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

Jason is right, it's possible that we're heading towards very serious problems. It looks like we're heading towards multiple covid waves every year, with every wave causing new long covid cases in a portion of the population, a portion of cases resulting in chronic health problems, and a portion of these health problems being severe and disabling. Depending on how large each of these portions is and how vulnerability to the disabling chronic health problems works it could become a truly frightening problem over time (it's bad enough already as is, but might become much worse).

Especially when kids are vulnerable. Children being born now, by the time they grow up might have something like 10 symptomatic infections (or more, depending on the virus evolution and ability to reinfect people every year). Is every infection a new chance to become disabled? I don't think we can exclude that. Can only people with a predisposition become disabled? We don't know. We're so unprepared for this.

 

An infectious disease doctor was making these exact comments this morning on the news. He also mentioned the higher increase rate in Type 1 Diabetes in Covid children with possible genetic factors and now reactivations of EBV.

 

Dr. Michael Osterholm: Episode 88: Vaccines, Variants, and Long COVID.

56-minute mark: “This not a new phenomenon. We have previously documented chronic implications for infections like Epstein-Barr virus & others that may cause the same picture and surely has some ties to the work we’ve been doing with chronic fatigue syndrome.”

“What can we learn about Long COVID from other post-viral syndromes that I just mentioned - Epstein-Barr virus, Cytomegalovirus, Human herpesvirus, enteroviruses & more? I think this is a very rich area for research.”

 

Strategist said: .... ".... Jason is right, it's possible that we're heading towards very serious problems...."



Not according to the Mail readers who are out in force in the Comments, insisting that Long Covid is Only vaccine injury, "a cold", depression, that Covid and Long Covid don't exist - and that Jason is not an expert.

I do get the sense from some Comments sections in the nationals on articles on both LC and ME that many of the commenters are not common or garden readers but agenda-driven lobby members.

The comments to one article are *majority* insisting that ME and LC are "hysteria", the comments to another article are *majority* accusing sufferers of "swinging the lead/malingering" and angling for "benefits". The sheer numbers of similar comments in the same place is staggering - are they all just copying each other? Or do certain groups with an agenda target certain articles? I don't know but it's very noticeable.


Edit: Variations of the 'LC is malingering' and 'LC is just about trying to get benefits' tropes includes (paraphrased)

'It's only people who work in the public sector who claim to have LC',
'People who work in the private sector can't afford to have LC'
'Self employed people never get LC',

And, bizarrely, 'People claiming to have LC are all Brexit Remainers'

 

Yes, I wonder if certain responses resonate with the papers line/underlying beliefs and are deliberately selected for publication on that basis. Perhaps, if you don't share those beliefs then you will not persist on the site, so it's only the faithful who populate the space; therefore, those non-representative views are the predominate ones/published. An alternative is that someone (influential) is orchestrating this i.e. submitting the responses ---- not accusing the journalists themselves of course ----

EDIT - see @Lou B Lou comment below "The Mail did not select or moderate the Comments to this article."

 

The Mail did not select or moderate the Comments to this article.

 

Danish news about health care workers who suffers from Long Covid being of risk of becoming fired. Wonder who they plan to replace them with..

TV2 Direktør om syge ansatte: - Ulykkeligt, men vi kan blive nødt til at afskedige
google translation Director about sick employees: - Unfortunate, but we may have to lay them off

Quotes:

According to the group director, the region has "with patience and ingenuity" done what they could to help employees get back to work, nor is he without understanding that health workers have been exposed to a particular strain, he points out.

- We have been used to treating infectious diseases, but this has had a volume that we are not used to, so I recognize that there may be a gap for some employees who are long-term sick and have difficulty see that they can return to their work, and there we have no different solution than we have for others who can not return to their work, says Ole Thomsen, who calls it "terrible when someone gets sick from their work ".

...
There are several cases where employees can only work so few hours that, according to the executive vice president, it's too fragmented, and unlike the military, the hospitals do not have a veterans' scheme for those who have become ill due to their job.

 

The tribe must move on. You cannot follow the tribe with your injury, therefore we will leave you behind. Sucks to be you, at least it's not me.

We really aren't much better than this. No compassion even for their own, how can they possibly have any for us? I didn't think they'd abandon their own given the scale but damn, they're doing it straight savage, like dirty used rags. It really is all about people's ability to understand that it could happen to them. Here they clearly don't believe it could affect them, they feel safe from it, see no reason to protect anyone from it, and view those who fell to it as weak, victims of themselves.

 

A Swedish doctor, who has been suffering from long covid for almost 2 years now, shares her story. She writes about symptoms, treatments and other experiences, the need for more research, the cultural illness hypothesis, and more. (ME is not mentioned.)

Läkare med postcovid: Jag saknar den jag var
https://kvartal.se/artiklar/lakare-med-postcovid-jag-saknar-den-jag-var/

Google Translate, English ("Doctor with postcovid: I miss who I was")

A person with ME commented on one of her tweets:

 

BBC Inside Science
Predicting Long Covid, and the Global Toll of Antimicrobial Resistance

From the description:
Prof Onur Boyman, Director of department of Immunology at University Hospital, Zurich, this week published a paper in the journal Nature Communications that presents a way of quantifying the risk of a Covid patient going on to develop Long Covid (or PACS as some call it) based on certain symptoms, but crucially also two key biomarkers in the blood. As he explains to Gaia, combining the levels in the blood of two key immunoglobulins (IgM and IgG3) with other pointers, first identified last year, allowed him and his team to make successful predictions as to the relative likelihood his sample group of patients might go on to still be exhibiting symptoms beyond four weeks after infection. Asthma is of particular interest to these researchers, partly because it can share this blood signal of Ig markers. Might it even also shed any light on things such as Chronic Fatigue Syndrome?

Dr Claire Steves, of Kings College London, whose previous work on symptom gathering Onur's team have built upon, agrees this is a promising bit of work, and also discusses some other potential clues to the Long Covid mystery.

 

Infection Control Today: Long COVID Shouldn’t Have Taken Us by Surprise

Some quick excerpts:

"Long COVID’s symptoms seem to match those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition that millions have suffered from for decades."

"Long COVID isn’t an anomaly. In fact, evidence that individuals would suffer symptoms weeks, months or even years after they’ve gotten COVID-19 and then “recovered” had been known for decades. Long COVID presents with symptoms very similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and an advocacy group for those with ME/CFS wants the National Institutes of Health (NIH) and other federal agencies to consider the two conditions linked—and that the battle against one should also be the battle against the other."

"“This comes as no surprise to the ME/CFS community,” Adriane Tillman, the editor at #MEAction, an advocacy organization for people with ME/CFS, writes in an email to Infection Control Today. “Long COVID is not a new phenomenon—there are millions of Americans who got sick with a virus and never recovered before the pandemic, and developed ME/CFS. The only difference is that we are seeing this happen now in real time on a massive scale.”

 

This was a good article. Seems another one is in the making:

Tweet from It'sME(Jaime)@exheedhergrasp1
The author of this article, Frank Diamond, interviewed me today -- probably coming out next week. He concluded with, "good luck in the fight." Grateful for people who are invested in getting the word out about #MECFS and #LongCOVID.

Edit: The article "Getting a head start on treating long covid" is now out, and we have a thread about it here: Getting a Head Start on Treating Long COVID, Infection Control Today interview with Jaime Seltzer of MEAction

 

She is really pushing this hard. Heartening to see someone with influence advocating with this much energy.

I don't know if she is aware but the entire Massachusetts congressional delegation signed a few years ago onto a resolution for ME. Would be great if SolveME got in contact. This included both senators, Markey and Warren.

https://twitter.com/user/status/1487470596653031426

 

There was a report on the news this evening about work being done on Long Covid, in Oxford, I think, where patients' lung scans appear normal - until you do an MRI scan with inhaled xenon, which shows up that there are abnormal areas in the lungs.

Edit: Ah, yes, here you are:

https://www.bbc.co.uk/news/health-60154398

https://news.sky.com/story/coronavi...tients-suffering-from-breathlessness-12527843

 

Dr. Jeanette Brown works with long haulers as director of the Comprehensive COVID-19 Clinic at University of Utah Health.

“This was a pretty well-done study,” Brown said. “They looked at 175 patients with Covid and followed them over a year.”

Researchers watched the patients’ symptoms, developed a scoring system, and tried to predict from their immune responses who would develop post-COVID-19 symptoms.

“They felt like it was about 75% effective at predicting who is going to have persistent symptoms,” Brown said.

If they can validate these findings with more patients, that could help researchers develop new treatments targeting symptoms of the long haulers.

“You can target potential therapies earlier, or identify those patients for research long term,” Brown said. “I think that’s how this could potentially help if it was validated.”

https://ksltv.com/482525/blood-test...-having-long-term-health-effects-of-covid-19/

I watched a short interview with Dr. Jeanetter Brown the other day on CBC and she said that they are seeing the majority of LC patients are females between the ages of 18- 55 years old.

 

So, the majority of LC sufferers are coming from a group of women who are of an age to have started their periods in the previous 10 years up to and including women who may have stopped having periods in the previous 10 years. I wonder how many of them were iron deficient before they got Covid?

 

Federal News Network: Omicron amps up concerns about long COVID and its causes

"Some scientists worry that long COVID in certain patients might become a form of chronic fatigue syndrome, a poorly understood, long-lasting condition that has no cure or approved treatment."

"One thing’s for sure, some experts say: Long COVID will have a huge effect on individuals, health care systems and economies around the world, costing many billions of dollars."

“So many people are losing their livelihoods, their homes. They can’t work anymore,” she said. “Long COVID will probably have a more severe impact on our economy than acute COVID.”

 

Vox: What causes long Covid? Scientists are zeroing in on the answer.

"It’s not fully understood what these so-called “viral reservoirs” do in the body. Proal’s previous work on myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome), an illness that has substantial similarity with long Covid, suggests that persistent virus — Epstein-Barr virus, in the case of ME/CFS — can wreak havoc on the body long after acute infection."

 

PolyBio Research Foundation: Considerations when developing LongCovid therapeutics

w/Dr. VanElzakker

2:07: "The symptoms of ME/CFS really do overlap with Long COVID. This is the international consensus criteria of Myalgic Encephalomyelitis and I'm not going to make you read through it, but it's essentially the same basic symptoms as we see in those Long COVID patients"