OMF funds new treatment-focused project - Neuroinflammation

[Alvin2]

From the desk of Ronald Tompkins, MD, ScD
Chief Medical Officer, Open Medicine Foundation

As we reach the midway point of #TripleGivingTuesday, I’m thrilled to share with you the details of promising research at the Harvard ME/CFS Collaboration intended to open up an unprecedented treatment option to alleviate brain fog.

“Brain fog” often makes an affected individual’s life miserable and extremely challenging. To find interventions to reduce brain fog, identify neuroinflammation, and find out where specifically in the brain these problems begin, it’s necessary to employ brain imaging of the highest quality.
In collaboration with Massachusetts General Hospital (MGH), our team at the Harvard Collaboration will use advanced neuroscience facilities at MGH for brain imaging of people with ME/CFS. Researchers expect to see microglial activation, or neuroinflammation, in those brain images.

https://www.omf.ngo/omf-funds-new-treatment-focused-project/

My personal (unpopular) opinion, they will find bupkis but may try to make their data fit the theory.
I suspect the brain issues are caused by whatever active process causes the energy deficit.

 

[Pyrrhus]

Just to clarify:

https://twitter.com/i/web/status/1458114501803446273

 

[Rufous McKinney]

I'm very grateful they are going after this topic. (Brain Fog).

I'll step in it and proclaim this will likely be helpful, but the brain issues also include sometign energetic, and something vascular.

Dr. Proal previously indicated they don t' need money from patients for Polybio. And isn't Stanford missing the microscope they need? I don' t like to second guess funding thru OMF as I believe they are doing their best with the resources they have, amongst many competing agendas and alot of important work needs to be carried forward.

 

[Wishful]

I suspect the brain issues are caused by whatever active process causes the energy deficit.

I don't think there is an energy deficit in the brain. There's dysfunction that leads to the perception of energy deficit. I'm convinced that the brains immune cells are involved, although the immune cell dysfunction may not be the same, or as visible, as inflammation from viral infections or other causes. I am pleased to see the project.

I do think the title was a bit misleading. It says it's a treatment-focused project, but in reality it's just trying to verify that there is microglial abnormalities. To me, a treatment-focused project would involve trying actual treatments on actual patients. I don't think they'd have any trouble attracting volunteers for possible treatments. If they want to mail me some microglial-calming drugs, I'll give them a try.

 

[Rebeccare]

Just to clarify:

 

[Rufous McKinney]

The work they propose if successful leads to a treatment study of some possible pill that already exists. first things first.

 

[Alvin2]

Just to clarify:

https://twitter.com/i/web/status/1458114501803446273

Thats kinda sucky, they list him on their website but don't give him anything to work with.

I'm very grateful they are going after this topic. (Brain Fog).

I'll step in it and proclaim this will likely be helpful, but the brain issues also include sometign energetic, and something vascular.

Dr. Proal previously indicated they don t' need money from patients for Polybio. And isn't Stanford missing the microscope they need? I don' t like to second guess funding thru OMF as I believe they are doing their best with the resources they have, amongst many competing agendas and alot of important work needs to be carried forward.

I could be very wrong but i do hope they are not spending money on something that doesn't lead to anything.

 

[Hopeful1976]

Thats kinda sucky, they list him on their website but don't give him anything to work with.


I could be very wrong but i do hope they are not spending money on something that doesn't lead to anything.

Of course they are spending money on something that doesn't lead to anything. Its what they always do. I gave up on OMF a very long time ago.

 

[5vforest]

I am usually very OMF-critical but I’m always happy to see more biomedical studies
being launched.

Like Wishful I was also confused by them calling it “treatment focused”…

 

[Alvin2]

Of course they are spending money on something that doesn't lead to anything. Its what they always do. I gave up on OMF a very long time ago.

I have not given up on them but i do find some of their decisions baffling.
This study is not necessarily a bad idea, but i do think they are falling for the streetlight effect.

I am usually very OMF-critical but I’m always happy to see more biomedical studies
being launched.

Like Wishful I was also confused by them calling it “treatment focused”…

It sounds like they think they will quickly find a smoking gun then will easily find a metaphorical fire extinguisher for it.

 

[Wishful]

The work they propose if successful leads to a treatment study of some possible pill that already exists. first things first.

That sounds like a plan for drugs that provide marginal improvements for only some patients. If they strongly suspect microglial activation and have some potential treatments for it, just give a few patients the treatments and see whether any notice significant improvements. If yes, then they can do a proper in-depth study on larger groups to figure out optimum dosage, potential side-effects, etc. If the quick trial doesn't show significant improvements, then I'd drop it way down on the list for projects to fund.

 

[lenora]

Just to clarify:

https://twitter.com/i/web/status/1458114501803446273

Hi Pyrrhus....fine, but where are donations to be sent for this study? I checked the link, but couldn't find anything obvious. Thanks. Yours, Lenora.

 

[Learner1]

I am usually very OMF-critical but I’m always happy to see more biomedical studies
being launched.

Like Wishful I was also confused by them calling it “treatment focused”…

they strongly suspect microglial activation and have some potential treatments for it, just give a few patients the treatments and see whether any notice significant improvements.

What treatments are they trying to test? AX1125? LDN?

 

[Zebra]

Hi, Comrades,

Interesting topic! I am quite ill at the moment and unable to do any further investigation on my own at this time, so I ask the group:

Does anyone know if they are actively recruiting for this study? I would be very interested in applying.

Thanks!

 

[The Bard]

Hi, Comrades,

Interesting topic! I am quite ill at the moment and unable to do any further investigation on my own at this time, so I ask the group:

Does anyone know if they are actively recruiting for this study? I would be very interested in applying.

Thanks!

I recently submitted my interest in participation to various physicians within the Mass General network, where I am presently receiving the bulk of my treatment. Moreover, I maintain regular lines of communication with Dr. Ron Tompkins and am awaiting his response regarding study recruitment.

I will assuredly report my findings in this thread.

 

[Rebeccare]

The last I heard they were mainly recruiting from people who were already patients of Dr. Donna Felsenstein at Mass General, probably because they're already in the same network plus they already have medical history on the patients so they can determine whether or not patients are right for the study. But I'm not 100% sure of how accurate that information currently is--this might have been for a previous study.

 

[The Bard]

The last I heard they were mainly recruiting from people who were already patients of Dr. Donna Felsenstein at Mass General, probably because they're already in the same network plus they already have medical history on the patients so they can determine whether or not patients are right for the study. But I'm not 100% sure of how accurate that information currently is--this might have been for a previous study.

Dr Felsenstein’s patients were aggressively recruited for the VanElzakkar PET scan initiative striving to measure neuro inflammation. I can say this authoritatively as I am both a patient of Dr Felsenstein and a previous participant in said study.

Regarding the newly announced inflammatory undertaking, I suspect recruitment is on the horizon. However, I wrote to Donna this past week and am awaiting her response. If I’m proven incorrect and recruitment is underway, I will undoubtedly provide clarification in this thread.