8 ms·

A Mechanism for Long Covid

112 points by pera 4y ago

ekianjo 4y ago
TLDR: increase of lactate levels may be a pathway to explain long covid
- wahnfrieden 4y ago
  There was so much culture war discourse on this…
- mitjam 4y ago
  Maybe a too short summary; my tldr would be: self-help research led to the hypothesis that acid-base balance disruption may underpin Long Covid. The hypothesis was published as a paper, the author’s successful self-treatment is described here: https://mastodon.nl/@vickyvdtogt/110202237846457614 https://mastodon.nl/@vickyvdtogt/110202237846457614 high lactate levels were an indicator that helped finding a hypothesis which could explain the diverse symptoms of Long Covid.
  - csdvrx 4y ago
    I didn't see any description of her self treatment, but I'd assume that to be taking bicarbonate or anything else that say marathoners take like L Carnitine, Carnosine, Beta Alanine, Leucine, Iso Leucine, and Valine. https://www.runnersworld.com/training/a20860259/does-baking-soda-boost-endurance/ https://www.runnersworld.com/training/a20860259/does-baking-... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867441/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867441/ https://www.mbsf.org/the-best-vitamins-and-supplements-for-runners https://www.mbsf.org/the-best-vitamins-and-supplements-for-r...
    - mitjam 4y ago
      Yes, I only found it after looking at her Mastodon channel, it ist not a true tldr, but I think still worthwhile to mention. Maybe I should have given this as additional context at the end. Thank you for the feedback and the additional links.
    - PaulDavisThe1st 4y ago
      Recent research has cast doubt on lactate levels as an issue for fatigue during endurance sports. https://www.january.ai/blog/what-is-blood-lactate-vs-lactic-acid https://www.january.ai/blog/what-is-blood-lactate-vs-lactic-...
    - infl8ed 4y ago
      She has posted another thread discussing her treatment https://mastodon.nl/@vickyvdtogt/110202251308724694 https://mastodon.nl/@vickyvdtogt/110202251308724694
csdvrx 4y ago
Paper on https://www.frontiersin.org/articles/10.3389/fimmu.2023.1150105/full https://www.frontiersin.org/articles/10.3389/fimmu.2023.1150...
- Animats 4y ago
  It's a hypothesis supposedly testable in a month. Now what?
  - csdvrx 4y ago
    > It's a hypothesis supposedly testable in a month. Now what? Your guess is as good as mine. There's a lot of politics embedded in science now: I learned on the tinnitus thread posted here a few days ago that the side effect of tinnitus after vaccination was very likely to be real, but that research had been suppressed to help with vaccine adoption. It's possible it's a psyops, but here, on HN? By several people with a valid post history? Extremely unlikely. For this, given how simple the confirmation is (test lactate levels), I hope sufferers of long covid will measure their levels and try the simple suggested approach, for which there should be very little risks of drawbacks (supplementing in a few amino acids and carnitine, taking some sodium bicarbonate) Hopefully, enough of a critical mass of confirmation for both the proposed confirmation test + simple treatment option will lead to actual research, but what a shame it didn't come from mainstream science, and what a shame independant researchers are being put on the defensive: as the author said in a link just posted: https://mastodon.nl/@vickyvdtogt/110202251308724694 https://mastodon.nl/@vickyvdtogt/110202251308724694 > I want to state again: this is not a suggestion to what people should do, as it needs to be studied and clinically tested first. Well, maybe it should be, I don't see the risks of people trying stretching exercices, breathing exercices, supplementing in a few amino acids or drinking alkaline water. I can already imagine comments "BUT WHAT IF PEOPLE DRINK GALLONS OF PH BUFFERS???" Well, it's not what's suggested, and even water can kill if drinking too much of it. The real shame is how many people have learned to distrust science and how the political takeover has damaged the trust network necessary for society to work.
thenerdhead 4y ago
> The cause of PASC is currently debated but likely involves several different components, including: viral dissemination and persistence, immune activation and dysregulation (e.g. clotting, autoantibodies and reactivation of pre-existing latent viruses), cell death and tissue damage, and long-lasting cellular changes (e.g. epigenetic changes, senescence, fibroproliferation, metabolism alterations) (3). However, at present we lack an integrative understanding of how these disease components interact to cause the variable symptomology of PASC. Based on studies on acute COVID-19, PASC and the related myalgic encephalomyelitis (ME; chronic fatigue syndrome), we hypothesize that an inflammatory acid-base disruption underpins PASC and that viral proteins, both acutely and persistently-expressed, cause disease symptomology through disseminated tissue damage and inflammatory acid-base disruptions. Seems like an explanation for the body compensating for hypoxic-environments by changing its acid-base. But what is fundamentally causing these environments? Focusing on sleep, diet/hydration, and exercise are your three major ways to combat long covid. The latter (exercise) is heavily controversial in the long covid / ME/CFS communities, but would help moderate your acid-base over the long term if you can push through the pain/fatigue/etc. The author suggests a few things helped them. Deep breathing, diet changes surrounding acidic foods, and stretching. My personal experience with two bouts of long covid (14 months and 7 months) has me still believing that microclots and nitric oxide deficiency being the key factors in my recovery. I've recovered twice now and back to pre-covid ability. It took me two years of constant exercise to build back to where I was. A modern Sisyphean task at that. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212559/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212559/
- csdvrx 4y ago
  > Seems like an explanation for the body compensating for hypoxic-environments by changing its acid-base. But what is fundamentally causing these environments? Damage to the lung tissue!
  - thenerdhead 4y ago
    No idea. I've read stories about people getting CTs showing damage and others showing absolutely none. A very, very strange virus.
labrador 4y ago
I managed to avoid Covid for three years but finally got it. I suspect it is one of the new more transmissible strains from China after they opened up and 230 million Chinese got sick, because I got it at the Trader Joe's next to the San Jose airport and live in an Asian neighborhood. I've been sick for 6 weeks now, so I don't know if that qualifies as long Covid. After years of hearing it was "just a flu" I didn't think much of it interacting with my bipolar type II disorder, but I noticed I was hypomanic with Covid in a strange sort of way and my quetiapine no longer seemed to work. Other strange things have happened, such as I am a vegetarian now because eating meat tastes repulsive to me. Dairy is ok. I also can't stand using cannabis anymore. The high feels different, much harsher and weirder. Not much research has been done in the areas of Covid interaction with psychiatric disorders, psyche meds and interactions with recreational drugs but I'm hoping things get back to normal so I don't have to keep researching it. All except for the meat part, because I'm happy being a vegetarian. And I'll save money at the cannabis store. Full disclosure: I'm fully vaxxed and boosted with bivalent formulations of the Moderna and Pfizer-BioNTech in November 2022 Edit: I'm not making up wild theories of new mutations. There are multiple credible sources. This is just one https://www.voanews.com/a/experts-weigh-risk-of-new-covid-mutations-from-china/6895946.html https://www.voanews.com/a/experts-weigh-risk-of-new-covid-mu... I'm surprised there is any negative reaction to this comment. I would love if someone with such a reaction would explain themselves
- MengerSponge 4y ago
  > years of hearing it was "just a flu" "Just a flu" was always bullshit on two fronts: influenza is a terrible disease that has killed millions, and everyone serious knew COVID was worse. But of course: "If you tell a lie big enough and keep repeating it, people will eventually come to believe it. The lie can be maintained only for such time as the State can shield the people from the political, economic and/or military consequences of the lie."
  - deleted 4y ago
    [deleted]
  - goatlover 4y ago
civilized 4y ago
Any connection of this mechanism to cognitive symptoms, brain fog, or sleep difficulties?
- jetanoia 4y ago
  According to the lead researcher, yes. While anecdotal, her sleep improved significantly within 1 or 2 days of starting this new diet. I believe she also cites improvements across cognitive symptoms - both her own symptoms and also more broadly, why it would help generally for others. Unfortunately my own LC brain fog is inhibiting my recall of the specifics. I’m glad to hear she has found relief and hopefully others will, too. I’ll give it a try if I muster sufficient motivation and if this approach is acclaimed by some more positive anectdotes (especially those people who report an abrupt improvement in symptoms). I looked up her treatment regimen and it does sound like quite a hassle. But the risks sound manageable especially in light of the potential benefits.
yafbum 4y ago
> After continuing this makeshift treatment for a couple of weeks, I improved to a point where I was completely and stably symptom free.Since then I’ve been working with Dr. Jeremy Rossman to put this mechanism on paper, so that it can be shared and further researched, tested, and proven. Counting down seconds to articles spinning this as "CURE FOR LONG COVID MAY HAVE BEEN FOUND", someone who thinks they have long COVID "does their own research" and starts drinking gallons of pH buffering solution. I'm excited and happy for the researcher but if we've learned anything about COVID treatments in the past few years, it's that desperate people will do desperate things (eg hydrochloroquine) well after they've been shown to be harmful. I think it'd be nice to not get too many people's hopes up yet.
- deleted 4y ago
  [deleted]
- canadaduane 4y ago
  Eating more fruits and vegetables, breathing, and stretching doesn't sound like so much of a downside risk. Hope has many lives.
Mildlypolite 4y ago
I can confirm that, after having ME for more than ten years, this researcher seem to have understood the underlying mechanisms. I've got better with a similar treatment and I will persevere now that I know more precisely what to do.
dTal 4y ago
>Meanwhile, I decided to put the hypothesis to the test and came up with a treatment consisting of multiple components that would, in theory, enable me to rebalance my acid-base levels. After trying this treatment for a couple of days I started to see significant improvements in my full range of #LongCovid symptoms. "I have discovered a truly marvelous treatment for Long Covid, which, however, this margin is not large enough to contain."
- viraptor 4y ago
  It's described in a separate thread https://mastodon.nl/@vickyvdtogt/110202237846457614 https://mastodon.nl/@vickyvdtogt/110202237846457614
gadders 4y ago
Long COVID is similar to ME in that the cause is likely psychiatric (although real to the sufferer) rather than physical. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8870488/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8870488/ "Conclusions: Our study shows higher levels of neuroticism in patients with post-COVID syndrome."
- Mildlypolite 4y ago
  Higher neuroticism? I am a psychologist and this means nothing. This "believes" were entertained for a long time about ME but we have enough scientifical evidence that they were false. Historically, this happened with multiple sclerosis, people with ms were labelled as fakers and ms was called "faker's disease". Let's not go again to those horrible times today. For an ample literature about ME I Invite you to visit the open medicine foundation website (the centre that studies ME at Stanford).
  - gadders 4y ago
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643988/p https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643988/p "Higher emotional instability was associated with both definitions of chronic fatigue and was confounded by shared genetics." Of course, this theory is very unpopular with sufferers of ME such as yourself.
    - nequo 4y ago
      > Of course, this theory is very unpopular with sufferers of ME such as yourself. This is an unnecessary ad hominem. > https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643988 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643988 Unlike your first source, this one does not even attempt to quantify what percentage of the variation in ME is explained by genetics. This only says that genetics plays a role. You need strong evidence to credibly state a monocausal explanation for something like ME.
    - Mildlypolite 4y ago
      The reality is that different biomarkers were discovered through the years by the Stanford centre by we are still looking for a specific biomarker to ME. For example one of the criteria to diagnose ME is to have Pots, which is a disease with very specific symptoms. Pots is a disfunction of the autonomic system and it is often associated with gastroparesis. I repeat, you are endorsing a very obsolete theory about ME.
Jamesbeam 4y ago
She has done research on herself...with cheap electronic home monitoring devices that were not calibrated to any proper laboratory standards, without any kind of proper blinding or any other globally accepted research standards. I can't. I can't do this any longer. This is as professional as a certain former US president suggesting we should shine strong light into the body or inject people's lungs with disinfectant. It's not a "hypothesis" it's just you being stupid. I'm not a scientist, but I beg people to not test wild stuff on themselves and instead let the people do their job who dedicated most of their lives into figuring out problems the proper scientific way. You are not a scientist because you read some research papers and stretched a bit at home and changed your diet and magically feel better now. Long-Covid for many people is the first time they have to deal with a life-altering illness that we do not have a treatment for yet. So unless you have prior experience with that kind of situation, I get it, it's scary and hard to understand that there might never be a cure. I have the "luxury" as someone with a lifelong autoimmune disease that cost me a vital organ along the way and can only live because of science and popping a pill each day, plus surviving cancer, that sometimes all you can do is make the best out of the situation as is while real scientists and doctors figure stuff out. Accept that at this time you might not be going to get back to what you were capable of before the illness. Build psychological resilience and find mechanisms that help you get back to an acceptable level of life quality. It's not worth it chasing DIY treatments if you have no fucking idea what you are doing, like this girl. Desperation is not a good guide in life decisions.
- adamiscool8 4y ago
  >This is as professional as a certain former US president suggesting we should shine strong light into the body or inject people's lungs with disinfectant. It's not a "hypothesis" it's just you being stupid. Ultraviolet light treatments introduced into the tracheas of five critically ill COVID-19 patients appeared to be safe and associated with a reduction in the respiratory load of SARS-CoV-2—the virus responsible for COVID-19—in all but one patient, according to a study conducted by Cedars-Sinai. [0] Maybe people should be trying wild stuff on themselves. Granted they shouldn't make sweeping recommendations from it. But moving fast and breaking things solves more problems than waiting for scientific consensus. Planck's Principle and all that. [0] https://www.cedars-sinai.org/newsroom/reduced-viral-loads-seen-in-covid-19-patients-treated-with-uva-light/ https://www.cedars-sinai.org/newsroom/reduced-viral-loads-se...
realitysballs 4y ago
Wow not only is this an interesting read , it’s on mastodon instead of twitter which is somewhat more cathartic than the read itself haha
ericlavigne 4y ago
The author tried this treatment on herself. I was unable to find data associated with this self-experiment, such as lactate measurements on multiple days while applying the treatment. Is there another article I missed that covered this?

112 points by pera 4y ago

ekianjo 4y ago

TLDR: increase of lactate levels may be a pathway to explain long covid

wahnfrieden 4y ago
There was so much culture war discourse on this…
mitjam 4y ago
Maybe a too short summary; my tldr would be: self-help research led to the hypothesis that acid-base balance disruption may underpin Long Covid. The hypothesis was published as a paper, the author’s successful self-treatment is described here: https://mastodon.nl/@vickyvdtogt/110202237846457614 https://mastodon.nl/@vickyvdtogt/110202237846457614 high lactate levels were an indicator that helped finding a hypothesis which could explain the diverse symptoms of Long Covid.
- csdvrx 4y ago
  I didn't see any description of her self treatment, but I'd assume that to be taking bicarbonate or anything else that say marathoners take like L Carnitine, Carnosine, Beta Alanine, Leucine, Iso Leucine, and Valine. https://www.runnersworld.com/training/a20860259/does-baking-soda-boost-endurance/ https://www.runnersworld.com/training/a20860259/does-baking-... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867441/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867441/ https://www.mbsf.org/the-best-vitamins-and-supplements-for-runners https://www.mbsf.org/the-best-vitamins-and-supplements-for-r...
  - mitjam 4y ago
    Yes, I only found it after looking at her Mastodon channel, it ist not a true tldr, but I think still worthwhile to mention. Maybe I should have given this as additional context at the end. Thank you for the feedback and the additional links.
  - PaulDavisThe1st 4y ago
    Recent research has cast doubt on lactate levels as an issue for fatigue during endurance sports. https://www.january.ai/blog/what-is-blood-lactate-vs-lactic-acid https://www.january.ai/blog/what-is-blood-lactate-vs-lactic-...
  - infl8ed 4y ago
    She has posted another thread discussing her treatment https://mastodon.nl/@vickyvdtogt/110202251308724694 https://mastodon.nl/@vickyvdtogt/110202251308724694

csdvrx 4y ago

Paper on https://www.frontiersin.org/articles/10.3389/fimmu.2023.1150105/full https://www.frontiersin.org/articles/10.3389/fimmu.2023.1150...

Animats 4y ago
It's a hypothesis supposedly testable in a month. Now what?
- csdvrx 4y ago
  > It's a hypothesis supposedly testable in a month. Now what? Your guess is as good as mine. There's a lot of politics embedded in science now: I learned on the tinnitus thread posted here a few days ago that the side effect of tinnitus after vaccination was very likely to be real, but that research had been suppressed to help with vaccine adoption. It's possible it's a psyops, but here, on HN? By several people with a valid post history? Extremely unlikely. For this, given how simple the confirmation is (test lactate levels), I hope sufferers of long covid will measure their levels and try the simple suggested approach, for which there should be very little risks of drawbacks (supplementing in a few amino acids and carnitine, taking some sodium bicarbonate) Hopefully, enough of a critical mass of confirmation for both the proposed confirmation test + simple treatment option will lead to actual research, but what a shame it didn't come from mainstream science, and what a shame independant researchers are being put on the defensive: as the author said in a link just posted: https://mastodon.nl/@vickyvdtogt/110202251308724694 https://mastodon.nl/@vickyvdtogt/110202251308724694 > I want to state again: this is not a suggestion to what people should do, as it needs to be studied and clinically tested first. Well, maybe it should be, I don't see the risks of people trying stretching exercices, breathing exercices, supplementing in a few amino acids or drinking alkaline water. I can already imagine comments "BUT WHAT IF PEOPLE DRINK GALLONS OF PH BUFFERS???" Well, it's not what's suggested, and even water can kill if drinking too much of it. The real shame is how many people have learned to distrust science and how the political takeover has damaged the trust network necessary for society to work.

thenerdhead 4y ago

> The cause of PASC is currently debated but likely involves several different components, including: viral dissemination and persistence, immune activation and dysregulation (e.g. clotting, autoantibodies and reactivation of pre-existing latent viruses), cell death and tissue damage, and long-lasting cellular changes (e.g. epigenetic changes, senescence, fibroproliferation, metabolism alterations) (3). However, at present we lack an integrative understanding of how these disease components interact to cause the variable symptomology of PASC. Based on studies on acute COVID-19, PASC and the related myalgic encephalomyelitis (ME; chronic fatigue syndrome), we hypothesize that an inflammatory acid-base disruption underpins PASC and that viral proteins, both acutely and persistently-expressed, cause disease symptomology through disseminated tissue damage and inflammatory acid-base disruptions. Seems like an explanation for the body compensating for hypoxic-environments by changing its acid-base. But what is fundamentally causing these environments? Focusing on sleep, diet/hydration, and exercise are your three major ways to combat long covid. The latter (exercise) is heavily controversial in the long covid / ME/CFS communities, but would help moderate your acid-base over the long term if you can push through the pain/fatigue/etc. The author suggests a few things helped them. Deep breathing, diet changes surrounding acidic foods, and stretching. My personal experience with two bouts of long covid (14 months and 7 months) has me still believing that microclots and nitric oxide deficiency being the key factors in my recovery. I've recovered twice now and back to pre-covid ability. It took me two years of constant exercise to build back to where I was. A modern Sisyphean task at that. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212559/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212559/

csdvrx 4y ago
> Seems like an explanation for the body compensating for hypoxic-environments by changing its acid-base. But what is fundamentally causing these environments? Damage to the lung tissue!
- thenerdhead 4y ago
  No idea. I've read stories about people getting CTs showing damage and others showing absolutely none. A very, very strange virus.

labrador 4y ago

I managed to avoid Covid for three years but finally got it. I suspect it is one of the new more transmissible strains from China after they opened up and 230 million Chinese got sick, because I got it at the Trader Joe's next to the San Jose airport and live in an Asian neighborhood. I've been sick for 6 weeks now, so I don't know if that qualifies as long Covid. After years of hearing it was "just a flu" I didn't think much of it interacting with my bipolar type II disorder, but I noticed I was hypomanic with Covid in a strange sort of way and my quetiapine no longer seemed to work. Other strange things have happened, such as I am a vegetarian now because eating meat tastes repulsive to me. Dairy is ok. I also can't stand using cannabis anymore. The high feels different, much harsher and weirder. Not much research has been done in the areas of Covid interaction with psychiatric disorders, psyche meds and interactions with recreational drugs but I'm hoping things get back to normal so I don't have to keep researching it. All except for the meat part, because I'm happy being a vegetarian. And I'll save money at the cannabis store. Full disclosure: I'm fully vaxxed and boosted with bivalent formulations of the Moderna and Pfizer-BioNTech in November 2022 Edit: I'm not making up wild theories of new mutations. There are multiple credible sources. This is just one https://www.voanews.com/a/experts-weigh-risk-of-new-covid-mutations-from-china/6895946.html https://www.voanews.com/a/experts-weigh-risk-of-new-covid-mu... I'm surprised there is any negative reaction to this comment. I would love if someone with such a reaction would explain themselves

MengerSponge 4y ago
> years of hearing it was "just a flu" "Just a flu" was always bullshit on two fronts: influenza is a terrible disease that has killed millions, and everyone serious knew COVID was worse. But of course: "If you tell a lie big enough and keep repeating it, people will eventually come to believe it. The lie can be maintained only for such time as the State can shield the people from the political, economic and/or military consequences of the lie."
- deleted 4y ago
  [deleted]
- goatlover 4y ago

civilized 4y ago

Any connection of this mechanism to cognitive symptoms, brain fog, or sleep difficulties?

jetanoia 4y ago
According to the lead researcher, yes. While anecdotal, her sleep improved significantly within 1 or 2 days of starting this new diet. I believe she also cites improvements across cognitive symptoms - both her own symptoms and also more broadly, why it would help generally for others. Unfortunately my own LC brain fog is inhibiting my recall of the specifics. I’m glad to hear she has found relief and hopefully others will, too. I’ll give it a try if I muster sufficient motivation and if this approach is acclaimed by some more positive anectdotes (especially those people who report an abrupt improvement in symptoms). I looked up her treatment regimen and it does sound like quite a hassle. But the risks sound manageable especially in light of the potential benefits.

yafbum 4y ago

> After continuing this makeshift treatment for a couple of weeks, I improved to a point where I was completely and stably symptom free.Since then I’ve been working with Dr. Jeremy Rossman to put this mechanism on paper, so that it can be shared and further researched, tested, and proven. Counting down seconds to articles spinning this as "CURE FOR LONG COVID MAY HAVE BEEN FOUND", someone who thinks they have long COVID "does their own research" and starts drinking gallons of pH buffering solution. I'm excited and happy for the researcher but if we've learned anything about COVID treatments in the past few years, it's that desperate people will do desperate things (eg hydrochloroquine) well after they've been shown to be harmful. I think it'd be nice to not get too many people's hopes up yet.

deleted 4y ago
[deleted]
canadaduane 4y ago
Eating more fruits and vegetables, breathing, and stretching doesn't sound like so much of a downside risk. Hope has many lives.

Mildlypolite 4y ago

I can confirm that, after having ME for more than ten years, this researcher seem to have understood the underlying mechanisms. I've got better with a similar treatment and I will persevere now that I know more precisely what to do.

dTal 4y ago

>Meanwhile, I decided to put the hypothesis to the test and came up with a treatment consisting of multiple components that would, in theory, enable me to rebalance my acid-base levels. After trying this treatment for a couple of days I started to see significant improvements in my full range of #LongCovid symptoms. "I have discovered a truly marvelous treatment for Long Covid, which, however, this margin is not large enough to contain."

viraptor 4y ago
It's described in a separate thread https://mastodon.nl/@vickyvdtogt/110202237846457614 https://mastodon.nl/@vickyvdtogt/110202237846457614

gadders 4y ago

Long COVID is similar to ME in that the cause is likely psychiatric (although real to the sufferer) rather than physical. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8870488/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8870488/ "Conclusions: Our study shows higher levels of neuroticism in patients with post-COVID syndrome."

Mildlypolite 4y ago
Higher neuroticism? I am a psychologist and this means nothing. This "believes" were entertained for a long time about ME but we have enough scientifical evidence that they were false. Historically, this happened with multiple sclerosis, people with ms were labelled as fakers and ms was called "faker's disease". Let's not go again to those horrible times today. For an ample literature about ME I Invite you to visit the open medicine foundation website (the centre that studies ME at Stanford).
- gadders 4y ago
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643988/p https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643988/p "Higher emotional instability was associated with both definitions of chronic fatigue and was confounded by shared genetics." Of course, this theory is very unpopular with sufferers of ME such as yourself.
  - nequo 4y ago
    > Of course, this theory is very unpopular with sufferers of ME such as yourself. This is an unnecessary ad hominem. > https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643988 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3643988 Unlike your first source, this one does not even attempt to quantify what percentage of the variation in ME is explained by genetics. This only says that genetics plays a role. You need strong evidence to credibly state a monocausal explanation for something like ME.
  - Mildlypolite 4y ago
    The reality is that different biomarkers were discovered through the years by the Stanford centre by we are still looking for a specific biomarker to ME. For example one of the criteria to diagnose ME is to have Pots, which is a disease with very specific symptoms. Pots is a disfunction of the autonomic system and it is often associated with gastroparesis. I repeat, you are endorsing a very obsolete theory about ME.

Jamesbeam 4y ago

She has done research on herself...with cheap electronic home monitoring devices that were not calibrated to any proper laboratory standards, without any kind of proper blinding or any other globally accepted research standards. I can't. I can't do this any longer. This is as professional as a certain former US president suggesting we should shine strong light into the body or inject people's lungs with disinfectant. It's not a "hypothesis" it's just you being stupid. I'm not a scientist, but I beg people to not test wild stuff on themselves and instead let the people do their job who dedicated most of their lives into figuring out problems the proper scientific way. You are not a scientist because you read some research papers and stretched a bit at home and changed your diet and magically feel better now. Long-Covid for many people is the first time they have to deal with a life-altering illness that we do not have a treatment for yet. So unless you have prior experience with that kind of situation, I get it, it's scary and hard to understand that there might never be a cure. I have the "luxury" as someone with a lifelong autoimmune disease that cost me a vital organ along the way and can only live because of science and popping a pill each day, plus surviving cancer, that sometimes all you can do is make the best out of the situation as is while real scientists and doctors figure stuff out. Accept that at this time you might not be going to get back to what you were capable of before the illness. Build psychological resilience and find mechanisms that help you get back to an acceptable level of life quality. It's not worth it chasing DIY treatments if you have no fucking idea what you are doing, like this girl. Desperation is not a good guide in life decisions.

adamiscool8 4y ago
>This is as professional as a certain former US president suggesting we should shine strong light into the body or inject people's lungs with disinfectant. It's not a "hypothesis" it's just you being stupid. Ultraviolet light treatments introduced into the tracheas of five critically ill COVID-19 patients appeared to be safe and associated with a reduction in the respiratory load of SARS-CoV-2—the virus responsible for COVID-19—in all but one patient, according to a study conducted by Cedars-Sinai. [0] Maybe people should be trying wild stuff on themselves. Granted they shouldn't make sweeping recommendations from it. But moving fast and breaking things solves more problems than waiting for scientific consensus. Planck's Principle and all that. [0] https://www.cedars-sinai.org/newsroom/reduced-viral-loads-seen-in-covid-19-patients-treated-with-uva-light/ https://www.cedars-sinai.org/newsroom/reduced-viral-loads-se...

realitysballs 4y ago

Wow not only is this an interesting read , it’s on mastodon instead of twitter which is somewhat more cathartic than the read itself haha

ericlavigne 4y ago

The author tried this treatment on herself. I was unable to find data associated with this self-experiment, such as lactate measurements on multiple days while applying the treatment. Is there another article I missed that covered this?