Long Covid in the media and social media 2022

[rvallee]

mumble mumble

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.

 

[rvallee]

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.

 

[Tom Kindlon]

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

.

 

[Hutan]

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.

Hopefully at least the Welsh National Opera are benefitting from some extra funds. I look forward to seeing the 'formal evaluation results due shortly'. What's the bet it's the results from a survey.

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.

Incredible. It's not clear from the excerpt but this community model appears to consist of private organisations making stuff up and then getting public funds to supposedly fill the void in care.

 

[Hutan]

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.

I just realised, the article is mentioning Long Covid, 'ME and Chronic Fatigue syndrome' and MS as all having a similar impact. This at least is good - so often multiple sclerosis is seen as having much more of an impact than ME/CFS.

 

[rvallee]

Montreal Gazette The link between long COVID and a medical mystery

quotes:

Once known as chronic fatigue syndrome, myalgic encephalomyelitis (ME/CFS) has long been poorly understood, overlooked and often stigmatized.

Now, early research suggests, up to half of all COVID long-haulers could meet the criteria for an ME/CFS diagnosis. And as experts probe the link between the two illnesses — and COVID-19 cases continue to accumulate — ME/CFS patients new and old are urging people to recognize how debilitating and life-altering it can be.

...

As early as the fall of 2020, the AQEM tried to raise the alarm about a possible link between long COVID and ME/CFS. In interviews, they warned people about the risks and pushed the government to prepare for the influx of ME/CFS patients they saw coming.

But they feel their calls went ignored, compounding years of frustrations.

For decades, Prud’homme said, people with ME/CFS in Quebec have felt neglected by the system, with little access to services or compassionate care, in large part due to health professionals not understanding the illness.

...


Even in the most conservative of estimates, he believes the pandemic will lead to the number of people with ME/CFS in Quebec — estimated to be more than 70,000 at the moment — nearly doubling in size.

“We weren’t equipped before the pandemic to take care of people with ME/CFS,” Moreau said. “So imagine now.”

Simon Décary, a researcher at the Université de Sherbrooke, expressed similar concerns. He describes long COVID as an umbrella diagnosis with clusters of different diagnoses that fall under it, including ME/CFS.

“We know there is a link, because we have the evidence of the overlap of the clinical symptoms,” Décary said. “But is it exactly the same biological process? That we don’t know yet.”

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.

 

[rvallee]

Not sure which annual neurology conference, but, thread:



On Long Covid:

 

[Kalliope]

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

 

[Kalliope]

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

 

[Kalliope]

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:

 

[Kalliope]

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

 

[rvallee]

UK Peer in the House of Lords:



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

 

[NelliePledge]

UK Peer in the House of Lords:



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

There was also that excellent brief debate in the Lords not so long ago when the group of Baronesses shredded the newly appointed health spokesman. If anyone is going to contact her it would be worth mentioning Baroness Finlay, Baroness Thornton and the others who spoke as good contacts.

 

[Wits_End]

This looks interesting, but the article is paywalled

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

Odd. I can read it just fine.

 

[ahimsa]

This looks interesting, but the article is paywalled

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

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

 

[ahimsa]

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.

Live Interactive Event: Tuesday, April 5, 10 am Pacific/1 pm Eastern

A panel of experts will discuss the paper's findings, as well as the financial, social and emotional impact of Long Covid and Disabling Long Covid. They will cover how workplaces and communities are facing challenges, and what support is needed moving forward to provide adequate support. Advanced registration is required:

https://us02web.zoom.us/webinar/register/WN_X35kzVCEQECQvs4x4MhRvA

Panelists:
Oved Amitay
President and CEO, Solve M.E.

David Kotok
Chairman and Chief Investment Officer, Cumberland Advisors

Emily Taylor
Vice President of Advocacy and Engagement, Solve M.E.
Co-Author: Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost

Philippa Dunne
Project Manager, Adroit Data and Insight
Co-Author: Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost

Melissa Smallwood
Graduate Student, Arizona State University: School for the Future of Innovation in Society
Co-Author: Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost

Megan Greene
Senior Fellow at Harvard Kennedy School; Global Chief Economist at Kroll Institute
(Moderator)

EDIT: Added website link for Long Covid Initiative

 

[mango]

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

What is the plan for all those who are suffering from postcovid?

Official statistics show that this winter has also seen a high level of infection in the country, caused by the more infectious omicron variant.

However, official Swedish figures do not tell us how many of those infected develop long-term symptoms.

No Swedish authority has been commissioned to carry out such a study, and it is unclear how many have only mild sequelae and how many are significantly affected in their daily lives. [...]

We want to draw the attention of the government, authorities and regions [mango: the local governments that are responsible for the healthcare system] to the fact that the increasing number of cases since omicron risks increasing the number of people with long-term symptoms.

We are already seeing signs of this in our networks, both among adults and children. Some of these will certainly spontaneously recover within a few months. But a not insignificant proportion will develop very long-lasting and disabling symptoms.

This number is in addition to patients from previous waves who never recovered. The fact that we in Sweden are "learning to live with the virus" - which from 1 April will not even be classified as a public health risk - means that the group of people with severe long-term illnesses is likely to grow.

There is no cure yet.

Meanwhile, there is no Swedish authority or expert group tasked with monitoring the growing knowledge of postcovid disease mechanisms and diagnostics. [...]

We therefore ask: What is the government's plan?

As patient advocates and expert patients, we propose increased ambition:

* Establish a national knowledge centre on post-covid. Knowledge and progress must be disseminated faster and better within the health care system than today, and also reach decision-makers so that they are given a proper basis for decisions.

* The national pandemic response must include post-covid care. So far, we have seen what happens when a new and large group of patients is to be included in the existing mandate. More expensive diagnostic tests risk being downgraded in favour of cheaper diffuse rehabilitation interventions.

Turning a blind eye to post-covid will not be cheaper in the long run. Neither for the individual nor for society.

As much as we would like to put the pandemic behind us, the consequences of the virus are something we as a society will have to deal with for a long time to come.

 

[mango]

Article in the journal of the Swedish Medical Association:

Ivo påtalar brister när Stockholms postcovidvård flyttades till Huddinge
https://lakartidningen.se/aktuellt/...kholms-postcovidvard-flyttades-till-huddinge/

A GP comments on this, on Twitter:

Andreas Thörneby @thorneby

Patients are abandoned, which is of course the main problem, but actually so are their GPs. There are limits to what is technically and competence-wise justifiable to do in a health centre, but we get no help. Zero.

Never seen such large groups of patients with such severe disabilities, possible exceptions in psychiatry and addiction care and perhaps for ME, where the door to specialist care is pretty much completely closed in the same way.

 

[Milo]

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.

 

[SNT Gatchaman]

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

• 22 million U.S. adults are living with Long Covid (LC) – close to 7% of the population.
• 7 million are experiencing Disabling Long Covid (DLC) – 2.3% of the population.
• As of January 2022, the cumulative cost of LC is estimated at more than $386 billion. (This estimate includes lost wages, lost savings and medical expenses incurred by individuals. It does not include costs incurred by businesses or government agencies.)