology so i think we are containing the healthcare use and hopefully the adverse effects of all those opinions on the patient"
"we don't have any randomized trials of treatment in post covid yet because we haven't had time to have them done but we have got randomized trials in these related conditions so this is the [PACE] trial that i did with colleagues about 10 years ago in chronic fatigue syndrome.."
"some you may know immensely controversial because some of the patient groups are very against this they feel it's harmful it's not validating their illness and so that leads to some potential difficulties for us in helping patients."
"but i think at the moment if you've found and treated the obvious things you can treat, the best approach to Post Covid is accepting it'll take time"
"and doing what i might call psychologically informed rehabilitation, explicitly dealing with worries but helping them very gently return to activity."
"[NICE] are doing guidelines on CFS which in their current form are being revised, in the light of feedback are saying you shouldnt have rehabilitation and graded exercise so i dont know how thats going to play out but that may complicate the provision of treatment for PostCovid"
"This is an unusual case study because this one is in the public domain, this is paul garner who's a professor of medicine... and he's actually blogged in the BMJ"
"his initial onset of long covid and now his recovery and it's probably worth reading. so he had a covid like illness he was very symptomatic and disabled, he couldn't work, he describes it very well"
"and then he actually, he was becoming to believe he had ME, a chronic possibly lifelong illness and then he had contact with someone expert in rehabilitation of chronic fatigue syndrome and he recovered quite quickly with a different approach of rehabilitation"
"the revision of the [NICE] guidance [for ME/CFS] which has been very driven by patient groups who feel strongly about this... it was going to be very different, that's been out to consultation I know several Royal Colleges have pushed back very hard indeed on that"
"I think there's lots to play out there what will happen with the Chronic Fatigue/ME ones what will happen with the NICE [Long Covid] ones, but you know i think we just have to have this rehabilitation because it's the only thing we've got apart from time"
video available here:

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More from @ABrokenBattery

8 Apr
The psychological approach to ME/CFS the most common post viral illness is largely responsible

In the 70s the Royal Free Outbreak was described as 'mass hysteria', ME was reframed as CFS in the 80s, In the 90s Psychs argued there was no underlying disease and it was reversible.
GET and CBT were developed to reverse deconditioning and change a fear of exercise.

This approach has now been rejected by NICE (draft) and the CDC because of poor quality evidence and potential harm. ImageImageImageImage
Doctors get little or no training on ME/CFS and if the do are taught an incorrect psychological model. The NICE guidelines perpetuate a misunderstanding and are still in place. Most doctors are unaware of the history and biomedical research (>10,000 papers).
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16 Mar
Thread of quotes from Respiratory Consultant Dr Paul Whitaker #C4Dispatches episode on #LongCovid :

"The definition of long Covid is people having symptoms going on beyond 12 weeks. The number of people who have had Covid in the UK makes this an almost overwhelming problem."
"We do chest x-rays, CT scans and full lung function tests. Some people have evidence of scarring, some people have evidence of an inability to absorb oxygen properly. But most people have normal tests."
"For these people it really comes down to fatigue, to muscle strength and also to what the physiotherapists call dysfunctional breathing, so after Covid people breathe a little bit differently."
Read 10 tweets

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