Long Covid in the media and social media 2022

It's especially insulting knowing she would never think that in her clinical work. She would say the exact same line, except "nothing" instead of cancer. It's the entire basis of the BPS ideology that worry is worse than disease, all hits from the hopium bong.

I don't know someone manages to be this regularly impertinent and yet have been elevated so high in an important profession but it reveals dysfunction so profound that small fixes can't make a difference anymore. The tree's been poisoned for so long even the seeds are so loaded with it they leach it into the ground all around them.

 

Welshies? Welshires? Anyway, people living in Welsh. I don't like the sound of that. "Innovative" in the context of chronic illness care has similar tones to "opportunity" in military slang, it generally means nothing good.


Further £5m investment in ‘innovative’ Long-COVID rehabilitation services
https://www.deeside.com/further-5m-investment-in-innovative-long-covid-rehabilitation-services/

Rehabilitation services, which have developed using this model, include the Wellness with Welsh National Opera long-COVID programme, which accepts referrals from health boards. It is an online breathing and singing programme for people experiencing long-COVID in Wales.
...
Health boards will benefit from this further £5m, which will be used to continue delivering newly-developed rehabilitation services, enabling people to access programmes, such as the one provided by WNO.

It is hoped by the end of the next six-month period in July, health boards will have expanded the community model to treat and support people with other long-term conditions, which have a similar impact to Long-COVID, including MS, ME and Chronic Fatigue Syndrome.
...
The funding will also support the continuation of the self-management COVID recovery app and the All Wales guideline for the management of Long-COVID, which have helped to support people to self-manage their symptoms and provided healthcare professionals with up to date advice and learning to support the diagnosis and treatment of long COVID.

Health Minister Eluned Morgan said: “We are continuing to learn more about the long-term effects of COVID and how it can affect people in different ways.

“We believe our approach of treating, supporting and managing people through our unique service model is the most efficient and effective way of achieving the best outcomes for people experiencing Long-COVID.​

The combination of "we're learning so much" followed immediately by obvious evidence that the wrong lessons are being learned is basically one of the most iconic duos of this dystopian nightmare. Anyone who thinks this is the best they can do has no business doing anything important, standards in health care are unacceptably low.

Somehow I assume there's probably arts and crafts in that program... Like draw your symptoms, then ritualistically burn them and oh god I'm giving them ideas someone will absolutely try something this ridiculous.

 

Long first person piece in an Irish national newspaper by a journalist. Contains one mention of ME/CFS but disappointingly it is not in the context of saying Covid or other infections can cause ME/CFS

https://www.irishexaminer.com/opinion/commentanalysis/arid-40842005.html

 

This was a really good article. Solid all throughout. The journalist even found the the INESSS report (the 2010 report mentioned in the article) that exposed the same issues with ME. I made a few journalists aware of this recently, wonder if they found it independently or if I did this. Anyway, it shows that this was already known and should have been acted upon.

 

Not sure which annual neurology conference, but, thread:

https://twitter.com/user/status/1510385511675748352


On Long Covid:

https://twitter.com/user/status/1510385517250052100

 

Prof. Karl Lauterbach, Federal Minister of Germany for Health, refers on twitter to a paywalled article about Long Covid with the following comment (translated):

Unfortunately it is exactly like that, worth reading article in @SZ In a few years we will see full extent #LongCovid . Now everyone should try to avoid infection. Even if the course is mild, there is a risk that life will change. Nobody likes to hear it, but that's the way it is

I remember he wore a MillionsMissing T-shirt one year on May 12th

 

Opinion piece in the Guardian by Ravi Veriah Jacques
I have long Covid and despair that the UK government ignores its blight

Quote:

The underinvestment follows decades of underfunding for research into post-viral illnesses. Myalgic encephalomyelitis (ME), also known as “chronic fatigue syndrome”, affects 250,000 people in the UK. It has a similar array of symptoms to long Covid, including brain fog and fatigue. A study found that 46% of long Covid patients meet the diagnostic criteria for ME. Had we found effective treatments for ME, it is likely that we’d also now have treatments for long Covid. But ME too has been starved of research funding. Worse still, in the UK most of that funding has gone towards studies that understand post-viral illnesses as primarily psychological – rather than physical – and therefore requiring psychological treatments.


The climax of this deeply misguided approach was the 2011 Pace trial, a £5m study that initially claimed that cognitive behavioural therapy (CBT), a form of psychological rehabilitation often used for depression, and graded exercise therapy (GET) were effective treatments for ME. But when the trial data was finally made public after an extended campaign by ME patients, researchers quickly realised that the data did not support the conclusions. In November 2020, the National Institute for Health and Care Excellence published damning analysis of the Pace trial that found the quality of science had been “low” or “very low” and advised doctors not to offer ME patients GET or CBT.

Following this debacle, alongside the growing biomedical research into long Covid, we finally seem to be past the dark days of psychologising post-viral illnesses. But much damage has been done; research is decades behind where it should be

 

Ravi Veriah Jacques has also written a summary on twitter:

 

This looks interesting, but the article is paywalled

The Washington Post
How long covid is accelerating a revolution in medical research

- Patients, who have typically been only subjects in the research process, are becoming partners in it

 

UK Peer in the House of Lords:

https://twitter.com/user/status/1510677722758062080


Maybe she could be made aware of Marr's work. I searched the forum for her name and found nothing so this looks new.

 

Odd. I can read it just fine.

 

I saw @Wits_End post that they could read the article just fine, no paywall.

But here's a gift link (no paywall for 14 days) for anyone who is having trouble: https://wapo.st/3NRFmPY

 

Just saw this article, about a recent press release from the Long Covid Initiative [ a spin-off? or part of? the Solve M.E. Initiative ]

https://finance.yahoo.com/news/long-covid-nearly-7-u-190300358.html

There's an online event tomorrow, April 5, 10 am PDT, 1 pm EDT, 6 PM BST.

Short notice, but posting details in case anyone here is interested. Advance registration required.

EDIT: Added website link for Long Covid Initiative

 

Opinion piece in the Swedish newspaper Aftonbladet, by Lisa Norén, specialist physician, Doctors to Doctors Network (physicians with long covid) and Åsa Kristoferson Hedlund, President, the Swedish Covid Association.

Vad är planen för alla som lider av postcovid?
https://www.aftonbladet.se/debatt/a/JxAbW4/regeringen-utan-plan-for-dem-som-lider-av-postcovid

 

A GP comments on this, on Twitter:

 

Higher-profile COVID experts more likely to get online abuse

Surveys find scientists who appeared frequently in news media were most likely to report personal attacks or trolling

The short article features Fiona Fox from Science Media Centre.