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

Practical Pain Management: COVID Long Haulers and the New Chronic Pain Profile

Most of the article is general info on long covid (and the possible connection with ME/CFS, fibromyalgia, POTS) but here is what some of the doctors said:

Dr. Morlion weighed in on his perspective based on his experience with PASC in his pain clinics: “We have started screening them with a CSI questionnaire and notice elevated to high scores, indicative for central sensitization. These are very preliminary findings but in line with some larger observations made by the colleagues at the free University of Brussels.” He added, “My personal gut feeling tells me that we will look at some common pathway of central sensitization of the nociceptive/pain networks with major emotional distress, probably based on mechanisms of peripheral and central neuroinflammation by the infection.”

Dr. Chung described the theories regarding underlying pathophysiology of POTS in relationship to patients with PASC who present with similar signs and symptoms. “Basically, this appears to be a vasomotor dysfunction. In many cases, we have evidence from cutaneous nerve biopsy and other autonomic tests that the parasympathetic nerve fibers that regulate blood volume and flow are undergoing denervation. Therefore, patients will have trouble regulating their blood flow. Paradoxically, exaggerated central sympathetic tone through baroreflex may be seen to compensate for vasomotor dysfunction, resulting in another set of symptoms, such as palpitation, anxiety, and insomnia.”

If blood flow is not regulated appropriately, people may experience symptoms such as exertional intolerance and fatigue. In addition, brain fog may result, as blood flow may not increase enough to help people concentrate and take on mental activities. Muscle soreness and pain may also be related to this change, again due to affects on circulation, he explained. Further, compensatory sympathetic activity may lead to tachycardia, difficulty sleeping, GI symptoms include decreased appetite, constipation alternating with diarrhea, nausea, and vomiting.

Dr. Chung does see some promise in seeing these phenomena in patients with PASC. He notes the plausible autoimmune basis underlying POTS in patients with or without prior COVID infection. “We are now maybe seeing a rise of an autoimmune condition right after a specific infection. We may be able to find a biomarker for autoimmunity, and, hopefully in the near future, prove a causal relationship between an autoimmune condition and a viral infection.”

(...)

“Immediate treatment is needed to control pain and reduce its chronic impact on patients,” adds Dr. Abd-Elsayed.

Last but not least, stated Dr. Morlion, “Until better data is available, we need to treat these patients with interdisciplinary, multimodal, and biopsychosocial-oriented strategies.”​

 

Why is BPS the default until better data is available? Shouldn’t these zealots have to provide some evidence base for their multimodal therapies? It seems as if they’re ostensibly arguing that BPS should automatically be the reflex until proven otherwise.

 

Thanks @Kalliope

 

Where we still are. Medicine will have actually managed to waste the entire first 2 years of Long Covid chasing its own tail, with nothing to show for it other than small groups with no funding for follow-up research that gets almost no interest. It's almost like the system is built to fail, it's not as if it would be significantly different if it literally were, same outcome.

What is it with a system that is unable to make any progress whatsoever and just keeps plowing along without a plan? Yeah, normally it would simply be cancelled. Except there is no accountability and no one seems to give a damn about system-wide paralysis. Going great! It's a multi-trillion industry and it can't even manage the basics. What a great bargain, let's keep throwing money at this still with zero accountability, it's worked atrociously so far.

https://twitter.com/user/status/1478830327502188555

 

i noticed that too and wondered how he knew it was not a dysfunctional cognition.

 

Just like that I experience a rise, a heave and a in the far back of my throat . So mine too I guess.

Do you think we better alert him to this new and contradictory evidence?

Could be statistically significant.

 

https://newatlas.com/health-wellbeing/long-covid-mild-infections-omicron-autoantibodies/

"Long COVID still a threat after mild infections, researchers warn"

"Persistent autoantibody activity following an acute viral infection has previously been hypothesized to play a role in chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). Some researchers have also suggested lingering autoantibody activity may explain the symptoms behind long COVID."

 

Link to preprint:
https://www.medrxiv.org/content/10.1101/2022.01.05.22268800v1

https://twitter.com/user/status/1479160918999281667

 

This should be in main stream news media stories front page online and print. People are NOT aware. All they seem to hear is that Omicron is mild -- so what's the fuss.

 

https://www.telegraph.co.uk/health-fitness/body/long-covid-devastating-illness-whiplash-work-shy/

Title changed in text but not link.
Haven’t read due to paywall.

 

Telegraph:

'Why the jury is still out on 'Long Covid'
1.3 million people are said to be affected but it’s self-reported, there is no test for it and symptoms are vague. What’s really going on?'

'Long Covid was back in the news this week. Figures obtained by a Freedom of Information request revealed the condition is exacerbating staff shortages in ambulance services, with more than one in 20 members of staff in one trust absent for more than a month with coronavirus-related sickness. 40,000 work days across four major ambulance service trusts were lost due to the condition.'

..... 'At the moment, the jury is out and scientific opinion is divided. Some speculate that, in some people, the virus hangs on in the aftermath of acute infection, retreating to some reservoir site in the body where, beyond the reach of the immune system, it provokes a chronic low-grade reaction. This, they argue, accounts for the energy-sapping symptoms described by more than half of long Covid sufferers. In support of this theory, coronavirus particles have been detected in the intestines of some patients, many months after recovery.

Other authorities point to the fact that women are more frequently affected by long Covid, drawing parallels with the fact that they are also more susceptible to so-called “autoimmune” diseases. This is where the immune system goes rogue and certain body tissues fall victim to friendly fire.'



....' At the moment, we don’t know which hypothesis is the correct one. Nor do we know how best to manage the condition. An inflammatory disease might benefit from suppressing the immune system for a while. But if persistent infection turns out to be the driver, this would be like pouring petrol on a bonfire. Some individuals have also reported improvements when they’ve been Covid vaccinated, although others have reported the opposite, perhaps for the same reason.'


....'Another unappetising prospect is the potential for claims of “long Covid” to become the occupational health virological equivalent of a whiplash for the work-shy, making genuine cases of long Covid harder for victims to defend. Let’s hope not.'

https://www.telegraph.co.uk/health-fitness/body/long-covid-devastating-illness-whiplash-work-shy/



Not a bad article, not good, does not mention existing or proposed research, does not mention ME. The state of the Comments by Telegraph readers should have a warning flag for anyone who is sick with anything whatsoever.
The article's last sentence is like a red flag to a bull for commenting Telegraph readers some of whom are convinced that only people who work in the public sector get Long Covid and that ME was a passing fad from decades ago which doesn't exist anymore.


The Telegraph sometimes does deals where you can subscribe for £1 a month for 4 months then cancel if you want to. The Times does something similar. It is possible to Register (free) with both of those papers (online) which allows you to read 2 articles a week for free. Registering with the Times also allows you to read the comments and comment yourself if you wish. The Times also does a sharetoken scheme, whereby an existing subscriber can get a link which when posted allows others to read the article for a limited time (a couple of weeks).

 

How it happened.

How it's happening again.

https://twitter.com/user/status/1479240104946421763

 

I can relate so much. This is exactly my problem too and I've been thinking about this even more lately, now that I'm actually worse than when I started writing the articles/letters.

I'm literally full of ideas that I feel should be done and could be done quite easily without this disease but very often cognitively or physically I'm just not there and it's incredibly frustrating. So much more could be done!!! Stupid stupid body.

Logically I know this is not a reasonable thought to have but since here in Hungary there is zero interest in ME/CFS and even among the patients I'm the only one taking action, I tend to feel bad whenever I don't have enough energy for a longer period. I feel bad for wasting time, knowing that at least a few people, including long haulers hope something may come out of the efforts. (We don't have any long covid activism at all here either.)

I feel bad for wasting not just mine but every patients' time too when I do nothing because of a longer worse period in the disease. And I know with my brain that this is absolutely not a good way to look at it but the feeling is there regardless. It is incredibly frustrating because otherwise I really do have more ideas than I could count.

 

Long COVID could become Finland's largest chronic disease, warns minister | Reuters

Interesting, I remember 4-5 years ago Finland was pretty abysmal with regards to ME/CFS.

I´ve also noticed considerably more activity / talk about long-covid the recent month. I guess this is the inevitable outcome of most western countries just giving up once Omicron arrived.

https://twitter.com/user/status/1478941377421627395


Mehdi Hasan usually mostly covers politics from a centre left position in the states.

https://twitter.com/user/status/1479436640670126088


Tilda Swinton talking so openly and casually about long-covid shows the progress that has been made in coverage of post-viral fatigue syndrome. If only that progress would be converted into funding and studies!!

 

The Finnish announcement compared on twitter
https://twitter.com/user/status/1479602183284805633

 

https://www.prnewswire.com/news-rel...ts-with-long-covid-19-syndrome-301456006.html

"People who suffer from Long COVID Syndrome and ME/CFS have nearly identical physical symptoms and there may be a similarity in the underlying pathophysiology related to mitochondria and purinergic signaling. Using a purinergic antagonist, like suramin, may play an important role in addressing both of these syndromes," commented Robert Naviaux, MD, PhD and co-Director of the Mitochondrial and Metabolic Disease Center at the UCSD School of Medicine."

 

However, actions taken about Long Covid by each government:

Finland: lol

USA: nuh

Every other country: hahahaha, no

Words are nice. Empty words aren't. Just like Collins' "hope without action". There is no action here, just empty words. Those are cheap, we've heard them all.

 

So, to sum up . . . #nowordswithoutaction