The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

Does anyone have news of the Covid-19 to ME/CFS conversion study that was supposedly launched in 2020?

Also, has the LDN/Mestinon trial been registered?

 

OMF just posted an interview with Dr. Systrom. Very discouraged here: gives the impression that Mestinon & LDN will help, and then doctors everywhere will be able to prescribe this off label. IN the USA many pts have tried the two already, years ago. CFS doctors were offering it to try. Pts did try. Sometimes there was a little bump upward, but it never lasted.

 

Merged thread

"Today Dr. Jonas Bergquist sits down to chat about OMF's first clinical trial, The Life Improvement Trial (LIFT). This clinical treatment trial is a major step towards understanding and treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID more effectively. What is The LIFT? Conducted under the direction of David Systrom, MD, Director of our Harvard Collaboration and Jonas Bergquist, MD, PhD, OMF’s Chief Medical Officer and Director of the Uppsala University Collaboration, The LIFT is a randomized, double-blind placebo trial that will investigate two particular drugs: Pyridostigmine (commonly known as Mestinon) and low-dose naltrexone (LDN) separately and together as a combination. Dr. Bergquist speaks more on trial setup, expected timelines of the trial, why this is an important first step, and more."

transcript available at link

 

are they aware of this trial also called LIFT
https://www.s4me.info/threads/cogni...atic-diseases-lift-2022-bachmair-et-al.28302/

 

I wish they'd stop making up funny names and call it what it is. The Mestinon/LDN trial.

 

Yes, I've developed a tic that's triggered by acronyms, thanks to British psychosomatic research.

 

I might be completely wrong side out today but the acronym and trial title annoy me no end. Very crass for people who are bedbound housebound and severely disabled for decades. Sounds so happy clappy. I spent a year on ldn to no avail.

 

PACE yourself, LIFT is coming.

 

Video interview in Swedish. Bergquist talks about the LIFT study for the first two minutes. Published by RME.

https://www.youtube.com/watch?v=jB7KSdaPh2w

 

I look forward to seeing this paper published. I listened to an interview with Prof Bergquist and he said something interesting: they are not only trying to find out if LDN and Mestinon work for some patients, but also why.

I think that’s exactly what we need, seeing that there are such contradicting reports about their efficacy. Why do some patients get benefits, while others don’t?

I have not tested Mestinon, but I am on LDN since last year. The benefits are not life-changing, but they are there. Less muscle pain. Less fluey feeling. Shorter PEM. Less ”I’m dying/I’m poisoned” feeling. I still have all of these symptoms, and I am still severe and bedbound 95% of the time, but when you are as sick as I am, even 1% alleviation of suffering is something.


I took a break after 6 months on LDN to see if there was any difference and I did feel slightly worse, so I started it again after a month. I am on a low dose, I can only tolerate 1,5 mg. Anything higher and I get really scary side effects.

 

Could some of them be taking LDN and also drinking alcohol?

Naltrexone is used to treat alcoholics - and one purpose of it is to make people taking it very sick if they drink alcohol.

Low Dose Naltrexone (LDN) is given at much lower doses and is used for different purposes but there could be some people who are already sick who feel very ill if they take both alcohol and LDN close together.

 

Naltrexone actually reduces cravings and removes the euphoric effect of intoxication, meaning you no longer want to get drunk.

The drug you're thinking of is the one they gave George Best back in the day...it makes you sick and throw up if you drink. Can't remember the name.

People on naltrexone for alcohol are theoretically able to drink in moderation without wanting to get smashed. it doesnt make them ill in the same way as the other drug.

 

Are you thinking of Antabuse?

 

Short news segment (1 min, audio, in Swedish).

Ny studie ska hjälpa ME-patienter – vill stävja hjärndimma
https://sverigesradio.se/artikel/ny-studie-ska-hjalpa-me-patienter-vill-stavja-hjarndimma

 

The Life Improvement Trial (LIFT) has officially begun!

https://www.omf.ngo/lift-update/

 

Jarred Younger: "The Open Medicine Foundation (OMF) has started a clinical trial of low dose naltrexone (LDN) and pyridostigmine bromide (PB) for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In this video, I discuss the details and my impressions of the study design. More info can be found at the links below.

The ClinicalTrials.gov site: https://clinicaltrials.gov/study/NCT06366724
The OMF signup page: https://www.omf.ngo/studyme/"

https://www.youtube.com/watch?v=1MDh9691lJY

 

I searched for the trial on clinicaltrials.gov today and was unable to find it. I think it would be great if the OMF could upload their trial there so that other researchers, doctors as well as patients are aware of it and such that it becomes easier to track as well as understand which recruitment, outcome measures etc are being used.

Update: I was wrong. Forestglip managed to find it. So kudos to the OMF!

 

It's on there: https://clinicaltrials.gov/study/NCT06366724