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

https://twitter.com/user/status/1456405138906701824

 

There is a webpage on that under 'Guidelines in Practice. It has a caution about exercise and mentions the NICE guideline for ME but otherwise it is pretty much the same old, same old BPS-style 'holistic' approach with talking therapies and advice from physios on exercising back to health.

There is an ironic sentence.
'Remember, you are just as much an expert as anyone else because there is very little guidance.'
In other words nobody really knows what they are doing so this bullshit is as good as any other.

Everyone wants to be helpful but that is half the problem. What we need are some facts and some realism.

 

Thank you!

That helped me find this summary of a talk by dr. Harsha Master from the Royal College of General Practitioners annual conference 2021 with more details of how they work:
https://www.rosecottagedoc.co.uk/post/red-flags-in-long-covid

 

Merged thread

Washington Post: Could long covid unlock clues to chronic fatigue and other poorly understood conditions?

Health
Could long covid unlock clues to chronic fatigue and other poorly understood conditions?

By Frances Stead Sellers
Today at 7:00 a.m. EST

https://www.washingtonpost.com/health/2021/11/07/long-covid-fatigue-research/

(...)

In February, NIH Director Francis S. Collins said the $1.15 billion investment in research would go beyond long covid to “improve our understanding of other chronic post-viral syndromes and autoimmune diseases, as well as other diseases with similar symptoms.”

Walter Koroshetz, director of NIH’s National Institute of Neurological Disorders and Stroke and co-chair of the new initiative, said his and other departments have been collaborating on ME/CFS for several years but with little success, in part because the initial infection was often unclear and the symptoms diffuse. Now, Koroshetz said, covid is providing scientists with a “natural experiment.”

“This is our best chance to figure out ME/CFS,” Koroshetz said, “with the resources and an army of people.”

etc,

 

I’m ducking and weaving.
I’m twirling, I’m whirling.
A puff of smoke,
wave of my cloak.
On my dust you all choke.

 

The least relevant comment is from an NIH researcher, and somehow this is a perfect metaphor for everything. But overall a good article.

As for the lucrative snake oil market: it only exists because medicine is especially fond of a special type of snake oil and can't let go of it. Doesn't help that some of the worst charlatans have MDs. That never helps.

 

Dear god what can we do to stop these headlines (“chronic fatigue”), especially when they are attached to an otherwise well-informed article!?

 

Unfortunately quotes Amy Proal, who has zero data, and not anyone from OMF, etc.

 

This is behind a pay wall, so I can't see how relevant or otherwise it might be.

She Died With Long Covid. Should Her Organs Have Been Donated?
https://www.nytimes.com/2021/11/07/health/covid-organ-transplants.html

 

The Lancet Global Surveillance, research, and collaboration needed to improve understanding and management of long COVID by Helen Ward et al

quotes:
A hidden epidemic of long COVID is possible given the challenges in access to care and uncertainty about diagnostic criteria—factors that will differ in their importance between low-income and high-income settings.

Patients report not being taken seriously by medical practitioners or refused referral to long COVID services.

These services remain limited and where they exist vary in scope, quality, and access to some therapeutic options. In the absence of diagnostic tests, long COVID is partly a diagnosis of exclusion, creating challenges for patients and carers.

Previous diagnoses of exclusion, such as chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome, are now better defined than in the past, meaning patients are more able to obtain acknowledgment, treatment, sick pay, or insurance.

...

Data from high-income countries suggest that ongoing symptoms after acute COVID-19 can occur irrespective of initial disease severity and are more prevalent in women, middle-aged and older adults, people with pre-existing health conditions, and those admitted to hospital with acute COVID-19,
although the latter might also reflect post-intensive care syndrome.

However, the pathophysiology of long COVID remains poorly understood with different mechanisms probably explaining the heterogeneous symptoms, including viral persistence, autoimmunity due to molecular mimicry, aberrant T-cell and humoral responses, and micro-thrombi.

Understanding the mechanisms and natural history of long COVID will inform diagnostic and therapeutic strategies, building on experience of other post-viral syndromes—eg, careful pacing in rehabilitation to avoid post-exertional symptom exacerbation. To date no antiviral or immunomodulatory drug has proven effective for the treatment of long COVID in trials.

 

Corona virus and blood donation:
https://my.blood.co.uk/KnowledgeBase/Index/coronavirus infection
https://www.blood.co.uk/news-and-campaigns/news-and-statements/coronavirus-covid-19-updates/

I can't see any mention of Long-covid patients.

But very long explanation here
"Long Covid : Coronavirus"

https://my.blood.co.uk/KnowledgeBase/Search


(ME/CFS patients, even those who have recovered are not allowed to donate blood in the UK).
"Myalgic Encephalomyelitis : Post Viral Fatigue Syndrome
I am sorry but unfortunately, we cannot accept a donation if you have this condition or if you have previously had the condition even if you are now recovered."

https://my.blood.co.uk/KnowledgeBase/Search

 

"ME/CFS and Long COVID: A Discussion between Dr. Avindra Nath and Dr. Takashi Yamamura"

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

Discussed here:Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

 

Dafuq? What hubris to publish this when not only the Lancet but Horton himself fought to deny us this, none of which is happening thanks to those very efforts. It's only because of LC that we are seeing some changes, none of which would have happened without it. Seriously in medicine truth matters exactly as much as in politics. Sometimes it does. Sometimes it's the least important thing. And no one takes any responsibility for what they say or do, and they don't even need to rewrite the past.

And the Lancet holds a special responsibility in this. And yet no one cares, decades were wasted along with millions of lives and no one cares, lives are so casually wasted on ideology.

Literally the whole PACE controversy, on which The Lancet is currently pushing both sides of this, although this latest one far weaker than its aggressive promotion of PACE. Amazing. Orwell was so wrong about having to rewrite the past, no one cares about blatant contradictions unless it affects them.

Honestly how is this all any different than picking and choosing political headlines to make a political point? Some studies say this, other studies say the opposite. People can pick choose from whatever opinion they hold and ignore any study that contradicts their viewpoint. And the truth hardly even matters to most, simply because they don't know it and wouldn't recognize it if it slapped them in the face. To which they would promptly lodge a complaint and have an op-ed published over the violence they suffered from the truth.

 

NPR New clues to the biology of long COVID are starting to emerge

quotes:

"It's still early days. But we believe that long COVID is not caused by one thing. That there are multiple diseases that are happening," says Akiko Iwasaki, a professor of immunobiology at Yale University who is also studying long COVID-19.

...

"We are finding elevated cytokines in long-COVID patients and we're trying to decode what those cytokines mean. We're also seeing some distinct autoantibody reactivity and are trying to find out what those antibodies are doing and whether they are causing harm," Iwasaki says.

Other researchers have produced similar findings. Dr. Steven Deeks at the University of California, San Francisco, found long-COVID-19 patients appear to have elevated levels of a cytokine called interleukin-6, suggesting they may be suffering from a state of chronic inflammation.

...

Yet another clue found in one subgroup of patients is an unusual pattern of activity by key immune system cells, such as as T-cells, which may support the idea that the virus is hiding in the body.

"That's a signature or pattern which could be consistent with a low-level, but persistent, infection in the long-COVID syndrome patient," says Dr. Igor Koralnik at Northwestern Feinberg School of Medicine.

 

The wheel has suffered from over invention for so long ....

 

I have no idea why medical unions are blamed here for something that 100% of institutions are failing at. I mean, sure, technically medical unions have a unique responsibility here but it's not to their members but are the duties of the profession, which they are 100% failing at and don't seem the least bit concerned with.


Unions guilty of a 'moral failure' in poor support for staff with long covid
https://www.hsj.co.uk/expert-briefi...ort-for-staff-with-long-covid/7031271.article

Few people outside of here understand why this physician chose to remain anonymous:

An HSJ reader commenting on the story quite rightly pointed out that many other NHS and care staff have developed long covid and are continuing to suffer. Described to me by a doctor this week as an ‘occupational disease’, it is continuing to cause huge, and in some cases, permanent, health problems for many people.

I have been approached by multiple NHS workers over recent weeks who have described the dreadful impact long covid has had on their health and also their working lives.

One, a doctor working in an NHS trust who wished to remain anonymous, described how they have been signed off work for 18 months and are still really unwell and not sure when they will be able to return.

“My lungs have been badly affected by covid so I still need prescribed oxygen, plus I also developed heart, gastric, neurological and chronic fatigue problems,” they said.

The doctor described how after encountering a lack of support from their trust they turned to three unions for support, but were told they would not be supported as long covid is considered a “pre-existing issue”.​

Just for themselves, though. Screw the rest, I guess, not their problem or anything like that:

He added the BMA is pushing for long-covid to be classed as an occupation disease and lobbying for a compensation scheme.
...
According to the ONS, over 100,000 NHS staff are thought to be suffering from long covid. This issue is not going away, and NHS Employers and unions have a duty to support staff and help them return to work. The service has a pragmatic, as well as a moral, duty to support those with long covid, it can ill afford to lose any staff at this time of unprecedented pressure. ​

This is how people discover that a "moral duty" doesn't mean jack squat, not even in medicine. Or even a duty, which is a very flexible term filled to the brim with terms and conditions.

 

The awful video where TC interpreted PEM as health anxiety in l9ng covid has been taken down

https://twitter.com/user/status/1459632130582097922