4 ms·

ME/CFS is seriously underinvested. I don't really understand why, any drug that makes a noticeable difference here will be a guaranteed money printer. There are

ME/CFS is seriously underinvested. I don't really understand why, any drug that makes a noticeable difference here will be a guaranteed money printer. There are millions of people suffering total disability, many in developed countries that have well funded medical insurance. Compare that to depression (which it only superficially resembles): many SSRIs, SNRIs, multiple "schools" of psychotherapy, neuroleptics, lithium, ketamine, ECT, ...

andbberger 2y ago
it's stigmatized, has an overwhelmingly complex etiology and no clear empirical signature. i think for the most part people just don't think it's real
- H8crilA 2y ago
  That's the thing: all of the above applies also to depression. And yet we do have quite a lot of options for treating it. Granted, they are not guaranteed to work, but they are sometimes/often effective, especially if you try a few of them in a sequence.
- soulofmischief 2y ago
  After acquiring a bad case of mononucleosis at 18, I acquired CFS which lasted a number of years and severely impacted my ability to focus and make meaningful progress for extended periods of time, and this worsened my depression and anxiety, which exacerbated the problem in a positive feedback loop. Everyone in my life disregarded me or didn't understand the severity of what I was dealing with. Looking back, returning to ADHD medicine back then might have been the best course of action, however a specialized treatment would be very welcome. Regardless of how others perceive the disease, people like me would greatly benefit.
  - emmelaich 2y ago
    I hesitate to ask but have you been checked for Multiple Sclerosis.
    - soulofmischief 2y ago
      I haven't specifically been checked for MS, though I have had a decently comprehensive array of tests done over the last decade before discovering I've had early-onset gout since my teens and it's likely that MS is something my doctors considered. Why do you ask?
      - emmelaich 2y ago
        Mono is caused by Epstein-Barr virus, which is also strongly implicated in MS. Perhaps you can get a single attack of MS but not get (many) more. Certainly fatigue is one symptom of MS. Blurred / double vision is another.
        soulofmischief 2y ago
        Interesting. I believe over 90% of Americans contract mononucleosis by adulthood, so is there something about contracting it later in life which could potentially increase the likelihood of developing MS? Almost all of my friends had contracted it as young children, when the virus apparently is less destructive. Thus, my experience of mono at 18, and with a compromised immune system, was considerably more severe than anything experienced by those I spoke to. I was unable to do anything but lay on someone's couch for 6 months. I was homeless and couldn't work due to the severity of the disease and risk of spreading it, and so I had to steal food in order to live. It's unsurprising that the aftermath was equally unpleasant.
dyauspitr 2y ago
You can probably take a low dose of adderall to alleviate atleast the symptoms.
- ipsum2 2y ago
  I tried this, it didn't work. Did you have success with this?
- firecall 2y ago
  I suggested that once, but was down voted by resident HN Medical Experts LOL The irony of warning not to take medical advice on HN, and then proceeding to offer alternative medical advice... This, despite the fact that Doctors do actually prescribe stimulants for CFS.
  - dredmorbius 2y ago
    Given that it's difficult to judge whether or not a specific piece of medical advice is good or bad, many people will flag anything that's 1) not solidly established standard of care or treatment and/or 2) not backed by a very robust reference or citation. Yes, it's likely that some potentially valid advice gets nuked in this regard, but it also captures a lot of the bad. Medical information couched as "I'm not an expert, here's my experience and some supporting references, your mileage may vary" tends to fly far better than doubling down on dissing opposing viewpoints or wildly novel and unsubstantiated information. Dang's somewhat adjacent commentary: <https://news.ycombinator.com/item?id=20078667 https://news.ycombinator.com/item?id=20078667> (in the context of someone requesting that bad medical advice be flagged). My view is that at best HN might raise potential treatments / practices which people should evaluate with a qualified medical professional. And yes, I'm aware that both access to and quality of same varies tremendously and can well be its own massive challenge. Particularly when capacity to seek out and engage with providers is itself limited.
- pizza 2y ago
  From what I understand about ME/CFS, both post-exertional malaise and dysautonomia are symptoms- seems like stimulant use could make those things go either way
tim333 2y ago
I think it's because it's a hard problem to understand and no one has got anywhere. They run all the tests on people suffering the symptoms but nothing useful pops out. Funnily enough I was watching a vid yesterday on a potential breakthrough in another tricky illness - alzheimer's - where a researcher looking at passing on epigenetic information in nematode worms tried the same experiment in mice, knocking out a particular enzyme, and quite by chance produced alzheimer effects in the mice. Which now looks like it may have hit on the mechanism in humans. So maybe something like that? https://x.com/ydeigin/status/1828961739934695831 https://x.com/ydeigin/status/1828961739934695831

andbberger 2y ago

it's stigmatized, has an overwhelmingly complex etiology and no clear empirical signature. i think for the most part people just don't think it's real

H8crilA 2y ago
That's the thing: all of the above applies also to depression. And yet we do have quite a lot of options for treating it. Granted, they are not guaranteed to work, but they are sometimes/often effective, especially if you try a few of them in a sequence.
soulofmischief 2y ago
After acquiring a bad case of mononucleosis at 18, I acquired CFS which lasted a number of years and severely impacted my ability to focus and make meaningful progress for extended periods of time, and this worsened my depression and anxiety, which exacerbated the problem in a positive feedback loop. Everyone in my life disregarded me or didn't understand the severity of what I was dealing with. Looking back, returning to ADHD medicine back then might have been the best course of action, however a specialized treatment would be very welcome. Regardless of how others perceive the disease, people like me would greatly benefit.
- emmelaich 2y ago
  I hesitate to ask but have you been checked for Multiple Sclerosis.
  - soulofmischief 2y ago
    I haven't specifically been checked for MS, though I have had a decently comprehensive array of tests done over the last decade before discovering I've had early-onset gout since my teens and it's likely that MS is something my doctors considered. Why do you ask?
    - emmelaich 2y ago
      Mono is caused by Epstein-Barr virus, which is also strongly implicated in MS. Perhaps you can get a single attack of MS but not get (many) more. Certainly fatigue is one symptom of MS. Blurred / double vision is another.
      - soulofmischief 2y ago
        Interesting. I believe over 90% of Americans contract mononucleosis by adulthood, so is there something about contracting it later in life which could potentially increase the likelihood of developing MS? Almost all of my friends had contracted it as young children, when the virus apparently is less destructive. Thus, my experience of mono at 18, and with a compromised immune system, was considerably more severe than anything experienced by those I spoke to. I was unable to do anything but lay on someone's couch for 6 months. I was homeless and couldn't work due to the severity of the disease and risk of spreading it, and so I had to steal food in order to live. It's unsurprising that the aftermath was equally unpleasant.

dyauspitr 2y ago

You can probably take a low dose of adderall to alleviate atleast the symptoms.

ipsum2 2y ago
I tried this, it didn't work. Did you have success with this?
firecall 2y ago
I suggested that once, but was down voted by resident HN Medical Experts LOL The irony of warning not to take medical advice on HN, and then proceeding to offer alternative medical advice... This, despite the fact that Doctors do actually prescribe stimulants for CFS.
- dredmorbius 2y ago
  Given that it's difficult to judge whether or not a specific piece of medical advice is good or bad, many people will flag anything that's 1) not solidly established standard of care or treatment and/or 2) not backed by a very robust reference or citation. Yes, it's likely that some potentially valid advice gets nuked in this regard, but it also captures a lot of the bad. Medical information couched as "I'm not an expert, here's my experience and some supporting references, your mileage may vary" tends to fly far better than doubling down on dissing opposing viewpoints or wildly novel and unsubstantiated information. Dang's somewhat adjacent commentary: <https://news.ycombinator.com/item?id=20078667 https://news.ycombinator.com/item?id=20078667> (in the context of someone requesting that bad medical advice be flagged). My view is that at best HN might raise potential treatments / practices which people should evaluate with a qualified medical professional. And yes, I'm aware that both access to and quality of same varies tremendously and can well be its own massive challenge. Particularly when capacity to seek out and engage with providers is itself limited.
pizza 2y ago
From what I understand about ME/CFS, both post-exertional malaise and dysautonomia are symptoms- seems like stimulant use could make those things go either way

tim333 2y ago

I think it's because it's a hard problem to understand and no one has got anywhere. They run all the tests on people suffering the symptoms but nothing useful pops out. Funnily enough I was watching a vid yesterday on a potential breakthrough in another tricky illness - alzheimer's - where a researcher looking at passing on epigenetic information in nematode worms tried the same experiment in mice, knocking out a particular enzyme, and quite by chance produced alzheimer effects in the mice. Which now looks like it may have hit on the mechanism in humans. So maybe something like that? https://x.com/ydeigin/status/1828961739934695831 https://x.com/ydeigin/status/1828961739934695831