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

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Article in a Swedish newspaper about Anna Amholt, a 20 years old professional ice hockey player who has been ill for more than 220 days. (ME is not mentioned.)

Aftonbladet: Coronasjuk i 220 dagar – läggs in på sjukhus
https://www.aftonbladet.se/sportbladet/hockey/a/kRRq8X/coronasjuk-i-220-dagar--laggs-in-pa-sjukhus
Google Translate said:
Anna Amholt became ill this spring with corona-like symptoms, and when she was able to test herself for antibodies, it was confirmed that she had covid-19.

But she has continued to be ill.

When she has made an effort, she has suffered several setbacks and the feelings of illness with, among other things, fever, great tiredness and muscle pain have been recurring. She has told Sportbladet that she "barely remembers what it is like to be healthy".

Want to come home for Christmas
Today, Friday, Anna Amholt will be admitted to the corona rehabilitation at Sahlgrenska Hospital in Gothenburg to be examined and receive rehabilitation.

- They have told me that previous patients have been there for between six and ten weeks, that I can expect that. I hope to come home again for Christmas. That is the goal in any case, says Amholt to GP.
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Hat tip to @Anna H for the link!
 
rvallee said:
The videos (almost 2h) tend to be too long for me to watch, but what a great panel: Mady Hornig, Fiona Lowenstein, and David Tuller.

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New podcast from this Week in Virology today and at approximately 34 minutes in, dr. Daniel Griffin recommends listening to the previous episode on long Covid. Which is great, as there seems to be a lot of clinicians prioritising listening to dr. Griffin's weekly clinical updates, so hopefully there will be more of them listening also to the previous episode.

He says there is a large number of people who don't get over Covid in two weeks, that it's important not to gaslight. There's a lot of difference. Some people can do well by gradually increasing exercise, other people, if they increase their exercise too quickly, they get really horrible post exertional malaise and impact.

It is much more than becoming out of shape and they're still learning.

 
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MEMarge said:
“You can't rehabilitate us if you don't know what's the matter with us! “
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That hasn't stopped the quacks from trying to rehabilitate ME patients for decades.

Long-covid patients are slowing discovering the medical idiocies we've all had to endure even though they're part of a large, well-organised patient body. I feel for them.

ETA: there's been an interesting change in tone on the various Longhauler forums I've been following. Many of them were initially hopeful that the medical system would diligently investigate what is wrong with them. Now they are finding that they are often dismissed and ignored. There are plenty of posts about lazy, incompetent doctors blaming symptoms on "anxiety, asthma or allergies".
 
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BBC radio Wales: The Long Tail – My Coronavirus Recovery: https://www.bbc.co.uk/sounds/play/m000p75r

Blurb: “Sophie Wilson is one of the thousands of people in the UK with ‘Long Covid’. She meets fellow sufferers and medical professionals in Wales in the search for answers.”

One of the Long Covid sufferers in the programme is S4ME’s John Peters.

In an email to me John wrote: “Perhaps you could pass on that I am missing the engagement on the forum as much as the discussions. I found in the early days of my Covid when I went on there I got sucked in and overwhelmed, so, much as I want to join in again, I'm going to wait a bit longer till I feel ready. It's been really bad missing these last few months with so much that has been going on.”
 
Source: Bring Me The News
Date: November 15, 2020
Author: Joe Nelson
URL:
https://bringmethenews.com/minnesot...ong-people-lose-taste-and-smell-from-covid-19


Mystery of how long people lose taste and smell from COVID-19
-------------------------------------------------------------

(...)

Dr. Michael Osterholm, director of the Centers for Infectious Disease
and Research Policy at the University of Minnesota and member of
President-elect Joe Biden's COVID-19 advisory panel, said the long
haulers condition is a big reason why young, healthy adults don't want
to get this virus even if they're confident that they won't end up in
the hospital.

'We're still really exploring the long-term effects of this,' Osterholm
said Friday. 'We're seeing up to 25% of individuals who have mild
illness at first, though by weeks 5 or 6 post infection are actually in
many cases experiencing very severe chronic fatigue-like symptoms and
experience what they call a 'brain fog,' and in many cases are basically
disabled at home.'
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Wonko said:
I thought the whole taste and smell thing was explained months ago?
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It got more complicated. It isn't just loss of smell, medicine still hasn't caught up to phantom smells. They are in fewer numbers than anosmia but the effects are far more significant. People reporting they can't eat anymore, it makes them gag, because everything tastes like metal or rot or worse.

They are also quite common with ME, also not typically reported, but appear to be far more intense with Long Covid.
 
Doctor forced to give up her job after months of terrifying covid-19 symptoms calls for one-stop clinics
A doctor who was forced to quit job after getting covid-19 warns patients left to recover at home need specialist help, and not pushed into ‘exercise’ programmes that can make them feel worse in the long run.
Dr Amy Small, from Prestonpans was forced to give up working at her practice in September and take on reduced hours as a locum GP, because she struggled for months with fever, racing heart rate, headaches and brutal fatigue.
After first falling ill with the virus in April Dr Small was offered physiotherapy, psychological services and says she had to fight to get other tests that showed she had a condition causing an abnormal rate, caused by covid-19.

The mum-of-two says patients recovering at home with long term symptoms, or Post-Covid syndrome, are being offered rehabilitation services like exercise programmes that could be damaging their recovery in the long run.
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ME Action Scotland says a significant number of people with Covid-19 will go on to develop ME. A spokesperson said: “There is evidence of a risk of Covid-19 leading to a large increase in post- viral illness and potentially ME. The letter requested urgent action to stop graded exercise therapy.”
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https://www.edinburghnews.scotsman....id-19-symptoms-calls-one-stop-clinics-3036377
 
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I'm seeing a dangerous trend that is essentially the very essence of the famous phase in Chernobyl: "Every lie we tell incurs a debt to the truth. Sooner or later that debt is paid.".

As medical care over acute complications of Covid becomes more capable, in some areas death rates seem to have fallen by half and more, the overall death rates fall down even as cases rise up. Which allows people favoring letting it run wild in the population to grow more confident that it's worth doing it. Either they don't know or can't even bother to care about long-term complications, chronic illness is trivial, easy-peasy, unlike ICU care, which is where "real medicine" happens.

All because the long-term complications are ideologically incompatible with standard medical dogma over post-viral illness. It's just "fatigue" after all, many people can justify anything with that. Or it's just anxiety. Yes, if the death rates fall, those anxieties will fall too.

Acute medical care learns quickly and significantly. It makes enormous difference over a few months as protocols are developed, along with some social adjustments like somewhat protecting the more vulnerable. But there hasn't been any progress whatsoever on the long-term complications, still flying entirely blind and unequipped to deal with whatever is ahead. If anything Long Covid is guaranteed to regress for a while to make place for all the same mistakes to be taken to their breaking point.

It's basically assumed to be trivial. Lots of work ahead, sure, but all that's needed is hard work. Working hard, not smart. Exactly how medicine completely screwed up chronic illness. Worst case it's "boom time" for the business of rehabilitation.

Decades of accumulated lies add up to a very significant debt. And it's due to be cashed soon. All at once. Oops.
 
Younger Adults Caught in COVID-19 Crosshairs as Demographics Shift

https://jamanetwork.com/journals/jama/fullarticle/2773055

As the understanding of COVID-19 in younger individuals grows, physicians should not dismiss their symptoms, stressed Caspar van der Made, MD, an internal medicine resident at the Radboud University Medical Center in the Netherlands, who is studying genetic factors that predispose young people to severe disease. “We should not underestimate the signs of COVID-19 in these young individuals as we come to learn more about the subclinical effects of the disease and post–COVID-19 morbidity,” he said in an email.
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For some people, genetic changes could underlie a dysregulated immune response to the virus. And “in young patients that are otherwise healthy, the role of genetics will be more apparent,” van der Made said.
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Reflections of a COVID-19 Long Hauler

https://jamanetwork.com/journals/jama/fullarticle/2773056

As a result, I have been reminded of the need to listen to the patient first, even in the absence of conclusive testing. The next time I care for someone with vague abdominal pain, or fatigue, or paresthesia, or any of the myriad conditions that are uncomfortable on the inside but look fine on the outside, I will remember that these symptoms are real and impactful for patients. There is a marked difference between tests being within normal limits and a patient being well.
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We can only hope so. But hope without action isn't worth a damn.
My experience is not typical. I have a home with a well-equipped basement where I could safely and completely isolate. I have a wife and children who have approached my illness with endless strength and compassion. I have an employer that recognized the need to use a symptom-based approach for making return to work decisions and that provides a generous salary continuation benefit. And, I have long-term disability insurance should this affect me beyond 6 months.
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This is not the case for most patients, many of whom cannot isolate from family and cannot afford to miss even a day or 2 of work. I have not had to live with the financial and health worries that accompany a COVID-19 diagnosis for so many in this country. I am also privileged by my race, whereas so many people of color are disproportionately suffering from this disease and others due to the many manifestations of institutional racism in this country. Recognizing this fact, I know how important it will be to continue to offer help and support to others less fortunate than me who are affected by COVID-19 and other chronic illnesses.
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Again, this thing where physicians have to experience a disease to appreciate it... not ideal. Extremely not ideal for any profession.
 
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