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

Indeed, it took me about 20 years after my diagnosis to admit to the possibility I might never get better (without science finding a cure). Even in the subsequent 10 years I still have some hope, but I am more realistic and I accept the need for my GP to support me with DWP applications that make clear the little prospect there is that I will improve. Even the reason for requiring that acknowledgment is because of the stress and physical deterioration in my health that happens at every benefit renewal.

And when I have a rare 'good day' I still find myself thinking this means I might get better, even though logically I know this is just a 'blip'.

 

Anyone watch (listen?) to this, know who the doctor was? This nonsense has to be pushed back hard, it's either ignorance or incompetence, so basically incompetence. If they want to feign ignorance as their own personal excuse, fine, but to pretend this was a complete surprise actually hurts the very idea of expertise, especially as those "experts" currently stand in opposition on the same issue against the very people who did predict this.

It's seriously amazing that two simultaneous realities exist side-by-side at the same time, with tendrils visibly extended between the two.

https://twitter.com/user/status/1429755832988803075


I mean... how can anyone actually use this as defense? Especially as long haulers are really growing up to the decades of failure that preceded this. The best time to rip the bandaid was 17+ months ago but now is the 2nd best time.

https://twitter.com/user/status/1429760566315323395


Great jobs, quacks. You really did a number here. You actually made medicine worse, doing nothing else but simply being there.

 

https://twitter.com/user/status/1429620499043086343

 

Coronavirus: Young long Covid sufferers lead vaccine drive
23 August 2021
https://www.bbc.co.uk/news/uk-58301011

 

https://twitter.com/user/status/1429826653874794500

 

ChoosePT Physical Therapist Living With Long COVID Shares His Story and Clinical Expertise

Ted DeChane is a physical therapist with Long Covid and part of Long Covid Physio. In this podcast he tells his story and the new insight he's gained by his own experience and getting in touch with colleagues who also suffer from Long Covid. ME/CFS is mentioned briefly as a patient community advising Long Covid patients to Stop.Rest.Pace.

quote:
There's more to physical therapy than just exercise and I think we need to embrace the education rest, pacing, adaptation side of things too.

 

The idea that the vaccine is curing LongCovid in many patients seems to be rather spurious at the moment. It's unfortunate that researchers like Akiko are just tossing out unfounded claims.

 

This article starts out well:

And then this:

No doubt Wessely wants to bring the same rigour he brought to ME/CFS and GWS research to Long Covid.

 

That does call into serious question the good faith of the Imboden, Canter, Cluff research into the Asian flu epidemic in which the long term sequelae were considered psychiatric after a follow -up period of about six weeks. And that proved to be the basis for much of the idea which spread from the US to the UK in the 1980's. One wonders why.

 

I think I remember comment on the forum that one day you should write a book, and I think I remember you responding that you wouldn’t. That’s a perfectly good decision and understandable, of course, but if one day you change your mind and are also able to do it, or are able to contribute your research to someone else’s, I think that would be a good thing.

 

"she & other GPs don't believe ME is a postviral illness"
In my experience most people are completely oblivious to the fact that most ME cases are post-viral, and in a recent conversation someone said to me 'but then why didn't they research why some people get it (ME) and others don't?' Why indeed.

 

It has always been about "do as I say, not as I do". His point is valid, long-covid needs to be studied with rigour and vigour. I just wish someone bothered to do a large prospective community based study that covered a healthy cohort BEFORE they got COVID.

 

How many elephants can you actually fit in a room ?,

 

All of them.

If you can't do it now then just wait a bit and they'll all fit.

 

https://www.healthrising.org/blog/2021/08/24/nath-long-covid-problem-crisis/. I am not sure if this material has appeared anywhere on this site. Cort has prepared a summary of Dr. Nath's talk. The latter is a neuroscientist. He addresses long covid and ME. Nath talks of damage (permanent??) in various areas.

Also, there is one moment there where Nath suggests a possible treatment for ME. ("After stating that antivirals might be a possibility, Nath suggested an immune treatment regimen that has been discussed (but perhaps not implemented) in ME/CFS: you knock the innate immune system down and pump the adaptive immune system (T-cells and interferon response) at the same time. One of the reasons that this treatment approach has not been taken in ME/CFS may be because of the difficulty physicians have in justifying it, but with the amount of research going into long COVID, the studies will show up that will allow that to happen in long COVID, and eventually in ME/CFS.").

I'm eager to hear what folks here have to say about his presentation. (If this material appears elsewhere, please move this post or delete. Thanks)