HSJ podcast: Long-COVID care cannot be delayed any longer (19 November 2020)

Since April, the ME Association has been dealing with a steadily increasing number of people who have post COVID fatigue, or a long/post COVID syndrome that resembles the type of post viral fatigue syndrome that often precedes ME/CFS. Some are now being diagnosed as have post COVID ME/CFS

 My personal view is that a significant proportion of people with long/post covid have a cluster of symptoms - ie activity induced fatigue, myalgia, cognitive dysfunction, dysautonomia, headaches, post extertional malaise - that are consistent with a post viral syndrome. Many of these people have an additional layer of on-going symptoms relating to end organ damage to their lungs, heart etc from the original COVID infection producing shortness of breath, palpitations, fevers etc

 

I have produced a self help management guide to post COVID fatigue, post COVID fatigue syndromes and post COVID ME/CFS - because most of the academic and media coverage is failing to provide any meaningful information on how to manage long/post COVID symptom

Direct link to pdf:

https://meassociation.org.uk/wp-content/uploads/Post-Covid-Fatigue-Syndrome-and-MECFS-September-2020.pdf

Unlike most of the UK media, the US media are now reporting on the important overlaps with PVFS and ME/CFS.  Article in TIME magazine:

https://time.com/5897992/long-haul-coronavirus-me-cfs/

And this link is now starting to attract some UK media attention:

https://meassociation.org.uk/2020/10/four-young-women-talk-to-cosmopolitan-about-their-long-covid-and-dr-charles-joins-in-20-october-2020/

These are some of the important points we are picking up on how people with long/post COVID should be managed in general practice/primary care - where most are looking for help and not always getting it

• patients need to be listened to, believed and not have their symptoms dismissed as anxiety (which is sadly happening)
• GPs need to have empathy and explain about the uncertainties - especially about what may be the cause of their symptoms and the outcomes
• GPs need to provide on going support - not just diagnose Long Covid and leave it at that
• Patients with lung or heart symptoms need to have their lungs and heart physically examined in a face to face consultation - this cannot be done by phone or Zoom consultation!
• Those with significant lung or heart symptoms may need to be referred to a specialist for further assessment and investigation - as there is plenty of emerging evidence to show that a significant proportion of the home managed group have developed lung and heart problems
• There needs to be a multidisciplinary approach to management in primary care that brings in community physiotherapists, occupational therapists etc

Dr Charles Shepherd

Hon Medical Adviser, MEA

@Dr Charles Shepherd Thank you for sharing these resources and tips with us. We've added your guide to our Learn library so others can use it: https://www.pslhub.org/learn/coronavirus-covid19/tips/me-association-post-covid-19-fatigue-postlong-covid-19-syndromes-and-post-covid-mecsf-september-2020-r3623/

I've also linked this comment to our community conversation on long covid: 

Please do share any other resources you have on long covid and also on ME/CFS or if you would like to write a blog on this we'd be happy to post it on the hub.