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

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Wyva said:
But, for the first time, there will be a significant cohort of patients with the same, known trigger for their symptoms.
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Pffff. Again with this BS. Always with the blatant BS. I can't wait for this BS to be shamed. Completely deflecting the responsibility that comes with the job. Not only it could have been done, it was asked, begged, endlessly for decades. Everyone said "NO!". The hammer has to come down, naming, shaming and blaming with a massive load of compensation for it.
 
Eye problems have been noted in ME, but barely researched. I see roughly the same issues with Long Covid: blurry vision, static, shakiness, glare, floaters, difficulty to focus, etc. Could be interesting to see if similar, could possibly explain floaters, which I guess the technology doesn't exist to see? Which seems a bit absurd but whatever.

 
Jonathan Edwards said:
Floaters can be seen on standard slit lamp examination. I have had them for decades according to my ophthalmologists and opticians.
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I would have imagined as much but I normally have easily dozens if not 100+ and the optician said they didn't see anything. I've read many reports of long haulers with lots of eye floaters saying they couldn't see them either, even in ophthalmology (which I assume has better instruments but maybe not).

In fact I don't remember anyone, with ME or LC, saying they got checked and floaters were confirmed. Maybe those are smaller/different than what is usually seen in retinal detachment? The way I've seen them described is usually similar to what I see: tiny knotty strings.
 
rvallee said:
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at 29.50 there's a question about Long Covid and ME and whether Long Covid researchers will work with ME researchers.
Professor Emma Duncan from King's College London says that they've been cooperating with some from NIH (no names) who "have a lot of experience at working with chronic fatigue and how to manage it". The management strategies she mentions as useful to help with it are acceptance therapies, exercise therapy (for some individuals), dealing with the difference between physiological breathlessness versus psychological breathlessness. "all of these types of programmes which has been developed for chronic fatigue will certainly be considered"
 
Psychology Today: The Link Between Long Covid and Chronic Fatigue

The bad: the article keeps referring to ME/CFS as chronic fatigue or post viral exhaustion. The good (meaning that they stress this is not psychological):

"There are reports that some physicians are misdiagnosing patients with long Covid as sufferers of mental illnesses (e.g., depression) or psychotic symptoms (e.g., somatic delusions), which can leave sufferers feeling isolated and not listened to. Although some countries and physicians are starting to recognise long Covid as a real medical condition, there is the risk that some people are carrying a wrongful diagnosis. If you are concerned about a misdiagnosis, speak to your physician or seek a second opinion."​

Full article: https://www.psychologytoday.com/ca/...e-link-between-long-covid-and-chronic-fatigue
 
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Wyva said:
he bad: the article keeps referring to ME/CFS as chronic fatigue or post viral exhaustion
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I'm not sure that I entirely agree. Most of the time when referring to "chronic fatigue" the reference is to the symptom rather than the disease, and that seems a legitimate use. There is at least one obvious inappropriate use in the "key points" but that may merely be a slip.
 
chrisb said:
I'm not sure that I entirely agree. Most of the time when referring to "chronic fatigue" the reference is to the symptom rather than the disease, and that seems a legitimate use. There is at least one obvious inappropriate use in the "key points" but that may merely be a slip.
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You're probably right. My cognitive function has been pretty horrible today, my ME brain probably saw that first CF reference and just read the whole article that way somehow. :emoji_shrug:
 
Daniel Hattesohl, Chairman of the German ME/CFS Association has written an opinion piece for Tagesspiegel.

Long Covid kam nicht überraschend
google translation: Long Covid came as no surprise

A few quotes:
Postviral syndromes have been known for at least 80 years. We know from hundreds of studies and descriptions of cluster outbreaks in hospitals and small towns that post-viral syndromes can occur after various viral diseases. Postviral fatigue and ME/CFS in adolescents often occur after Pfeiffer's glandular fever, triggered by the Epstein-Barr virus. The occurrence of ME/CFS has also been well documented after enteroviruses, influenza and SARS. After the SARS epidemic in 2003, around 30 percent of those infected contracted myalgic encephalomyelitis/chronic fatigue syndrome.
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ME/CFS has been recognized as a neurological disease by the WHO since 1969. It took until 2003 to put the leading symptom post-exertional malaise at the center of the disease. Previous studies often ignored it. This has watered down studies, selected incorrect samples, and recommended counterproductive therapies. Even today, ME/CFS-typical symptoms such as PEM, Brainfog or orthostatic intolerance are almost never queried in Long Covid studies and therefore do not appear in most studies.
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Today there are many ME/CFS studies that have shown organic abnormalities, but were not continued due to lack of funds. For example, in June 2021 there were many press articles that long-covid sufferers showed limited deformability of red blood cells. Similar observations were made with ME / CFS in 1986 , 1987 , 1997 and most recently in 2019 . Scientists doing research on Long Covid should therefore familiarize themselves with ME/CFS research so as not to start from scratch.

 
I don't remember this being posted, this is HHS (federal health department) guidance on Long Covid for recognition of disability, taken from the CDC, which basically copy-pasted it from the ME guidance, without any attribution to it. At which point does ignoring the clear evidence start to become overt discrimination and runs afoul of legal requirements?

 
This was a good article from The Body, where also dr. Avindra Nath from NIH has been interviewed.

With or Without HIV, Folks Living With Long COVID and ME/CFS Are Desperate for a Breakthrough

quote:

Nath said he and other researchers think that genetic factors, likely not limited to a single gene, may trigger prolonged immune activation in patients with long COVID. “In these individuals, we see a lot of macrophage activation,” he said, referring to immune-system cells that target and destroy foreign invaders like bacteria and viruses. “When that occurs, it’s hard to turn it down,” said Nath, meaning that macrophages are attacking “good” cells that the invaders are mixed into—hence long COVID’s wide array of unpleasant symptoms like fatigue and brain fog. He compared the activity to military bombs that destroy not only intended targets but unintended, innocent civilians as well.

Nath thinks something similar goes on with ME/CFS, even though he said, “We have to be careful not to say that everyone with long COVID has ME, because long COVID could be caused by other [factors] of having had COVID.”
 
Science The road to addressing Long Covid by Nisreen A. Alwan

ME is mentioned twice:

Long-term sequelae have been reported with other viral infections. Most relevant are other coronavirus diseases, with a quarter to a third of those with SARS and Middle East respiratory syndrome (MERS) having lingering lung function abnormalities, reduced exercise capacity, and psychological manifestations (9). Autonomic dysfunction after viral illness, which has been observed in Long Covid but is also a feature of similar conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), can cause disabling syndromes including postural orthostatic tachycardia syndrome (POTS). Exact case definitions of what is collectively termed “postviral syndrome” are needed. Long Covid research may also be applicable to a wider range of chronic illnesses, including ME/CFS, which similarly lack adequate understanding and recognition.

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Rigorous research to understand the mechanisms, risk factors, prognosis, and subgroup characteristics, and to identify potential therapeutics for Long Covid, is desperately needed. Other chronic conditions, such as ME/CFS, fibromyalgia, and some connective tissue disorders, are largely under-researched in terms of underlying mechanisms, diagnostics, therapeutics, and management options. The understanding of Long Covid offers an opportunity to pave the way toward better outcomes for all patients experiencing similar conditions.
 
Kalliope said:
Science The road to addressing Long Covid by Nisreen A. Alwan
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Eric Topol (Wikipedia):
Eric Jeffrey Topol (born 26 June 1954[1]) is an American cardiologist, scientist, and author. He is the founder and director of the Scripps Research Translational Institute,[2] a professor of Molecular Medicine at The Scripps Research Institute, and a senior consultant at the Division of Cardiovascular Diseases at Scripps Clinic in La Jolla, California. He is editor-in-chief of Medscape and theheart.org. He has published three bestseller books on the future of medicine.[3] The Creative Destruction of Medicine (2010), The Patient Will See You Now (2015), and Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again (2019). He was also commissioned by the UK 2018–2019 to lead planning for the National Health Service's future workforce, integrating genomics, digital medicine, and artificial intelligence.
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Stanford Medicine - News Center
Stanford Medicine opens clinic for patients struggling with long COVID - by Tracie White

quote:
Clinicians are taking cues from what is known about other chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome, a condition that often manifests after a viral infection and also has no known cause or standardized treatment, said Aruna Subramanian, MD, clinical professor of infectious disease at Stanford, who co-directs the ME/CFS Clinic. Long-COVID and ME/CFS symptoms are often similar and can include headaches and brain fog, as well as profound fatigue and something called post-exertional malaise — the worsening of symptoms after even minor physical or mental exertion.

“There seems to be a lot of overlap,” Subramanian said. “Working in the ME/CFS clinic, we see people who may have had other viral triggers, got sick … and their lives changed.”
 
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