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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Pyrrhus

Senior Member
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4,172
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U.S., Earth
Carmen Scheibenbogen, an ME researcher from Germany, pre-published a study on Long Covid patients roughly 6 months after their infection:

Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany – a first analysis of a prospective observational study (Kedor et al., 2021)
https://www.medrxiv.org/content/10.1101/2021.02.06.21249256v1 (not yet peer-reviewed)

Main points:
  • They looked at 42 patients with moderate to severe fatigue six months following a mostly mild infection.
  • 29 patients were female and 13 male.
  • Although 41 out of 42 patients had PEM, only 19 of them fulfilled the 2003 Canadian Consensus Criteria for ME.

New discussion:
https://forums.phoenixrising.me/thr...rmany-scheinbogen-et-al-2021-pre-print.83404/
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I haven't been able to keep up with all the articles on Long Covid, but this article stood out to me:

COVID long-haulers are killing themselves as symptoms become too painful to bear — but support groups offer relief
Insider, 15 April 2021
https://www.insider.com/long-term-covid-sufferers-are-killing-themselves-heres-why-2021-4

Excerpt:
Months-long suffering from "long-haul" COVID-19 symptoms has been linked to severe depression and anxiety and even suicidal ideation.

Texas Roadhouse CEO Kent Taylor's death by suicide last month highlighted the coronavirus' severe toll on mental health.

A statement released by Taylor's family linked his death to lingering symptoms he was experiencing including severe tinnitus, or ringing in ears.

"Kent battled and fought hard like the former track champion that he was, but the suffering that greatly intensified in recent days became unbearable," the statement said.

Taylor was among many who have struggled to cope with the debilitating long-term effects of COVID-19, which in addition to tinnitus include fatigue as well as constant "brain fog" and memory loss.

These symptoms — and how people can manage them in the long term — are still being studied, as the number of known COVID-19 cases in the US alone passes 30 million.
 

Rufous McKinney

Senior Member
Messages
13,467
which in addition to tinnitus


Mine is getting worse. Its hooked into the brain, so it is not JUST ears ringing but in my case, BRAIN is crunching, uncomfortable, wants to shake something out of my head. Its not just your ears, I'm saying.
 

Rufous McKinney

Senior Member
Messages
13,467
I haven't been able to keep up with all the articles on Long Covid, but this article stood out to me:

stumbled into this interview....its a mixed bag.

https://www.sciencemag.org/news/2021/04/how-scientists-are-teasing-apart-biology-long-covid

Emilia Liana Falcone, an infectious disease specialist at the Montreal Clinical Research Institute, and Michael Sneller, an infectious disease specialist at the National Institute of Allergy and Infectious Diseases (NIAID), are each leading a large Long COVID clinical trial.

At least someone seemed to grasp that if long haul COVID victims are dealing with a major lack of energy, they should be conserving energy (not initiating marathon training).

But alot of this interview seems to really trivialize long haul. so generally I don't really want to move to Canada.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
The U.S. Long Covid organization Body Politic has put out a public letter addressed to the NIH:

Body Politic said:
April 22, 2021
We write to you on behalf of Body Politic – a grassroots health justice organization at the forefront of the patient-led movement for Long COVID – with regards to the NIH’s funding for research into Long COVID. We were thrilled to learn of the NIH’s plan to investigate Long COVID and other post-acute-Covid-19 sequelae via funded research. As leaders of one of the largest patient-led support groups for people living with Covid-19 – and “first-wavers” ourselves – we know how devastating it has been for Long COVID patients to suffer in isolation without hope of answers or care. The NIH’s announcement this winter provided that glimmer of hope for our community.

We are writing today to urge the NIH to prioritize funding projects that build on prior ME/CFS and related chronic illness research in their investigation of Long COVID. Long COVID patients share both symptoms and experiences with these patient populations, and we, as Long COVID patients and activists, have learned much from people with ME/CFS and related illnesses. It is also crucial to prioritize investigations that consider links between these conditions, as we are seeing Long COVID patients being diagnosed with ME/CFS, dysautonomia, and Mast Cell Activation Syndrome.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
A new paper in Nature that is really making some waves:

Scientists set out to connect the dots on long COVID (Marx, 2021)
https://www.nature.com/articles/s41592-021-01145-z

Excerpt:
Nature Methods said:
With grit, urgency and creativity, scientists address the puzzle of long-haul COVID.
[...]
Data are still emerging, says Karolinska Institute researcher Petter Brodin, but to a first approximation it appears that 70–80% of people experiencing severe acute reactions to COVID-19 are men, whereas women comprise 70–80% of those suffering from long COVID.
[...]
For example, autoantibodies could play a part, with the immune system attacking the body as it does in rheumatoid arthritis3. Perhaps viral reservoirs or lingering fragments of viral RNA or proteins contribute to the condition.
[...]
Even months after an infection, mRNA from SARS-CoV-2, as well as viral protein, have been detected in the intestines of infected individuals.
[...]
Four months after onset of COVID-19, immunofluorescence and PCR analysis of intestinal biopsies showed persistence of viral RNA and protein.
[...]
Susan Weiss at the University of Pennsylvania has long studied coronaviruses, and she wants to learn more about the persistence of SARS-CoV-2 and viral RNA. RNA does not integrate into the host genome, she says, but when a mouse is infected with murine coronavirus, viral RNA can persist in its central nervous system (CNS) without infectious virus being present. The virus infects the liver and the CNS, but persists just in the CNS. This has puzzled the field “for decades,” she says. The RNA can remain for the mouse’s whole lifetime, and “this is associated with demyelinating disease,” says Weiss. There is “no evidence at all for this in humans so I don’t really want to make an analogy—just an interesting fact.” Brodin believes that intense study of viral reservoirs, viral persistence and related aspects should be a focus in long COVID and beyond, for example for diseases such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
[...]
“The virus may be gone, but the music lingers on,” says [Avi] Nath. “What is lingering: is it the immune system that is lingering or is it parts of the virus that are lingering?” He has encountered many people with symptoms after a viral infection that were assumed to be immune-mediated conditions. He recalls one person who was part of the NIH Undiagnosed Diseases Program and was experiencing dementia-like symptoms5. The team performed whole-exome sequencing, immunoprofiling; they studied immune cells in his blood. With a phage-display method, they looked in his cerebrospinal fluid and blood for immune cells that target dengue virus and checked for autoantibodies; they assessed metabolites and tested for infectious diseases; they gave him drugs used in multiple sclerosis. The assays were inconclusive, the symptoms didn’t cease and the man passed away. The autopsy revealed that in the man’s brain, “there was dengue virus all over the place,” says Nath. Using immunohistochemistry, in situ hybridization, quantitative PCR and sequencing, the scientists found the virus had persisted in his central nervous system and brain, and it appeared this had led to panencephalitis and progressive dementia.
[...]
Months, even years, after recovering from measles, some children develop a deadly condition called subacute sclerosing panencephalitis (SSPE). Hunting for virus in the sick child’s body yields no findings. At autopsy, “you look at the brain, it’s loaded with the virus,” says Nath. What has taken place is that measles virus remains in the brain and it has mutated to the point at which it no longer forms a complete viral particle. It replicates only in a restricted form: it will form some RNA, some proteins and “it even has the ability to go from cell to cell,” he says. The changes allow the restricted virus in one neuron to fuse itself, along with its RNA and protein, with the cell membrane of a neighboring neuron. It keeps moving, infecting a succession of neurons.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
A widely-praised editorial by Canadian doctors and patients with ME and/or Long Covid:

Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
https://www.jospt.org/doi/full/10.2519/jospt.2021.0106#a6
by Simon Décary, PT, PhD, Isabelle Gaboury, PhD, Sabrina Poirier, Christiane Garcia, Scott Simpson, BA, CWC, Michelle Bull, PhD, Darren Brown, MSc, MRes, Frédérique Daigle, MSc

Décary et al 2021 said:
The term long COVID was coined by patients to describe the long-term consequences of COVID-19. One year into the pandemic, it was clear that all patients—those hospitalized with COVID-19 and those who lived with the disease in the community—were at risk of developing debilitating sequelae that would impact their quality of life.

Patients with long COVID asked for rehabilitation. Many of them, including previously healthy and fit clinicians, tried to fight postviral fatigue with exercise-based rehabilitation. We observed a growing number of patients with long COVID who experienced adverse effects from exercise therapy and symptoms strikingly similar to those of myalgic encephalomyelitis (ME).

Community-based physical therapists, including those in private practice, unaware of safety issues, are preparing to help an influx of patients with long COVID. In this editorial, we expose growing concerns about long COVID and ME. We issue safety recommendations for rehabilitation and share resources to improve care for those with postviral illnesses.
(spacing added for readability)
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
And here's a study from Mexico that looked at how many patients who were hospitalized with acute Covid ended up meeting the criteria for SEID after 6 months. (Not including the 65 patients who died.)

Post-Acute COVID-19 Symptoms, a Potential Link with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A 6-Month Survey in a Mexican Cohort (Gonzalez et al., 2021)
https://www.mdpi.com/2076-3425/11/6/760

Excerpt:
Gonzalez et al 2021 said:
The aim of this study was to describe the clinical evolution during 6 months of follow-up of adults recovered from COVID-19. We tried to determine how many met the definition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

A total of 130 patients (51.0 ± 14 years, 34.6% female) were enrolled. Symptoms were common, participants reported a median number of 9 (IQR 5–14) symptoms. Fatigue was the most common symptom (61/130; 46.9%). Patients with fatigue were older 53.9 ± 13.5 years compared with 48.5 ± 13.3 years in those without fatigue (p = 0.02) and had a longer length of hospital stay, 17 ± 14 days vs. 13 ± 10 days (p = 0.04). There was no difference in other comorbidities between patients with fatigue and those without it, and no association between COVID-19 severity and fatigue.

After multivariate adjustment of all baseline clinical features, only age 40 to 50 years old was positively associated with fatigue, OR 2.5 (95% CI 1.05–6.05) p = 0.03. In our survey, only 17 (13%) patients met the Institute of Medicine’s criteria for “systemic exertion intolerance disease,” the new name of ME/CFS. In conclusion, in some patients, the features of post-acute COVID-19 syndrome overlap with the clinical features of ME/CFS.
 

BrightCandle

Senior Member
Messages
1,162
....only 17 (13%) patients met the Institute of Medicine’s criteria for “systemic exertion intolerance disease,” the new name of ME/CFS. In conclusion, in some patients, the features of post-acute COVID-19 syndrome overlap with the clinical features of ME/CFS.

13%, pretty close to the long term 10% the newspapers keep pulling out. Looking like unfortunately it is producing a similar percentage as SARS, I figured given its initial onset was less severe that it would be less than SARS (which is 10% long term according to the chinese papers on it) but alas it is coming out similar or even a little worse.
 

lenora

Senior Member
Messages
4,978
And here's a study from Mexico that looked at how many patients who were hospitalized with acute Covid ended up meeting the criteria for SEID after 6 months. (Not including the 65 patients who died.)

Post-Acute COVID-19 Symptoms, a Potential Link with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A 6-Month Survey in a Mexican Cohort (Gonzalez et al., 2021)
https://www.mdpi.com/2076-3425/11/6/760

Excerpt:


You go to a lot of trouble to get info to us, Pyrrhus. A special thank-you. Yours, Lenora.
 

roller

wiggle jiggle
Messages
775
have cataract patients a higher risk to develop LONG COVID/MECFS ?

german scientest have some "research"-medication which binds those autoantibodies that restrict the blood flow... and eventually may "cure" mecfs/covid?
"preparation containing the active ingredient BC 007"

some quotes:
..."succeeded in curing a patient of his Long Covid symptoms"

In the blood of former Covid 19 patients ...months after the infection, certain proteins.
...significantly restricted blood flow to their eyes

Blood tests found that patients after a corona infection have several of these autoantibodies that are already known in connection with cataracts.

Even months after the disease, the blood flow within the retina is clearly restricted, even if those affected have no visual problems.

https://translate.google.com/transl...-corona-spaetfolgen-entdeckt_id_13461226.html

in German:
https://www.focus.de/regional/bayer...-corona-spaetfolgen-entdeckt_id_13461226.html
 

roller

wiggle jiggle
Messages
775
not sure, if this is the right place for personal opinion...

but how stupid imo, that they talk about "long covid" symptoms.
as if this was just another of their "static" diseases...

wait a couple of years, and see what troubles come out of these "initial symptoms"...

current "long covid" symptoms are just the beginning...
 

Rufous McKinney

Senior Member
Messages
13,467
Somebody online told me: NIACIN cures long haul COVID and ME CFS...........

"it does?" I wondered.

So here we have some online discussion about the value of taking NIACIN..........

this seems tied to an MCAS discussion.

 
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