OMF to launch clinical trials on Mestinon & Kynurenine, post-COVID19 study

cassava7

cassava7

Senior Member (Voting Rights)
From their May Momentum 2020 newsletter & https://www.omf.ngo/maymomentum/
We are announcing THREE major research projects throughout May!
[...]
OMF is funding two exciting pilot treatment trials, Mestinon and Kynurenine. The outcome of this research will be to determine what biological factors might be relevant to their success or failure at treating the symptoms of people diagnosed with ME/CFS. Ultimately the data generated will help to better understand the pathogenesis of ME/CFS towards finding effective treatments.

In a rapid response to the recent COVID-19 pandemic, Open Medicine Foundation has launched a study to track patients with COVID-19 that have been discharged from the ICU, with the expectation that some will develop ME/CFS. The tracking of these participants will involve sample collection for testing of biological factors, continuous health tracking via wearables and symptom data collection for many separate timepoints over the course of two years.

This presents an unprecedented opportunity to study the biological factors that differentiate why some people develop ME/CFS following infection and why some people recover completely.
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Post-COVID19 study: https://www.omf.ngo/2020/04/26/tracking-covid-19-patients/
Mestinon trial: https://www.omf.ngo/2020/04/26/the-mestinon-clinical-trial-for-me-cfs/ & https://clinicaltrials.gov/ct2/show/record/NCT03674541
Kynurenine trial: https://www.omf.ngo/2020/04/26/kynurenine-clinical-trial-for-me-cfs/

The Mestinon trial is David Systrom's at Brigham's, the kynurenine one will be at Uppsala University under the supervision of Dr Bergquist.
 
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In a rapid response to the recent COVID-19 pandemic, Open Medicine Foundation has launched a study to track patients with COVID-19 that have been discharged from the ICU, with the expectation that some will develop ME/CFS. The tracking of these participants will involve sample collection for testing of biological factors, continuous health tracking via wearables and symptom data collection for many separate timepoints over the course of two years.
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Excellent idea. If many people develop ME/CFS after this epidemic, it will be much harder for the BPS lobby to claim it's all due to false illness beliefs.
 
Excellent idea. If many people develop ME/CFS after this epidemic, it will be much harder for the BPS lobby to claim it's all due to false illness beliefs.
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I don't think they would have a problem claiming that the stress of the pandemic explains development of ME/CFS. It would be very biopsychosocial.
 
So many patients do not tolerate Mestinon. And the drug did not really help. This drug has been tried on patients decades ago by many CFS doctors in the USA.

PS. Is there anyone here who has been helped by this drug?
 
Perrier said:
So many patients do not tolerate Mestinon. And the drug did not really help. This drug has been tried on patients decades ago by many CFS doctors in the USA.

PS. Is there anyone here who has been helped by this drug?
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I think some researchers looking at CPET (are they connected with OMF?) have been interested in this drug for a while. I forget their names. But I think they’ve done some sort of work with this drug already and it did seem to help some people with their CPET results (and V02 max?)

Edit: it’s Systrom. It’s discussed from this post onwards, https://www.s4me.info/threads/what-...ike-to-see-happening.10654/page-2#post-189795
 
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Mestinon seem like a big waste of time and money to me. So many ppl and doctors tried Mestinon over the years without big success. I tried it to. Besides playing with my blood pressure and making me more uncomfortable it didnt help. Kinda feel bad moment to see ME resources wasted on this again and again.
 
Badpack said:
Mestinon seem like a big waste of time and money to me. So many ppl and doctors tried Mestinon over the years without big success. I tried it to. Besides playing with my blood pressure and making me more uncomfortable it didnt help. Kinda feel bad moment to see ME resources wasted on this again and again.
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Dear Badpack
I agree entirely. Our family member tried it in 2008, and for a long time, gave it a good shot. It was awful, in terms of side effects, and in terms of not helping whatsoever. Many CFS doctors during the 2000s tried it on their patients. When I heard that Dr Systrom was interested in this a year or two ago, I thought, oh dear...waste of resources again. I wondered too, whether or not he had contacted CFS doctors who used this on their patients. I would dearly like to hear from someone whom this drug helped. Is there anyone on this site?

The kynunerine testing is really interesting, however. Can't wait to hear the results.
 
I actually loved Mestinon. It gave me back some of my brainpower but I became intolerant to all meds and had to stop.

That being said. It wasn't very effective for my OI but I was definitely better on it than what I'm now.

Anyways Systrom and VanElzakker are quite into this drug. Let's see!

I'm not sure about the kynurenine. Unless there are some new leads?
 
Grigor said:
I actually loved Mestinon. It gave me back some of my brainpower but I became intolerant to all meds and had to stop.

That being said. It wasn't very effective for my OI but I was definitely better on it than what I'm now.

Anyways Systrom and VanElzakker are quite into this drug. Let's see!

I'm not sure about the kynurenine. Unless there are some new leads?
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Thanks Grigor for pointing out it helped with brainpower. Thanks, glad to hear your experience. You, know, I can't figure out why ME folks are so intolerant to all meds. The same experience in our family.

The two doctors may be 'into this drug' but if doesn't help because it is not tolerated, I'm not sure what the use is. The thing is the drug doesn't get at the core problem of this illness, whatever that is. From the 5 patients I knew on Mestinon, none of the fatigue, weakenss, OI, or PEM, or anything disappeared. All 5 quit the drug.
 
Perrier said:
Thanks Grigor for pointing out it helped with brainpower. Thanks, glad to hear your experience. You, know, I can't figure out why ME folks are so intolerant to all meds. The same experience in our family.

The two doctors may be 'into this drug' but if doesn't help because it is not tolerated, I'm not sure what the use is. The thing is the drug doesn't get at the core problem of this illness, whatever that is. From the 5 patients I knew on Mestinon, none of the fatigue, weakenss, OI, or PEM, or anything disappeared. All 5 quit the drug.
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True the effect on OI wasn't massive.

Forgot to mention that it also reduced my PEM significantly from 5 days to maybe 2 or sometimes just 1 day.
I miss those days...

Also the intolerance isn't solely due Mestinon perse. I'm intolerant to everything. Including smallest amounts of foods (histamines, salicylates etc) , crumbs of supplements with or without fillers etc.
 
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Dr Systrom has a well-detailed hypothesis on the effect of Mestinon in ME/CFS: http://endmecfs.mgh.harvard.edu/heartpreload/ (see "Read more"). The clinical trial, in which participants are given a single dose of Mestinon and then do an invasive CPET, should allow to test for this specific hypothesis?

Null results are important too for getting clues about the pathophysiology of ME, if the hypothesis is precise enough to allow to understand why the trial failed. But, hah, they do cost money.
 
Jaybee00 said:
Thanks for posting. First I’ve heard of the Kyn trial. Wonder what the dosage is/is it administered orally or via IV?
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The only clinical trial on kynurenine I could find is this small pilot study, "The Effect of Intravenous L-kynurenine (LKYN) on Cerebral Hemodynamics in Healthy Volunteers":
Aim: To investigate the physiological effect of L-Kynurenine after intravenous administration to healthy volunteers.

Hypothesis: L-kynurenine induces vasodilation in the cerebral vessels and trigger headache in healthy individuals.

Methods: 6 healthy volunteers will receive intravenous infusion of L-kynurenine using the following doses 50 microgram/kg, 100 microgram/kg, 150 microgram/kg, 300 microgram/kg, 500 microgram/kg, 1 mg/kg and 5 mg/kg over 20 min on 7 different days with at least 1 day in between. Before and after infusion (at 20, 40, 60, 80 and 100 min) we will record vital signs, circumferences of middle cerebral artery, superficial temporalis artery and headache intensity and characteristics.

The subjects will then have a questionnaire about headache for the following 24 hours.
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Oddly enough, the hypothesis is that kynurenine triggers headaches, while OMF aim to reduce their intensity or frequence (bolding mine):
The main study endpoints will be the effects of supplemental Kynurenine to improve cognitive impairment (“brain fog”), memory and headache.
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https://www.omf.ngo/2020/04/26/kynurenine-clinical-trial-for-me-cfs/
 
Perrier said:
So many patients do not tolerate Mestinon. And the drug did not really help. This drug has been tried on patients decades ago by many CFS doctors in the USA.

PS. Is there anyone here who has been helped by this drug?
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I know someone who is severe and bedbound already taking Mestinon, but
Perrier said:
Thanks Grigor for pointing out it helped with brainpower. Thanks, glad to hear your experience. You, know, I can't figure out why ME folks are so intolerant to all meds. The same experience in our family.

The two doctors may be 'into this drug' but if doesn't help because it is not tolerated, I'm not sure what the use is. The thing is the drug doesn't get at the core problem of this illness, whatever that is. From the 5 patients I knew on Mestinon, none of the fatigue, weakenss, OI, or PEM, or anything disappeared. All 5 quit the drug.
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I am very disappointed that they are bothering to trial this drug, absolute waste of time and money.
I know a severe bedbound patient taking it with very little improvement at all.
 
cassava7 said:
Oddly enough, the hypothesis is that kynurenine triggers headaches, while OMF aim to reduce their intensity or frequence (bolding mine):
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We should all remember treatments can have positive as well as negative outcomes. Will OMF explain the proposed benefit of increasing kynurenine, and what the risks are? We've yet to see ANY convincing data for the metabolic trap, two years after work first started!!!

There seems to be a lot of articles about the relationship between the kynurenine and Schizophrenia. Anyone have any knowledge in this area? A bit concerning.
https://www.google.com/search?client=firefox-b-1-d&q=kynurenine+schizophrenia
 
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