It's a sign of just how horribly we've been dismissed as patients that I never even imagined any such thing as a doctor specializing in PEM, this bizarre phenomenon that dictates my entire existence, and that of every other meep. And yet every other serious illness has many people who specialize in just one aspect. In my opinion, PEM is the central feature of me/cfs. If not for PEM, we could exercise, do physical therapy, and we would most likely get better. Instead, we get sicker from trying to help ourselves. And most of our physicians don't even know what it is.
Thank you so much ! It's horrible to say that I've suffered with this for the past 30 years, but it's true. I am happy though to see that my strange medical complaint over decades is finally being validated by recent research. I am also amazed to see that my intuition / suspicion that this condition is a circulatory issue of some kind (in addition to being some kind of a post viral syndrome) is being confirmed. Following moderate exertion (especially at the wrong times), I'd always end up needing to take warmth in a sleeping bag for long periods. On other occasions, the opposite occurred- I'd feel very overheated and could not cool off (usually during periods I was less sick). I would love to participate in this clinical research. Over the past 30 years, the only progress we've made re treatment is symptomatic treatments and lifestyle modification recommendations. At least the NIM woke up eventually and dropped their ludicrous recommendations (i.e., CBT & graded exercise), which was ineffective and, I suspect, harmful to many fellow sufferers.
Klaus Wirth's Mitodicure pill is aimed at correcting this mitochondrial dysfunction but he needs funding to get the world's first ME/CFS pill to the market.
A very similar study plan was presented by OMF in an November 2022 email. Is this the same study? If not, please can you share where the results of the previous study can be found? Ref OMF Website News Section Nov 15 2022 : "Post Exertional Malaise (PEM) Study:Dr. David Systrom Aims to Fill in Gaps"
I've recently discovered that the amytriptiline the I took for a chronic cough is a potent anticholinergic. Couple this with semi regular Advil PM (diphenhydramine) intake and I was doubling up on anticholinergics. I came down with brutal neurologic symptoms 7 weeks after a covid infection and was recently diagnosed with POTS, but I'm unable to find a specialist who can differentiate between the subtypes. My HRV also nose dived to 28ms avg at night indicating increased sympathetic activity which I acutely feel as well. The fact that pyridostigmine is a front line treatment has me really paying attention. Is it possible I depleted acetylcholine via those drugs and ended up here after the additional covid insult?
Yes I think so, not the root cause maybe but I was on anticholinergic medicine voor almost 2 yrs and when I came off of the medication I was feeling so so much better. Less pem and cognitive so much better. You can also take choline supplement. Citicoline can elevate your choline levels.
Thanks for this detailed explanation. Helpful for understanding. Wishing the dr. continued progress in this area.
Fascinating, thank you so much! Means the world to us 🌎💙
It's a sign of just how horribly we've been dismissed as patients that I never even imagined any such thing as a doctor specializing in PEM, this bizarre phenomenon that dictates my entire existence, and that of every other meep. And yet every other serious illness has many people who specialize in just one aspect. In my opinion, PEM is the central feature of me/cfs. If not for PEM, we could exercise, do physical therapy, and we would most likely get better. Instead, we get sicker from trying to help ourselves. And most of our physicians don't even know what it is.
Go Dr. Systrom, go!! 👏
Thank you so much !
It's horrible to say that I've suffered with this for the past 30 years, but it's true. I am happy though to see that my strange medical complaint over decades is finally being validated by recent research. I am also amazed to see that my intuition / suspicion that this condition is a circulatory issue of some kind (in addition to being some kind of a post viral syndrome) is being confirmed. Following moderate exertion (especially at the wrong times), I'd always end up needing to take warmth in a sleeping bag for long periods. On other occasions, the opposite occurred- I'd feel very overheated and could not cool off (usually during periods I was less sick).
I would love to participate in this clinical research. Over the past 30 years, the only progress we've made re treatment is symptomatic treatments and lifestyle modification recommendations. At least the NIM woke up eventually and dropped their ludicrous recommendations (i.e., CBT & graded exercise), which was ineffective and, I suspect, harmful to many fellow sufferers.
i did a muscle biopsy for a scientific study about cfs last year at the AMC in the netherlands. In january the results are out. 2025
Thank you
Klaus Wirth's Mitodicure pill is aimed at correcting this mitochondrial dysfunction but he needs funding to get the world's first ME/CFS pill to the market.
Thank you, but could you PLEASE also take biopsies of the arm muscles in your study?
💯 for me they are most affected.
A very similar study plan was presented by OMF in an November 2022 email. Is this the same study? If not, please can you share where the results of the previous study can be found?
Ref OMF Website News Section Nov 15 2022 : "Post Exertional Malaise (PEM) Study:Dr. David Systrom Aims to Fill in Gaps"
Please make PayPal available for donations guys
I've recently discovered that the amytriptiline the I took for a chronic cough is a potent anticholinergic. Couple this with semi regular Advil PM (diphenhydramine) intake and I was doubling up on anticholinergics. I came down with brutal neurologic symptoms 7 weeks after a covid infection and was recently diagnosed with POTS, but I'm unable to find a specialist who can differentiate between the subtypes. My HRV also nose dived to 28ms avg at night indicating increased sympathetic activity which I acutely feel as well. The fact that pyridostigmine is a front line treatment has me really paying attention. Is it possible I depleted acetylcholine via those drugs and ended up here after the additional covid insult?
Yes I think so, not the root cause maybe but I was on anticholinergic medicine voor almost 2 yrs and when I came off of the medication I was feeling so so much better. Less pem and cognitive so much better. You can also take choline supplement. Citicoline can elevate your choline levels.
Nothing has changed, we are sicker than ever before, and nothing, literally nothing has helped patients.