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

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Here's the Swedish Social Insurance Agency's current view on long covid.

Hundratals covidsjuka nu sjukskrivna ett år
https://tt.omni.se/hundratals-covidsjuka-nu-sjukskrivna-ett-ar/a/dlqvlO

Google Translate, English
Google Translate said:
Hundreds of covid patients now on sick leave for one year

In the next few weeks, many long-term patients in covid will have been ill for more than a year.

Many have changed their diagnosis during the year. One in six is now instead on sick leave for mental problems.

- We do not know if the change in diagnosis is a result of covid, or if it is that you are actually healthy from your covid disease and then have fallen ill with a completely different disease, says Terese Östlin, national insurance coordinator at the Swedish Social Insurance Agency.

The group of long-term patients with covid - with symptoms such as exhausting fatigue, prolonged fever, breathing problems and palpitations - confuses the healthcare system. The exact number affected, no one knows for sure. But according to new figures from the Swedish Social Insurance Agency, there are at least 4,600 people who have been on sick leave for covid-19 for at least three months. [...]

- There is a risk that the doctors have difficulty substantiating their sick leave to us, which in turn may lead to us not having sufficient support to be able to grant sickness benefit, says Terese Östlin.

The Swedish Social Insurance Agency has not reported how many long-term patients in covid-19 have been rejected so far. Of all those who have ever been on sick leave for covid, however, the proportion of rejections is low, around 3 percent.

Change diagnosis

After a year with the corona pandemic, another trend can also be seen: The longer a covid-related sick leave lasts, the more widespread the diagnoses become.

Of the more than 4,000 long-term patients who started with a covid-related diagnosis, more than four out of ten have changed diagnosis.

Today, around 800 are instead on sick leave for mental illness, 300 for problems with joints and muscles and another 800 for other diagnoses, such as diseases of the nervous system and diseases involving the heart and vessels.

TT: Is it even right to talk about long-term illness in covid, when the diagnoses are so widespread?

- It is a very difficult question and really a medical question. But the reason why we chose to include them in these statistics is because, as we understand it, it is difficult to know which sequential diagnoses are due to covid-19, says Terese Östlin.

Unknown numbers?

In total, the group of long-term sick people with sickness benefits makes up a very small proportion of all those confirmed infected with the coronavirus, only seven per thousand. However, the Swedish Social Insurance Agency does not rule out that the problem is bigger than that.

- The vast majority of people who suffer from covid do not become seriously ill, but there may be people who have long-term covid and who have not been judged to be entitled to compensation from the health insurance, says Terese Östlin. [...]

Long-term illness

How many people today are long-term sick in covid?

Answer: About 4,600 people have illnesses that are longer than 90 days.

How many are approaching day 365 in health insurance?

Answer: A total of just over 1,500 during February – May.

Everyone has started with a covid-related diagnosis, but the longer the sick leave lasts, the more widespread the diagnoses become.

In total, almost 680,000 people in Sweden have been confirmed infected with covid-19.

Source: Swedish Social Insurance Agency
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Long covid: let’s learn from profession’s record with CFS/ME patients
due in part to the historical stigma associated with ME, long covid patient groups are ‘wary about hitching [their] wagon’ to the CFS/ME community says Claire Hastie, founder of the patient advocacy group Long Covid Support.
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The relationship between CFS/ME patients and patient groups and the medical profession has been turbulent. The term ME — “myalgic” referred to the muscle symptoms; “encephalomyelitis” referred to the various neurological symptoms — was coined in the 1950s. In 1991, the influential Oxford diagnosis criteria redefined ME as Chronic Fatigue Syndrome (CFS), and there was renewed focus on the psychological bases for syndrome.

The 2007 NICE guidelines for diagnosis and management of CFS/ME reinforced a ‘damaging’ position for GPs that the syndrome was principally a psychosocial condition
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Dr Nina Muirhead, a dermatologic surgeon in Buckinghamshire who developed ME in 2015 and has consulted on a CPD Training Course for Medical Professionals about the condition, welcomes the attention and research funding that long covid has attracted, but believes there are inherent risks in encouraging GPs to see CFS/ME and long covid through the same lens.
“My fear is that patients with post-traumatic stress from covid, who would benefit from psychological interventions, will get labelled as having ME and therefore be denied treatments that might benefit them.”
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Muirhead says that the symptom distinctive of CFS/ME — post-exertional fatigue — should be the first ‘red flag’ for GPs and a key learning from CFS/ME, and that ‘pacing’ an energy management method referred to in the draft of the 2021 NICE guidelines for CFS/ME, should be advised in cases such as these.
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https://sallyhowardwrites.medium.co...on-s-record-with-cfs-me-patients-6dd8fc905ef1

@EducateME is this an accurate report of what you said?
 
Young person with long COVID after mild disease
https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(21)00123-5/fulltext

She also worries that she could end up with chronic fatigue syndrome (CFS), limiting her work and personal life forever. To avoid having complete energy slumps, she follows advice for patients with CFS: prioritise, plan, and pace. “I plan my tasks one by one, and my day based on energy levels. I can't plan the day before because I never know how I'll feel until I wake up”, she explains, adding “I feel cold all the time, and have muscle twitches and reflux and am now taking various medications that I never used when fit and healthy”.
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Nature: US health agency will invest $1 billion to investigate 'long COVID'

The article doesn't mention ME, but underlines the importance of patient perspectives. It also links to the Nature editorial from last year urging to not repeat the mistakes that were done towards ME patients when it comes to Long Covid.

People who have experienced COVID-19 and its long-term aftermath, including some researchers, have mobilized to argue that better attention should be paid to post-COVID effects.

Such groups are worried about whether and how researchers will take their experience into consideration, says Shobita Parthasarathy, director of the science, technology and policy programme at the University of Michigan in Ann Arbor. “There is a concern among patients that their experience and knowledge won’t be taken seriously — that in the process of becoming a scientific inquiry, their experiences will not be used to guide the understanding of the condition.”
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Sly Saint said:
Long covid: let’s learn from profession’s record with CFS/ME patients

https://sallyhowardwrites.medium.co...on-s-record-with-cfs-me-patients-6dd8fc905ef1

@EducateME is this an accurate report of what you said?
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However due in part to the historical stigma associated with ME, long covid patient groups are ‘wary about hitching [their] wagon’ to the CFS/ME community says Claire Hastie, founder of the patient advocacy group Long Covid Support. “There is an extra layer of symptoms that people with long covid report, such as breathlessness and organ damage, that aren’t shared with ME,” she says. “So we don’t want anything to be prejudged before the research is in.” Hastie adds that there is a stigma attached to CFS/ME that some people with long covid shy away from.
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Moved post.

Quote from a poster on Facebook who linked the article below.
'If true and he doesn't turn round and do a Prof Garner on us, this is big news. I'll post more on the relevance of this later but Prof Mansel Aylward is one of the main promoter of the biopsychosocial model of illness. Key in playing down longterm illnesses like ME and discouraging doctors not to investigate the causes of back pain.''


bbc.com
Covid: 'This virus was completely underestimated'
One of Wales' most senior doctors - who nearly died with Covid-19 - says the UK was unpre

https://www.disabilitynewsservice.com/former-dwp-medical-boss-makes-wca-pledge-to-protesters/
S'ir Mansel said he sympathised with the protesters, and himself now found the BPS model “unsatisfactory” and believed it “no longer addresses the real needs of disabled people and the exclusion of disabled people from society”.

'He said the “social” element of the BPS model had been “neglected” and that he had a personal “distaste” for the medical model, which focuses on people’s impairments as the cause of their disability......'

This post has been copied and subsequent discussion moved to
Mansel Aylward on BPS, ME/CFS and Long Covid
 
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New article in the Guardian featuring Rachel Pope and @dave30th's friend Carolyn Chew-Graham.
https://www.theguardian.com/world/2...nasty-stuff-the-people-living-with-long-covid

Dr Chew Graham trots out the usual stuff about how awful it is for Long Covids but if they were only in her marvellous region they would be looked after wonderfully.

Carolyn Chew-Graham, a GP and professor of general practice research at Keele University, told the Guardian that while some specialist clinics were genuinely excellent, in other areas they were not yet operational or offered limited services. “It’s very, very variable.”

Rachel Pope expects miracles, which everyone is entitled to, but clearly not wanting to mention anything about people who were expecting miracles 20-40 years ago and have given up bothering. Apparently she thinks that there is 'a lot of nasty stuff' with Long Covid, whatever that means.

It seems to me that the Long-Covid campfire is getting to the stage where only Dr Pope and Dr Chew Graham can be bothered to sit around the dying embers in the drizzle. But I may be an old cynic.
 
There is another article on the same page saying there may be a million Long Covid sufferers, this time with Helen Stokes-Lampard as heroine. Fortunately we need not worry because 'NHS England said it planned to expand long Covid services this year and was still exploring what treatments worked best.'

Perhaps notably the doctor who suggested that there might be a million cases wanted to remain anonymous!

Can't beat the Guardian for facts!
 
The problem the NHS has with long covid treatment centers is there simply aren't enough mountains in the UK with no road access - all of the available ones having been grabbed ages ago by disability benefit assessment centers.

Okay, not 100% accurate - but might metaphorically be as accurate as many things in the media.
 
Jonathan Edwards said:
There is another article on the same page saying there may be a million Long Covid sufferers, this time with Helen Stokes-Lampard as heroine. Fortunately we need not worry because 'NHS England said it planned to expand long Covid services this year and was still exploring what treatments worked best.'

Perhaps notably the doctor who suggested that there might be a million cases wanted to remain anonymous!

Can't beat the Guardian for facts!
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This one and it has an interesting approach to separating from ME: it's not fatigue, it's exhaustion. Interesting word play.

NHS may face a million long Covid patients after pandemic

https://www.theguardian.com/society/2021/mar/05/nhs-long-covid-patients-after-pandemic​

Signs are already emerging that the health service is having trouble keeping up with the demand for care created by the sheer number of patients who are still displaying symptoms such as exhaustion, brain fog, chest pains and breathing problems months after having Covid.
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It will be so annoying to have people say LC is more than just fatigue, it's actual exhaustion, and therefore more serious than ME, which is obviously just fatigue. Ugh. Guaranteed this will play for a bit.
Doctors are also worried that it is not yet clear how the NHS will be able to successfully treat those with long Covid, given its sheer array of symptoms and ongoing emergence as a condition.
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It sadly is, just not the way people are thinking.
An NHS spokesperson said: “Long Covid is still a new condition, but dozens of NHS clinics across the country are rising to the challenge of understanding and treating it, bringing together expert clinicians to provide comprehensive assessments for thousands of patients, with more set to open over the coming months.
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They are clearly not, though. Not even close. It's amazing that two realities are co-existing here: nobody knows how to treat but the clinics are effective and should be expanded. Doublethink is truly amazing.
 
Jonathan Edwards said:
New article in the Guardian featuring Rachel Pope and @dave30th's friend Carolyn Chew-Graham.
https://www.theguardian.com/world/2...nasty-stuff-the-people-living-with-long-covid

Dr Chew Graham trots out the usual stuff about how awful it is for Long Covids but if they were only in her marvellous region they would be looked after wonderfully.

Carolyn Chew-Graham, a GP and professor of general practice research at Keele University, told the Guardian that while some specialist clinics were genuinely excellent, in other areas they were not yet operational or offered limited services. “It’s very, very variable.”

Rachel Pope expects miracles, which everyone is entitled to, but clearly not wanting to mention anything about people who were expecting miracles 20-40 years ago and have given up bothering. Apparently she thinks that there is 'a lot of nasty stuff' with Long Covid, whatever that means.

It seems to me that the Long-Covid campfire is getting to the stage where only Dr Pope and Dr Chew Graham can be bothered to sit around the dying embers in the drizzle. But I may be an old cynic.
Click to expand...

Pray what are these "specialist clinics were genuinely excellent" dispensing and has it been validated [and not by GRADE]?

Or is it just the fine Doctors who lead them?
 
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