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

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JellyBabyKid said:
I have just emailed the editor at New Scientist to very politely enquire why they have not covered the launch of DecodeME as it wasn't in this week's issue either
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Having a skim of this week's contents on the website : https://www.newscientist.com/issue/3292/ it's looking like my email didn't make any difference. Will double check when I download it tomorrow though.
 
This is a call for all Long COVID-19 and chronic illness sufferers to come together to make our voices heard. A rallying cry for those too weak to march and protest. A covenant for those physically unable to stand up for our rights.

On 9th July, Director of National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force, Dr Anthony Fauci commented that an emerging pattern of extended COVID-19 symptoms is “highly suggestive” of Myalgic Encephalomyelitis. For months, people with ME and ME activist associations have been publicly expressing concern that health authorities are not prepared for the avalanche of post-viral effects about to come crashing down on the lives of millions of patients across the world (see the Washington Post).
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https://africaclockwise.wordpress.com/2020/07/22/longhaulersunite/
 
COVID-19 deaths wipe out an average 15 years of life, symptoms linger in young

https://www.theage.com.au/politics/...symptoms-linger-in-young-20200721-p55dz7.html

It comes as initial observations from a UNSW Kirby Institute study of the long-term effects of mild-to-moderate COVID-19 indicates that one in five patients experience ongoing symptoms, including breathlessness, fatigue, anxiety and "brain fog".

The institute's Professor Gregory Dore, who recruited patients for the study at a testing clinic at St Vincent's Hospital where he is an infectious diseases physician, said "at least 20 per cent" of a representative sample of 72 randomly selected participants who had not been hospitalised reported symptoms three months after clearing the virus.

"These ongoing, debilitating symptoms don't appear to be correlated with age [and include] many people in their twenties, thirties and forties," Professor Dore said.
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Most estimates so far had been about 1/10 but this here suggest 1/5. However the sample size is small and probably skews higher but still suggests between 10% and 20% may be more accurate.
 
This guy paid almost 8000 pounds for tests and a specialists to tell him that there is no damage to his heart, brain or legs, that his symptoms are partly due to deconditioning and to state with confidence that he will make a full recovery.

I don't have the heart to tell him otherwise.

 
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I've watched his video yesterday and it made me cringe a little.

Statistically, most post viral fatigue patients recover though (in general, for Corona we don't know yet), so there is reason to be hopeful/optimistic.

I just hope it won't end up being people that have recovered from a self limiting illness attributing their recovery to their own attempts/state of mind/therapies vs the ones that don't.

I have had that happening with peoplpe, including doctors, that had Mono, as I did.

I was hoping to be one of the lucky ones to leave the post Mono club but got a long term membership instead.
 
Snow Leopard said:
This guy paid almost 8000 pounds for tests and a specialists to tell him that there is no damage to his heart, brain or legs, that his symptoms are partly due to deconditioning and to state with confidence that he will make a full recovery.

I don't have the heart to tell him otherwise.

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At least he was advised to pace, though not in those words. But I doubt this advice will be repeated for long. Eventually comes the "pull yourself together" part.

But he still got lied to about being confident in recovery. That's just wishful thinking and has no place in medicine. Truth is we have no idea, that ignorance is willful and will make a lot of self-important people look very silly.
 
CDC: One-third of COVID-19 patients who aren't hospitalized have long-term illness

(3+ weeks, so "long-term")

https://www.nbcnews.com/news/amp/ncna1234814
The Centers for Disease Control and Prevention acknowledged Friday that a significant number of COVID-19 patients do not recover quickly, and instead experience ongoing symptoms, such as fatigue and cough.

As many as a third of patients who were never sick enough to be hospitalized are not back to their usual health up to three weeks after their diagnosis, the report found.
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Still, this is important because:
"COVID-19 can result in prolonged illness even among persons with milder outpatient illness, including young adults," the report's authors wrote.

The acknowledgement is welcome news to patients who call themselves "long-haulers" — suffering from debilitating symptoms weeks and even months after their initial infection.

"This report is monumental for all of us who have been struggling with fear of the unknown, lack of recognition and many times, a lack of belief and proper care from medical professionals during our prolonged recovery from COVID-19," Kate Porter, who is on day 129 of her recovery, wrote in an email to NBC News.
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Hopefully this encourages well-funded efforts to follow up long-term.
 
We were probably lucky to still have a specific program for so many years in the CDC, especially in their infectious disease section with all the negative results that were coming out about a lack of evidence for persistent infections. The long-term COVID patients that look similar to ME/CFS patients should help us a lot.
 
One (of?) drawback to the CDC guidelines on those who remain unwell is that the guidelines are about people who actually were able to get an accurate test.
My concern with this is it sounds as though it leaves an easy way out to deny the scope of the problem. (Lots of people haven't been officially diagnosed and actual testing in the US has been abysmal.)
It reminds me of ME. Lots of undiagnosed people that you can ignore because they don't meet the guidelines = easier to sweep it all under the rug.
 
Leila said:
I've watched his video yesterday and it made me cringe a little.

Statistically, most post viral fatigue patients recover though (in general, for Corona we don't know yet), so there is reason to be hopeful/optimistic.
I just hope it won't end up being people that have recovered from a self limiting illness attributing their recovery to their own attempts/state of mind/therapies vs the ones that don't.
I have had that happening with peoplpe, including doctors, that had Mono, as I did.
I was hoping to be one of the lucky ones to leave the post Mono club but got a long term membership instead.
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The weird thing is that many people (especially doctors) who have had lengthy but temporary post-viral fatigue are unable to explain the mechanism of what caused it when they had it, yet happily view those whose post-viral condition didn't resolve as having a psychological disorder. Few see the contradiction here, and even fewer would be willing to resolve that contradiction by saying 'yes, when I was ill for five months after mono it was because I had a negative attitude'. The medical profession seems to have a binary view whereby post-viral symptoms that last a couple of months after glandular fever (or similar viruses) are not unexpected - even if the pathology isn't known - but the moment they hit an arbitrary milestone the symptoms cease to be 'real'.
 
Tom Kindlon said:
"Covid And Chronic Fatigue: We Must Learn From ME Patients’ Suffering" (July 24)
https://eachother.org.uk/covid-and-chronic-fatigue-we-must-learn-from-me-patients-suffering
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'ME – also known as myalgic encephalomyelitis, chronic fatigue syndrome or ME/CFS – is defined by as a “long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems”.'

I just wondered whether a lot of people may misunderstand what is meant by the "nervous system", thinking that it refers to "nerves"? Of course, the term 'nerves' has more than one meaning too!

Maybe it would be better to use the term "neurological"? I wonder whether other languages have this problem?
 
MeSci said:
Maybe it would be better to use the term "neurological"? I wonder whether other languages have this problem?
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Yes, in Swedish there's a similar connection between the terms, but not as literal. It's called "nervsystemet" ("the nerve system") in Swedish, so at least we don't have the word "nervous" ("nervös" as in anxious) in the abbreviation.

However, in Swedish there are several colloquial expressions about "the nerves" that refer to psychological and psychiatric reactions rather than something neurological. Many of them are very old.

For example, "få åt nerverna" or "gå på nerverna" ("get on the nerves") has slightly different meanings in different parts of Sweden, but usually means something like being hugely irritated and/or frustrated, freaking out, being anxious, having stage fright/performance anxiety (anxiety, fear, phobia), going mad/insane etc.

"Nervsammanbrott" means nervous breakdown.

"Svaga nerver" ("weak nerves") can be used to describe someone who has a very nervous/anxious and "weak" personality.

"Nervklen" or "nervsvag" ("nerve-weak") is the old word for mild so called "nerve related" illnesses/diseases, which at the time I believe captured both neurological and psychological/psychiatric. It's also the old name for neurasthenia.

(In Swedish we only have one word for illness/disease = "sjukdom". "Åkomma" is sometimes used when talking about a complaint or a disorder, but it refers to something much milder than a "sjukdom").

But then again, "the nerves" is also a perfectly normal expression frequently used in anatomy and physiology that only means just that: the actual nerves in the body.
 
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Dolphin said:
There is an enormous amount that we still do not know about covid-19. Many symptoms do not appear to be “post viral” as they emerged with the first manifestations of covid, some symptoms appear later, and it is still uncertain if the relapses represent viraemias or not
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https://blogs.bmj.com/bmj/2020/07/1...longcovid-are-missing-from-the-nhs-narrative/

I’m not sure that’s a good definition of post viral.
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No ME, CFS or PVFS criteria that I’m aware ask people to separate out symptoms they had at the start from the others. And I don’t recall anyone saying not to mention the symptoms one had at the start.
 
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