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News about Long Covid including its relationship to ME/CFS 2020 to 2021
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Thanks SNTG. It's very useful having doctors around to help us out with this sort of info.
hibiscuswahine
Senior Member (Voting Rights)
Interesting statement from the immunology professor “It is a lot like CFS, it is one of those diseases that have been dismissed and patients have been mistreated in some cases.”….ummh…..most cases to date….
Tara Green
Senior Member (Voting Rights)
Ah, that's great thanks.
Certainly the CFS clinics are not all that either and only a small minority have any medical involvement. The best thing probably @Tara Green may be to seek out others in your area - maybe a local Facebook Group? who may have had contact with the CFS clinic to find out what actually happens.
It depends on the service you have in the area and what their waiting lists are like, and the persons symptoms and how they are coping. I see you've gone for the long covid clinic, so hopefully in your area you have one that does the extra tests as needed, which you won't get at the ME clinic, on top of requiring basic tests on referral. The person might get to the long covid clinic only to be assessed and put on a waiting list for the ME clinic, so be prepared for that. To mitigate that, the person could get some good self help resources on pacing and get started on them.
Edited typos
The specific options people are given will depend on the local area, but it does look like all areas are
GP basic bloods etc 》Referral 》long wait 》assessment 》more sophisticated tests if needed/available 》rehab type programme, breathlessness stuff, IAPT for long term conditions possible long covid specific OR 》 referral to ME service, local psych, other specialists 》long wait 》finally get to specialist clinic
Table 2 in this article lists tests and onward referrals at the UCL long covid clinic
https://bmjopenrespres.bmj.com/content/8/1/e001041#DC1
Post-COVID-19 assessment in a specialist clinical service: a 12-month, single-centre, prospective study in 1325 individuals
Dakota15
Senior Member (Voting Rights)
NPR: "Coronavirus FAQ: What is long COVID? And what is my risk of getting it?"
https://www.npr.org/sections/goatsa...-long-covid-and-what-is-my-risk-of-getting-it
"There's growing evidence that SARS-CoV-2 can sometimes trigger several post-viral syndromes, or diseases known to occur after an infection. These include chronic fatigue syndrome, also called ME/CFS, and a blood circulation disorder, called postural orthostatic tachycardia syndrome, or POTS."
"For example, one study, which included 130 patients hospitalized with COVID, found that 13% of them met the criteria for ME/CFS six months after their diagnosis."
"Dr. Peter Rowe, Johns Hopkins University has evidence that mild illness can also trigger this disease. "We have a small sample size, but in those [patients] in whom function remains impaired [six months] after COVID-19 infection ... all have met criteria for ME/CFS," he wrote in an email to NPR. "I am referring here to the patients who have prolonged symptoms after mild COVID infections, not the hospitalized group, or those with organ damage after more severe acute COVID-19"
https://www.npr.org/sections/goatsa...-long-covid-and-what-is-my-risk-of-getting-it
"There's growing evidence that SARS-CoV-2 can sometimes trigger several post-viral syndromes, or diseases known to occur after an infection. These include chronic fatigue syndrome, also called ME/CFS, and a blood circulation disorder, called postural orthostatic tachycardia syndrome, or POTS."
"For example, one study, which included 130 patients hospitalized with COVID, found that 13% of them met the criteria for ME/CFS six months after their diagnosis."
"Dr. Peter Rowe, Johns Hopkins University has evidence that mild illness can also trigger this disease. "We have a small sample size, but in those [patients] in whom function remains impaired [six months] after COVID-19 infection ... all have met criteria for ME/CFS," he wrote in an email to NPR. "I am referring here to the patients who have prolonged symptoms after mild COVID infections, not the hospitalized group, or those with organ damage after more severe acute COVID-19"
Or maybe contact the clinics directly and ask them what they do in terms of diagostic testing and treatment.
Mithriel
Senior Member (Voting Rights)
I wonder if they really mean ME or just 6 months fatigue? Some patients talk about thinking they are well, going back to work and only lasting a few days before collapsing again which is classic ME.
Interesting to know if the paralysis and vision problems and all the weird things in ME are aprt of th epricture.
Kalliope
Senior Member (Voting Rights)
Just started to watch this webinar now, and ME specialists have already been referred to twice as very useful for doctors caring for Long Covid patients.
the organiser is Harvard T.H. Chan School of Public Health. Title: Understanding Long COVID: The Unseen Public Health Crisis
ETA: This seems to be a very useful conversation about the importance of involving patient advocates to develop and make progress in the Long Covid field.
the organiser is Harvard T.H. Chan School of Public Health. Title: Understanding Long COVID: The Unseen Public Health Crisis
ETA: This seems to be a very useful conversation about the importance of involving patient advocates to develop and make progress in the Long Covid field.
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Andy
Retired committee member
Kalliope
Senior Member (Voting Rights)
Medscape More Than 100 Million People Worldwide Have or Had Long COVID: Study
quote:
The most common symptom was fatigue, which affected about 23% of people with lingering issues. Other symptoms, such as shortness of breath, insomnia, joint pain, and memory problems, were reported by 13% of people.
The study likely didn't capture all cases of long COVID, the researchers write. What's more, some COVID-19 survivors may develop other severe complications and conditions such as multisystem inflammatory syndrome in children, chronic kidney disease, heart disease and chronic fatigue syndrome.
quote:
The most common symptom was fatigue, which affected about 23% of people with lingering issues. Other symptoms, such as shortness of breath, insomnia, joint pain, and memory problems, were reported by 13% of people.
The study likely didn't capture all cases of long COVID, the researchers write. What's more, some COVID-19 survivors may develop other severe complications and conditions such as multisystem inflammatory syndrome in children, chronic kidney disease, heart disease and chronic fatigue syndrome.
rvallee
Senior Member (Voting Rights)
Nothing groundbreaking or new but an interesting quote to follow up on. Here of course we meet the problem of denied disability. It's not that they aren't disabled, it's that they aren't recognized as disabled. The outcomes for both scenarios are of course vastly different.
Long Covid’s Catch-22: Too Sick to Work, Yet Not Quite Disabled
https://news.bloomberglaw.com/pharm...ch-22-too-sick-to-work-yet-not-quite-disabled
Although, of course, it's far too late to be prepared. There were decades to be prepared for this. No one is even prepared today, so much that people are merely talking about being prepared in the future. Closing in on 2 years and hardly anyone is even prepared for what already happened. As dysfunctional systems go, this is an extreme case.
It would be interesting to know if they are checking for the many co-morbidities, because otherwise that's still very short of what's needed.
Long Covid’s Catch-22: Too Sick to Work, Yet Not Quite Disabled
https://news.bloomberglaw.com/pharm...ch-22-too-sick-to-work-yet-not-quite-disabled
So far this year, SSA said it’s received just over 2 million initial disability claims, which is up from 1.8 million in 2020, though those numbers may be misleading due to the pandemic. SSA said it received about 200,000 fewer disability claims than it expected in fiscal year 2020 and about 500,000 fewer than it expected in fiscal year 2021.
The agency is expecting to see 1 million more claims in 2022, and it’s been looking at how much Covid-19 could contribute to that influx.
The Centers for Disease Control and Prevention said it was recently asked to present data to the SSA on the number of people expected to have myalgic encephalomyelitis/chronic fatigue syndrome as a result of Covid-19.
The SSA is doing its “due diligence and gathering data from all sources that they possibly can to understand and be prepared,”Elizabeth Unger, chief of the Chronic Viral Diseases Branch at the CDC, said in an interview.
A study published in September found more than half of people who contracted Covid-19 in 2020 had one or more symptoms of long Covid for six months after they first got sick. A third had one or more symptoms three to six months after their initial infection. It is not yet known how many of those people are or will be disabled. The Covid-19 vaccines have been shown to reduce the risk of long Covid.
The agency is expecting to see 1 million more claims in 2022, and it’s been looking at how much Covid-19 could contribute to that influx.
The Centers for Disease Control and Prevention said it was recently asked to present data to the SSA on the number of people expected to have myalgic encephalomyelitis/chronic fatigue syndrome as a result of Covid-19.
The SSA is doing its “due diligence and gathering data from all sources that they possibly can to understand and be prepared,”Elizabeth Unger, chief of the Chronic Viral Diseases Branch at the CDC, said in an interview.
A study published in September found more than half of people who contracted Covid-19 in 2020 had one or more symptoms of long Covid for six months after they first got sick. A third had one or more symptoms three to six months after their initial infection. It is not yet known how many of those people are or will be disabled. The Covid-19 vaccines have been shown to reduce the risk of long Covid.
Although, of course, it's far too late to be prepared. There were decades to be prepared for this. No one is even prepared today, so much that people are merely talking about being prepared in the future. Closing in on 2 years and hardly anyone is even prepared for what already happened. As dysfunctional systems go, this is an extreme case.
It would be interesting to know if they are checking for the many co-morbidities, because otherwise that's still very short of what's needed.
ahimsa
Senior Member (Voting Rights)
For some patients, long COVID is their new reality
This is a 10-minute segment from NPR's popular radio program All Things Considered. There's a transcript for those who want to read the story rather than listen to it.
In addition to interviewing doctors, and patients with Long Covid, they also interview Alison Sbrana, board member of Body Politic, who has had ME/CFS for 7 years.
And at the very end, the host, Audie Cornish, has a short exchange with Jaime Seltzer from MEAction:
PS. It was weird to hear one doctor say this:
"What he's referring to is known as post-exertional malaise. It's one of the defining characteristics of long COVID, a worsening of symptoms like pain or fatigue after physical or mental exertion."
I don't mean to sound snarky (I'm not sure how to write this in a clearer way that does not sound sarcastic) but I thought post-exertional malaise was one of the defining characteristics of ME/CFS?
This is a 10-minute segment from NPR's popular radio program All Things Considered. There's a transcript for those who want to read the story rather than listen to it.
In addition to interviewing doctors, and patients with Long Covid, they also interview Alison Sbrana, board member of Body Politic, who has had ME/CFS for 7 years.
And at the very end, the host, Audie Cornish, has a short exchange with Jaime Seltzer from MEAction:
CORNISH: But there are barriers to getting those disability benefits. Many people seeking benefits never received a positive COVID test because they were in such short supply at the beginning of the pandemic. Still others are having trouble proving they have long COVID. Their bloodwork is clean. Other tests look normal.
JAIME SELTZER: There is this presumption that perhaps it's just depression or anxiety or perhaps it's the pandemic and the state of the world. But people know when there's something wrong with them.
CORNISH: Jaime Seltzer is the director of scientific and medical outreach at MEAction, which advocates for people with ME/CFS. Seltzer says there are lessons doctors and researchers can learn from patients like herself.
SELTZER: We do not have to reinvent the wheel. People with chronic complex disease have been living with this for decades. Researchers have been studying this for decades. We definitely need to make use of the path that we've beaten down over time and start basing some of our hypotheses off of what we've seen in these diseases with other labels.
JAIME SELTZER: There is this presumption that perhaps it's just depression or anxiety or perhaps it's the pandemic and the state of the world. But people know when there's something wrong with them.
CORNISH: Jaime Seltzer is the director of scientific and medical outreach at MEAction, which advocates for people with ME/CFS. Seltzer says there are lessons doctors and researchers can learn from patients like herself.
SELTZER: We do not have to reinvent the wheel. People with chronic complex disease have been living with this for decades. Researchers have been studying this for decades. We definitely need to make use of the path that we've beaten down over time and start basing some of our hypotheses off of what we've seen in these diseases with other labels.
PS. It was weird to hear one doctor say this:
"What he's referring to is known as post-exertional malaise. It's one of the defining characteristics of long COVID, a worsening of symptoms like pain or fatigue after physical or mental exertion."
I don't mean to sound snarky (I'm not sure how to write this in a clearer way that does not sound sarcastic) but I thought post-exertional malaise was one of the defining characteristics of ME/CFS?
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Sly Saint
Senior Member (Voting Rights)
yes quite but it seems to have now taken on a life of its own.
also if you do a search on 'nhs post-exertional malaise' ironically the main nhs england website myalgic encephalomyelitis/chronic fatigue syndrome comes up and yet there is no mention of post-exertional malaise.
Mithriel
Senior Member (Voting Rights)
ahimsa said
We seem to have been saddled with this as the description of PEM, even by ME doctors who should know better yet it should be included that problems can be delayed and prolonged but that seems to have been dropped along the way. A worsening of symptoms like pain or fatigue after physical or mental exertion is common to many illnesses. This immediate reaction often happens in ME but there are other less usual things.
With ME physical exertion can cause mental symptoms and mental exertion can cause physical symptoms. It is rare to not be able to walk because you have been reading a book.
There are significant immune problems with exertion, sore throat, swollen lymph glands, night sweats.
The strangest thing is it is very common for a few days to pass before the reaction occurs, in fact it is possible to not realise you have done too much until the reaction 3 days later.
It is so frustrating that we have finally got the abnormal reaction to exertion back as the main symptom instead of fatigue but now it is being distorted so it is losing all meaning again.
We seem to have been saddled with this as the description of PEM, even by ME doctors who should know better yet it should be included that problems can be delayed and prolonged but that seems to have been dropped along the way. A worsening of symptoms like pain or fatigue after physical or mental exertion is common to many illnesses. This immediate reaction often happens in ME but there are other less usual things.
With ME physical exertion can cause mental symptoms and mental exertion can cause physical symptoms. It is rare to not be able to walk because you have been reading a book.
There are significant immune problems with exertion, sore throat, swollen lymph glands, night sweats.
The strangest thing is it is very common for a few days to pass before the reaction occurs, in fact it is possible to not realise you have done too much until the reaction 3 days later.
It is so frustrating that we have finally got the abnormal reaction to exertion back as the main symptom instead of fatigue but now it is being distorted so it is losing all meaning again.
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