Long Covid isn’t as unique as we thought

[Alvin2]

Long Covid isn’t as unique as we thought

The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine.

Featuring our own @JaimeS

For the Covid-19 “long-haulers,” symptoms can persist for weeks or even months, long after being discharged from the hospital or testing positive for the virus, if they even saw a doctor or got diagnosed at all.

Myalgic encephalomyelitis/chronic fatigue syndrome is one of those persistently under-recognized, underfunded, chronic conditions. ME/CFS, as it’s known, afflicts up to 2.5 million Americans every year, mostly women, with persistent symptoms ranging from fatigue and dizziness to sore throat and muscle pain. Recently, ME/CFS patients and their doctors have been pointing to the overlap with long Covid, conditions that US health official Anthony Fauci has called “very strikingly similar.”

Diagnoses of ME/CFS are made on the basis of symptoms, and some long-Covid patients meet the diagnostic criteria for the syndrome. Post-exertional malaise, for example, is considered “the cardinal symptom” of ME/CFS, Jaime Seltzer, director of scientific and medical outreach at the ME/CFS advocacy group ME Action. It’s also something nearly 75 percent of long-Covid patients reported in the recent long-hauler preprint. In another recent paper, researchers called on physicians to familiarize themselves with ME/CFS as the pandemic could “at least double” the number of cases.

https://www.vox.com/22298751/long-term-side-effects-covid-19-hauler-symptoms

 

[bensmith]

I wonder why some people get essentially short term cfs and others dont. Haunts me a bit. Most in my long covid group are recovering. I keep
Wondering what i could
Of done differently, but i think its mostly luck.

 

[Tammy]

All the more reason to point a finger at viruses and what they are capable of doing. We need more research going into virology.............and study how viruses are connected to chronic illness.

 

[livinglighter]

I wonder why some people get essentially short term cfs and others dont. Haunts me a bit. Most in my long covid group are recovering. I keep
Wondering what i could
Of done differently, but i think its mostly luck.

I doubt there was anything you could have done differently. ME/CFS and I now presume Long covid susceptibility depends on many factors such as; genetics, immune disposition, environmental, psychological (e.g. those who tend to push harder).

 

[livinglighter]

A lot of research into Long Covid is detailing the same symptoms of ME/CFS over and over again.

 

[Judee]

I wonder why some people get essentially short term cfs and others dont. Haunts me a bit. Most in my long covid group are recovering. I keep
Wondering what i could
Of done differently,

I think some of it has to do with genetics but also previous exposure to other bacteria, viruses, etc. Everything is cumulative one doctor used to tell me.

 

[bensmith]

@Judee yes i do think you are right.

A lot of research into Long Covid is detailing the same symptoms of ME/CFS over and over again.

I find this very frustrating. I dont know if i am compleyely off here, or if this is just how research is. But it feels every article i read or response to long covid at these clinics is just jotting down symptoms. I dont know if this is normal
But i find it maddenly frustrating. Maybe that is progress but my gosh, no other studies? Like lab work or something i dont know. And again if i’m wrong somebody correct me. But i dont see much it feels like from a lay person. Maybe because my sense of time has become damaged being in crisis 24/7. And it seemed the vax just appeared out of thin air, when before many said it was impaosible.

And thanks for saying so, i try and remind myself its all luck really. It helps sometimes.

 

[CFIDS]

See my thoughts on this here: https://takingcare.freeforums.net/thread/24/real-cause-long-haul-covid

There are other supplements that combined I think turned my issues around in a big way, but monolaurin was the game changer for me for CFS. When I saw the "long haul" thing for covid, I immediately figured it was reactivated EBV or other herpetic viruses.

 

[Pyrrhus]

I wonder why some people get essentially short term cfs and others dont.

That is the major unanswered question about Post-Viral Fatigue Syndrome (PVFS). PVFS is when people develop the symptoms of ME after an infection, but the ME seems to go away after a year or so. Is PVFS just "short-term ME", or does it represent something different? Unfortunately, there is little research that can shed light on this important question.

it feels every article i read or response to long covid at these clinics is just jotting down symptoms. I dont know if this is normal
But i find it maddenly frustrating. Maybe that is progress but my gosh, no other studies?

Defining symptoms and developing diagnostic criteria is the first step. Studies take years to complete, usually at least 2-3 years to find funding, to hiring of laboratory personnel, to performing experiments, to analyzing the data, to finding a journal to review the findings, and finally to publication. But yes, it's maddeningly frustrating for both patients and scientists.

 

[bensmith]

I see, thanks. Well i guess i’m going to double down on ron hoping is work bears fruit this year then

 

[Gingergrrl]

Interesting article @Alvin2! I quoted another part of the article below and I suspect this is what is happening to at least some proportion of the COVID long haulers. It is definitely what my doctors believe happened to me (from other viral triggers, not COVID).

Another key hypothesis: Long-Covid patients have developed an autoimmune disorder. The virus interrupts normal immune function, causing it to misfire, so that the molecules that normally target foreign invaders — like viruses — turn on the body itself. These “rogue antibodies,” known as autoantibodies, “attack either elements of the body’s immune defences or specific proteins in organs such as the heart,” according to Nature.

 

[bensmith]

@Gingergrrl thanks for sharing, i have proof but this feels like it might be me. I got ana test recently from a nuero, would that show it?

 

[Gingergrrl]

@Gingergrrl thanks for sharing, i have proof but this feels like it might be me. I got ana test recently from a nuero, would that show it?

I definitely do not have proof vs. it is just a very plausible hypothesis to me (autoimmunity). I should clarify, that I do have proof re: my own personal medical situation but re: Long COVID, it is just a hypothesis.

Was your ANA test positive? The lab result would usually show as a titer and pattern (mine currently is positive at 1:160, speckled pattern). The ANA is a very broad test of autoimmunity and does not show a specific illness and is not linked in any way specifically to COVID. I hope that helps?!

 

[bensmith]

Ok thanks @Gingergrrl yes i know sorry my words are not great today. Things rings for me though too. Im waiting for my results.

 

[Alvin2]

A lot of research into Long Covid is detailing the same symptoms of ME/CFS over and over again.

ME occurs in most people spontaneously but there have been clusters of infections leading to ME/CFS so it is a very good question if long covid is just another mass ME/CFS event (but this time at a global scale).

That said there is one thing i have never forgotten, Ron Davis had said they have not looked at RNA becasue its so messy (exact words?). That is a glaring oversight IMO. Also he probably doesn't have the money to do it but if he did he would probably need some more scientists to move into ME/CFS-RNA research.

Also i have wondered if ME/CFS is part of a body process we just have not discovered yet. Frankly all the ME/CFS data we do have is abstract and circumstantial, every other major disease has a proposed mechanism (from Cancer to Parkinson to Narcolepsy to Alzheimers). In the case of Narcolepsy they tried to argue it was a bit of this, a bit of that and of course is was psychosomatic, but in the end it took the discovery of a new wakefulness chemical that was previously unknown to science to actually pin down its etiology. The same may be true in ME/CFS and all the current research being done by OMF and others is just looking downstream or are pigeonholing hypotheses.

Its also possible that the money being put into long covid will help us becasue long covid and ME/CFS are the same thing or there are enough similarities that when something is discovered someone will have a light bulb moment and that will lead to a better ME/CFS theory.

 

[bensmith]

@Alvin2 good points thanks.

 

[gbells]

NIH funding
Long Civid $1.15 billion
Myalgic Encephalomyelitis $15 million

Huh?

 

[Pyrrhus]

That said there is one thing i have never forgotten, Ron Davis had said they have not looked at RNA becasue its so messy (exact words?). That is a glaring oversight IMO. Also he probably doesn't have the money to do it but if he did he would probably need some more scientists to move into ME/CFS-RNA research.

Unfortunately, there are very few people to choose from who have the hard-won expertise of working with RNA viruses in the lab. As my virology professor once put it:

"Working with RNA is like playing Jenga. If you so much as sneeze, your experiment is ruined!"

Fortunately, the people at PolyBio know this all too well:

https://twitter.com/i/web/status/1345856347200507908

 

[Alvin2]

Unfortunately, there are very few people to choose from who have the hard-won expertise of working with RNA viruses in the lab. As my virology professor once put it:

"Working with RNA is like playing Jenga. If you so much as sneeze, your experiment is ruined!"

Fortunately, the people at PolyBio know this all too well:

https://twitter.com/i/web/status/1345856347200507908

Based on Dr Davis' comment i am not surprised but we cannot let ourselves be slaves to the streetlight effect, looking where its convenient and not looking where its inconvenient because that inconvenience may be where the answer lies and we may be screwing ourselves by avoiding it.
That said i'm sure it needs more funding.

 

[Wishful]

Ron Davis had said they have not looked at RNA becasue its so messy

Pyrrhus started this thread ( https://forums.phoenixrising.me/thr...-profiling-in-me-cfs-cheema-et-al-2020.83184/ ) which is some interesting research into miRNA expression in ME/CFS. Maybe that will spur more research into that area.

Based on Dr Davis' comment i am not surprised but we cannot let ourselves be slaves to the streetlight effect, looking where its convenient and not looking where its inconvenient because that inconvenience may be where the answer lies and we may be screwing ourselves by avoiding it.

Yes, I'm convinced that the core dysfunction is in the brain, which, of course, is more expensive/inconvenient to study.

On a side-but-related note, I recently read a news item about the mycobiome: the fungal part of the microbiome. Since it was only recently that a new lymph network was (re)discovered, is it possible that our bodies are interlaced with a hyphae network that no one has noticed because they weren't looking for it? I assume that if it was significant, it would be noticed when antifungals are used, but still....