Exercise Intolerance in ME/CFS | Dr. David Systrom
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- Опубліковано 24 лип 2024
- David Systrom, MD, Brigham and Women’s Hospital, presents on the use of invasive cardiopulmonary testing (iCPET) to investigate why patients with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) have exercise intolerance, and his use of Mestinon (Pyridostigmine) to improve exercise capacity.
For more information about the Massachusetts ME/CFS & FM Association, visit: www.massmecfs.org/
For more information about the Open Medicine Foundation, visit:
www.omf.ngo/
Massachusetts ME/CFS & FM Association
and Open Medicine Foundation
Fall 2020 Event on Zoom
October 24, 2020
0:00 Introduction to Dr. Systrom
1:21 Goals
3:36 What happens during exercise
4:56 iCPET in action
5:53 Cardiac diagnostic algorithm
7:50 ME/CFS hemodynamic subtypes
11:53 Small fiber neuropathy in ME/CFS
14:56 Mitochondrial dysfunction in ME/CFS
17:41 How Mestinon (Pyridostigmine) works
18:34 Effects of Mestinon in ME/CFS
20:19 Thank you
Thank you to all the doctors and researchers studying this devastating illness!
Thank you. 🙏. It’s just horrible suffering from this illness. The sooner this research data becomes common knowledge for the entire medical profession the better. It will educate and inform medical professionals and help them to finally be helpful understanding and compassionate towards their patients with ME/ CFS. ❤️🌈
Strongly leaning toward naming my first-born “David Systrom”.
😂🎉 I feel the same! Except I’ll prolly never be able to have kids bc of this disease …
😂 I needed this laugh
Crikey, That exercise test would put me in bed with PEM for 3 months. And it would be like having influenza and a severe hangover that entire 3 months.
May God Almighty richly bless and protect you and yours for the work that you're doing GIVING US A VOICE and AUTHENTICATION that's we've sorely been lacking for 20+ years! I'm wondering where I might get a copy of the Peer Review you've submitted for this study, some days, especially after a completely exhaustive episode, I Understand or comprehend best, when reading! It's absolutely confiding at this moment trying to listen to the video and comprehend new terms! And yes, the next thing someone would say is "just wait until you are" but they fail to understand that waiting until full recovery my list that's exhaustively of things To Do would be 4X longer than it already is! Thank you again!
Thank you so much for all your brilliant information. I have POTS/ME-CFS
Great video, thanks for sharing
I’ve been on Metoprolol since 2013, when I was diagnosed with this and Mitochondrial Myopathy at BWH by Dr. Aaron Waxman. I had the pleasure of working with Dr. Systrom while undergoing my ICET. Metoprolol worked until about 2 weeks ago ☹️ All my previous symptoms are coming back, so I’ll be back at BWH sooner rather than later. I’ve already tried Mestinon and Fludrocortisone and those didn’t work, so I’m definitely nervous.
I am one of these patients with confirmed small fiber neuropathy! Not only do I deal with ME/CFS but horrible pain in my hands and feet and POTS. I really hope more effective treatments are found than the triweekly IVIG I've spent the last couple years on.
Do you have hypomobility CFS 26 years pots now ok fybromyalgia the worst bow
@@Truerealism747Very mild hyper mobility but they have cleared me for Ehler-Danlos. The most likely is Sjogren's based on family history.
“We think the blood vessels may be better regulated on Mestinon and the majority of patients report improved symptoms.”
I have a question for Dr Systrom pertaining to the low cardiac output during the exercise test in ME-pts: I'm an ME-pt and I have way too high blood pressure for which I take medication (I am 58 yo). Could it be that my autonomic nerve system tries to compensate for the ME-induced low cardiac output by cranking up the blood pressure? In other words - suppose I was cured entirely for ME, would it be likely that my high blood pressure would become normal as well?
PS: A huge thank you to Dr Systrom for his interest, engagement, and research in ME. We patients are tremendously grateful to all the work that he does to help patients get better.
Yes it would as you would be out of fight flight response
Hi Dr Systrom!
Thank you for this!! I started Mestinona month ago and increased to 60 mgs 3 x’s a day for EI in POTS. It has helped me avoid attacks but I still get really bad headaches lasting 24/48 hours or more. Is this normal?
Why dose of Pyridosigmine differs. In the table it says 234mg but in comments it says 60mg.