3 ms·

> If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no l

> If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer. To me, this argument does not make sense. Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. There is clearly some kind of imbalance, somewhere. We use biomarkers like CRP levels to determine whether someone has an infection, others for cancer, or any other disease. Why would it be different for this? If we can identify some kind of biomarker... be it a protein, something in the blood, etc, and link it to COVID, then we can start testing treatments to see how they impact the biomarker.

maxehmookau 3y ago
> Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. I didn't really make an argument to "not make sense". Right now, ME/CFS may just be a collection of symptoms rather than a specific _thing_ that can be tracked, measures and cured. Or it may be a specific infection. We don't know. Sure, it's compelling. But the plural of anecdote isn't data. It may seem obvious, but so far we haven't found the biomarker yet and must surely keep an open mind that one may not exist. I'm not saying we should stop looking, but that the thing we're looking for may not appear.
- aestetix 3y ago
  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
>It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound We know that infections cause sickness behaviour (fatigue, depression, etc.) due to the effect of the cytokines on the brain. The interesting thing is that the brain itself releases similar cytokines in response to mental stress, and mental stress also activates the glial immune cells in the brain. Infections also activate the HPA axis (the body's stress system) in the same way as mental stress does. This is to give the immune system energy to fight the infection, and also to prevent a fatal over-reaction by the immune system. Chronic long-term stress can result in a blunted HPA axis response, and this is commonly seen in ME/CFS. Patients who have been bedbound with ME/CFS report that they were trapped by fear that there was something wrong with their bodies, and they felt fear when going outside or doing anything, and this caused further symptoms. Reducing that fear, and experimenting with activities again in a calm manner seems to be key to recovery. Looking at some of the tweets from physics girl, it looks like she may be stuck in this state.

maxehmookau 3y ago

> Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. I didn't really make an argument to "not make sense". Right now, ME/CFS may just be a collection of symptoms rather than a specific _thing_ that can be tracked, measures and cured. Or it may be a specific infection. We don't know. Sure, it's compelling. But the plural of anecdote isn't data. It may seem obvious, but so far we haven't found the biomarker yet and must surely keep an open mind that one may not exist. I'm not saying we should stop looking, but that the thing we're looking for may not appear.

aestetix 3y ago
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

>It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound We know that infections cause sickness behaviour (fatigue, depression, etc.) due to the effect of the cytokines on the brain. The interesting thing is that the brain itself releases similar cytokines in response to mental stress, and mental stress also activates the glial immune cells in the brain. Infections also activate the HPA axis (the body's stress system) in the same way as mental stress does. This is to give the immune system energy to fight the infection, and also to prevent a fatal over-reaction by the immune system. Chronic long-term stress can result in a blunted HPA axis response, and this is commonly seen in ME/CFS. Patients who have been bedbound with ME/CFS report that they were trapped by fear that there was something wrong with their bodies, and they felt fear when going outside or doing anything, and this caused further symptoms. Reducing that fear, and experimenting with activities again in a calm manner seems to be key to recovery. Looking at some of the tweets from physics girl, it looks like she may be stuck in this state.