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

Long-Covid patients ‘gaslighted’: Founder of support group calls for clearer guidance for medics and the public


https://www.independent.ie/irish-news/news/long-covid-patients-gaslighted-41096001.html

Some extracts:
---
She said research on other post-viral illnesses indicates it could take around two years to fully recover from long-Covid. Patients suffer from a range of symptoms, from lung problems and serious breathing difficulties to an inability to walk even short distances due to chronic fatigue.
---
“Chronic fatigue is a major issue, but many people, including a lot of employers, do not understand. The stigma is not that we’re sick, it’s that we’re being called lunatics. Not understanding long-Covid is re-stigmatising us.”
---
“We know what we need: time for our bodies to heal,” Ms Twomey said. “We need to be listened to and heard because this can’t continue. Long-Covid is not going to go away because Covid is not going away. We are the experts by experience, but we are being gaslighted.

“We understand medics can’t make it go away, there is no magic bullet. What we want is to be acknowledged.”
---
Ms Twomey got Covid in March last year at the outset of the pandemic. She said she is “95pc better” but still is not fully recovered.

“I feel lucky now. I don’t have to go to bed in the day any more from sheer exhaustion. But at one stage I couldn’t climb the stairs without getting breathless and I had a lot of neurological pain and a shingles-type rash. Fatigue was the biggest problem.

 

Yes. Just like ME has been conflated with non-ME fatigue, they are going to conflate long COVID with "lockdown burnout" or whatever you want to call it.

 

just in reference to the earlier article

I don’t see the problem - give them the physical diagnosis that WHO has defined. This gives them validation and a sense of control and they follow the recommended treatment and then leave it.

If the pwLC want help with mood, anxiety or PTSD from their experiences, ask if they want this to be assessed by a qualified professional and then offer evidenced based treatment. You can have both, they are just over complicating and psychologising the illness.

Making up some new psychological syndrome or psychiatric label with no validity is a not good medicine…Just something to stigmatise the person with.

 

https://www.npr.org/2021/11/29/1058...nic-fatigue-syndrome-may-offer-a-guiding-star

NPR: "For patients with long COVID, chronic fatigue syndrome may offer a guiding star"

Some excerpts:

"The deep fatigue Fisseha experiences is one of the most frequently reported long-term effects of COVID-19. It's known as "post-exertional malaise," a worsening of symptoms such as pain or fatigue after physical or mental exertion."

Alison Sbrana knows better than most people what that "if" means."

"She has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It's a disease with a lot of symptoms that overlap with long COVID."

"There is this presumption that perhaps it's just depression or anxiety, or perhaps it's the pandemic or the state of the world, but people know when there's something wrong with them," says Jaime Seltzer, director of scientific and medical outreach at #MEAction, which advocates for people with ME/CFS.

She says there are lessons doctors and researchers can learn from people like herself.

"People with chronic complex disease have been living with this for decades. Researchers have been studying this for decades," Seltzer says. "We definitely need to make use of the path that we've beaten down over time and start basing our hypotheses off of what we've seen in these diseases with other labels."

 

It appears that the lead researcher on one of the $470M NIH initiative is a psychiatrist, which I guess means they have little intention of actually solving this. The NIH does seem willing to waste a billion dollars.


Mount Sinai Named a Lead Site for Enrollment in Nationwide Study on the Long-Term Effects of COVID-19
https://www.newswise.com/coronaviru...g-term-effects-of-covid-19/?article_id=761297

“Understanding the long-term effects of SARS-CoV-2 on human health is one of the great scientific challenges of our time,” said the lead Principal Investigator of the adult cohort, Alexander W. Charney, MD, PhD, Assistant Professor of Psychiatry, Genetics and Genomic Sciences, Neuroscience, and Neurosurgery at Icahn Mount Sinai.​

There is something remarkable about committing every single mistake and failure made before. At least he doesn't appear to be a BPS ideologue, but still, a whelming meh:

His expertise is in the genetic architecture of neuropsychiatric disease and integrative approaches to analyzing multiscale datasets. He has been the lead data scientist on genetic studies of schizophrenia and bipolar disorder, including genome-wide association studies, copy number variant studies and rare sequencing variant studies. Currently, he plays a lead role in several of the largest studies in the field of psychiatric genomics.​

 

Tomorrow:

https://twitter.com/user/status/1463252855901409283

 

https://twitter.com/user/status/1458951743820099584

 

I don’t understand what “RTHM” is, but it looks like they are offering the same low evidence treatments that are used at the specialist ME/CFS clinics.

yes, I’m bitter. I’ve done dozens of these treatments and they were largely ineffective.

It is good if more patients can access this care, in many ways it is the best we have. But it’s hardly a breakthrough.

 

https://twitter.com/user/status/1465257976936214531

 

https://twitter.com/user/status/1464238583200452610

 

Merged thread

Wales: Doctor with long Covid found to have multiple blood clots in his brain

Dr Ian Frayling, 62, a retired NHS genetic scientist, has battled long Covid for more than a year and a half

https://www.walesonline.co.uk/news/health/doctor-long-covid-found-multiple-22277494

 

Dr. Jennifer Curtin claims on her website that she has recovered from ME/CFS.

 

Poor guy.

It's kind of annoying when clinical get all the free tests and work out what's wrong with them and recover, but it does at least add to the "told you so" collection.

(Edit - I mean "told you so" to the guy, just to the rest of the world)

 

https://www.upi.com/Health_News/202...chronic-fatigue-syndrome-study/1531638207439/

"'Long COVID' symptoms similar to chronic fatigue syndrome, study finds"

"People with "long-haul" COVID-19 have symptoms of chronic fatigue syndrome and other breathing problems months after first testing positive for the virus, a study published Monday by the Journal of the American College of Cardiology found."

"Nearly half the participants in the small study met the criteria for chronic fatigue syndrome, or myalgic encephalomyelitis, the data showed."

 

In addition, they had low carbon dioxide values at rest and with exercise, suggesting chronic hyperventilation. why did they not measure the breathing rate instead of assuming hyperventilation . researchers who make assumptions should find other employment .

 

It would be fantastic if everyone with LC was examined this thoroughly, instead of being fobbed off as neurotic, or benefit seeking. Wonderful to get effective treatment too.

Same wishes for ME!!!

 

Another NIH researcher is blaming 'anxiety'. As I said, the NIH seems like it will throw Long Haulers under the bus.

 

[This hopefully is 'just' the immediate after effects of Covid infection]

UK Snooker Championship 2021: Mark Williams falls asleep during Anthony Hamilton defeat

"I need to be playing in the mornings really, or afternoons. The more the day goes on the more tired I get.

"It's disappointing but there's a lot worse people that have had Covid than I've had it, so I'm one of the lucky ones really.

"It's definitely better than what it was a couple of weeks ago so I've just got to keep going, but if I play night matches I'm going to really struggle."

https://www.bbc.co.uk/sport/snooker/59457433

 

https://www.phillyvoice.com/long-covid-chronic-fatigue-syndrome-symptoms-treatment-research/

PhillyVoice: "Chronic fatigue syndrome may provide valuable insights into long COVID"

"Studies have suggested that long COVID and chronic fatigue syndrome not only share symptoms, but similar biological markers."

"An article published in the Proceedings of the National Academy of Sciences also found the conditions share similar biological markers, including oxidative stress, systemic inflammation, a low metabolic rate and an impaired ability to generate adenosine triphosphate – an important source of energy.

"The body's response to infection and injury is complex and covers all body systems," said Bindu Paul, a pharmacology and molecular sciences professor at Johns Hopkins University. "When that response is in disarray – even just one aspect of it – it can cause feelings of being tired, brain fog, pain and other symptoms."

"These findings have led to a call for more research on long COVID to involve a comparison to chronic fatigue syndrome on a molecular level."

"Advocates for long COVID and chronic fatigue syndrome patients hope that focusing on the shared pathways of the two illnesses will lead to better treatment options, according to NBC News. Right now, there are no Food and Drug Administration-approved treatments for either condition."