Incase this helps anyone else - just want to say that Mestinon is the only drug outside of painkillers that have helped my ME (I’m on the severe end of the spectrum but consider myself “low end” severe if that makes sense, home-bound outside of occasional Dr appts and largely bed-bound but able to care for myself and as you can see, able to read and type when I’m within my 2-3 hour daily energy window). I had debilitating vertigo prior along with what felt like g-force to my head when I’d ride in a car, couldn’t be on anything that swings like a hammock etc. Terrible chronic nausea. If this sounds like you, I’d recommend Mestinon if it’s something you’re able to access. Like many of you, my doctors don’t know much about ME/CFS sadly and they’re not willing to trial me on most of the off-label meds that other doctors use as part of their treatment protocols with the exception of Mestinon - both my family doctor and my neurologist were totally fine prescribing Mestinon, I guess because it’s relatively benign in comparison to some of the other ME “treatments” like long term use of anti-virals (eg Valcyte). Note that it took me 4x tries to get on Mestinon as the gastro side effects were so brutal but it got better after several weeks. If you’re homebound it’s actually easier but if you’re working, I’d advise starting this when you can take a week off of work. Good luck my fellow warriors 💙
propranolol seems to help in some cases, an alternative to painkillers. can't really explain how but it affects heart rate and size of blood vessels around the body, possibly compensating for small fiber neuropathy / hypoxia / preload failure. It makes it easier to rest when I feel uncomfortable due to PEM.
@@vkhan5431 sorry for the late reply! I’ll put this as nicely as I can and say urgency. I basically had to be by the washroom, couldn’t leave the house (which I wasn’t able to anyway but for those of you who are more moderate and still able to work part-time or whatever, just be aware that you may have to plan to be home when you first start this). I’m sure not everyone will react the same but it’s a pretty common side effect. Everyone I talked to about it prior to starting said the same thing - that it took several weeks to get over the initial gastrointestinal side effects (felt a bit like food poisoning at first) and then several more weeks on top of that to feel really settled and ok to stick with it long term. After several years on Mestinon, it still causes occasional gastro symptoms but it’s nothing too bad. And I sure do notice when I forget to take it - vertigo starts up again within 1/2 day of missing a dose.
I had terrible intolerance issues with Mestinon. So did a friend and also others on forums. So to those that try it best take tiny doses slowly increasing because if your body finds a drug that makes you intolerant, it’s very difficult to make the body forget that reaction. Now if I take a mestinon dose as little as 2 grains of salt, that would be enough to make me bedridden and extreme ill. Yet the first 48 hours I took it, that never happened, meaning initially I wasn’t intolerant.
I’m interested to see if Mestinon works long term. Many Myasthenia Gravis patients need to keep increasing it or go on breaks from time to time as the body becomes used to it. I’m at that stage now. At first I found noticeable improvement and again with each increase. I’ve been on 60mg (three times per day) for about a year now and it’s nowhere near as effective. I don’t know if I should increase or stop for a while. I know I feel worse when I’m not on it and not keen to stop it as I recently went from moderate to severe ME. I’m very grateful for Dr Systrom and his research team. Does he plan to study long term effect of Mestinon and if the effectiveness fades after 6 to 12 months?
But Mestinon its not a miracle drug. At least for Myself, it helped but just for a while- and a little- so i could do more and my POTS improved , but still experiencing all the ME symptoms.
Yeah and made me horribly unwell. I only wish I started on tiny, tiny doses and eased on to it. But it’s too late now my body remembers it every time I tried to start again, making my sooooo sick 🤢
Just a friendly reminder that as per ME/CFS Alert episode 105, no ME/CFS researchers (or any other type of researchers) have ever looked into the actual incident that baffled the CDC and Dr Gary Holmes into creating "the Chronic Fatigue Syndrome". None. Zero. Not a single one. (That's a pretty bizarre way to try and solve a syndrome)
David Tuller looked into the PACE Trial and wrote a book on it. Called ‘Trial By Error’ I know not the same, but he’s been very political on exposing the lying criminals involved in trying to keep this a psychological disorder
@@RHarris-007 Not at all. David Tuller fell into the trap set by psychs. By his constant repetition that psychs did a poor fatigue study, he actually helped cement it that this is what the issue is all about. "Fatigue" When neither ME or CFS were coined for fatigue. Both were to address immune evidence of viral reactivation.
Incase this helps anyone else - just want to say that Mestinon is the only drug outside of painkillers that have helped my ME (I’m on the severe end of the spectrum but consider myself “low end” severe if that makes sense, home-bound outside of occasional Dr appts and largely bed-bound but able to care for myself and as you can see, able to read and type when I’m within my 2-3 hour daily energy window).
I had debilitating vertigo prior along with what felt like g-force to my head when I’d ride in a car, couldn’t be on anything that swings like a hammock etc. Terrible chronic nausea. If this sounds like you, I’d recommend Mestinon if it’s something you’re able to access.
Like many of you, my doctors don’t know much about ME/CFS sadly and they’re not willing to trial me on most of the off-label meds that other doctors use as part of their treatment protocols with the exception of Mestinon - both my family doctor and my neurologist were totally fine prescribing Mestinon, I guess because it’s relatively benign in comparison to some of the other ME “treatments” like long term use of anti-virals (eg Valcyte).
Note that it took me 4x tries to get on Mestinon as the gastro side effects were so brutal but it got better after several weeks. If you’re homebound it’s actually easier but if you’re working, I’d advise starting this when you can take a week off of work. Good luck my fellow warriors 💙
Hi, what GI side effects did you have?
propranolol seems to help in some cases, an alternative to painkillers. can't really explain how but it affects heart rate and size of blood vessels around the body, possibly compensating for small fiber neuropathy / hypoxia / preload failure. It makes it easier to rest when I feel uncomfortable due to PEM.
@@vkhan5431 sorry for the late reply! I’ll put this as nicely as I can and say urgency. I basically had to be by the washroom, couldn’t leave the house (which I wasn’t able to anyway but for those of you who are more moderate and still able to work part-time or whatever, just be aware that you may have to plan to be home when you first start this).
I’m sure not everyone will react the same but it’s a pretty common side effect. Everyone I talked to about it prior to starting said the same thing - that it took several weeks to get over the initial gastrointestinal side effects (felt a bit like food poisoning at first) and then several more weeks on top of that to feel really settled and ok to stick with it long term.
After several years on Mestinon, it still causes occasional gastro symptoms but it’s nothing too bad. And I sure do notice when I forget to take it - vertigo starts up again within 1/2 day of missing a dose.
Thank you for the suggestion.
I had terrible intolerance issues with Mestinon. So did a friend and also others on forums. So to those that try it best take tiny doses slowly increasing because if your body finds a drug that makes you intolerant, it’s very difficult to make the body forget that reaction. Now if I take a mestinon dose as little as 2 grains of salt, that would be enough to make me bedridden and extreme ill. Yet the first 48 hours I took it, that never happened, meaning initially I wasn’t intolerant.
Great interview, thanks for sharing
Really interesting interview! Good to hear of new people getting involved in MECFS research. I look forward to hearing about the results!
Rosita, congratulations, proud of you
I’m interested to see if Mestinon works long term. Many Myasthenia Gravis patients need to keep increasing it or go on breaks from time to time as the body becomes used to it. I’m at that stage now. At first I found noticeable improvement and again with each increase. I’ve been on 60mg (three times per day) for about a year now and it’s nowhere near as effective. I don’t know if I should increase or stop for a while. I know I feel worse when I’m not on it and not keen to stop it as I recently went from moderate to severe ME. I’m very grateful for Dr Systrom and his research team. Does he plan to study long term effect of Mestinon and if the effectiveness fades after 6 to 12 months?
Mi Rouchyyy que orgullo!!!
Muchas felicidades Rosita preciosa, eres un orgullo para la familia, nuestra región y país.
Maestraaa
But Mestinon its not a miracle drug. At least for Myself, it helped but just for a while- and a little- so i could do more and my POTS improved , but still experiencing all the ME symptoms.
Yeah and made me horribly unwell. I only wish I started on tiny, tiny doses and eased on to it. But it’s too late now my body remembers it every time I tried to start again, making my sooooo sick 🤢
Actual pain pills would be nice. My Drs. Corporation will no longer allow it.
Just a friendly reminder that as per ME/CFS Alert episode 105, no ME/CFS researchers (or any other type of researchers) have ever looked into the actual incident that baffled the CDC and Dr Gary Holmes into creating "the Chronic Fatigue Syndrome".
None. Zero. Not a single one.
(That's a pretty bizarre way to try and solve a syndrome)
?
David Tuller looked into the PACE Trial and wrote a book on it. Called ‘Trial By Error’
I know not the same, but he’s been very political on exposing the lying criminals involved in trying to keep this a psychological disorder
@@RHarris-007 Not at all. David Tuller fell into the trap set by psychs. By his constant repetition that psychs did a poor fatigue study, he actually helped cement it that this is what the issue is all about. "Fatigue"
When neither ME or CFS were coined for fatigue. Both were to address immune evidence of viral reactivation.