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

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.

 

There is. It says everything related to ME/CFS or PVFS is "out of scope". Another article (published in BMJ, IIRC) explained the reasoning: it said that they glanced at "the fatigue" but some LC patients "felt" it was different and related to organ damage. So that's it.

And here is her explanation for why she is not up-to-date on the topic of ME despite having just given a lecture on Long Covid and the relation to ME:

https://twitter.com/user/status/1349815915177762823


I am Jack's loud internal scream.

And from another tweet higher up: how was she just "set up" on the topic of fatigue? She spoke to an expert audience about a topic she admits herself not being knowledgeable about and attacked and blocked everyone who objects to basic factual errors and the dredging up of a fake controversy that is on the sole basis that there exist people who disagree with reality.

 

Thanks. I’ve been through the Guideline and I can’t find it. What page is it on? https://www.nice.org.uk/guidance/ng...ongterm-effects-of-covid19-pdf-66142028400325