5 ms·

Ah, I see what you're saying. I think a more logical approach (for me) would be to say that there might be multiple biomarkers which could present ME/CFS type

Ah, I see what you're saying. I think a more logical approach (for me) would be to say that there might be multiple biomarkers which could present ME/CFS type symptoms in different ways. Dr. Bhupesh Prusty has recently given some lectures on his discoveries related to Fibernectin, for example. That could be a massive breakthrough, but we need more studies on it. One other data point that might interest you: apparently a large percentage of ME/CFS patients are finding relief through valtrex. Apparently there is some relation to the herpes virus, although nobody understands how or why.

maxehmookau 3y ago
> apparently a large percentage of ME/CFS patients are finding relief through valtrex _Are they though?_ This needs a citation. What constitutes large? A majority? That's unlikely, especially in the UK where medications aren't prescribed unless there's measured clinical value in it. I'm sure some are finding relief, but until we know how many and how much relief it could just be a placebo effect, right? I hope that anyone affected by ME finds relief, but the discourse online about it always confuses me. There's always a slight undercurrent of "those mean doctors" and a breakthrough _just_ on the horizon: "That could be a massive breakthrough, but..." "apparently a large percentage of ME/CFS patients are finding relief..." "Apparently there is some relation to the herpes virus, although nobody understands how or why." In reality, nobody actually knows. Some scientists have got some ideas, some of which stand up to some form of scientific scrutiny. But that's basically it.
- aestetix 3y ago
  I agree 100%. That's why I used words like "seems" and "apparently." It's also why I opened my initial post with "There needs to be more research into this horrible disease."
- cpncrunch 3y ago
  There was a Valtrex trial a few years ago, and the results weren't impressive. Valtrex didn't even reduce EBV titers more than placebo (table III): https://iv.iiarjournals.org/content/invivo/21/5/707.full.pdf https://iv.iiarjournals.org/content/invivo/21/5/707.full.pdf Other trials into antivirals have been negative.
  - soudiere 3y ago
    Discussion is more nuanced This study screened for active vs latent on number of viruses in patients vs assumed health controls, bottom chart here is what you would evaluate Valtrex effectiveness against. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-03887-0/figures/4 https://translational-medicine.biomedcentral.com/articles/10...
    - cpncrunch 3y ago
      I don't see any mention of Valtrex there. The point is, multiple studies have been done for antivirals in ME/CFS, and there is no difference in fatigue between arms. EBV, HHV6 and HHV6 tend to reactivate during stress, but don't typically cause symptoms. I think what we're seeing in ME/CFS is this reactivation, but it's not necessarily what is causing the problem (if it was, antivirals would help, but they don't).
      - soudiere 3y ago
        Great point, agreed, viral re-activation seems suspect on causality. I was suggesting to crossreference Valtrex effectiveness against the activated virii in the study I linked. If Valtrex is not effective against the reactivated cohorts, we need more falsification around antivirals <-> ME/CFS.
InSteady 3y ago
The viral angle is fascinating to me. From the article: >Viruses can trigger ER [endoplasmic reticulum] stress, perhaps explaining why ME/CFS and related conditions often arise after infection. Since you mention herpes, I'll bring up what I've read about Epstein-Barr (EBV) (which belongs to the herpes family of viruses). It's estimated that 90% of the global population will contract EBV in their lifetime. In most people, EBV goes dormant for after the initial infection is cleared and more or less stays that way for life. But in some people, for unknown reasons, it can chronically reactivate, triggered by stress, other illnesses, immune dysfunction episodes, etc. Apparently it loves to hang out in the spleen, although I believe it has been found to reside in other organs as well in these cases of chronic reactivation. I would be shocked if this were the only virus to do so, but at present it seems to be the most studied, perhaps because EBV is fairly strongly correlated with a bunch of cancers, auto-immune disorders, and chronic conditions (including MS as recently demonstrated in a huge study by the VA, n=10,000,000). Very interesting and important stuff. I look forward to further research into these mysterious long-term effects of viral infection.

maxehmookau 3y ago

> apparently a large percentage of ME/CFS patients are finding relief through valtrex _Are they though?_ This needs a citation. What constitutes large? A majority? That's unlikely, especially in the UK where medications aren't prescribed unless there's measured clinical value in it. I'm sure some are finding relief, but until we know how many and how much relief it could just be a placebo effect, right? I hope that anyone affected by ME finds relief, but the discourse online about it always confuses me. There's always a slight undercurrent of "those mean doctors" and a breakthrough _just_ on the horizon: "That could be a massive breakthrough, but..." "apparently a large percentage of ME/CFS patients are finding relief..." "Apparently there is some relation to the herpes virus, although nobody understands how or why." In reality, nobody actually knows. Some scientists have got some ideas, some of which stand up to some form of scientific scrutiny. But that's basically it.

aestetix 3y ago
I agree 100%. That's why I used words like "seems" and "apparently." It's also why I opened my initial post with "There needs to be more research into this horrible disease."
cpncrunch 3y ago
There was a Valtrex trial a few years ago, and the results weren't impressive. Valtrex didn't even reduce EBV titers more than placebo (table III): https://iv.iiarjournals.org/content/invivo/21/5/707.full.pdf https://iv.iiarjournals.org/content/invivo/21/5/707.full.pdf Other trials into antivirals have been negative.
- soudiere 3y ago
  Discussion is more nuanced This study screened for active vs latent on number of viruses in patients vs assumed health controls, bottom chart here is what you would evaluate Valtrex effectiveness against. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-03887-0/figures/4 https://translational-medicine.biomedcentral.com/articles/10...
  - cpncrunch 3y ago
    I don't see any mention of Valtrex there. The point is, multiple studies have been done for antivirals in ME/CFS, and there is no difference in fatigue between arms. EBV, HHV6 and HHV6 tend to reactivate during stress, but don't typically cause symptoms. I think what we're seeing in ME/CFS is this reactivation, but it's not necessarily what is causing the problem (if it was, antivirals would help, but they don't).
    - soudiere 3y ago
      Great point, agreed, viral re-activation seems suspect on causality. I was suggesting to crossreference Valtrex effectiveness against the activated virii in the study I linked. If Valtrex is not effective against the reactivated cohorts, we need more falsification around antivirals <-> ME/CFS.

InSteady 3y ago

The viral angle is fascinating to me. From the article: >Viruses can trigger ER [endoplasmic reticulum] stress, perhaps explaining why ME/CFS and related conditions often arise after infection. Since you mention herpes, I'll bring up what I've read about Epstein-Barr (EBV) (which belongs to the herpes family of viruses). It's estimated that 90% of the global population will contract EBV in their lifetime. In most people, EBV goes dormant for after the initial infection is cleared and more or less stays that way for life. But in some people, for unknown reasons, it can chronically reactivate, triggered by stress, other illnesses, immune dysfunction episodes, etc. Apparently it loves to hang out in the spleen, although I believe it has been found to reside in other organs as well in these cases of chronic reactivation. I would be shocked if this were the only virus to do so, but at present it seems to be the most studied, perhaps because EBV is fairly strongly correlated with a bunch of cancers, auto-immune disorders, and chronic conditions (including MS as recently demonstrated in a huge study by the VA, n=10,000,000). Very interesting and important stuff. I look forward to further research into these mysterious long-term effects of viral infection.