An Update on the Mestinon Clinical Trial

Ben H

OMF Volunteer Correspondent
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1,131
Location
U.K.
Hi guys,

An update on the Mestinon trial:

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From the desk of Ronald G. Tompkins, MD, ScD
Co-Director, The Harvard ME/CFS Collaboration


Mestinon Trial Update

In May, 2020, Open Medicine Foundation (OMF) announced the Mestinon Clinical Trial for ME / CFS, conducted at the Brigham & Women’s Hospital by Dr. David Systrom in association with the Harvard ME / CFS Collaboration at the Harvard Affiliated Hospitals.

Background

This study was started after Dr. Systrom observed that some people with ME / CFS have what is known as Preload Failure (PLF).
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In this instance, Preload Failure is thought to come from an imbalance in the autonomic nervous system and results in reduced filling of the heart during exertion, and could be associated with postural orthostatic tachycardia syndrome (POTS) and/or post-exertion malaise (PEM).

Prior studies have shown symptomatic improvement in the general population with PLF after treatment with Mestinon.

Update

Dr. Systrom and his research team are now conducting a clinical trial on the therapeutic effects of Mestinon:
"The Exercise Response to Pharmacologic Cholinergic Stimulation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.”

To understand the effects of Mestinon, Dr. Systrom utilizes an invasive cardiopulmonary exercise test (iCPET), which measures the blood flow, vascular pressures, and ventilation and gas exchange in the lungs and skeletal muscles during exercise.

In this study, patients perform an iCPET, and take either a 60 mg tablet of Mestinon or placebo, and perform a second iCPET assessment 50 minutes later to assess for any improvement of various exercise parameters.

By investigating the link between the autonomic nervous system and the dynamics of blood flow in people with ME/CFS, we are hopeful that this will lead to new targeted treatments, and a deeper understanding of ME/CFS.
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If you are able, please consider contributing to our effort to
uncover research-based answers.

Help us improve the quality of life for all sufferers of ME/CFS and other
chronic complex diseases, such as Post Treatment Lyme Disease Syndrome
and Fibromyalgia.




*Disclaimer*
Each CRC arranges its protocols to gather samples, conduct research,
and seek participants if needed. CRCs do not typically solicit participation
or respond to inquiries from the general public.


OMF is not directly involved in the participant selection process; our role is to ensure
that each CRC has the financial resources required to conduct their research.
Thank you for your interest!



Thanks,

B
 

*GG*

senior member
Messages
6,397
Location
Concord, NH
So no results or did my tired brain miss it in the write up above?

I saw him talk in Hanover, NH on this subject. So I asked my specialist to prescribe me this drug, he did. I tapered up to the Maximum dosage. I ended up developing Bell's Palsy, thankfully that resolved (with further medical treatments).

Another drug that didn't work for me! Perhaps I will get my life back after being ill for 17 years, if Not I can live with my Quality of life at this time.

GG
 

Rebeccare

Moose Enthusiast
Messages
9,071
Location
Massachusetts
In this study, patients perform an iCPET, and take either a 60 mg tablet of Mestinon or placebo, and perform a second iCPET assessment 50 minutes later to assess for any improvement of various exercise parameters.
I find the way they're doing this study pretty interesting, since usually a person with ME/CFS has already done an exercise test is pretty wiped out afterward. I can understand why they designed it this way--people just aren't going to come in twice to do an iCPET: one without Mestinon and one with. But still, I'll be interested to see what the results are.

Another drug that didn't work for me!
Me neither! It seems to work very well for some, but doesn't have much of a positive effect on others. I was glad to get off it!
 
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ChookityPop

Senior Member
Messages
605
I have serious trouble with my blood vessels. Ive found that compression tights etc does help me quite a bit but not perfect ofc. I want to try mestinon so bad but my dr wont give it to me since he risks losing his license. Is there anywhere on the internet I can get this? I will ask in some other threads too.
 

*GG*

senior member
Messages
6,397
Location
Concord, NH
I have serious trouble with my blood vessels. Ive found that compression tights etc does help me quite a bit but not perfect ofc. I want to try mestinon so bad but my dr wont give it to me since he risks losing his license. Is there anywhere on the internet I can get this? I will ask in some other threads too.

What country you in?

GG
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I have serious trouble with my blood vessels. Ive found that compression tights etc does help me quite a bit but not perfect ofc. I want to try mestinon so bad but my dr wont give it to me since he risks losing his license. Is there anywhere on the internet I can get this? I will ask in some other threads too.
Look into Huperzine A. It has has similar action to mestinon.
 

ChookityPop

Senior Member
Messages
605
I hope they find out why it works well for some and is pure hell for others with ME.
That would be a very welcome finding and an advance in ME research..
How is it pure hell for some? I started two days ago and I struggle with dizziness. But I actually began to feel more and more dizzy the days prior. I have POTS
 

LaurelW

Senior Member
Messages
653
Location
Utah
I've been using it for a few months. I was taking two or three doses a day, and found that there was a magic number where it worked and didn't cause side effects. Any time I would go above that dose I had queasiness, nausea and dizziness. When I went back to a lower dose, it took awhile for those symptoms to subside. I even had to go completely off the drug for a few weeks to get back to normal. (They usually occurred when the drug wore off at the end of the day). Finally, my doctor put me on the extended release version. I cut that pill in half and take it once in the morning. If I try to take the whole pill, the side effects are back. It takes a lot of experimenting to get the right dosing schedule and type of drug, but I think it's worth it. It seems to help me have less PEM symptoms and I can stay upright longer.
 

Rebeccare

Moose Enthusiast
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9,071
Location
Massachusetts
It takes a lot of experimenting to get the right dosing schedule and type of drug, but I think it's worth it. It seems to help me have less PEM symptoms and I can stay upright longer.
That's wonderful!

I cut that pill in half and take it once in the morning. If I try to take the whole pill, the side effects are back.
Have you told your doctor that you're cutting it in half? In general cutting or crushing extended release tablets isn't suggested, because that can result in you receiving the full dose (or, in this case, the half dose) all at once instead of having it released slowly into your system. It seems to be working for you, and I think that the dose probably is low enough that you're not going to overdose, but it still might be a good idea to talk it over with your doctor.
 

LaurelW

Senior Member
Messages
653
Location
Utah
Actually, Rebecca, my doctor is the one who told me to cut it in half. He says that what you said is usually the case, but for some reason, it works fine with the pyridostigmine ER.
 
Messages
2
I am on Mestinon, 60mg 5 times a day... first neurologist prescribed it when she thought I had Maysthenia Gravis, and it helped my fatigue a lot... then after One of my "psychogenic seizures", it was decided to take it away. another neurologist prescribed it again, about a year later, and for me the difference between taking Mestinon or not became clear. When I didn’t take Mestinon, when I crash, after overdoing things, the crash would last a day or 2.... with Mestinon, the crash lasts a few hours
 

helios

Senior Member
Messages
136
Location
Brisbane
I am on Mestinon, 60mg 5 times a day... first neurologist prescribed it when she thought I had Maysthenia Gravis, and it helped my fatigue a lot... then after One of my "psychogenic seizures", it was decided to take it away. another neurologist prescribed it again, about a year later, and for me the difference between taking Mestinon or not became clear. When I didn’t take Mestinon, when I crash, after overdoing things, the crash would last a day or 2.... with Mestinon, the crash lasts a few hours
So 5 tablets a day. Why would a neurologist prescribe when you don't have MG?
I get the logic in experimenting with it with CFS patients but typically neurologists are not exactly open minded when it comes to that condition. I was prescribed it by a doctor who wanted to try and boost my acetylcholine levels in my brain. I think I was put in 2 tabs a day and never really noticed any benefit. Some time later I read up on it more and discovered it does not cross the BBB all that well so it was not going to work the way he hoped and probably why I didnt feel any different cognitively. I experimented a couple of times with it by taking higher doses I remember having some good (energy, confidence) days on it except for the side effects which were like bad day of hayfever.
 
Messages
27
Hi, my Huperzine-A caps have 225µg active compound each. How many caps do I have to take per day to equate the Mestinon treatment?
 
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