Long Covid in the media and social media 2022

ITV news report

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

This post has been copled to the apheresis discussion thread here
Please go to that thread to discuss it to keep discussion in one place.

 

Spot on.

The article glibly skips over what is offered by the NHS:

Where's the investigation into the evidence base and safety of so-called NHS "approved therapies" like rehabilitation, breathing exercises, singing, CBT, mindfulness and other similar idiocy?

Having the NHS stamp of approval on a therapy does not mean that it's any more credible or safe than the other nonsense available from private clinics. Essentially this just boils down to the argument that the NHS should have a monopoly on Long Covid quackery.

 

I just found this link that might be of interest to those living in the US :

https://pascdashboard.aapmr.org/

It gives you estimates of how many people are believed to have PASC = Post Acute Sequelae of Sars-Cov-2 i.e. Long Covid.

 

The ugly truth of so-called patient-centered medicine: "Patient perspective could be incorporated". It's all PR, medical institutions don't care what patients think, they don't think we can bring any useful information, but they will call what they do patient-centered medicine anyway. Most governments are more accountable than this. These trade unions, unaccountable, unelected, wield far too much power.

For some reason, inexplicable, the present and future of medical care for children with Long Covid (in the UK, but it will reach farther and we know it) is determined by a single study involving biased ideologues who have worked their entire career to deny medical care to the chronically ill. You rarely see such brazen IDGAF level of shirking responsibilities, even in politics. It only works on highly controversial issues where emotions and ideology dominate.

https://twitter.com/user/status/1547987736388202496

 

Whatever your time zone, this is happening in a bit more than 1h after I posted this:

Direct link to webinar: https://pitc.zoomgov.com/webinar/register/WN_B7res8ipTXKLPbnkLcAEvQ.

https://twitter.com/user/status/1548014161770078209

 

Twitter thread on the webinar. Underwhelming doesn't even cover it, this is not a serious effort and it will yield nothing, it's too pathetic of an "effort". Unless something changes radically, I think it's time to say it simply and directly: medicine has already given up trying, and having found that it's essentially chronic illness, has no intention of doing anything more. Medicine is in complete dereliction of their duties. This is as far as they will take it, only gaslighting and failure. The hope that was there to begin with is over and done, the decisions have been made for us, without us, in secret behind closed doors by people who are completely unaccountable for the outcomes they create.

Which cements this failure, one long tradition dating back to the 19th century, as the single worst failure of expertise in human history, by a very wide margin. To come up face-to-face with the smoking gun that puts everything into focus, and literally refuse to bother, is just staggering. They really are content with the idea that "oh, look, this again, obviously can't immunological since it's happening during a pandemic, which is scary and worrying and stressful and anxious fear fear fear worry fear". It's more than a professional failure, it's a moral failure that is padded with nothing but cheap excuses and ignorance.

https://twitter.com/user/status/1548035140395315202

 

This is discussed in the latest TWIV.

Begins at 8.27

Prof. Racaniello says he understands why people got mad. Says asking about "tiredness" in questionnaires about long Covid is not specific enough, so it was not about minimising fatigue.

Rich Condit says people are rightfully sensitive as fatigue has been dismissed. XMRV-saga discussed. But says they learned a lot about CFS from it.

Racaniello mentions David Tuller writing on Virology Blog and reads an email from a listener summarising the criticism of last episode.

https://www.youtube.com/watch?v=4xZeITvXyK0

 

Letter in Lancet Psychiatry at https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(22)00240-1/fulltext

https://twitter.com/user/status/1548007550766813185

 

https://twitter.com/user/status/1548609845766639617

 

I have a number of tweets arrived by email referring to the NIH turning down a grant application from Putrino Labs. Perhaps someone who tweets can post something clearer


@PutrinoLab
·
15 Jul

I just want everyone to know that
@resiapretorius
,
@GeneticHeartDoc
and I had a huddle post-decision and we are resolved to make this study happen by any means necessary: it is too important to let wait. A humble, heartfelt thanks to everyone suggesting crowdfunding:


@PutrinoLab

Watch this space. We will not be slowed down. We will not abandon the #LongCovid, #MECFS and infection-associated chronic disease community. We are here to change and disrupt this space forever. NIH: I’ll see you in hell. Happy weekend everyone else!

 

Experiencing Long Covid As A Physician And A Patient
by Dr. Zeest Khan, cardiothoracic anaesthetist - writing in the California Society of Anesthesiologists

 

Posts by two other (now ex) healthcare professionals.

https://twitter.com/user/status/1549071041607213058


https://twitter.com/user/status/1548768384317366276

 

This is a long article from Australia about the difficulties people with Long Covid are facing in getting financial support.

While governments here have had their heads in the sand when it comes to post-viral illness, it's good to see actuaries publicising the long term costs.

[no mention of ME/CFS]

 

There was a hearing in the US Congress to a subcommittee working on overall pandemic response, addressing Long Covid.

Live-tweeting thread of the hearing:
https://twitter.com/user/status/1549375562187251713