NT: 'Are Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Part of the Same Disorder? A New NIH Initiative Aims to Find Out"

[Dakota15]

Mods, feel free to move to most appropriate.

4/18, Neurology Today: 'Are Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Part of the Same Disorder? A New NIH Initiative Aims to Find Out’

Some excerpts:

'A study of 17 patients with myalgic encephalomyelitis/chronic fatigue syndrome revealed that there is an absolute biological basis for the condition. Researchers say that exposure to an infection leads to concomitant and persistent immune dysfunction and changes in gut microbiome, which results in decreased concentrations of metabolites that then impact brain function.’

'“We believe these are virtually the same disease, although there are some differences, and they should be managed and studied in multidisciplinary clinics focused on post-infectious syndromes,” said lead author Avindra Nath, MD...

''We hypothesize that these changes are driven by antigen persistence of the infectious pathogen.”

"Hector Bonilla, MD, clinical associate professor of medicine at Stanford University and co-director of Stanford's ME/CFS and Post-Acute COVID-19 Syndrome Clinic, called the study “extremely important.”

"'Dr. Nath's group has begun recruiting study participants for a clinical trial of intravenous IG (IVIG) in long COVID. “In order to bring treatments to people with ME/CFS quickly, we need to do trials in long COVID, because there are so many of them, they are closer to the infectious process, and we know exactly what the infectious process was,” he said.”

 

[Wishful]

Does the viral infection cause immune dysfunction, or does neurological dysfunction cause persistent immune dysfunction? There obviously needs to be more research, but I dislike his assumption that a persistent viral infection is the cause. That isn't proven yet, and there are other possibilities for the root cause of ME and post-viral disorders.

 

[cfs since 1998]

Does the viral infection cause immune dysfunction, or does neurological dysfunction cause persistent immune dysfunction? There obviously needs to be more research, but I dislike his assumption that a persistent viral infection is the cause. That isn't proven yet, and there are other possibilities for the root cause of ME and post-viral disorders.

Immune cells aren't centrally controlled. In most neurological disease, immune dysfunction causes neurological dysfunction. I'm not aware of any that are the other way around.

 

[Dakota15]

Connecticut Public Radio: ''We need a moonshot for long COVID': What we know (and don't know) about the illness'

Ft. Akiko Iwasaki & Lisa McCorkell:

Some notes from this segment:

(26 minutes) "Recently I want to hear a thought that, NIH Director Monica Bertagnolli recently stated that active COVID virus can be found in bodies months post-infection, and some research hypothesizes viral persistence as a driver for Long COVID, as well as other post-viral illnesses like Myalgic encephalomyelitis or chronic fatigue syndrome. Can you talk about the significance of what Monica mentioned, from your perspective?"

Iwasaki: “There are roughly 4 possible hypotheses that can describe Long COVID…it is a heterogenous disease….viral reservoir or replicating virus that persists is one of the 4 hypotheses. There is numerous evidence for this…Dr. Amy Proal has published a very nice review demonstrating how many of these tissues are involved in harboring these kind or remnants of viral RNA..'

"The three other hypotheses include autoimmunity….tissue damage and dysfunction…we see evidence of reactive microglial in the brain..that could lead to neurocognitive impact…we see evidence of latent herpes reactivation…these 4 possible root causes could be driving Long COVID”

“There is not enough funding to do proper large-scale studies on Long COVID…we still need sufficient funding to do large studies such as randomized clinical trials to better understand what drugs can be helpful for people with Long COVID.."

(Part 1)

 

[Dakota15]

Part 2)

(33 minutes) “Earlier, Lisa spoke about the neglected illnesses that are a part of Long COVID."

Iwasaki: “Lisa is absolutely right about this. There is very little knowledge base that is taught in medical school to doctors to inform them about these post-infectious syndromes, which is known to occur after an encounter with many distinct pathogens…COVID-19 is the latest to join this list..that link to many very similar outcomes…Medical education on these is a much-needed effort."

“There will be a large trial happening from Dr. Wes Ely’s group, an anti-inflammatory called barticinib, will be tested on people in Long COVID. There are a lot important biological drugs that can be used to target these root cause disease drivers, it would be a waste to not investigate these in a rigorous scientific manner."

“There are some experimental drugs that are being tried in animal models that are showing some promise…to really target the core problems that’s happening within the central nervous system.”

“I don’t want to promise anything, but I just want patients to know that so many of us are working so hard to try to understand the disease process and to try to come up with better diagnosis and treatment…I think we can come to a better understanding of how we can diagnose and treat Long COVID, ME/CFS, and post-Lyme disease syndromes and many other post-acute infection syndromes."

 

[Wishful]

Immune cells aren't centrally controlled. In most neurological disease, immune dysfunction causes neurological dysfunction. I'm not aware of any that are the other way around.

Search "neurodsyfunction alters immune" and you'll find plenty of papers about the connection being bidirectional, with the brain altering immune response, and that's only the known mechanisms, while there may be others still to be discovered.

 

[cfs since 1998]

Search "neurodsyfunction alters immune" and you'll find plenty of papers about the connection being bidirectional, with the brain altering immune response, and that's only the known mechanisms, while there may be others still to be discovered.

Your suggested search yields four papers:

"The role of the innate immune system in psychiatric disorder" (Jones 2012). A passage from this paper's abstract states, "Proinflammatory cytokines, such as IL-1β IL-6 and TNFα, which feature prominently in the immune response to pathogen in the periphery, have unique and specific actions on neurons and circuits within the central nervous system."

"Adverse neuro-immune-endocrine interactions in patients with active tuberculosis" (Bottasso 2013). I don't think neurological disease causes TB.

"Peripheral and central inflammation in autism spectrum disorders" (Depino 2012). A passage from this paper's abstract states, "most proposed perinatal factors seem to converge into the activation of the immune system, suggesting that an early inflammatory response could be a unifying factor in the etiology ASD."

"Neuropoietic cytokines in normal brain development and neurodevelopmental disorders" (Stolp 2013). A passage from the abstract states, "Inflammation has been implicated in a wide variety of neurological disorders and there is increasing evidence for long-term consequences of inflammation during early brain development."

I don't see anything that supports your argument.

 

[Rufous McKinney]

I want to hear a thought that, NIH Director Monica Bertagnolli recently stated that active COVID virus can be found in bodies months post-infection, and some research hypothesizes viral persistence as a driver for Long COVID, as well as other post-viral illnesses like Myalgic encephalomyelitis or chronic fatigue syndrome.

how encouraging!

I"m grateful we register as a Thing with the new NIH director.

 

[Wishful]

Check out:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5866360/

https://www.sciencedirect.com/science/article/pii/S1074761317302364 (click on the "view pdf" link)

https://pubmed.ncbi.nlm.nih.gov/32811994/ (not sure how to access the full version)

https://www.nature.com/articles/s41590-024-01790-4 (I haven't read this one either)

The papers I've skimmed through indicate that the mechanisms for the brain to affect the immune system are not well understood yet, but do exist and are being studied, and in some cases, even providing experimental treatments for immune disorders (bioelectric signals applied to vagus nerve).

 

[Dakota15]

Just sharing,

4/19: InvestigateTV+ Season 1; Episode 115: “..we go in-depth to see what is being done to help doctors understand long covid”

Features interviews with Walter Koroshetz (of NIH), Michael Sieverts, Cynthia Adinig, Ziyad Al-Aly. About a 9-minute segment.

Some notes:

Dr. Walter Koroshetz: “It’s probably one the biggest medical mysteries that I know of.”

Host: “The NIH has faced criticism from some patients..Michael among those who feel the agency needs to pick up the pace.”

“How do you respond to that criticism” Koroshetz: “I agree with them. I really do. I really wish we were moving faster..”

“What is the solution then?” Al-Aly: “three things: scale, to match the problem. Urgency, because people really need treatment yesterday. And coordinating agent, because no matter how hard we work, if you don’t have a captain of your team or if you don’t have a quarterback, your chances of winning that game are probably not very good.”

Michael Sieverts: “My biggest frustration is just how limiting it is. Your life has to be so constrained in order to just manage the day.”

 

[Carl]

I look at it a different way. It's what causes the risk for COVID-19 that is the problem and that shares the same aetiology as ME and it's NOT viral related. In the case of long COVID a virus does trigger it but it is the underlying condition which makes that possible and that is NOT viral it's actually a pathogenic micro-organism which is usually bacterial but can be yeast/fungal or protozoal and biofilm producing. This is what actually causes the change in digestive permeability and adverse reaction and inflammation to food. There is also tissue destruction in two very important areas, one of which there is evidence on this forum but not recognised by researchers both of which explains most of the symptoms besides the inflammation > tiredness. BTW If I had not been bitten by a tick causing considerably more unremitting exhaustion than ME has ever done as I have methods to control that but Lyme disease has shifted my immune system to Th1 and totally fouled everything up.

I was attempting to find a method to destroy a highly resistant pathogenic infection which is maintaining my ME and preventing my body healing. This is why I keep telling people on PR NOT to take antibiotics, at least to limit the number to a limited number of specific ones so that the pathogens maintaining your ME do not become resistant to all antibiotics. I have a lot of experience of this myself. Turkey tail mushroom had the strongest ever effect against the pathogen than anything the first time I took it in a free tea but after that NOTHING. I did not treat the biofilm to remove it which allowed them to adapt which they did rendering them invulnerable to it. EPI's could change that but not to the same strength as the first exposure.

I am attempted to destroy what I believe could be a Bartonella infection before it kills me by calcifying my circulatory system and killing me with heart disease. The men in my family all died at an early age from circulatory disease. My BP has risen 50% to the normal range while taking a beta blocking herb. Destroying the pathogen(s) and healing my hypothalamus will most likely cause a dramatic BP rise. Cancer is also a risk with Bartonella.

 

[Dakota15]

NYT: 'The N.I.H.’s Words Matter, Especially to Long Covid Patients' by Zeynep Tufekci

Excerpts:

'I reached out to the N.I.H. The answer turns out to be mundane. Dr. Bertagnolli said she “misspoke” and had “meant to say ‘viral components’ rather than ‘live virus.’

'The N.I.H. also confirmed to me such remnants have not yet been shown to correlate with long Covid symptoms.’

'Viral remnants may still play a role — maybe only some people are sensitive to them — or maybe leftover viral components are common and harmless. The N.I.H. also told me this is “an area of active investigation,” as it should be.’

'It’s good that Dr. Bertagnolli is so engaged with long Covid, and misspeaking during an interview is human. Hopefully, the institution keeps in mind that suffering patients are hanging on their every word.'

 

[Rufous McKinney]

that is NOT viral it's actually a pathogenic micro-organism which is usually bacterial but can be yeast/fungal or protozoal and biofilm producing.

There is a discussion thread here regarding Dr. Markov's theory of a persistent infection of the kidneys. You might want to look at that info.

I've lost track of whether his treatment is helping folks. He' s in Ukraine. @Hip has been involved in looking at this.

This is why I keep telling people on PR NOT to take antibiotics,

for what its worth, I've hardly ever taken antibiotics. Plus I spent too much money in the health food stores to have consumed much antibiotics in foods.

However I've had issues since I was one and may have had too much exposure as a child. Unfortunately I have no way to ask my mother about this any longer.

 

[Dakota15]

If any are interested in viewing, I had also e-mailed NIH RECOVER after Monica’s public interview with MedPage Today, asking if the NIH Director was referencing new data we were not privy to. Here is that response today.

"Thanks you for reaching out. Dr. Bertagnolli indicated she misspoke and meant to say viral components rather than live virus. SARS CoV-2 viral components (such as RNA and viral antigens) can be found in a subset of patients many weeks to months after acute COVID. These viral components may indicate the potential presence of persistent virus (or “viral reservoirs”). The viral components may be a stimulus for ongoing immune dysfunction and are hypothesized to be a potential cause for some of the symptoms seen in Long COVID patients. However, the presence of these viral components has not yet been shown to definitively correlate with Long COVID symptoms. These are important areas of active investigation.

Some studies that may be helpful are listed below:

https://pubmed.ncbi.nlm.nih.gov/37452829/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10159620/

https://www.nature.com/articles/s41590-023-01601-2

Sincerely,

RECOVER Initiative Inquiries Team”

 

[Carl]

There is a discussion thread here regarding Dr. Markov's theory of a persistent infection of the kidneys. You might want to look at that info.

I've lost track of whether his treatment is helping folks. He' s in Ukraine. @Hip has been involved in looking at this.

I have seen that thread and I disagree with what it proposes. The bloodstream isn't sterile, there are bacteria in the bloodstream and the kidneys are highly likely to become infected by bacteria even in none ME/Fibro sufferers. That is because of changes which occur to the nervous system serving the kidneys due to the adaption to stress. This is extremely common in the wider population especially with advancing age. The nervous system controls the immune system in all areas of the body and when the nervous system degrades as it can in different areas, the kidneys being a prime site and arms/legs and other places such as thyroid gland or even the Liver. This affects the immune system control in the area which can mean the immune system is unable to destroy pathogens or cancer cells. This is probably what the Dr has found as detailed in that thread. It is not however the cause of ME. A very high percentage of ME sufferers have the changes in the nervous system in the kidneys which make this possible and when those changes progress the adrenal glands can reduce function and eventually stop working. Emotional stress is the primary cause and being afraid of expressing emotions as taught by parents. Anxiety/Depressives have this and it can also lead to kidney disease when the pathogens that I speak of promote high amounts of uncontrolled inflammation. BTW Glutathione is essential to protect the kidneys because the kidneys have the second highest requirement behind the Liver for Glutathione.

Around 1996/1997 I did manage to repair a small portion of the nervous system in my left kidney which produced a fairly significant improvement in my mood. I am about to try the same thing again to take advantage of the very high digestive permeability before I destroy 4 very large biofilms so that large amounts of the herb enters my bloodstream. I have tried commercial varieties, even products which claim to have the highest amounts of the active ingredients but only one that I purchased around 96/97 gave the result that I wanted. That is no longer available so I now wont waste time with any further commercial herbs and I have a few plants which I intend using when I can successfully sharpen my parring knife which is proving very difficult TBH.

for what its worth, I've hardly ever taken antibiotics. Plus I spent too much money in the health food stores to have consumed much antibiotics in foods.

However I've had issues since I was one and may have had too much exposure as a child. Unfortunately I have no way to ask my mother about this any longer.

Your medical records should provide a list of previously used antibiotics therefore you don't really need information from your mother because it should all be available to you in your medical records. I am just recommending not to use up all available antibiotics for when they are needed to eliminate ME/Fibro. For general infections insisting on using only previously prescribed antibiotics is a very wise move IMO. BTW Efflux Pump Inhibitors of which there are many in common foods can help reactivate antibiotics and also help to eliminate biofilms via their Quorum Sensing Inhibiting effects. QS is micro-organisms communication inside a biofilm.

 

[Dakota15]

WBUR, 4/18/24: 'Bernie Sanders proposes new program aimed at researching long COVID therapies'

'We hear more about the pitch and the scale of long COVID from STAT's chronic disease reporter Isabella Cueto.’

Excerpts/transcribed:

From Isabella: '...it's been what many have called a mass disabling event. For the first time, we have the scientific knowledge and tools to see in real time what happens when millions of people are infected by a new virus, how does the immune system respond. It's made all these patients who have been sick for a long time, with conditions like ME/CFS, which is Myalgic Encephalomyelitis slash Chronic Fatigue Syndrome, which causes similar symptoms to Long COVID say hey, this could be our moment. There are a lot of overlaps in conditions other than Long COVID.

And so, patients are saying there's a whole new group of people who have these symptoms after infection, it's a good time to understand why that happens and how to treat it. There's no approved Long COVID treatments, just like there's no approved treatments for a lot of these other diseases. I think it's also an attitude shift and a recognition that there are a lot people that have had their lives totally changed by these diseases that are under recognized and underfunded.”

"People have what's called post-exertional malaise...after taking a shower or cooking a meal, they need to rest for hours, just to recoup that energy...it's a very severe degree of fatigue that we are talking about...it's millions of people that are dealing with this.."