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

The article mentions that anti-histamines were helpful for MCAS and histamines. There are pwME with these issues but I personally don't know of any who take them.

 

The Guardian How Covid changed medicine for the future

“There might be a point of no return for many ME/CFS patients – this might also be the case for long Covid, if you don’t treat early in the disease onset,” says Pretorius, “then the body can become overwhelmed by inflammatory molecules that may cause significant damage. We suspect the reasons why people develop long Covid from a viral infection could be similar to why individuals develop ME/CFS.”

 

(please withhold judgment, only just sharing excerpts)

Posted on 2/19/22, @mtosterholm [Dr. Michael Osterholm] joined Joe Rogan's podcast to discuss several aspects of COVID-19. One topic discussed was Long COVID & relation to ME/CFS. I will relay some of these quotes.

(Rogan's podcast reaches an estimated 11 million people per episode, making it Spotify's most popular show as of Feb 5, 2022. Just sharing for reach purposes here.)

Quick excerpts:

MO: ...It’s not really clear what is going on. If you take a step back, remember before COVID ever existed, we had Chronic Fatigue Syndrome. A real condition, people were [are] really suffering.

JR: “Is there a specific infectious disease [for CFS]?”

MO: “Epstein-Barr virus has been often implicated as being a part of this picture. But what it’s really pointing out, is that it’s really about this ongoing immune response that we don’t yet understand. And I think if there is any area that we need tremendous efforts to be put into, it’s Long COVID."

MO: “The issue around the immune response and the host. Your body's ongoing activity, we’ve seen this with Chronic Fatigue and Chronic Lyme, with this same concept. We really are at the opening of what I think will be a huge, huge effort to really look more at long-term impact of immune response once it gets triggered...

We saw it with Chronic Fatigue Syndrome. People have had to suffer with for years and years and years. We didn’t have the major research initiatives around that, that I think COVID now, is drawing the resources towards. And hopefully people that have that condition also can be helped by learning what did COVID do, why did COVID cause this."

 

Salon The kids are not alright: Data suggests 10% of children with COVID-19 become "long-haulers"

Quote:

For one, older children and adolescents appear more at risk of long Covid than babies and young children. Yonts said she is primarily seeing long Covid in the 11 to 17 age range. Mohandas said she's seen the highest prevalence in the 12 to 15 age group.

However, the doctors note an important and concerning caveat: young kids don't have the same ability to communicate what they are experiencing.

"My hypothesis," Mohandas said, on the age range most at risk, "is that I don't think [older children] are more at risk. I think they are more able to voice symptoms."

In addition, Mohandas noted it is easier to notice and track a change in an older child's academic or athletic performance.

Curiously, girls appear to be at higher risk, too.

 

When they look at risk groups for ME one is aged about 12 - 15 and another around menopause. This has been said to be due to hormone influence. I was 14.

Young children and babies may not be able to communicate vocally but a sick child is obvious. Until about 6 or 7 they bounce about like rubber balls no matter what they are doing but when they are even mildly ill they will lie down for a period of time, minutes maybe but longer if they are worse.

My son had intrinsic asthma which stole his energy but did not stop him being a normal bouncy child when he could. Going to school he ran and bounced and jumped, then I would be at the school gates with other mothers saying "Is that not your son lying down in the playground?" Yes it was, but he had run out of energy. 5 minutes lying in the mud and he was back up again.

 

This is the new link

(2 minutes)
Sympathetic coverage of #ChronicFatigueSyndrome & how the prevalence might increase dramatically following the pandemic on San Antonio TV. 2 experts comment.

Start at the point in my link (11:28)

https://www.youtube.com/watch?v=WRTnfm65Pfk

https://twitter.com/user/status/1496172709264375809


Anyone know who the 2 experts are that are interviewed? I was wondering whether the man was one of the people in the Workwell Foundation: a lot of them have PhDs

 

VTDigger: "Vermonters with long Covid still face barriers to care"

"In the way it limits patients’ energy levels, long Covid is similar to myalgic encephalomyelitis, the condition commonly known as chronic fatigue syndrome. Another frequently misunderstood illness that many doctors believe can be triggered by a viral infection, chronic fatigue syndrome took decades to reach widespread recognition in the medical community."

"Doctors call this pattern post-exertional malaise. While exhaustion can be immediate, other symptoms tend to flare 12 to 48 hours after a physical, emotional or cognitive load, according to Lawrence, the physical therapist. Much of her work involves helping patients understand how to budget their limited energy — a process known as pacing — and how to avoid triggers in the first place."

"One important development in long Covid treatment has been understanding that exercise, which is often seen as therapeutic for health conditions, is actually detrimental for many patients. Rather than building endurance, Lawrence said, it can exacerbate symptoms."

 

Wall Street Journal: "The Invisible Kingdom’ Review: Malady Unknown"

"Autoimmune diseases, chronic fatigue syndrome, fibromyalgia, Lyme disease and now long-Covid: These are some of the disorders that don’t have easily identifiable markers. Their symptoms come and go, varying between patients and even within a single patient over time. Yet our medical system doesn’t deal well with uncertainty. If a diagnostic test can’t determine what is wrong, then nothing is wrong; the patient becomes a problem patient, the disease a figment of the imagination."

"As Meghan O’Rourke recounts in “The Invisible Kingdom: Reimagining Chronic Illness,” there is often loneliness in being sick. But for those with rare and undiagnosed conditions, the very acknowledgment of suffering is denied. The chronically ill self is negated, not by disease but by a medical system that frequently rejects patients’ experiences and dismisses their testimony."

"The less we understand about a disease,” Ms. O’Rourke explains, the more the medical profession tends to “psychologize, and often stigmatize, it.” The burdens of proof lie with the patients, yet their testimonies are often considered suspect."

"To refuse this invisibility takes a great act of courage—a demand for better treatment from our medical system."

 

Paywalled article today in DN, Sweden's largest morning paper.

Raw food och rätt andning skulle läka postcovidpatienter
https://www.dn.se/vetenskap/raw-food-och-ratt-andning-skulle-laka-postcovidpatienter/

(ETA: Bragée ME-center is also recommending an anti-inflammatory diet to their ME patients.)

 

Rest of article is behind a paywall

https://www.newscientist.com/articl...causes-of-long-covid-and-possible-treatments/

 

"Wish upon a star and you will be fully healed" is cool, though. Weird how some pseudoscience is unacceptable, while other types are hyped like the second coming of Elvis. Almost like the issue with pseudoscience is belief. Almost. Well, OK, it 100% depends on belief.

 

I have a relatively new member in my group who is convinced that ME/CFS = the nervous system creating toxins that go into the liver. And based on this she gives very confident advice to long haulers in the group, as if this was some obvious fact. I'm the evil idiot in the story questioning and picking on her all the time, as she obviously represents thousands of patients' experiences. She also tells people that if they feel worse (eg even if it's just tachycardia and no other symptoms) after exertion then that is PEM and it fully classifies as ME/CFS because that is the only criteria. What the researchers say is of secondary importance. Multiple biomarkers already exist abroad, just doctors here don't care. She also told us about how she is thinking about reaching out to the media in the name of ME/CFS patients. Here we have basically zero representation in the media, so this has been my nightmare in the past few weeks...

Sorry for the rant but she's had taken so much of my energy with her lengthy quarrels in the past months while giving out shitty medical advice about toxins etc to long haulers that this just came out.

 

National Geographic How COVID-19 can har pregnancy and reproductive health

quote:

“Long COVID affected predominantly women, and they were not listened to,” says Bateman. “They were told it was all an emotional response to the pandemic.”

A quest to understand post-viral syndromes, particularly in women, has driven Bateman’s career. It was also personal. Just as she was graduating from medical school, her sister developed myalgic encephalomyelitis, previously known as chronic fatigue syndrome. She has treated patients with poorly understood conditions like fibromyalgia and ME/CFS for decades, which may prove to be autoimmune or neuroimmune conditions," and are more common in women. She opened the Bateman Horne Center in 2015 to also pursue research.

So far she’s found what she calls “a distinct parallel” between long COVID and those with ME/CFS in terms of inflammation and possible autoimmune characteristics. One of the reasons may be that the female immune system is deeply interlinked with hormones, particularly estrogen. So, understanding the virus means understanding how the immune system responds to this pathogen.

The virus can trigger an incredibly complex web of hormonal shifts, making it hard to pinpoint the origin or cause of these changes, Bateman says. It’s especially difficult for women, who have fluctuating hormones, not only during a single month but also throughout their lives: adolescence, pregnancy and post-pregnancy, during infertility treatments, and midlife changes.

 

"Previously known as Chronic Fatigue Syndrome" I know it is trivial but CFS was ME first!!!!

 

I am sorry you have to play "the heavy". Please be careful about your energy expenditure and try to not harm your health!

 

There's a news article about this in the journal of the Swedish Medical Association too:

Läkare Ivo-anmäld för tips om hjärtdetox och raw food vid postcovid
https://lakartidningen.se/aktuellt/...ips-om-hjartdetox-och-raw-food-vid-postcovid/

Google Translate, English

 

Thanks for your worry! It's actually a bit better now because recently I've "appointed" a second moderator. She is the admin of the biggest covid long hauler group here, herself being a long hauler for two years now. She offered her help after she saw I was struggling with both writing articles and trying to maintain order in the group at the same time. So I expect it to be a little bit better now.

 

Patient-doctor protesting loudly against humbug treatments. Best thing I've seen today