News about Long Covid including its relationship to ME/CFS 2020 to 2021

And the response from the MEA:
MEA Statement: NHS England Guidance on the Management of Post-Covid Fatigue Syndromes
https://meassociation.org.uk/2020/0...e-management-of-post-covid-fatigue-syndromes/

Mentions The Times article, linked above: https://www.thetimes.co.uk/edition/...ce-to-coronavirus-recovery-patients-d9xzwr6xl

Mod note: For further discussion of the MEA statement, see this thread

 

In Covid-19 Long-Haul Syndrome, Symptoms Continue for Months
https://chicagohealthonline.com/in-covid-19-long-haul-syndrome-symptoms-continue-for-months/

 

This article is from two days ago, but I don't think it has been shared here yet.

It's about how journalists can approach 'long-haulers' with consideration and respect. I assume quite a lot of this can be transferred to ME patients as well. ME is also mentioned in the article.

It's written by Fiona Lowenstein, founder of the Body Politic COVID-19 Support Group and one of the initiators to the online study that @rvallee shared news about a few posts above in this thread here

Columbia Journalism Review - How to cover COVID-19 patients sensitively

While many covid-19 patients deal with debilitating fatigue, many journalists seem unaware of this symptom and its impact on patients’ lives. After I was discharged from the hospital, I experienced daily fatigue, accompanied by splitting headaches and eye pain. Researchers have since drawn links between long-haul covid-19symptoms and myalgic encephalomyelitis (ME), a complex chronic disease. People with ME and those who treat them often advocate for “pacing,” an energy-management technique that many covid-19patients also utilize. During a recent BBC interview in which I appeared alongside Paul Garner, a tropical-disease specialist and covid-19 patient in my support group, Garner described needing to schedule rest before the interview in order to participate.

 

https://eu.northjersey.com/story/op...ter-doctor-school-chronic-illness/3331348001/
https://twitter.com/user/status/1294265997071912960

 

Btw I noticed this promising tweet from her yesterday. Seems things have been moving forward for her health wise
https://twitter.com/user/status/1294006623791448064

 

Good to see the spirit surviving in adversity.

 

https://twitter.com/user/status/1294290972319285249

 

No mention of ME but then again this is kind of meta considering the bafflement. Of course there's a lot more than ME/PVFS at play here but it's so weird seeing the disconnect of physicians saying medicine has known about "post-viral fatigue" for a long time but also know nothing about what to do or what it is beyond hoping it magically goes away and doesn't exist if you don't test for it, I guess. So they've both known, are completely baffled and have done nothing to know more. It's meta-bafflement: they are baffled because of all the prior bafflement. And now I'm fairly sure this here is the paragraph containing the most uses of the word baffled in history. Baffled baffle.

https://www.youtube.com/watch?v=Z2fbhyptuRU

 

@rvallee I don't think there is much any doctor can do for PVFS except advise their patient to rest and wait it out. If they go through testing and have symptoms such as heart issues, low BP etc., then those are treatable with medications. What else should they do?

I had 'extremely' elevated anti-thyroid antibodies after my sudden viral onset and was told by an endocrinologist after my thyroid scan that I will feel sick for many months. There really wasn't much else to do.

 

Research it, so they're less baffled?

Doesn't really apply to primary care physicians, of course. All they can do is follow best practice: rule out other possibilities, advise rest, explain pacing, and support applications for sickness allowances. It appears this is still too difficult for many (most?) of them, but obviously I take your point about limited treatment options.

But there's no excuse for the absence of research, the culture of denial, the policy void, and the building of highly-paid, prominent careers on psychosocial approaches that fail even the most rudimentary scientific tests.

 

I agree with you on this 100%. Clinicians and researchers have focused on the acute phase of COVID-19, but continued monitoring after discharge for long lasting effects is needed. Hopefully this will bring a new world wide awareness on PV syndromes and benefit pwME too!

 

I think this is likely worth highlighting and sharing
https://twitter.com/user/status/1294329972920733696

Prof Jason is a sympathetic researcher of ME and CFS, and I imagine he will compare results with those seen in ME and CFS.

 

In the meantime, the best #1 advice doctors can give to their patients right now is not to exercise or push themselves.

 

The needs are much more pressing. People can't indefinitely go without income. People are already losing their job. Not everyone has a spouse or family who can help with daily things or taking care of kids. Not being able to function is a big deal. And as we all know disability systems are completely broken on purpose, they are not there to help.

Everything begins at recognition. Saying "this exists but whatever" is not recognition, it's dismissal. People need sick leave, temporary income, community support. Over time they need the same things pwME need: food, shelter, security. Most people can't simply rest for several months, it's simply not a thing. Some people were in economic transition, maybe had taken loans to start a business or were between jobs and were caught flat-footed. Medicine has to completely transform itself away from its ridiculous beliefs about MUS and rejection of the unknown. It breaks everything here.

 

https://n.neurology.org/content/neurology/early/2020/08/10/WNL.0000000000010640.full.pdf

Looks to be published in Neurology journal soon.

 

Don't think I've seen this posted, was published July 25.


COVID-19 “Long Hauler” Symptoms Survey Report

https://static1.squarespace.com/static/5e8b5f63562c031c16e36a93/t/5f25b5bfb3f4f86b1bf4d5f5/1596306894541/2020+Survivor+Corps+COVID-19+'Long+Hauler'+Symptoms+Survey+Report+(revised+July+25.1).pdf

Much of the report is in graphs, basically confirming the findings of the Body Politic report. I can't find the number of respondents. The report emphasizes that pain is a missing element and has a graph showing the mismatch between commonly reported symptoms and those acknowledged in guidelines.

Most common reported symptoms:

98 symptoms listed in total, with some of the understudied ones often found in ME like blurry vision, tinnitus, cramps, flashes or floaters in vision, night sweats, pain in the hand and feet.

Article talking about it: https://elemental.medium.com/new-survey-identifies-98-long-lasting-covid-symptoms-87935b258a3e. The article states the # of respondents is 1,567 but I can't find confirmation.

 

https://twitter.com/user/status/1294588694842740737

 

I haven’t read it so far
https://twitter.com/user/status/1294977928036585473

 

Haven’t read yet
https://twitter.com/user/status/1294930248329498624