Long Covid in the media and social media 2023

For the record, Dr Tedros Adhanom Ghebreyesus on Twitter on August 22, 2020:

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If my memory serves, this was the Twitter thread from three years ago, in which Janet Dafoe had offered to provide the WHO with research studies and discusions. I had also asked for the expediting of a coding issue within this thread. Ghebreyesus ignored my request and I don't think Janet heard anything at all from him or his WHO colleagues, either.

 

There was a huge drumbeat from the start to fully separate anything LC with ME/CFS or any existing known illness. It probably ended this very quickly, with lots of very angry experts saying they would have nothing to do with this. Although ironically, the only people who did accept that overlap was the quacks, but for the wrong reasons. Strange world.

It's still there, but the barrier has thinned out a lot. The overlap will be impossible to dismiss over time, it's just a matter of time and meanwhile it's worth taking shots at it, making it visible that all of that this could have been done right from the start, and it may create more urgency to act based on that.

Having so publicly and completely missed what was so obvious that huge numbers of people with zero medical training could see it like the damn Sun at high noon looks really bad, or at least it will eventually. It's a unique failure for an entire profession to be outpredicted so accurately this way. We have to embarrass the hell out of them for it.

 

Long Covid: Plugging the gaps
Amy Somerton and Holly Jeffrey – Assistant Psychologists with the Humber and North Yorkshire Resilience Hub – look to continue psychological care beyond the pandemic.

Long Covid: Plugging the gaps | BPS

 

The problem is not social understanding. It's medical understanding. Specifically because of the psychology-driven belief system where not understood = malingering. This entire discipline completely absolves themselves of the major role they play in continuing this perception, one that is taught to doctors. It's not random, and not some social or cultural oddity. It's a purposeful ideology.

All the money wasted on this would be far more beneficial if it was put on actually trying to solve them and build the medical understanding that will make the social misunderstanding that it causes disappear entirely. It's medicine that must look for a cure, and they aren't doing it exactly because this here is presented as not only good enough, but a full solution.

This is exactly like refusing to address poverty and hunger while putting money on therapy to deal with poverty and hunger. It's completely misplaced and does not serve the needs of those who are suffering.

 

that was the emoji I was looking for.
It's like sending psychotherapists to the frontline in wartime to 'help' those suffering.
And in this instance they are 'assistant psychologists'; so what, we're running out of actual psychologists now?
Social care is almost non existant now and we have 'assistant psychologists'?

 

Archived here. Eg:

 

CDC updating info with info which was relevent in 2020....
https://twitter.com/user/status/1687913438876495877

 

Just sharing this S/O in Mass ME's August Newsletter today

 

I have long covid. For the millions like me, the pandemic isn’t over.

https://www.washingtonpost.com/opinions/2023/08/09/madeline-miller-long-covid-post-pandemic/

 

At least, a main focus of Long Covid is really PEM. It makes the fanatical crusade of the ideologues so much more damning, especially with their bleating and whining about the NICE guidelines and backroom manipulations. It is THE feature of our illness. And they focused most of their career and efforts erasing it, simply cannot accept that what they don't understand still exists.

ME may not be getting the attention it deserves out of Long Covid, but PEM is. It's impossible to put it back in the box. There is still heavy resistance because that's not how medicine works, they don't know what to do with symptoms and until the physiology of PEM is understood there is little that can happen.

But at least the efforts can focus on the most important aspect. It's a damn shame they aren't yet, I don't think there's anything at all about it in the RECOVER initiative. But we have crossed the damn Rubicon. The rest of the journey ahead is long but there is no turning back from it.

 

The audio of Madeline Miller reading the article is excellent

 

Long covid an 'ongoing and active issue' in Ireland with 200 symptoms

https://www.irishexaminer.com/news/spotlight/arid-41200315.html

I think Prof Linnane gives a likely overly positive view of outcomes. He does have a conflict of interest. Also people with #LongCovid could stop going as they don’t feel it’s helping much & don’t want to spend any more effort/money

No mention of ME or #CFS.

 

Opinion | The next Covid surge is here. We can't ignore it.

https://www.msnbc.com/opinion/msnbc-opinion/long-covid-surge-2023-rcna97597

 

Obviously very very trivial again but I did see that Dr. Marrazzo (new NIAID Director) “liked” this below yesterday on Twitter from Madeline Miller who wrote the Washington Post feature on LC yesterday.

 

A look at her twitter feed shows attention to LC.

 

I sent the STAT News reporting to her yesterday, about NIH's underwhelming RECOVER trials.

She replied back "Thank you for the outreach. Really hope we can make some progress ASAP as I know many are suffering." Just sharing for visibility.

 

Cause of long COVID remains most troublesome question about the syndrome
Harvard Medical School

https://medicalxpress.com/news/2023-08-covid-troublesome-syndrome.html

 

Video from Germany with subtitles
Video

For discussion go to News from Germany where this is also posted.

 

Ror Preston is the lead data scientist at Visible Health.

Simon Wessely was president of the RSM a few years ago, which later awarded him for his career's work, including his ideological dedication to suppress the reality of ME/CFS and for pushing the gaslighting behavioral model of CFS. He remains one of the leading figures standing against Long Covid research and anything good for the millions suffering from LC will be terrible for his reputation.

For sure there will be arm-twisting happening behind the scenes.