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

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Podcast from nov. 13th
FiveThirtyEight What We Know About 'Long COVID'

On this week’s episode of PODCAST-19, we do a deep dive into “long COVID,” which is when people who’ve survived COVID-19 continue to experience a variety of symptoms for weeks, or sometimes months, after their acute illness. What’s causing this disease to linger for so many people? And what will happen to our health care system if a lot of people are sick for years to come with a hard-to-define illness?https://fivethirtyeight.com/features/theres-no-longterm-plan-for-long-covid/?ex_cid=story-twitter



 
Replying to post #2644:

“There are lots of reasons for breathlessness. A fair number of Covid patients have myocharditis, inflammation of the heart muscle. Exercise can cause damage in those cases. People need proper investigations before treatment like physio is prescribed. My concern is if health services focus only on rehab and psychology services, they are missing the chance to medically treat people and help them get better.”

I'm glad that they are bringing awareness to the negative effects of exercise (GET), but I'm afraid they won't understand that PEM is not from heart inflammation/damage if all tests return "normal".
 
Sly Saint said:
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.


https://www.edinburghnews.scotsman....id-19-symptoms-calls-one-stop-clinics-3036377
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In April they were already offering CBT/GET straight up? Odd. I was actually curious about that and surprised not to have heard about it. Would be interesting to know on what basis.

Uhhhh... what?
This week the National Institute of Clinical Excellence (NICE) is expected to recommend a programme of structure exercise south of the border, after it accepted that it might not be acceptable for patients with Long-Covid. Those guidelines are expected soon, with growing fears the Scottish Government will follow.
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:thumbup:
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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Kalliope said:
Podcast from nov. 13th
FiveThirtyEight What We Know About 'Long COVID'

On this week’s episode of PODCAST-19, we do a deep dive into “long COVID,” which is when people who’ve survived COVID-19 continue to experience a variety of symptoms for weeks, or sometimes months, after their acute illness. What’s causing this disease to linger for so many people? And what will happen to our health care system if a lot of people are sick for years to come with a hard-to-define illness?
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Sly Saint said:
article in topdoctors by
Dr Gerald Coakley
Published: 29/04/2020


https://www.topdoctors.co.uk/medical-articles/post-viral-fatigue-and-covid-19
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Gerald Coakley is a low profile provider of firm BPS thinking, a proactive PACE apologist, even when the academic figleaves had been castrated. He is privately marketed as a fatigue specialist.

He also speaks about pwME in caricatured derogatory terms when he feels comfortable.

That is my first hand experience before being broken in two, when I believed that I was subcontracting to an expert and he believed I was sufficiently educated to speak freely about his opinions of many pwME when I asked about the PACE controversy (before I knew that I had to DIY the detail).
 
rvallee said:
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.
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I’m also really worried that now that we are seeing promising initial vaccine efficacy data that by maybe sooner than expected summer/fall 2021 COVID will start becoming the past instead of the present, and that the interest and news cycle will just forget about long COVID.

Research will suffer, long COVID patients will suffer, and most likely ME/CFS will suffer because of this once in a 100 year missed opportunity to prove why we need much higher research funding and to show the world that yes we were telling you this all along, we didn’t make this shit up, we got a bad viral infection outside of a pandemic (so we really didn’t know what was going on and many didn’t go to the doctor and just thought we would get better) and this shit happens you are stuck with ME/CFS for life.
 
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leokitten said:
Has anyone seen any hard data or literature discussing PEM in long COVID? Like prevalence, etc.
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Still mostly unacknowledged so far. Only bits of misunderstanding here and there as inability to exercise or, usually, deconditioning. Only the patient community recognizes it, actually discusses it quite competently thanks to the information available from the ME community and it being pertinent to their lived experience.

Honestly I doubt that any such research will happen until a huge paradigm shift, or until ME researchers have funding to do so. It's just completely misinterpreted so far and only ME-aware researchers and clinicians understand it.
 
Post-COVID clinic planned for Montreal to study long-term effects of disease on patients

https://montreal.ctvnews.ca/mobile/...term-effects-of-disease-on-patients-1.5188549


Thankfully, it appears focused on research and understanding, rather than trying to brute force a rehabilitation approach without theoretical understanding.
In the next few weeks, a researcher plans to open a post-COVID clinic that will start by seeing a small cohort of patients before ramping up to a larger opening in January, CTV has learned.

The goal is to study the long-term effects of the still novel COVID-19 illness, to better understand the disease itself.
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Even before learning about the Montreal project on tap, an infectious diseases expert said it’s the type of post-COVID model he favours - one that combines patient care with research.

Ideally, researchers would establish a registry, Dr. Karl Weiss said - a database that would collect patient information, allowing doctors to analyze trends in symptoms, establish criteria for diagnosis and treatments and monitor outcomes over time.

“There is an unmet need right now and a research group will probably be the key to first of all understand if it’s a real entity, second of all if it is, how can we make the diagnosis,” said Weiss, chief of the infectious diseases division at the Jewish General Hospital.
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“We have to be very careful - because anything that’s infectious can sometimes give you symptoms for a long period of time, and it’s not necessarily abnormal. Mononucleosis is an example, but we know regular pneumonia, in a regular person with zero underlying medical condition who is in great physical shape can leave some lasting and lingering symptoms for weeks, even for months,” he said.
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... even for years... even for decades... even for a lifetime...
“When you look at all the other symptoms, the brain fog, the chest pain, the chronic fatigue - their symptoms are real and they want something to be done for the symptoms. I understand it. My frustration is, I can’t fix it,” said Rudski, who is the Jewish General Hospital’s chief of cardiology. “And do I believe that it’s related? I do believe it’s related to COVID... But how do you treat something that you don’t understand?”
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https://www.dublinlive.ie/news/health/coronavirus-ireland-man-who-permanently-19283027

A study conducted by Trinity College Dublin and St James’ Hospital found more than half of Covid patients continue to have persistent fatigue months after contracting the disease.

Mark Burke, from Roundwood in Co Wicklow, still suffers with extreme fatigue since March.

The 48-year-old’s condition was so bad he was given 24 hours to live at the time.

Dad-of-four Mark, who took double pneumonia at the time, said: “The tiredness is brutal but thankfully it’s the only side effect I have. I’m seven months out of hospital and still not right. Anything physical and it burns me out completely within minutes.

“Ten or 15 minutes of anything and I am exhausted, tired and sore.

“Before Covid I worked 100 miles an hour, 12 hours a day, six days a week, no bother. I was always active and fit.”
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There are 2 other interviewees. One is doing 2.5 hours of physio a day. I very much hope he doesn't have an ME-type condition.
 
Some may remember CNN host Chris Cuomo talking about his experience with Long Covid symptoms. His brother is the governor of New-York, who just posted this:



Not bad, though still severely underrepresents the severity, not helped by limiting it to the usual, yes... chronic fatigue. Ugh. The video tries to remind people that death is not the only concern about the pandemic, the declining mortality rates are starting to motivate many to think that it can run through unchecked and we will be fine.

But there is a problem here, especially by misrepresenting just chronic fatigue, that it may actually cause people to take it even less seriously, largely because anyone asking their physician about this would be told it's nothing to worry about. It's hard to get people to take a ruinous eventuality seriously when the experts themselves dismiss it as trivial.

Hopefully there is more than just this advisory, because it's basically guaranteed to change exactly zero minds without serious reform in the system of health care, which will never appropriately place in context something it has badly misrepresented for decades.
 
From Kenya:
People who recover from Covid-19 risk other health complications.

Dan Ndiwa, a consultant general surgeon in Eldoret, who contracted Covid-19 more than a month ago, says he now experiences extreme fatigue and persistent headaches that don’t seem to respond to painkillers.


“The fatigue is really bad. When I wake up I feel like I have been working kwa mjengo (construction site). I am always lethargic and do not want to work,” he says.

Dr Ndiwa experiences episodes of too much sleep (somnolence) when the fatigue sets and the headache makes him lose sleep (insomnia).
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Health problems likely to trouble you even after recovering from Covid-19
https://www.standardmedia.co.ke/hea...ouble-you-even-after-recovering-from-covid-19
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