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

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rvallee said:
Pretty good. It's really fortunate that this happened at the tail end of years of efforts. Even though those efforts were not accomplishing anything, it set the stage for the NIH to be the only serious player.
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Agree.. it’s a great article. And the fact that Koroshev and Nath have been leading on ME for 4 years and are now familiar, connecting the dots, planning the same type of research protocols — its huge. To see their names attached to long covid gives me so much hope.
 
Sean said:
Could be our big break, albeit indirectly.

Could also be used by the BPS crowd to entrench their power. Which would be a disaster.
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Why indirectly? It’s not indirect — there is a percentage of long covid that will be ME. If you are reading the accounts of their stories, it is clearly ME. People with long covid clearly describe not just chronic fatigue but PEM after activities and including brain fog, OI or pain. I’ve read all the articles and am in the Facebook groups. Fauci, Koroshev and Nath at NIH are clear that it is leading to ME in some cases.

By summer, once the US is vaccinated, the focus will shift to helping long covid in general, incl 1 to 2M new ME patients, and they already have the media on their side to keep up public and political pressure. Some are already one year into illness, so, the data as they become two year and three years ill patients will be a huge boon.

As for the UK, I know BPS is entrenched, but with the progress and changes in research, their days are numbered. I’m sure that young researchers are fascinated and will see post-viral illness as a new and viable field. Scientific research made huge strides in past year, just in the pace of how people are working. Plus, gene therapy and editing is still in its infancy but there are so many companies doing new exciting work. Al the “omics” work.. I think we are at the start of a really exciting time.
 
Sean said:
Could also be used by the BPS crowd to entrench their power. Which would be a disaster.
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That's the one benefit of rock bottom: there is no bottomer point, it is the bottomest of points. Seeing medicine's reaction to LC really sells the point that the BPS ideology is fully embraced at a level I did not think was so total. It can't really get any worse. It may not get better but it can't be worse than the status quo. So the worst case is just the same old nonsense, while the best is a complete upending that changes everything.

Frankly if LC doesn't do it nothing will. We will otherwise be entirely dependent on chance for a breakthrough in basic research. But it won't get worse, it literally can't.

But seriously long haulers need to start getting mad and quick. This hope that medicine will deliver something it clearly cannot do is badly misplaced and because of the asymmetry involved, BPS research is quick and cheap with zero requirements, while real research is the exact opposite. Playing nice with "please and thank you" won't work here, there are people seriously motivated at doing everything to cancel all of it and keep the ideology as is. Everything about us without us.
 
Good to see the following message on exercise and PEM coming across from dr. Daniel Griffith in his latest clinical updated at TWIV (at 19.20 min)

I also want to talk a little bit about treatment here. I still find it frustrating, I’m sure a lot of our listeners who have Long Covid find it frustrating, that we still don’t have a lot of really good data driven interventions to help with Long Covid. We’re actually, we take care of a lot of long Covid patients here in New York at Pro Health, but we’re trying to consolidate our Covid care so we can really learn from each other, learn from patients, so..

I think one of the big things I just want to throw in here before we close is that people who have Long Covid, who are having problems exercising, having problems going upstairs. There’s this subset that has a significant post exertional malaise issue. These aren't people who can just buck up and gradually increase their exercise. These are people who need to be treated differently, so you really want to screen for that in your guidance of what these people are going to be doing.

 
Not necessarily the UK, but it's pretty much certain that at least one country will do this. And if done, it would be in such a way that guarantees the maximum number of LC cases because the most vulnerable population to LC will be vaccinated last. Especially for countries that may already have decided to go with this, there will be extra motivation to completely deny LC and inflict maximum harm on their patient population.

This is an obvious non-starter taking LC into account. But so far no country takes it seriously enough for it to impact the decision. For any country that went the France, Norway or Sweden way and just straight up treat it as mass hysteria, it's too easy to make the wrong decision.

 
The Swedish National Board of Health and Welfare has added a section on “post-infectious condition after covid-19” to their decision-support guidelines for medical insurance.

Doctors can use this as a guide when prescribing sick leave. It can also be used when assessing a person’s ability to work. The Swedish Social Insurance Agency (Försäkringskassan) also sometimes uses these guidelines.

Socialstyrelsens försäkringsmedicinska beslutsstöd för postinfektiöst tillstånd efter covid-19 (U099)
https://roi.socialstyrelsen.se/fmb/postinfektiost-tillstand-efter-covid-19/705

Google Translate, English
Google Translate said:
[...] Symptoms of post-infectious condition after covid-19 may include: extreme fatigue, shortness of breath, shortness of breath, loss of taste and smell, metallic or bitter taste, headache, fever, cough, chest tightness, chest pain, muscle and joint pain, muscle weakness, palpitations, sore throat, cognitive impairment, brain fatigue, sleep problems, concentration and memory problems, dizziness, hair loss, rash, pain between the shoulder blades, confusion, eye inflammation, physical impairment, reduced mobility, peripheral neuropathy [11, 13 - 15].

Patients who develop symptoms such as palpitations or dizziness when standing may need further examination to rule out postural tachycardia syndrome (POTS) or other forms of autonomic dysfunction [10].

It is difficult to know anything about the prognosis for post-infectious condition after covid-19. How long the symptoms persist is still unclear, due to the limited evidence available about patients with long-term symptoms […]

There is still no consensus on which treatment is most effective against covid-19 and research is expected from ongoing clinical studies.
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Google Translate said:
Disability

Knowledge about post-infectious condition after covid-19 is still limited and decision support needs to be used against this background. At present, we do not fully know the consequences of the disease and there is uncertainty about the duration of various disabilities.

Post-infectious condition after covid-19 can lead to disabilities in the form of fever, shortness of breath (shortness of breath, shortness of breath), pressure over the chest, chest pain, palpitations and reduced physical endurance. The patient may experience muscle stiffness and impaired joint mobility, muscle strength, muscle endurance and impaired control and coordination of voluntary movements.

The condition can cause dizziness, impaired body balance function and impaired proprioception, i.e. impaired perception of posture (perception of position). The condition can also cause headaches, muscle and joint pain, nausea, loss of smell and taste, and difficulty swallowing. The condition can cause cramps or a burning sensation, but also sensory impairments in the form of numbness can occur.

The patient may have problems with mental functions such as sleep, energy, concentration, memory, higher cognitive functions (such as abstraction and organization of thoughts; time planning, insight and judgment, concept formation, categorization and cognitive flexibility), perception and orientation.

The condition can secondarily cause the patient to have emotional problems, anxiety, depression and post-traumatic stress.
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Google Translate said:
Activity impairment

[…] Post-infectious condition after covid-19 can cause difficulty in changing and maintaining basic posture (eg being in an upright position can cause palpitations), walking (eg on level ground), walking on stairs, moving in different ways (crawling, climbing, running, jumping) and moving around in different places.

The condition can cause difficulties with the fine motor skills of the hand, as well as lifting and carrying objects. The ability to be a driver of a vehicle can also be affected.

Post-infectious condition after covid-19 can cause difficulties in focusing attention, solving problems, making decisions, performing both simpler and more extensive tasks, carrying out daily routines and managing stress and psychological demands.

The patient may have difficulty speaking and conversing. Relationships and interactions with other people, even in working life, can be affected.
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Google Translate said:
Information about rehabilitation

Patients with a post-infectious condition after covid-19 may have many different complex needs depending on which organ systems have been affected and what persistent symptoms the disease has caused, as well as its consequences in the form of activity limitations. For this reason, rehabilitation must be developed and tailored to the specific patient's needs [2].

The most common problem is extreme fatigue and cognitive impairments that affect the ability to return to normal activities and work. Various organ injuries also mean that the rehabilitation needs to be adapted to the patient's condition.

The rehabilitation of this very heterogeneous group of patients needs to include efforts from several different professions
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Their guidelines are partly based on the Swedish Agency for Health Technology Assessment and Assessment of Social Services’s (SBU) reports:

Long-term symptoms of the disease Covid-19
https://www.sbu.se/en/publications/sbu-bereder/long-term-symptoms-of-the-disease-covid-19/

Swedish version: Långvariga symtom vid covid-19
https://www.sbu.se/319

Here are the Board's rehabilitation guidelines for covid-19 in primary care:
https://www.socialstyrelsen.se/glob...kument/artikelkatalog/ovrigt/2020-11-7017.pdf

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The Board currently offers no medical insurance guideline for ME/CFS. In their 2018 report they said “[our] assessment is that it is currently not possible to draw up national guidelines with general advice in this area”, citing lack of scientific evidence and lack of consensus within the profession.

For comparison, here’s the Board's report on ME:

A review of the current knowledge status for Myalgic encephalomyelitis/chronic fatique syndrome, ME/CFS
https://www.socialstyrelsen.se/glob.../artikelkatalog/ovrigt/2018-12-48-summary.pdf

And here’s the SBU report on ME (2018):

Myalgic encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS)
https://www.sbu.se/en/publications/...omyelitis-and-chronic-fatigue-syndrome-mecfs/

ETA: The lack of medical insurance guidelines is not neccessarily a bad thing, as they can be used as a way to limit/minimize sick leave etc.
 
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Dr. Fauci Warns These COVID Symptoms May Never Go Away
Your coronavirus could last a week—or you could have symptoms that never go away. "We do know that there's an unusual syndrome called post-acute COVID syndrome, or PACS," Dr. Anthony Fauci, the chief medical advisor to the President and the director of the National Institute of Allergy and Infectious Diseases, said during a Duke University lecture and Q+A this week. It's also known as Long COVID and its sufferers are known as Long Haulers. "We are studying this intensively, with cohort studies because a certain percentage…of people who have symptomatic disease—whether they've been hospitalized or not—have lingering symptoms for variable periods of time after the virus is cleared from the body. So they're no longer infected, but they have a constellation of signs and symptoms that are pretty consistent, and they are…" the following.

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Dr. Fauci has compared PACS to Chronic Fatigue Syndrome, or myalgic encephalomyelitis—an illness whose symptoms include fatigue, of course, but also headaches, and "brain fog," which you'll read about shortly. There is no cure for ME/CFS, just as there is no cdukeure for PACS. In fact, research has been severely underfunded for years, according to Adriane Tillman of #MeAction, a leading ME/CFS group. "The bottom line is that research funding for ME/CFS is absurdly deficient," she says. "If you add up all the funding that the NIH has allocated to ME/CFS research over the past two decades, it wouldn't even reach the total amount that the NIH should be spending in one year on ME/CFS based on the disease burden (the number of people who are sick and the effect on the quality-of-life)."
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https://www.yahoo.com/lifestyle/dr-fauci-warns-covid-symptoms-124158665.html

 
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Long Covid ‘could cost UK around £2,500,000,000 a year’
The MP leading an investigation into coronavirus fears long Covid could cost the UK around £2.5 billion a year.

Layla Moran believes the emerging crisis is comparable to the impact rheumatoid arthritis has on the health service, with hundreds of thousands of people expected to be dealing with the condition for months.

The ONS says around one in ten people who test positive will go on to develop long Covid, a catch all term to describe a host of ongoing symptoms in coronavirus patients. More than 1.7 million Covid-19 infections have been reported since Christmas Day in the UK.

Speaking exclusively to Metro.co.uk, Ms Moran – who chairs the All Party Parliamentary Group (APPG) on coronavirus, said: ‘The amount of money that we are expecting to spend long term on long Covid could be similar to rheumatoid arthritis. How many people know someone with rheumatoid arthritis? It is going to be higher for long Covid.’

Around 400,000 people are currently battling the second most common form of arthritis in the UK, according to the NHS, while the same number are now believed to have long Covid – with that figure only expected to rise.
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https://metro.co.uk/2021/02/10/long-covid-could-cost-uk-around-2500000000-a-year-14050266/
 
Just wondering if there is any awareness campaign underway to further promote the
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CPD produced by Dr Muirhead ( @EducateME )?

I know that the MEA contacted GPs last July:
https://www.s4me.info/threads/uk-me-cfs-cpd-module-from-study-prn.15088/page-2

but a lot has happened since then including the rise in numbers of long-covid patients.

With all the current conflicting information from the likes of TC,CG and PG maybe a tagline somewhere along the lines of
"if you care about the future of long-covid patients you should spend an hour on this free online course"
https://www.studyprn.com/p/chronic-fatigue-syndrome

(btw I spotted a typo on the site and have contacted them to get it fixed)

 
Sly Saint said:
Just wondering if there is any awareness campaign underway to further promote the
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CPD produced by Dr Muirhead ( @EducateME )?

I know that the MEA contacted GPs last July:
https://www.s4me.info/threads/uk-me-cfs-cpd-module-from-study-prn.15088/page-2

but a lot has happened since then including the rise in numbers of long-covid patients.

With all the current conflicting information from the likes of TC,CG and PG maybe a tagline somewhere along the lines of
"if you care about the future of long-covid patients you should spend an hour on this free online course"
https://www.studyprn.com/p/chronic-fatigue-syndrome

(btw I spotted a typo on the site and have contacted them to get it fixed)
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Just commented about this on NICE guidelines thread https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-29#post-324690
 
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