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andyguitar

Senior Member
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South east England
This just came up on the BBC website:
Screenshot 2021-07-12 at 01-21-15 Long Covid Early findings bring hope for diagnostic tests.png
 

Pyrrhus

Senior Member
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4,172
Location
U.S., Earth
An exciting new discussion:

Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms (Proal and van Elzakker, 2021)
https://forums.phoenixrising.me/thr...te-to-persistent-symptoms-polybio-2021.84761/
The novel virus severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has caused a pandemic of coronavirus disease 2019 (COVID-19). Across the globe, a subset of patients who sustain an acute SARS-CoV-2 infection are developing a wide range of persistent symptoms that do not resolve over the course of many months. These patients are being given the diagnosis Long COVID or Post-acute sequelae of COVID-19 (PASC).

It is likely that individual patients with a PASC diagnosis have different underlying biological factors driving their symptoms, none of which are mutually exclusive. This paper details mechanisms by which RNA viruses beyond just SARS-CoV-2 have be connected to long-term health consequences. It also reviews literature on acute COVID-19 and other virus-initiated chronic syndromes such as post-Ebola syndrome or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to discuss different scenarios for PASC symptom development.

Potential contributors to PASC symptoms include consequences from acute SARS-CoV-2 injury to one or multiple organs, persistent reservoirs of SARS-CoV-2 in certain tissues, re-activation of neurotrophic pathogens such as herpesviruses under conditions of COVID-19 immune dysregulation, SARS-CoV-2 interactions with host microbiome/virome communities, clotting/coagulation issues, dysfunctional brainstem/vagus nerve signaling, ongoing activity of primed immune cells, and autoimmunity due to molecular mimicry between pathogen and host proteins. The individualized nature of PASC symptoms suggests that different therapeutic approaches may be required to best manage care for specific patients with the diagnosis.
 

BrightCandle

Senior Member
Messages
1,161
They are but I think some of the studies are also disappointing in their scope. One for the use of TENs like devices for pain management, another sounds like trying to adjust CBT to fit long covid and yet another sounds like exercise managed via activity tracking. Some of them are even assuming they can identify the areas of the brain with dysfunction from symptoms and then see that on an MRI. There is some good stuff in there however like a cytokine assay and a couple of immune system and virology testing research but the bulk of it I don't think is very good research based on what we know. Nothing mitochondria based unfortunately, no development of an assay for energy.

Saying that given the last set of long covid research listed out literally 3 studies on exercise and the rest were CBT and other physchological interventions as well as symptom listing it is progress. There is some real research medicine in these and that does mean the core of the NHS has finally changed for the better and there is a chance now that it starts to treat this condition seriously.
 

Pyrrhus

Senior Member
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Location
U.S., Earth
UK Gov is putting £20million into Long Covid research. 15 studies looking at the cause of it and possible treatments.
They are but I think some of the studies are also disappointing in their scope. One for the use of TENs like devices for pain management, another sounds like trying to adjust CBT to fit long covid and yet another sounds like exercise managed via activity tracking. Some of them are even assuming they can identify the areas of the brain with dysfunction from symptoms and then see that on an MRI. There is some good stuff in there however like a cytokine assay and a couple of immune system and virology testing research but the bulk of it I don't think is very good research based on what we know. Nothing mitochondria based unfortunately, no development of an assay for energy.

Related discussion:

Long Covid funding to unearth new treatments
https://forums.phoenixrising.me/threads/long-covid-funding-to-unearth-new-treatments.84835/
 

hapl808

Senior Member
Messages
2,178
From Morgan Stephens on CNN. About her 'horrific' experience with Long Covid, as if every single person on this forum hasn't experienced that times a hundred, but with no sympathetic nods from anyone around us.

And no, you're not the 'first of your kind'.

The arrogance and narcissism is stunning, as we've struggled with all these symptoms in the shadows for years. I can sympathize with her symptoms…because I've experienced every single one for years, especially since becoming mostly housebound five years ago with no relief. But I can't sympathize with her lack of inclusion for people who have suffered from chronic illnesses with no clear etiology for decades.

"We're the first of our kind. We're bound together in our collective trauma -- the one that's been invisible to others. And our numbers are growing.

Today, I still experience severe vertigo, fatigue, brain fog, exercise intolerance, screen sensitivity, insomnia and migraines."

Invisible to others? I'd like her to actually spend some time talking to the people here who have been housebound or bedbound for years or decades. Then she could learn what 'invisible' means. But nope, she won't even talk to us…because we really are invisible. She's one of the people with a 'real' illness, unlike us complainers.

So f'ing frustrating to see these cries for help when none of them gave (or still give) a shit about us. We're not getting any breathless Opinion pieces on CNN or special clinics at USC to give us support. We don't even get a single mention in her pages long, carefully researched article on CNN. We are erased.


(I've been feeling particularly shitty with daily PEM migraines even with no activity, constant brain fog and neck pain, and all the rest - so I'm probably being more insufferable than usual.)
 
Last edited:

Boba

Senior Member
Messages
332
From Morgan Stephens on CNN. About her 'horrific' experience with Long Covid, as if every single person on this forum hasn't experienced that times a hundred, but with no sympathetic nods from anyone around us.

And no, you're not the 'first of your kind'.

The arrogance and narcissism is stunning, as we've struggled with all these symptoms in the shadows for years. I can sympathize with her symptoms…because I've experienced every single one for years, especially since becoming mostly housebound five years ago with no relief. But I can't sympathize with her lack of inclusion for people who have suffered from chronic illnesses with no clear etiology for decades.

"We're the first of our kind. We're bound together in our collective trauma -- the one that's been invisible to others. And our numbers are growing.

Today, I still experience severe vertigo, fatigue, brain fog, exercise intolerance, screen sensitivity, insomnia and migraines."

Invisible to others? I'd like her to actually spend some time talking to the people here who have been housebound or bedbound for years or decades. Then she could learn what 'invisible' means. But nope, she won't even talk to us…because we really are invisible. She's one of the people with a 'real' illness, unlike us complainers.

So f'ing frustrating to see these cries for help when none of them gave (or still give) a shit about us. We're not getting any breathless Opinion pieces on CNN or special clinics at USC to give us support. We don't even get a single mention in her pages long, carefully researched article on CNN. We are erased.


(I've been feeling particularly shitty with daily PEM migraines even with no activity, constant brain fog and neck pain, and all the rest - so I'm probably being more insufferable than usual.)

I totally get your frustration, but isn’t all attention for long Covid helping you in a way as well? The conditions have likely similar mechanisms. I have CFS from Covid and am getting some support by official places. My hope is that everyone with CFS will benefit from LC research.
 

hapl808

Senior Member
Messages
2,178
I totally get your frustration, but isn’t all attention for long Covid helping you in a way as well? The conditions have likely similar mechanisms. I have CFS from Covid and am getting some support by official places. My hope is that everyone with CFS will benefit from LC research.

It may help us accidentally if the same underlying mechanisms exist. As you said, they likely have similar mechanisms. If they don't, we're totally screwed.

However, she's a rich young pretty white girl with a great job who even already knows her options on SSDI and will likely get it. I didn't and still don't have any idea exactly what is causing my disability, and since I didn't apply right away because I always thought I'd get better from my mystery illness, and I didn't even really know what SSDI or disability options were anyways. I'm screwed. Most of the best earning years of my life are now more than 10 years ago because I've been struggling to make ends meet as my condition declined, so if I get any disability, it'll be a fraction of what I could have gotten if I applied immediately.

And that's just one aspect of having your disability accepted. Her alma mater (a school notorious for being the choice of the wealthy) has a whole clinic dedicated to helping people like her. From CNN to her friends to everyone, she says people don't understand it - but they don't really deny its existence. I mean, she wrote a whole article about a series of symptoms we all have and doesn't mention us - that's true invisibility.

So yeah, it's nice if something might help you accidentally, but it's not the same by any means. All the Long Covid people are stridently out there demanding practitioners take them seriously. How would they feel if they were told their illness wasn't of real importance, but don't worry MS probably has some similarities and they get funding so maybe you'll get lucky.

In a lot of respects, I expect they'll be the subject of a lot of funding and crappy research. There will be GET by another name in at least 5 studies. There will be poorly controlled studies that show great results but don't account for the fact that a lot of people with ME/CFS can get temporary improvement or even remission.

And maybe, hopefully, there will actually be some competent research that figures out real diagnostics and treatment. One of my big concerns, though, is that diagnostics may run into challenges. For instance, if they find all the correct biomarkers that predict Long Covid, but they can't 'differentiate' between people with Long Covid and ME/CFS, will that prove that it's the same illness, or will they add some qualitative disqualifier so we still are excluded?

Yes, I find all this immensely frustrating because people like her are faking nobility and martyrdom. We've all been 'strong' for our illness or whatever fantasies people like projecting on us (when they're not just considering us crazy), but people like her are engaging in chronic illness porn, not activism.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I totally get your frustration, but isn’t all attention for long Covid helping you in a way as well? The conditions have likely similar mechanisms. I have CFS from Covid and am getting some support by official places. My hope is that everyone with CFS will benefit from LC research.

I think the focus on Long Covid will definitely help people with ME in the long run, even if it seems like ME is being ignored in the short run.

Although some people in the Long Covid community try to distance themself from ME, they are slowly coming around to recognizing the similarities and opportunities for collaboration. It will take time, though, for people to come to terms with this and we all must try to be understanding of what others are going through.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
And now some preliminary reports of people developing Long Covid after being vaccinated:

Breakthrough Symptomatic COVID-19 Infections Leading to Long Covid: Report from Long Covid Facebook Group Poll (pre-print from Massey, Berrent, and Krumholtz, 2021)
https://www.medrxiv.org/content/10.1101/2021.07.23.21261030v1
Vaccines have been shown to be extremely effective in preventing COVID-19 hospitalizations and deaths. However, a question remains whether vaccine breakthrough cases can still lead to Post-Acute Sequelae of SARS-CoV-2 (PASC), also known as Long Covid.

To address this question, the Survivor Corps group, a grassroots COVID-19 organization focused on patient support and research, posted a poll to its 169,900 members that asked about breakthrough cases, Long Covid, and hospitalizations. 1,949 people who self-report being fully vaccinated have responded to date. While robust data are needed in a larger, unbiased sample to extrapolate rates to the population, we analyzed the results of this public poll to determine what people were reporting regarding Long Covid after breakthrough infection and to prompt discussion of how breakthrough cases are measured. The poll was posted in the Survivor Corps Facebook group (∼169,900 members).

Of the 1,949 participants who responded to the poll, 44 reported a symptomatic breakthrough case and 24 of those reported that the case led to symptoms of Long Covid. 1 of these 24 cases was reported to have led to hospitalization in addition to Long Covid.


And there's this:
 

hapl808

Senior Member
Messages
2,178
And now some preliminary reports of people developing Long Covid after being vaccinated:

Breakthrough Symptomatic COVID-19 Infections Leading to Long Covid: Report from Long Covid Facebook Group Poll (pre-print from Massey, Berrent, and Krumholtz, 2021)
https://www.medrxiv.org/content/10.1101/2021.07.23.21261030v1

Unfortunately this is a FB group poll with no verification and a small-ish sample.

There was an Israeli study in the NEJM that was much more robust for breakthrough Long Covid.

I also wish they would study the potential for Long Covid or ME/CFS type symptoms from vaccinations themselves, but I doubt that will be studied by a mainstream organization because they have already decided that vaccines do not trigger those conditions (they have no idea what DOES trigger the conditions, but they have arbitrarily ruled out some triggers. Even though for things like Guillain Barre vaccines are potential triggers among many other things).
 

andyguitar

Senior Member
Messages
6,647
Location
South east England
I also wish they would study the potential for Long Covid or ME/CFS type symptoms from vaccinations themselves, but I doubt that will be studied by a mainstream organization because they have already decided that vaccines do not trigger those conditions
I'd be a bit more positive about the possibility that adverse reactions to the covid jab will be investigated. It's a new type of vaccine (in most cases) and nobody can say for certain what the long term effects might be.
 

Rufous McKinney

Senior Member
Messages
13,462
Below is an excellent article from the HIV community- and more specifics about some of the newest research on long haul COVID/ME/CFS.

https://www.thebody.com/article/lon...halomyelitis-chronic-fatigue-syndrome?ap=2008

Its really exciting that COGNITIVE issues are getting more recognition.

Some juicy excerpt from this article:

“Long COVID is a lot to deal with in a pandemic and a political crisis, but it’s here and it’s huge,” said former TheBody editor JD Davids, a longtime HIV activist who is HIV-negative but lives with both ME/CFS and long COVID—and who created The Cranky Queer Guide to Chronic Illness. “We’ve learned lessons from HIV about the stakes of an ongoing national health crisis.”

Davids said that, just as with federal funding for HIV, advocates will have to monitor the use of that $1.15 billion long-COVID fund “to make sure it’s used as strategically and coordinated as can be. We need to understand all the distinctions within long COVID, including people who have measurable organ damage.” With the muddled area of chronic fatigue, pain, and the cognitive problems called “brain fog,” “We’re going to have to dive into neurology and autoimmune conditions,” Davids said. “Is a virus a trigger that is unearthing dormant viruses in the body tied to genetics that increases the risk of certain things happening?”

On all those questions, TheBody reached out to Avindra Nath, M.D., a physician-scientist specializing in the field of neuroimmunology and neurovirology who studies both ME/CFS and long COVID at the National Institutes of Health. Nath, by the way, said he’s seen few instances of long COVID or even regular COVID in the 400 patients with HIV he’s been following for years, largely because he thinks such patients took extraordinary measures to not be exposed to COVID.

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.”
Two lines of therapy might address the syndromes, said Nath. One is future antiviral drugs specific to COVID—existing options, such as former President Trump’s beloved hydroxychloroquine, have not panned out—that would be able to get rid of persistent bits of COVID virus in long-haul patients. The other, he said, “would be an immunotherapy”—something that boosts or triggers the immune response—“that could be broadly applicable to ME and long COVID and block the macrophage immune response—or activate the T cells [other components of the immune system] which did not originally do their job.”
Some of these immunotherapy drugs are already FDA-approved but have not been tested on long COVID yet, said Nath. His own team is writing a protocol now to study such an agent in long COVID, pending approval and funding. Nath said he doesn’t know how many other teams out there are ramping up similar trials. (A quick search of “long COVID” at clinicaltrials.gov yields 34 studies with sites internationally.) But Nath said that the government’s $1.15 billion allocation for long-COVID study “might be a record sum” and certainly competes with former allocations for infectious diseases, including AIDS and Ebola. “Any research people do on long COVID is going to benefit people with ME,” he said, and data on one disease cohort might illuminate data in the other.
 
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