Status
Not open for further replies.
I'm not sure if this has been posted before. Mentioned on BBC News today:

Imperial College Healthcare working with English National Opera on singing programme for Covid-19 patients
05th Aug 2020
https://www.imperial.nhs.uk/about-us/news/eno-breathe

Imperial College Healthcare NHS Trust is working closely with the English National Opera (ENO) to develop an online social prescribing intervention that will provide support to people recovering from Covid-19, in the first partnership of its kind between a leading arts organisation and an NHS Trust.

Working closely with Dr Sarah Elkin, who is clinical director for integrated care and a respiratory consultant at the Trust, the ENO have developed an integrated six week pilot programme of singing, breathing and wellbeing aimed at supporting and enhancing the recovery of patients who are still experiencing symptoms after their initial Covid-19 illness.

Initially being trialled in a pilot programme across London, the ENO and Imperial College Healthcare plan to expand nationwide.

https://www.bbc.co.uk/news/av/uk-55819360
English National Opera lessons for long Covid sufferers
 
January 28.



https://emergency.cdc.gov/coca/calls/2021/callinfo_012821.asp

For some people, the effects of COVID-19 can last well beyond the immediate illness. Patients and clinicians across the United States are reporting long-term effects of COVID-19, commonly referred to as long COVID. Symptoms may include cognitive difficulties, fatigue, and shortness of breath. In some patients, critical illness from COVID-19 may be the cause of persistent symptoms, but many patients with long-term effects had mild or asymptomatic acute COVID-19 infection. During this COCA Call, presenters will share their firsthand experiences with treating long COVID, focusing on the pulmonary, neurologic, and psychological aspects. They will also describe their experiences with establishing clinics that provide care for patients with these long-term effects.

Target audience is medical professionals.

Running thread on this call, includes slides:



The full presentation: https://emergency.cdc.gov/coca/ppt/2021/012821_slide.pdf.

Not much to show for now. Interesting to see the same findings on white matter. Otherwise this is far too diverse to pin. Interesting to see the note on one slide over how patients almost never have a single "primary" problem but multitudes, which is a complete break from standard clinical practice.
 
I'm not sure if this has been posted before. Mentioned on BBC News today:

Imperial College Healthcare working with English National Opera on singing programme for Covid-19 patients
05th Aug 2020
https://www.imperial.nhs.uk/about-us/news/eno-breathe

https://www.bbc.co.uk/news/av/uk-55819360
English National Opera lessons for long Covid sufferers


And, for good measure, ENO's press release, with more details:
https://eno.org/news/national-rollout-of-eno-breathe-programme-for-people-recovering-from-covid-19/

Glad to hear they're doing something, because they seem to have been pretty quiet for most of the last 10 months, compared with other similar organisations :(
 
https://www.networks.nhs.uk/editors-blog/supporting-staff-the-emergence-of-2018long-covid2019

It is becoming apparent that Covid is not just a mild infection that goes away after two weeks but can leave sufferers with persist health problems for weeks and months. Data collected by ONS for the Coronavirus (COVID-19) Infection Survey is beginning to show the incidence of long term illness following Covid infection. They estimate that around 1 in 5 people testing positive for Covid will show post infection symptoms for 5 weeks or longer, whilst around 1 in 10 people will still show post infection symptoms at 12 weeks or longer.

Like SARS, Covid is leaving some people with significant and persistent physical symptoms characteristic of chronic fatigue syndrome. Sufferers report symptoms like muscle and joint aches, brain fog, memory problems, post exertion fatigue, shortness of breath and these symptoms do not appear to be linked to the severity of the initial infection experienced by people.

People who have experienced mild symptoms, who may not have been to hospital may not have a diagnosis but develop debilitating post-viral symptoms. This long-tail end of Covid is likely to present new challenges for managers endeavouring to maintain patient services over the next phase of the pandemic and beyond.

Data from the Covid Symptoms Study App show that patients can have these debilitating symptoms for many months. Clinicians are now describing this pattern of post infection symptoms after ‘mild’ Covid as ‘long-Covid’ because these symptoms can persist for months (possibly years) after infection.

“We don’t know about corona, but I think it will lead to many, many cases of post-infective fatigue syndrome.”

Simon Wessely, former president of the Royal College of Psychiatrists

The longer-term health after mild (non-hospitalised) Covid infection is 'frighteningly poor' says Michael Rutgers, the Director of Longfonds, the Dutch Lung Foundation; a charity dedicated to reducing lung disease. Longfonds conducted a survey of 1600 people with Covid-like symptoms. The average age of those who participated was 53 years and over 85% reported having good health before Covid. After their illness only six percent said they felt well. More starkly half of the respondents reported that they were no longer able to exercise with more than 6 in 10 of those surveyed reporting they have difficulty walking and 95 percent reporting problems with simple daily activities. Ninety one percent of respondents reported that they had never visited or been admitted to hospital, and four in ten did not get diagnosed by a doctor. They are effectively invisible.

Full article can be read via the link given. It is primarily aimed at NHS workers.

Edit: Apparently the Wessely quote is quite old and comes from this article:

https://www.newscientist.com/articl...navirus-trigger-post-viral-fatigue-syndromes/

The article points HR managers to ME/CFS resources (ME Association and BACME).
 
Last edited:
Weird how they make no mention that Sir Simon Wessely is famous in large part because he solved post-viral fatigue syndrome when quoted on an article about this very topic. No mention that he has famously developed safe and effective treatments for it, commonly used in standard clinical practice and assumed to be effective (don't ask for evidence though). There's even a whole public controversy over this, with the NHS and UK medical establishment insisting that he is 100% about this, hence why it has been used in clinical practice for years.

This is an article published by the NHS. And they don't even mention him being the "world-leading expert" on this very topic. The NHS has spent billions in resources from his and his peers' work on this topic and its derivatives, adopted his opinion as a fact and educated its own trained doctors pretty much straight from the source.

How weird. Almost like his entire "expertise" is widely known as a sham, such that no one expects him to have any useful knowledge of it when it counts. He is just quoted generically, here used to imprint the idea of "think psychiatry" and no more, with a platitude of no more usefulness than tossing a coin. Will it, will it not? This expert doesn't know. This expert who has explained and solved this very problem for which no solution or explanation exists.

It's like the movie Brazil, except instead of being the government it's medicine.
 


It's true, but just as we should not assume that the ME/CFS-like long covid cases are ME/CFS, we should also not assume that they are distinct. They could be the same illness. The question will need to be clarified with research.
 
Last edited:


It's true, but just as we should not assume that the ME/CFS-like long covid cases are ME/CFS, we should also not assume that they are distinct. They could be the same illness. The question will need to be clarified with research.

Interesting the way she says she has more understanding of “these chronic conditions” (just after ME and CFS mentioned). Makes me wonder whether she might have been at least somewhat dismissive of them in her head which might help explain why she has seemed fairly desperate to keep them separate.
 
UNDARK - When Children's Covid-19 Symptoms Won't Go Away

Contains interviews with several patients and experts, including Amy Proal:

While she cautions that researchers simply cannot know whether the long-haulers will become life-longers, “it’s very unlikely,” she says, that SARS-CoV-2 would be the one virus that doesn’t have an associated chronic condition.

and Leonard Jason

“We’re going to need to develop a training manual to help professionals deal with this crisis,”
 
something that I've noticed is that where long-covid is concerned people tend to talk about neurological
problems, whereas with ME/CFS it tends to get called cognitive problems.
I know there is a medical distinction between the two but more often than not 'cognitive' tends to be more associated with mental health issues (eg DWP disability assessment has cognitive problems in the mental health section).
Was using 'cognitive' rather than 'neurological' as far as ME/CFS concerned, part of the reframing when the cognitive behavioural model was adopted?
 
Last edited:
A pretty good New Zealand article (audio or transcript)
https://www.rnz.co.nz/national/prog...81716/covid-long-haulers-fighting-to-be-heard

"Right now my main concern is: I want long Covid to be formally acknowledged by the government so people can stop thinking that youth and good health offer an ultimate protection against the virus, you know? "I never thought I'd be in this position, still having effects one year on, and I was so young and healthy. "If they formally acknowledge long Covid we can stop the belief that Covid only causes death in old people - that's not the only outcome of the pandemic.

"I want recognition and, yeah, I want research. I want us to be studied so we can actually understand what's going on." A statement from the Ministry of Health says it is actively monitoring the longer term outcomes of Covid-19 infection. It is considering options for establishing a project to follow-up New Zealanders who have had the virus. The ministry is also considering funding projects relating to long Covid.
 
Last edited:
Continuing on that thought, it's worth keeping in mind that the current vaccination strategy will eventually make LC the dominant problem. Not that the strategy is bad, but without recognizing the massive public health crisis LC represents, that once the more vulnerable populations are vaccinated it's safe to basically take a natural herd immunity, which no doubt many countries will do, the problem will be maximized. Many already are on that path anyway.

Because right now the schedule is set so that the most vulnerable to LC are those who will be vaccinated last. Which is OK, but highly problematic with medicine still in denial that this is a serious problem. Too many people assume that vaccination is the end. Not even close.

But it's very hard to give legitimacy to LC without recognizing the existing ongoing crisis of chronic illness, which gives huge incentives to keep dismissing it. Which would guarantee the worst outcome for everyone, health care systems included. And governments, millions of disabled people in the prime of their lives is a pretty bad fiscal policy.

Likely this will vary between countries. It's clear that many European countries are too deep in the BPS rabbit hole to undo it without massive embarrassment and so have even stronger incentives to deny the whole thing.

Ignorance is only bliss to those who never face the consequences of that ignorance.
 
something that I've noticed is that where long-covid is concerned people tend to talk about neurological
problems, whereas with ME/CFS it tends to get called cognitive problems.
I know there is a medical distinction between the two but more often than not 'cognitive' tends to be more associated with mental health issues (eg DWP disability assessment has cognitive problems in the mental health section).
Was using 'cognitive' rather than 'neurological' as far as ME/CFS concerned, part of the reframing when the cognitive behavioural model was adopted?

think this might have already been posted somewhere

upload_2021-2-1_14-0-39.jpeg

eta: found the pic in a recent tweet; I don't know the source.
 
I don't think this... whatever this is... deserves its own thread.


Long COVID and the importance of the doctor–patient relationship

https://bjgp.org/content/71/703/54.full

Helen Atherton, Tracy Briggs and Carolyn Chew-Graham


One of the RCGP’s current priorities is ‘relationship-based care’,18 and the patient–doctor relationship is vital in the management of people with long COVID. GPs need to listen to people with persisting symptoms following acute-COVID infection, offer empathy and support, and most importantly, help them to navigate the developing referral pathways — acknowledging that currently this may involve referrals to different specialties. The GP must support the patient, and their families, in ‘putting it all together’.
Unfortunately de-medicalizing chronic illness means there is no possibility of a doctor-patient relationship. It is currently hostile, based on complete control over our lives and completely deaf and indifferent to what we say or happens to us. That's not a relationship, that's abuse.

No idea what the point is of publishing that. It says nothing of value, just a bunch of words and opinions from people who have claimed this very thing as their expertise, yet somehow are allowed to pretend they also know nothing of it. If it weren't for double standards, these people would have none.
 
think this might have already been posted somewhere

View attachment 13205

eta: found the pic in a recent tweet; I don't know the source.
It's from page 25 of this
Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact
Hannah E. Davis1 *, Gina S. Assaf1 *, Lisa McCorkell1 *, Hannah Wei1 *, Ryan J. Low1,2*, Yochai Re’em1,3*, Signe Redfield1 , Jared P. Austin4 , Athena Akrami1,2*
https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2.full.pdf
 
Mainly about Lyme disease but mentions ME

Long-Haul Covid and the Chronic Illness Debate

What persistent Covid cases might have in common with chronic fatigue syndrome and Lyme disease, and why it matters.

For instance, one possible parallel to what long-haul Covid patients are experiencing is myalgic encephalomyelitis, commonly known as chronic fatigue syndrome — a debilitating and mysterious affliction that’s increasingly understood as an autoimmune-related condition, in which the body’s own defenses seem to be constantly flaring, independent of actual infection, in ways that consign people to fatigue, brain fog and incapacity.

https://www.nytimes.com/2021/02/02/opinion/long-covid-lyme-disease.html
 
Status
Not open for further replies.
Back
Top Bottom