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

Follow-up of adults with non-critical COVID-19 two months after symptoms' onset

https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(20)30606-6/fulltext

Seems like an outlier at such high %.

 

"we are building an airplane whilst flying it " tells everyone just how clueless/lazy this group are .

 

https://twitter.com/user/status/1314834723282223104

 

It's good to see a letter in The Times on this. However, I think the last sentence could have been phrased better. Neil Riley wrote:

'It is sad that it has taken a pandemic to persuade the medical profession to take long-term viral infection seriously.'

The medical profession does generally take long-term viral infection seriously where it is established, but I think it's fair to say that it isn't established or thought likely to be in future in ME/CFS, and so far as I understand it, people with post/long covid are not testing positive for SARS-CoV-2.

It's not clear whether he actually intended to write something to the effect, 'take long-term effects after viral infection seriously' instead.'

 

https://twitter.com/user/status/1314923335004884992

 

https://twitter.com/user/status/1314659271548821506

 

Dr. Daniel Griffin has provided a weekly clinical update in the podcast This Week In Virology during the pandemic which has been truly interesting and educational. He is now more often including information about the post acute phase and in the last episode he spoke more detailed of what they can offer these patients.

These segments from dr. Griffin have become very popular for clinicians all over the world, so it worries me when he at 27.23 says:

…gradually increasing the exercise for this post exertional malaise that they get. Sometimes working with physiotherapists to help with that as well.

I hope there will be a discussion soon about post Covid-19 and an explanation of what PEM entails, as well as graded exercise vs pacing.

Link to episode:
https://www.microbe.tv/twiv/twiv-671/

 

https://twitter.com/user/status/1314489807318454274


https://twitter.com/user/status/1314495352834338817


https://twitter.com/user/status/1314496200607924224


https://twitter.com/user/status/1314497973905166336


https://twitter.com/user/status/1314499261724323845

 

https://twitter.com/user/status/1314501521996996609


https://twitter.com/user/status/1314503599628652544

 

https://twitter.com/user/status/1315274917768765441

 

For some reason Professor Greenhalgh, who appears to be taking a lead on long-covid, has deleted her tweet congratulating Dr Gerada on being made a dame so I’ve attached a screenshot.

As far as I’m aware she still hasn’t made any comment on the similarities between long-covid and ME/CFS, or made any comment on the the appropriateness of applying the CBT/GET models to long-covid.

Given her negative portrayal of ME patients‘ involvement in research (see BMJ article) and her praise for Dr Gerada and her husband, this makes me a little concerned about what services for people with long COVID may look like. My guess would be the same old therapies rebranded to get rid of the words people don’t like – a bit like the “graded activity or pacing” that Prof Chew-Grahm talked about in the RSM webinar that @dave30th wrote about (https://www.virology.ws/2020/10/01/tria-by-error-royal-society-of-medicine-webinar-on-long-covid/).

Having said that, lots of long COVID patients seem to have a lot of confidence in Prof Greenhalgh, so I hope I’m completely wrong and she does a great job. Maybe she will come out and say that CBT and GET are neither effective nor safe treatments for ME/CFS and they should not be applied to patients with long-Covid.



https://twitter.com/user/status/1314910741091278850

https://twitter.com/user/status/1314910746191503360

https://twitter.com/user/status/1314910751455404032



https://twitter.com/user/status/1315270193728368641

 

From where has Alwan got the idea that when people say Long covid is a post -viral syndrome that they imply that post-viral syndromes are to be dismissed with the added adverb "only"? There seems to be something seriously askew with her thinking on the subject.

She might end up having to play the Ferrier Defence.

 

That's the thing isn't it. They're all chums. At the bottom of it all there's that. How will they ever be held to account. Even those not so close to the core dare not cause too much of a stir.
Politeness above all. Important people with archaic titles.

And as a tangent: social justice must have an altogether different meaning to the privileged. I suppose it's something to be imposed on those needing it whether it suits or not. Because they care. Delusions. Aren't they a symptom of some kind?

 

Today in: isn't it kinda bad that medicine still doesn't have a name for that?!

I still remember the day that made me decide to go back to the hospital (where I was chucked off to depression which was a waste but whatever) is the intense cognitive problems I was experiencing, so bad I lost the ability to read for weeks, and on that day I was trying to make myself a simple breakfast and could barely manage to think through the 5-6 easy steps necessary, it was just too complicated. I'm a programmer, I'm used to things that take 50-60 steps, all interrelated. So incredibly frustrating.


‘I Feel Like I Have Dementia’: Brain Fog Plagues Covid Survivors

https://www.nytimes.com/2020/10/11/health/covid-survivors.html

I eventually stopped driving because I didn't trust myself on the road.

How does medicine invent new concepts? We need a freaking name and operative definition, criteria and such. The parallels to dementia are quite accurate, it's incredibly disabling, but this here is largely happening to working age adults, the economic impact will be devastating.


Edit: nitpicky but I see a lot of people sharing this with "NOT THE FLU!" and it just feels so silly that this was a major consequence of the Spanish flu; everything old is new again, seems like a state of permanent amnesia, or pervasive refusal to learn from experience

 

There is a lot of ongoing discussion over the meaning of post-. I'm wondering if it's worth doing a thread on the topic, if people here have the energy for it. It's silly that people are trying to separate things while saying the exact same things for the same reasons about things nobody knows about. The term was coined recklessly without being validated and is simply assumed but now that is causing nothing but confusion.

It's so silly that this is happening. Is the specific polio pathogen (I believe there are several?) gone in post-polio syndrome? Is it gone in mononucleosis? In Q fever? In sleeping sickness? In the first SARS? Nobody knows, it was simply assumed by challenging critics to show where the virus/bacteria are, hence it must be gone. Nothing but donkey science. The term was mostly abused precisely to dismiss the virus, or even "virus" if we take events like Royal Free whose pathogenic cause was dismissed, and pin it all on mass hysteria. All at a time when we had neither the technology nor the scientific understanding to actually validate those assumptions.

Obviously what this needs is extensive academic research to clarify but leaving this hanging is not an option. Old names used without care are continuing to cause confusion and harm. What a mess.

https://twitter.com/user/status/1315274917768765441


https://twitter.com/user/status/1315290777958973445


https://twitter.com/user/status/1315201161411125248

 

Things aren't any better in Canada.


'We're not being listened to': COVID-19 long-haulers describe fighting for medical care

https://www.ctvnews.ca/health/coron...-describe-fighting-for-medical-care-1.5141253

At least I'm noticing a growing respect for brain fog.

Ah, well, denial has consequences. It's not a shock to us and it's definitely not normal for a patient community to know more than the entirety of freaking medicine, even if it's just a tiny bit more. Extremely not normal.

 

https://twitter.com/user/status/1315379723011227648

 

https://twitter.com/user/status/1315225394694426624


https://twitter.com/user/status/1315393250891632641