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Long COVID and ME/CFS (Post viral syndromes)


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#1 laconic

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Posted 15 December 2021 - 11:30 AM

There is growing evidence that Long COVID and Chronic Fatigue Syndrome are either the same condition or very closely related.

 

In the last five years or so there has been a large amount of evidence that ME/CFS is an energy deficit disease. Body mechanisms aren't producing enough energy. One of the defining symptoms is post-exertional malaise (PEM) which is a fancy term for saying that where a normal person might recover from exercise in hours or days, ME/CFS folks will take days, weeks or months to recover.

 

https://www.mayoclin...0513-9/fulltext

 

There is currently no test for diagnosis, so it is largely a disease of exclusion of other fatigue conditions. This affects the health care system since a bevy of test are done (heart, lungs, blood) with no definitive results. At the same time, more extensive and often specialized tests reveal significant problems (2 day CPET, often more than 20% loss of blood to the brain, blood not being able to fill the heart prior to pumping, ineffective mitochondrial function, endothelial dysfunction)

 

Conventional and complementary therapies are ineffective. Think of being a castaway on an island where there is a lack of food and you are slowly starting. There are plenty of studies that show that letters home, meditation, massage, physiotherapy, supplements, etc will make you feel better, possibly for weeks or months, buy eventually they make things worse because they deplete your energy resources. To make matters worse, feeling better means doing more, which means overdoing it, which means depleting your energy even more. The common doctor strategy of "doubling the dose" creates even more problems.

 

Insurance companies have been relying on the cruel strategy of graded exercise therapy (same as for most physical rehab... slowing increasing the amount of exercise over weeks) to force people back to work. Refer to the paragraph above for the effect on the patient. This technique was based on a large flawed study. Current recommendations consider it ineffective and possibly harmful.

 

In Long COVID, people currently suffering from the condition have immediate onset. Surprisingly, they are often people who led very active physical lives before COVID. There is a sense that the number are only the tip of the iceberg. In the castaway analogy, you may function pretty well for years, depending many factors, but suffer a steady overall decline.

 

The only current "treatment" is "get plenty of rest and don't overdo it", called "pacing". For some people that can look like a reasonably active life. For others, going to the store for groceries or watching television for an hour can debilitating and require hours or days of bed rest. Note that your brain uses about 20% of your energy, so pretty much any activity such as reading, watching television, listening to music is just as bad as physical exercise. For many people, even standing or even sitting for short periods (like an hour) is problematic.

 

On the good news front. Long COVID has resulted in a sudden rush of funding. Most of the highly underfunded ME/CFS researchers (we're talking big league people such as Harvard, Stanford) have simply moved to adding the COVID keyword to their funding requests.

 

We've also started to see a recognition of the problem through the establishment of Long COVID treatment centers (one in Vancouver at St. Paul's), however most GP's are not attuned, particularly if you were relatively asymptomatic originally. Fatigue is such a common complaint that GP's will run the standard tests, then prescribe rest or worse yet, diagnose depression and start prescribing medications.

 

If no cure is found soon this problem will slowly and silently become the next legacy of the COVID crisis.



#2 laconic

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Posted 16 December 2021 - 05:24 AM

Global News: Why are they still sick? The latest clues in the mystery of COVID-19 long haulers.
https://globalnews.c...-mystery-clues/

#3 laconic

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Posted 16 December 2021 - 05:34 AM

Long COVID occurs regularly in people who had only mild symptoms.

The Hub at Johns Hopkins: Young people, long COVID | Hub.
https://hub.jhu.edu/...ple-long-covid/

#4 Victoria Watcher

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Posted 16 December 2021 - 05:36 AM

Global News: Why are they still sick? The latest clues in the mystery of COVID-19 long haulers.
https://globalnews.c...-mystery-clues/

 

Maybe they are generally unhealthy?



#5 laconic

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Posted 16 December 2021 - 05:53 AM

Read the next article. This is affecting people with mild, non-hospitalized COVID who are very healthy.

#6 Victoria Watcher

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Posted 16 December 2021 - 05:56 AM

I’ve read enough articles about “healthy” individuals during this pandemic where the very picture of the person tells a very different story.

Just because one declares themselves “healthy” does not make it so.




Here’s another bummer of a statistic to toss on the pile: Less than 3 percent of Americans meet the basic qualifications for a “healthy lifestyle,” according to a new study published in Mayo Clinic Proceedings.

https://amp.theatlan...article/475065/

Edited by Victoria Watcher, 16 December 2021 - 05:57 AM.


#7 laconic

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Posted 16 December 2021 - 06:27 AM

Long COVID in a prospective cohort of home-isolated patients (Norway)

https://www.nature.c...591-021-01433-3

#8 laconic

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Posted 17 December 2021 - 07:26 AM

Long COVID treatment guidelines for GP's in Australia. The news article gives decent information about prevalence in hospitalized and non-hospitalized.

RACGP: newsGP - Long COVID guidelines updated ahead of expected 'influx'.
https://www1.racgp.o...-of-expected-in

#9 laconic

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Posted 05 January 2022 - 10:02 AM

Good article from the National Post

https://nationalpost...bout-long-covid

#10 Love the rock

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Posted 06 January 2022 - 09:16 AM

Maybe they are generally unhealthy?

I have a long hauler in my family. It’s been well over a year  .I’d say she was healthy .Actually  I’ve never known her to have any medical issues at all  . She was active, weight wasn’t an issue she’s young enough to be still raising a family . I saw first hand her issues at Christmas . Her long haul symptoms appear to be  improving but it’s painfully slow . 

 

.



#11 Victoria Watcher

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Posted 06 January 2022 - 09:24 AM

It's almost entirely psychological.  Chronic Fatigue is also 75-85% female.  This says it all:

 

 

 

https://www.theguard...e-to-long-covid

 

 

While men over 50 tend to suffer the most acute symptoms of coronavirus, women who get long Covid outnumber men by as much as four to one

 

 

 

“This pattern has been seen in other post-infectious syndromes,” says Dr Melissa Heightman, who runs the UCLH post-Covid care clinic in north London. “Around 66% of our patients have been women. A lot of them were in full-time jobs, have young children, and now more than a quarter of them are completely unable to work because they’re so unwell. Economically, it’s a bit of a catastrophe.”

 

As Heightman points out, this is not a new trend when it comes to infectious diseases, rather one which has historically been neglected. Women are known to be up to four times more likely to get ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome), a condition believed to have infectious origins in the majority of cases, while studies have also shown that patients with chronic Lyme disease are significantly more likely to be female.

 

 

 

It's like Munchausen syndrome by proxy - 93% feamle.

 

 

 

 

One study showed that in 93 percent of FDIA cases, the abuser is the mother or another female guardian or caregiver.

 

https://en.wikipedia...osed_on_another


Edited by Victoria Watcher, 06 January 2022 - 09:32 AM.


#12 laconic

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Posted 06 January 2022 - 10:07 AM

I have a long hauler in my family. It’s been well over a year  .I’d say she was healthy .Actually  I’ve never known her to have any medical issues at all  . She was active, weight wasn’t an issue she’s young enough to be still raising a family . I saw first hand her issues at Christmas . Her long haul symptoms appear to be  improving but it’s painfully slow . 

 

.

 

Contrary to those who wish to remain ignorant, post viral syndromes have been around for a long time and are not psychosomatic. Women get 99% of breast cancers but that isn't "entirely psychological"

 

With ME/CFS there was a very flawed study that attempted to show that it was entirely psychological, and that "graded exercise therapy"  (basically standard pyhsio techniques) could return people to a healthy state. This caused a lot of problems for people suffering from the disease. In the last five years, study after study has shown that there are significant physiological issues affecting the heart, brain, blood, immune system, etc. The problem lies with the medical profession that still tends to discount not only women, but also discount any complaint that can't be resolved from a standard lab requisition.

 

A very large portion of COVID long haulers and ME/CFS patients are type A's who have been very fit until struck with the condition.

 

I've seen a lot of articles recently from doctors who are jumping on the bandwagon without any idea of the current state of research. There a long COVID clinics springing up everywhere, along with many doctors willing to talk about their theories without having properly explored the research.

 

In ME/CFS, numerous studies have shown that the mitochondria aren't producing energy properly. I use an analogy of someone shipwrecked on a small island, barely able to scrape together enough food to survive. To say "It's all in your head, just get up and go get some food" is unbelievably patronizing. The doctor approach is to send a letter from home, which results in the person feeling better for a while, doing more things, exhausting themselves and eventually being in a worse state. Then the doctor doubles the dosage to two letters from home and voila, life is better for a while. Pretty much any short term study of exercise therapy, vitamins, antidepressants, yoga, mindfulness, etc will show an improvement. Meanwhile, physiologically, the person is a mess.

 

The current medical advice is basically "do what you can and rest a lot".


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#13 Victoria Watcher

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Posted 06 January 2022 - 10:44 AM

Contrary to those who wish to remain ignorant, post viral syndromes have been around for a long time and are not psychosomatic. Women get 99% of breast cancers but that isn't "entirely psychological"

 

 

 

COMPLETE false equivalency and you know it.



#14 Victoria Watcher

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Posted 06 January 2022 - 11:28 AM

Across all age categories, across all ethnicities and nations, across all comorbidities, the rate for infection, hospitalization, ICU and death has remained pretty much 50/50 male to female, but somehow with long-covid you find only an a physiological reason, when cases are 80/20 female to male?

 

That seems preposterous to me.


Edited by Victoria Watcher, 06 January 2022 - 11:28 AM.


#15 Love the rock

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Posted 06 January 2022 - 11:51 AM

COMPLETE false equivalency and you know it.

 

Across all age categories, across all ethnicities and nations, across all comorbidities, the rate for infection, hospitalization, ICU and death has remained pretty much 50/50 male to female, but somehow with long-covid you find only an a physiological reason, when cases are 80/20 female to male?

 

That seems preposterous to me.

Can I respectfully tell you can’t be an expert on everything. I am not an expert nor are you .


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#16 Victoria Watcher

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Posted 06 January 2022 - 11:57 AM

I’m pretty good at logic though.

I’m quite happy to consider long-Covid a mental illness though, and advocate for treatment.

John Hopkins:

A gender/behavioral hypothesis is that when there is equal access to care, women tend to seek out care more often than men. Women tend to “know” their bodies better and, socially, it is considered more acceptable for women to discuss pain, distress and discomfort than men. It could be a reporting bias, and we just have more women reporting symptoms. With fatigue being the primary reported symptom, it could be that men do not find it socially acceptable to report feeling tired.

https://www.healio.c...-women-than-men

Edited by Victoria Watcher, 06 January 2022 - 12:08 PM.


#17 Spy Black

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Posted 06 January 2022 - 12:27 PM

I’m pretty good at logic though.

Your "logic" is always in service to your agenda ... so any declaration of being "good" at it needs to come with a proviso that makes that crystal clear to the reader!


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#18 laconic

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Posted 06 January 2022 - 12:34 PM

Men and women have surprisingly different physiologies. It is only in the last decade or so that cardiologists cared to admit that women present heart attacks much differently than men.

 

https://translationa...967-021-03035-6

 

"In summary, by designing a study integrating sex as a biological variable, we have been able to account for its effects to detect sex-specific ME/CFS lipid profiles. We also identified sex-specific differences in plasma lipids irrespective of diagnostic status which may help better explain the role of sex on lipid processing in future studies."

 

https://www.pnas.org...nt/113/37/E5472

 

"Metabolic pathways disturbed in CFS. A total of 20 pathways were disturbed in males and females with CFS. Nine of these were common to both, and 11 showed gender differences."

 

This may be a converse case to heart attacks in the sense that it looks like ME/CFS may be underreported in men.

 

"Our study is one of the few that has analyzed ME/CFS disorder in a reasonably large sample of men and compared it with a sample of women under experimental control conditions. Our results revealed that male ME/CFS patients self-reported severe fatigue, autonomic dysfunction, decreased sleep quality, and increased anxiety and depression symptoms, together with increased higher heart rate and blood pressure values at rest compared with male healthy controls. Specifically, the differences were more than 7 points in the NCQ score, more than 36 points in the COMPASS-31 total score, more than 120 points in the FIS-40 total score, around 10 points more in the PSQI total score, and 20 points more in the HADS total score. At the clinical level, all these differences indicate severe symptomatology in male ME/CFS patients, an aspect that is poorly documented in the literature."

 

https://www.mdpi.com.../21/11/3746/htm


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#19 Mattjvd

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Posted 06 January 2022 - 01:13 PM

I’ve read enough articles about “healthy” individuals during this pandemic where the very picture of the person tells a very different story.

Just because one declares themselves “healthy” does not make it so.




Here’s another bummer of a statistic to toss on the pile: Less than 3 percent of Americans meet the basic qualifications for a “healthy lifestyle,” according to a new study published in Mayo Clinic Proceedings.

https://amp.theatlan...article/475065/

Brandon Sutter of the Canucks, a 32 year old pro athlete, has been suffering through it for 8 months, still no timetable for him to be able to return to playing. Hard to get much healthier than that. (He is not the only NHL player out).

Edited by Mattjvd, 06 January 2022 - 01:13 PM.

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#20 Ismo07

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Posted 07 January 2022 - 02:53 PM

Brandon Sutter of the Canucks, a 32 year old pro athlete, has been suffering through it for 8 months, still no timetable for him to be able to return to playing. Hard to get much healthier than that. (He is not the only NHL player out).

 

Wow had no idea... 



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