Open Medicine Foundation (OMF)

I have mixed feeling on the OMF. I have so many questions - where is the metabolomics replication, why has the nanoneedle not been tested in other diseases, what progress has been made to uncover (something in the blood). I understand good science takes times, but many of the questions are going on half a decade funded by well over 10 million dollars.

I think we have gaslight ourselves to just be grateful for whatever we get, as long as it's not BPS. That's a terrible attitude for a community to have. I think the most recent Berquist paper funded by the OMF was of a very low quality, and I don't want to not say these things anymore. I think the metabolomics replication being obfuscated or whatever happened is very strange. I think 5 years you should be able to test 10 non-me/cfs sick people or narrow in what's in the blood. If it's nothing that's fine. But we need to know. What's taking the Harvard OMF 4 years to do anything?

But to solely blame the OMF is wrong. What on earth has Griffith University being doing with millions of dollars? Really, wtf. The NIH study was a scandal and they got away with just wishing it away to go study long covid. 5 years! Nothing substantial published. I think other countries have been even worse. Nath's 3-year cutoff was based of a weak from Columbia that was never replicated showing "immune exhaustion". How's Nath got away with that. Numerous other cytokine studies didn't replicate it.

We need to expect better from our me/cfs researchers, not just the OMF. I don't know how to do this in a healthy way, I don't want to feed the narrative of ungrateful me/cfs patients, but I'm actually considering taking a break from s4me because so much research (which is what I mostly read) isn't very interesting or good, or it takes too long. I read it and am desolated.

I'm sorry if me/cfs researchers read this and feel angry. Maybe I'm being unfair. I desperately want to believe. But has any progress been made in the last 5-7 years with tens of millions? idk

 

New OMF video published on YouTube: "What is ME/CFS?" (1 min 19 sec)

https://www.youtube.com/watch?v=a0B-Dvop5uU

(I can't help wondering how many healthies know what orthostatic intolerance and environmental factors mean in this context.)

 

The majority of health care workers don't know what OI is, let alone 'healthies'.

 

No updates from OMF of late. Dr. Davis does have the microscope. No news.

 

from email

 

Merged thread
A history of neglect
Myalgic encephalomyelitis and its relationship with medicine

By Christian Godbout

full article
https://www.omf.ngo/christian-godbout-a-person-with-me-speaks-out-on-the-history-of-me-cfs/

 

This is great, thanks

 

This is from 2021 but we don't seem to have anything on it yet.

"You might remember last year OMF announced that we are working on an exciting new project to streamline the arduous diagnostic process for people living with chronic complex diseases.

The “Personalized Automated Symptom Summary – Computer Adaptive Test” (PASS/CAT) is a machine learning tool that will help patients more accurately and efficiently convey their symptoms to their treating physician.

....

What is the vision for how the PASS/CAT will be used by patients and doctors?

Since the assessment is computer-based, the physician can send a link to the patient for completion prior to their visit. The PASS/CAT physician report will quantify the level of the patient’s symptoms and summarize it in a symptom profile. Alternatively, a person with symptoms of chronic, complex diseases like ME/CFS will be able to go to Open Medicine Foundation’s website, complete the assessment and bring the report to their physician to review and discuss the results as a clinical test."

https://www.omf.ngo/transforming-the-diagnosis-of-complex-diseases/

 

sounds like a v useful idea!

 

Basically a way to turn the symptoms list patients bring into a format that will be accepted, rather than glanced then ignored?

Interesting. Could be very useful. Obviously one of the main obstacles to achieving any progress is that over 90% of the illness is simply ignored, information thrown out right at the first input as if of no relevance. I am convinced that not only would a symptoms-based approach to medicine be far more effective at making progress for ME, it could actually make progress in the biology of symptoms, which has almost seen zero actual progress.

I hope this is what I'm thinking it's describing. This could be transformative by sheer usefulness, if used properly anyway. But it's a big project.

 

Merged thread

OMF May momentum reseach updates

https://www.youtube.com/watch?v=6SBZAB7VnVE

 

Merged thread

OMF May momentum reseach updates

https://www.youtube.com/watch?v=og-KcZcvnWY

 

I'm glad this distinction has been recognised - it certainly took larger, regular doses of Mestinon to improve my condition in a way I could readily observe.

Curious to see what comes next. Is there funding/interest to build upon these results, remove that acute dose limitation, show the efficacy in a larger RCT and hopefully get simple Mestinon into the hands of more patients? Or it more likely only going to potentially lead to a more targeted, novel drug test that promises very significant improvements?

 

How much better are you with Medtinon?

 

Transcript for Systrom https://www.omf.ngo/may-momentum-tuesdays-2022-interview-transcript-with-david-systrom-md/

The 8 million dollar trial


The other perspective, randomized, placebo-controlled clinical trial we have ongoing is an $8 million study of mitochondrial dysfunction at the Brigham of single site study funded by a Pharma company named Astellas from Japan. It is ME/CFS, but PASC was not excluded. We have already included some patients in the study who have long COVID. And it involves two very difficult to get needle muscle biopsies of the thigh frozen and sent appropriately to Baylor for evaluation of mitochondrial function. And I would emphasize that we take that approach in ME and PASC is very important again, because most of these patients don’t have genetic forms of mitochondrial myopathy. And the study is ongoing. It was powered by 40 patients. We enrolled 27 of the 40 over about six months, and we’re looking to complete this and run our stats on it. It involves two invasive cPETS at baseline and then at the end of six weeks of treatment with PPARD Delta modifier. It’s proprietary, but it’s thought to act favorably on fat metabolism by the Mitochondria. So we don’t know what patients have gotten yet, but stay tuned.

 

PASC is post-acute sequelae of COVID-19, according to a search. (Maybe it's well-known, but I'm somewhat dopy/thick at the moment!)