Search results

  1. J

    The biology of coronavirus COVID-19 - including research and treatments

    Apparently requires Bluetooth Low Energy v4 tech, which means iPhone 6S or newer or most Android phones built in 2015 or newer should work.
  2. J

    Aripiprazole - Abilify

    Thanks for the update, fingers crossed improvements will be maintained. Naviaux is researching mitochondria and if I understood his position correctly, he thinks most diseases including ME/CFS have their root cause in mitochondrial malfunction, which is nothing much more than a hypothesis at...
  3. J

    Aripiprazole - Abilify

    My uneducated hunch is that it could be more useful to do a trial on something like this than meds like mestinon, which never reach the CNS. It's worth noting that the anecdotal reports of improvements in ME/CFS using Abilify are from a low or very low-dose regimen, which is far lower than...
  4. J

    US: Annual ME/CFS Working Group Meetings from 2020. Stanford/OMF

    +1, last year big parts of the event were live streamed.
  5. J

    A request to those involved in ME research to indicate their position on spinal surgery

    Google will tell you that is not the case, this is not something that the public is largely aware of. I did a Google Trends search for keywords "CCI" and "craniocervical instability", result for the latter in this link. There are two peaks, which maybe coincide with some blog posts of Jen...
  6. J

    A request to those involved in ME research to indicate their position on spinal surgery

    Given that Michael Sharpe already feels the need to go public regularly about his harassment by vexatious ME/CFS patients suffering from hysteria/MUS/somatization, I don't see what difference it does make :rolleyes:. I agree with @rvallee, I think this thing is a bit overblown. You cannot really...
  7. J

    Kynurenine Trial in ME/CFS - Bergquist

    Nice. I was under the impression that Stanford would conduct the kynurenine trial and that Berquist et al. would be responsible for the pyridostigmine one, but anyway, I feel more excited about this one. At least this is something new I haven't seen previously attempted unlike with Mestinon.
  8. J

    Michael VanElzakker

    There are lots of anecdotal reports where people with ME/CFS describe how they start to feel much better when starting treatment with an immunosuppressant like hydrocortisone only to regress back later or even end up worse than baseline. On the other hand, other types of treatments also often...
  9. J

    Pathogens associated with triggering ME/CFS - discussion thread

    Lots of the things are obviously not yet known and I agree that several factors could be necessary for triggering something like ME/CFS. At least for the cases that are triggered by an (acute) infection, it still strikes me that the explanation that requires the least amount of assumptions...
  10. J

    Well known, famous people reported to have Lyme Disease.

    Almost certainly a lot of people are misdiagnosed with Lyme due to inaccurate tests, and vice versa. The problem isn't solved even by having accurate tests though, as many highly rated immunologists think having acute Lyme may trigger a real post-infectious condition, where the infection is no...
  11. J

    Therapeutic Antibody Targeting of Indoleamine-2,3-Dioxygenase (IDO2) Inhibits Autoimmune Arthritis, Merlo et al 2017

    The entire metabolic trap hypothesis by Robert Phair builds on the idea of damaging IDO2 mutations being a necessary prerequisite to the disease. According to this hypothesis, IDO2 is actually not working and due the peculiar enzyme kinetics of IDO1, patients' cells may get "stuck" with too high...
  12. J

    The biology of coronavirus COVID-19 - including research and treatments

    Could be that the virus is still detected but perhaps not transmissible. There were also some reports that the virus stayed on various surfaces for several weeks, but now they say it doesn't seem likely to be transmissible from surfaces for very long. I find it quite frustrating to read all...
  13. J

    POTS - definition, diagnosis and symptoms

    Yep, POTS is typically defined as an increase of heartbeat of over 30 beats per minute when moving from lying to standing position. I was met with complete ignorance from hospital doctors when I suffered from debilitating POTS symptoms a couple of years ago. Having POTS alone can cause severe...
  14. J

    3 day fasting to reset immune system

    I trialed fasting several years ago. The first 24 hours went ok, after that I started getting really weak and heart palpitations, which forced me to stop around the 35 hour mark. It doesn't seem that healthy people get huge issues from fasting for a day, so it seems ME/CFS makes fasting harder...
  15. J

    Treatment with Disulfiram (Antabuse) seems to help

    Thanks for the update, I got the impression too that disulfiram tolerance is quite poor and the effect is a hit or miss based on the experiences of Lyme patients reported in Facebook groups.
  16. J

    Treatment with Disulfiram (Antabuse) seems to help

    @Dechi Just wondering how you are doing, are you still on disulfiram?
  17. J

    A randomised, placebo-controlled, double-blinded trial of duloxetine in the treatment of general fatigue in CFS, 2014, Arnold et al. Cymbalta

    Cymbalta is commonly prescribed for management of neuropathic pain, so it's not surprising to me that it would reduce "pain" in ME/CFS and with less pain one might be able to sleep better, hence less fatigue. Probably little useful to treat the core pathology in ME/CFS though. And yes, Cymbalta...
  18. J

    Low-dose naltrexone as a treatment for chronic fatigue syndrome, 2020, Bolton, Chapman, Van Marwijk

    According to the recent paper of Polo et al., 73% reported improvement. How much of this is placebo we don't know, but the patients in Finland didn't in general discontinue the drug. Tolerance was good and at least the subjects perceived that LDN offered them some benefits.
  19. J

    Trial of CT38 for ME/CFS by Cortene Inc.: big claims being made...

    Er, aren't all drug companies trying to make money or are there companies offering their products for free? Besides, it is not a win-win at all if phase 2 fails. Developing drugs isn't exactly a guaranteed lucrative business as the risks involved are significant, for example Pfizer recently...
  20. J

    Reflections on advocacy

    I'm pretty sure there are already drugs that are up to the task, which is the annoying part to me. Ron Davis is looking for a cure and even he has resorted to studying existing drugs on the market (or at least already developed ones), since new drug development takes decades. So if there are...
Back
Top Bottom