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

How do we get through them that it is not the government or the public that has to be convinced to take this seriously? That it's medicine that needs convincing and that it is impossible to do so without acknowledging and fixing the fact that tens of millions already live with these exact symptoms that have been mocked, trivialized and discriminated against forever.

Some badly want to separate themselves from us, not realizing that it's a self-destructive effort that helps no one, even harms them personally. I'm sure they are terrified of the possibility of being crushed by the somatization fad, hence the desperate need for a full and total separation from the much larger crowd of chronic illness. But it is precisely because it is already many times larger than the blip of Long Covid that any chronic illness, new and old, cannot be taken seriously without breaking the entire systemic failure down.

It's frankly odd to have this message of "the public must know of this", when it is the job of health care to do this. Without convincing health care systems, there is no path forward, as medicine will simply block anything and everything that goes against the psychosomatic ideology.

Maybe showing them what the FND/MUS folks are saying? And how it precisely describes chronic illness, that it is why they were gaslighted to begin with. Basically a summary of "this is what those people genuinely believe" and how it's the very thing that is ruining their lives, hence explaining both problems as branches of the same poisoned tree.

The government will not communicate to the public what its own medical advisers are telling them to ignore and explicitly trivialize. It is simply not going to happen. It would defeat the very purpose of having expert advisers.

https://twitter.com/user/status/1349049149858193410

 

Long Covid: Virus 'like Russian roulette' for young and healthy

https://www.bbc.co.uk/news/amp/health-55635451

Not much new to this same old story that may as well be about ME, or fibromyalgia, or dysautonomia, or etc., if not for the context:

It would be more accurate to this that this was one of those "chapter left blank on purpose" thing. Decades of "why do you reject a psychological explanation?" have lead to this. Oops. And obviously this group of GPs is well aware of the whole issue with ME, chronic fatigue and pain as well as FND/MUS and how they fall exactly under the definition, it was literally written based on chronic illness. And instead of fixing this, they want an exemption for themselves.

I saw a few times the APPG live stream and I haven't seen a single person with knowledge of the background and the link to chronic illness in general or ME specifically. Not a single one.

 

https://twitter.com/user/status/1348967091525853187


Wait, I thought people with chronic illness aren't supposed to do that. Weird that they would "enable their sick role".

 

Rapid Response from Patient Advocate Ian Stirling
https://www.bmj.com/content/372/bmj.m4721/rr

more at link.

Edited to shorten quoted section and add direct link.

 

And a second Rapid Response, in addition to the one above.

This guideline needs a bit more nuance - Returning to physical activity after covid-19

https://www.bmj.com/content/372/bmj.m4721/rr-0

No mention of ME in this one.

 

Otago Daily Times (14/1/21): Post-viral illness thrust centre stage

Nothing new here, just a quite sensible opinion piece looking at the similarities between long Covid and ME and at the differences in how they're being treated or, in the case of ME, have been treated/maligned/ignored.

Still, the article is welcome since neither long Covid nor ME get a lot of media attention in NZ, and the little dig at the end at Covid complacency is sadly well warranted.

Full article here: https://www.odt.co.nz/opinion/post-viral-illness-thrust-centre-stage

 

Doctors suffering from long Covid believe official treatment is misguided
Jerome Burne

https://www.irishnews.com/lifestyle...ieve-official-treatment-is-misguided-2180921/

 

The long covid debate is about 10 minutes in on parliamentary TV and should run for approx 1 hour 20 minutes total.

https://parliamentlive.tv/Event/Index/80be651b-a5d0-42df-bb35-c6deacabe29f

 

Code:

https://twitter.com/PublicPolicyUoS/status/1349718147587330048

https://twitter.com/user/status/1349718147587330048

 

Well Jo Gideon MP wants to treat brain fog with walks by the River Trent!

Her whole speech was nonsense.

They cut off Carol Monaghan due to short time limits but she spoke well. There have been a couple of good mentions of M.E. Andrew Gwynne spoke well of his own experience of Long Covid.

 

Some mentions of ME
https://twitter.com/user/status/1349733484567224324

https://twitter.com/user/status/1349736365685051394

https://twitter.com/user/status/1349739277442187264

https://twitter.com/user/status/1349744937806520321

 

"treated ME"?

Still treating pwME, nothing's changed from my PoV.

 

Yesterday, PBS Newshour had a segment on Long Covid. No mention of ME, still at the personal interviews stage. I am really looking forward to some investigative journalism some day, individual interviews are a lazy way to report on something affecting millions.

https://www.youtube.com/watch?v=tmr3JbnY1E4

VICE news also posted a report. No mention of the context that millions are already suffering the same kind of illness.

https://www.youtube.com/watch?v=RkfMTIiJ2nM

 

Immune determinants of COVID-19 disease presentation and severity

https://www.nature.com/articles/s41591-020-01202-8

Apart from the differences in severity among patients with acute COVID-19, it is now clear that a number of other outcomes are possible after an initial infection with SARS-CoV-2. After a long period of intensive care and mechanical ventilation, general anesthesia and severe illness, it is not surprising that long rehabilitation periods are needed14.

However, it is now also clear that some individuals with milder initial symptoms of COVID-19 can suffer from variable and debilitating symptoms for many months after the initial infection15,16. This condition is popularly referred to as long COVID. An exact definition is lacking, but typically symptoms with a duration >2 months are considered long COVID. The condition involves a range of symptoms such as persistent fatigue, myalgia, autonomic dysregulation manifested as postural orthostatic tachycardia syndrome, abnormal thermoregulation, intestinal disturbances and skin manifestations17.

This post-COVID syndrome bears resemblance to postinfectious syndromes that followed outbreaks of chikungunya18 and Ebola19, for example, and selected symptoms overlap with myalgic encephalomyelitis, a disease that is also often triggered by infection and immune activation20 and manifests as a dysregulated autonomic nervous system and perturbed immune parameters21.

More research is needed to understand the pathogenesis of all of these postinfectious conditions, and long COVID offers a unique opportunity to perform such studies in larger numbers of individuals, all infected by the same virus during a limited time frame.​

It's really weird how mononucleosis is so rarely mentioned despite being the most well-known of it. I guess because of the obsession with fatigue and nothing but fatigue.

​

 

Long-COVID Cases Rise as Stigma of Chronic Fatigue Taunts

You have to be registered with Medscape to read the article.

https://www.medscape.com/viewarticle/943886

 

Great article! It still understates some details, describing as "frustrating" circumstances that are often deadly, and overplays the efforts that were made to solve it, especially the CDC's work at Lake Tahoe. But they asked the right people: Nath, Hornig, Moreau. Lots of focus on PEM and how it's the defining feature, not fatigue.

It's really sad that Molodofsky couldn't pursue his work from SARS. He was really on to something.

 

So it appears she may be claiming that a patient wanted her to promote graded exercise therapy and criticise critics of the PACE Trial etc. to a mixed audience including some people who might believe her. Doesn't seem that likely.