Open Medicine Foundation (OMF)

[Murph]

https://www.omf.ngo/melbourne-collaboration-award/

We are very pleased to share that Dr. Christopher Armstrong and his team at OMF’s Melbourne ME/CFS Collaboration have been awarded nearly $1 million ($999,977.50) through the Australian government’s Medical Research Future Fund (MRFF) for the project Energy inefficiency in Long COVID and ME/CFS.

These funds were specifically put forth by the government for research associated with COVID-19, including a special designation for cases of ME/CFS with a known infectious trigger.

Project Summary​

This study investigates why some people do not return back to good health and instead remain severely ill, fatigued, unable to return to work or school due to a multitude of life-altering symptoms long after COVID-19 or other infections. Known as Long COVID and ME/CFS, these conditions are difficult to diagnose and treat.

The research examines how infection can affect energy production and the body’s response to physical stress by measuring blood flow, metabolism, and cellular health. Wearable devices and low-burden, at-home sampling will track recovery after exertion. The aim is to identify the biological factors that help explain both the wide variation in patient experience and the symptoms these conditions share.

Led by Dr. Chris Armstrong, the project brings together Australian and international collaborators across the University of Melbourne, La Trobe University, Monash University, Baker Heart and Diabetes Institute, and global partners including PrecisionLife.

Congrats to the University of Melbourne researchers ... and if you guys would like a further $22.50 to round that peculiar sum up, so nobody needs to say almost a million , or nearly one million, I will gladly donate!!

 

[forestglip]

Health Rising: 'Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For?'

Article includes an interview with OMF's Danielle Meadows.

 

[Jaybee00]

https://www.omf.ngo/introducing-ctn-lite/

Today, we are excited to share a significant step forward: the launch of CTN Lite, a new initiative that will bring us closer than ever to delivering real treatment options for ME/CFS—faster, smarter, and with patients at the center of every decision. We call it CTN Lite not because it is a lesser version of anything, but because it strips away barriers that have historically slowed trials down, leaving only the science and the patients.

They are requesting you to fill out a short survey.

 

[Trish]

They are requesting you to fill out a short survey.

I've done the survey. It asks about what sort of trials you'd like to be done, practicalities of at home or at clinic, what outcome measures are useful and more.

 

[Jaybee00]

Also just took the survey—not burdensome but also does not ask which meds/compounds you want tested/researched.

 

[Caroline Struthers]

https://www.omf.ngo/introducing-ctn-lite/

Today, we are excited to share a significant step forward: the launch of CTN Lite, a new initiative that will bring us closer than ever to delivering real treatment options for ME/CFS—faster, smarter, and with patients at the center of every decision. We call it CTN Lite not because it is a lesser version of anything, but because it strips away barriers that have historically slowed trials down, leaving only the science and the patients.

They are requesting you to fill out a short survey.

Hello! I have been away from S4ME for a while. I have tried unsuccessfully to get funding in the UK to pursue my Trialblazers idea (2 pager and 4 pager attached) which is about how to get patients en masse involved in designing clinical trials. I want to use designing a trial of one or more repurposed drugs for ME as a case-study/proof of concept. I would love to collaborate with OMF/CTN Lite if possible to get this idea off the ground. Funnily enough I was already considering travelling to California this summer to visit my daughter who will be doing an internship at Caltech in Pasadena. Not far from where OMF is based?? Is anyone from OMF/CTN Lite on here and interested in talking to me? If not, should I just write to OMF info@omf.ngo? Any advice gratefully received

 

[Braganca]

@Caroline Struthers Email Linda Tannenbaum.. ltannenbaum @ omf.ngo

 

[Jaybee00]

Or Danielle Meadows—same email format as above.

 

[Hutan]

Today, we are excited to share a significant step forward: the launch of CTN Lite

It sounds promising.

I was looking at the MitoQ trial that Mendus did recently, and the blinded crossover substudy where people were sent the unlabelled pills in the mail combined with subjective surveys was actually pretty useful. So, this idea of multiple locations and people participating even from home sounds feasible. It is potentially a way for clinicians to do the right thing, and participate in trials of the treatments that they are currently prescribing, without much effort.

I think the chances of this initiative coming up with anything that is an effective treatment in any material sense is minimal, but it could give us some evidence that a treatment is not useful, at least in the dose and treatment length tried.

I guess we'll see if the appropriate level of rigour is applied, but I hope this works. If you had a few ME/CFS specialist clinicians onboard, confirming the diagnosis and demographic information, you could really churn out studies of drugs.