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

https://www.prnewswire.com/news-rel...ts-with-long-covid-19-syndrome-301456006.html

"People who suffer from Long COVID Syndrome and ME/CFS have nearly identical physical symptoms and there may be a similarity in the underlying pathophysiology related to mitochondria and purinergic signaling. Using a purinergic antagonist, like suramin, may play an important role in addressing both of these syndromes," commented Robert Naviaux, MD, PhD and co-Director of the Mitochondrial and Metabolic Disease Center at the UCSD School of Medicine."

 

However, actions taken about Long Covid by each government:

Finland: lol

USA: nuh

Every other country: hahahaha, no

Words are nice. Empty words aren't. Just like Collins' "hope without action". There is no action here, just empty words. Those are cheap, we've heard them all.

 

So, to sum up . . . #nowordswithoutaction

 

San Francisco Chronicle: "Think 'mild' omicron is no big deal? Here's what long COVID symptoms feel like"

https://www.sfchronicle.com/opinion...ld-omicron-is-no-big-deal-Here-s-16754726.php

Link around paywall: https://archive.ph/1NPFF#selection-3181.0-3184.0

"Long COVID is common following even mild cases of COVID-19, and its symptoms can be far more severe than the mild case it came from. It can lead to devastating illnesses with symptoms that wreak havoc on every part of your life, including a condition called ME/CFS (also called myalgic encephalomyelitis or chronic fatigue syndrome), a usually lifelong debilitating disability.

I have ME/CFS. I promise you, you don’t want it."

"The majority of people with long COVID past six months are reporting that ME/CFS symptoms are their main concern, according to a study in the Lancet, and as many as 50% of people with long COVID qualify for an ME/CFS diagnosis, according to an article in the Mayo Proceedings. Researchers are predicting that more than 4 million Americans could develop ME/CFS following COVID-19, nearly tripling the number of people with the disease."

"I’ve had ME/CFS for four years. Most cases are virally triggered, like from COVID-19, though other viruses and environmental stressors can also cause it. I’ve gone from being an avid salsa dancer to needing a wheelchair to go more than two blocks. I’ve gone from being able to read a whole book after a workday to needing an entire rest day to recover after one. I find physical things like folding laundry to be difficult exertion now. I’ve lost friends and clients to this disease."

"For me, the possibility of very severe ME/CFS is scarier than death. I already wouldn’t wish my moderate ME/CFS on anyone. I feel like I’ve already lost so much. I can do fewer fun things, fewer work things, fewer family things. Every single part of my life has had to be cut back in order to accommodate this disease. I deal with pain and nausea and dizziness on a daily basis."

 

Yes, it will be interesting to see, @Sly Saint

 

I see that she still can't acknowledge that a proportion of those with Long Covid are likely to have ME/CFS, or even name ME/CFS.

 

Lots of things hiding in blind spots:

https://twitter.com/user/status/1480141760814850049

 

(not sure if this was already posted)

https://www.nzherald.co.nz/nz/long-...ost-viral-illness/ZOEYML2DSQN7QSZZG4BHXM66F4/

NZ Herald: "Long Covid and ME/Chronic Fatigue Syndrome: Life with a post-viral illness"

"Many experts believe "Long Covid" could be a sub-type of ME/CFS caused by Sars-cov-2. They expect about 15 per cent of people who contract Covid-19 will develop the illness, making post-viral disease a mainstream concern."

"ME/CFS is a complex multisystem disease that involves an immune system dysfunction and a disturbed physiology. It ruins lives and careers. It robs people of the ability to be fully human."

 

https://www.youtube.com/watch?v=P17_Op2kOk4

Dr John Campbell speaking about sequelae of LC particularly diabetes. Some interesting comments on post 1918 Spanish Flu and other historical events.

 

Wow, that's a really offensive, problematic and ableistic way of phrasing it

Dehumanization is an incredibly dangerous aspect of ableism and many other kinds of oppression.

 

https://twitter.com/user/status/1480535773250207752

 

I don't know how many times I've read that story about this young woman... I believe the first time was ten years ago. At least the article refers to LP as alternative treatment, but otherwise no critical journalism

 

https://www.macleans.ca/longforms/c...iled-lives-and-no-way-out-this-is-long-covid/

"Chronic exhaustion, derailed lives and no way out. This is long COVID."

"But January arrived and McGinn still felt terrible. Some symptoms improved, but many never disappeared, and new issues arose. Almost one year after getting COVID, she still wrestles with a cough, cognitive dysfunction, pain and postural orthostatic tachycardia syndrome, or POTS, which can cause lightheadedness, nausea and a racing heart after she stands up. She has post-exertional malaise, a kind of fatigue that comes on after she’s exerted herself physically or mentally. It can leave her bedridden for days."

"McGinn’s family doctor was supportive but didn’t know much about long COVID and its associated symptoms. McGinn turned online for information and discovered thousands of patients describing remarkably similar symptoms to hers. Some had long COVID and others had a condition known as ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome. Some have both."

"ME/CFS’s most notable characteristic is enduring and disabling fatigue. People with ME/CFS, the vast majority of whom are women, were dismissed, even scorned, for years. Physicians said their problems were primarily psychological; journalists, writing in the mid-1980s, popularized the term “yuppie flu” to describe their illness"

"In a study from the U.S. National Institutes of Health published in 2019, ME/CFS patients reported that exercise, compared to activities like grocery shopping or going to the doctor, triggers post-exertional malaise that comes on faster and lasts longer."

 

Why does this always get written in the past tense? None of this is over, it's in fact worse than it ever was. We are in the absolute worst phase of this, despite the advances that were made, because none have made any difference.

This is not something that happened a generation ago. It is happening right now, damnit. It keeps erasing the present while discussing the exact same issue being erased.

Ugh. Despite being generally OK overall. But where does this idea even come from? Who do they talk to that says it's in the past?! While literally discussing it happening right now. Blergh.

 

Long Covid advocacy should be expected to ramp up this year. People reaching 2 years have gotten the message that help is not coming from inside the house of medicine, it will have to be forced to do the bare minimum and governments are completely hooked on the hopium, at least for now.

The Millions Missing event this year has to be huge. HUUUUUUUUUUUUUUUGE. Because nothing's moving, everyone is paralyzed waiting for someone to get the basic work but no one wants to actually do it. I keep seeing LC being "ill-defined" and other failures that are 100% medicine's fault, but the fault is always laid on the patients, somehow. The people who did most of the work so far.

https://twitter.com/user/status/1480489236092620800

 

Article from Canada with among other professor Simon Décary and with several mentions of ME:

Maclean's Chronic exhaustion, derailed lives and no way out. This is long COVID.

Quotes:

ME/CFS’s most notable characteristic is enduring and disabling fatigue. People with ME/CFS, the vast majority of whom are women, were dismissed, even scorned, for years. Physicians said their problems were primarily psychological; journalists, writing in the mid-1980s, popularized the term “yuppie flu” to describe their illness.

Guidelines released in 2007 recommended that patients with ME/CFS receive cognitive behavioural therapy and graded exercise therapy, a regimen of ever-increasing physical activity. So doctors encouraged patients to find a solution in gyms and therapists’ offices rather than medical clinics.

This had a double-whammy negative effect: patients felt scorned by the house of medicine and also suffered from its advice. When they turned to exercise, some patients were overcome with post-exertional malaise.

The exhaustion could go on for days, weeks or longer. In a study from the U.S. National Institutes of Health published in 2019, ME/CFS patients reported that exercise, compared to activities like grocery shopping or going to the doctor, triggers post-exertional malaise that comes on faster and lasts longer.

...

ME/CFS and long COVID are not the same thing. For one, ME/CFS requires patients to have been ill for at least six months. And long COVID is an umbrella term that covers a broad group of patients. But the two conditions have overlapping symptoms: fatigue, post-exertional malaise, POTS. Now that long-haulers are reaching the six-month marker of illness, some meet the criteria for ME/CFS, too.