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

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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."

 
FIhfNYCXMAM0C4G


Yes, it will be interesting to see, @Sly Saint
 
(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."
 
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Midnattsol said:
NRK has a lightning process recovery story today, nothing about potential harms, only that there is not enough evidence behind the method for it to be used systematically in clinical practice :banghead:

Foreldrene fryktet ME-syke Emilie skulle dø – nå skal hun til OL
Her parents feared ME-sick Emilie would die - now she is going to the Olympics
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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 :(
 
Kalliope said:
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 :(
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For "balance" they should include a patient that got worse, but of course that is not something that is not as easy a story tell publicly (although many have done so). I get so tired of this. I wonder how the project at NTNU goes, will they be able to rehash it into something Forskningsrådet will still fund or not? At least it seems a few health care workers have reacted to how Henrik Vogt has gone on about them in the media, but will they see that is the exact same thing he does to the ME community?
 
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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."
 
Dakota15 said:
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"
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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.

 
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.
 
Kalliope said:
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.
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Copied across from https://www.s4me.info/threads/evide...ifferent-from-me-cfs.23834/page-2#post-401386

DC and HHS pages on Long COVID make it very clear that at least from the US Gov perspective LC is a clinical concept wholly separate from ME/CFS

CDC.gov Post-COVID Conditions: Information for Healthcare Providers

https://www.cdc.gov/coronavirus/201...019-ncov/hcp/clinical-care/late-sequelae.html

Includes:

"Post-COVID conditions are being referred to by a wide range of names, including long COVID, post-acute COVID-19, long-term effects of COVID, post-acute COVID syndrome, chronic COVID, long-haul COVID, late sequelae, and others, as well as the research term post-acute sequalae of SARS-COV-2 infection (PASC).external icon Although standardized case definitions are still being developed, in the broadest sense, post-COVID conditions can be considered a lack of return to a usual state of health following acute COVID-19 illness. Post-COVID conditions might also include development of new or recurrent symptoms that occur after the symptoms of acute illness have resolved."

...............................................

"We use post-COVID conditions as an umbrella term for the wide range of health consequences that are present four or more weeks after infection with SARS-CoV-2. The time frame of four or more weeks provides a rough approximation of effects that occur beyond the acute period, but the timeframe might change as we learn more.

It can be difficult to distinguish symptoms caused by post-COVID conditions from symptoms that occur for other reasons. Patients experiencing the acute and post-acute effects of COVID-19, along with social isolation resulting from COVID-19 pandemic prevention measures, frequently suffer from symptoms of depression, anxiety, or mood changes. Alternative reasons for health problems need to be considered, such as other diagnoses, unmasking of pre-existing health conditions, or even SARS-CoV-2 reinfection. For clinicians considering whether new symptoms could be explained by reinfection, please refer to the CDC guidance on investigating suspected reinfection."


HHS.gov Guidance on “Long COVID” as a Disability Under the ADA

https://www.hhs.gov/civil-rights/fo...ovid-disability/index.html#footnote10_0ac8mdc

Includes:

"1. What is long COVID and what are its symptoms?

According to the Centers for Disease Control and Prevention (CDC), people with long COVID have a range of new or ongoing symptoms that can last weeks or months after they are infected with the virus that causes COVID-19 and that can worsen with physical or mental activity.

Examples of common symptoms of long COVID include:
  • Tiredness or fatigue
    • Difficulty thinking or concentrating (sometimes called “brain fog”)
    • Shortness of breath or difficulty breathing
    • Headache
    • Dizziness on standing
    • Fast-beating or pounding heart (known as heart palpitations)
    • Chest pain
    • Cough
    • Joint or muscle pain
    • Depression or anxiety
    • Fever
    • Loss of taste or smell
This list is not exhaustive. Some people also experience damage to multiple organs including the heart, lungs, kidneys, skin, and brain"

...........................................

"a. Long COVID is a physical or mental impairment

A physical impairment includes any physiological disorder or condition affecting one or more body systems, including, among others, the neurological, respiratory, cardiovascular, and circulatory systems. A mental impairment includes any mental or psychological disorder, such as an emotional or mental illness.

Long COVID is a physiological condition affecting one or more body systems. For example, some people with long COVID experience:
  • Lung damage
  • Heart damage, including inflammation of the heart muscle
  • Kidney damage
  • Neurological damage
  • Damage to the circulatory system resulting in poor blood flow
  • Lingering emotional illness and other mental health conditions
Accordingly, long COVID is a physical or mental impairment under the ADA, Section 504, and Section 1557."
...........................................

"Long COVID can substantially limit a major life activity. The situations in which an individual with long COVID might be substantially limited in a major life activity are diverse. Among possible examples, some include:
  • A person with long COVID who has lung damage that causes shortness of breath, fatigue, and related effects is substantially limited in respiratory function, among other major life activities.
  • A person with long COVID who has symptoms of intestinal pain, vomiting, and nausea that have lingered for months is substantially limited in gastrointestinal function, among other major life activities.
  • A person with long COVID who experiences memory lapses and “brain fog” is substantially limited in brain function, concentrating, and/or thinking."
 
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