The Research Continues at Open Medicine Foundation

[Ben H]

Hi guys,

An update from OMF:


Dear Friends,

In a world seemly upended, Open Medicine Foundation can offer you the assurance that this crisis will not divert us from our search for a cure for ME/CFS.

I thought I would take a moment to let you in on how we work and why we are so

confident about our collective ability to stay on task. Our models of work for both our OMF staff and the Collaborative Research Centers are streamlined and adaptable. We are distributed worldwide and are experts at using remote communication and data-sharing tools.

But I have another source of hope: The OMF staff and research teams are called to this work based on a personal connectioni to ME/CFS patients and families.

Choosing to work on ME/CFS by definition requires embracing challenges and finding creative solutions. And OMF will see this work through until patients have the answers they need.

We are working to free many millions of patients from the cruel restraints of this disease and to shield millions more who could someday have it from the suffering it inflicts.

Each of us faces many added fears and worries today, so I invite you to set aside your concerns about the continuity of ME/CFS research. It will go on, and so will we.

Stay safe, and take care of each other,

With hope for all,
Linda Tannenbaum
Founder & CEO/President
Open Medicine Foundation
www.omf.ngo

______________________________________________________________​

A message of hope from Ronald W. Davis, PhD,
Director, OMF Scientific Advisory Board:

“We are doing everything we can to continue progress on ME/CFS during this time when we can’t go into the lab. This is a photo of me on a zoom conference call with doctors and researchers from across the country and Europe planning for a test of a new idea for treatment of ME/CFS.

We are using this time of isolation to do planning, data analysis, writing papers, and writing grants. So far, we have at least 5 grant applications in progress. “

______________________________________________________________​

P.S. I have great faith in the continued dedication and support of the ME/CFS community. You are our greatest asset, and we share the understanding that our shared mission transcends any single challenge.

​

 

[frozenborderline]

Please look into environmental factors

 

[Ben H]

Please look into environmental factors

Hi @debored13

That's quite a broad request encompassing many things, is there something specific you are asking?

Thanks,


B

 

[frozenborderline]

Hi @debored13

That's quite a broad request encompassing many things, is there something specific you are asking?

Thanks,


B

The reason I kept it broad , rather than referring to mold or any specific toxin is that without scientific study we cant know in particular what it is in the air that we are reacting to

I have theories, many people have some theories that make sense... but it's important to start with a big data approach where we dont consider anything ruled out until we cast a big net

The open medicine foundation has taken this approach with bloodwork, genetics, metabolomics and virus hunting , but I think given the large percentage of patients reporting environmental effects on their health, we should take an aggressive "big data" approach to finding the environmental culprit.

It could start with basic epidemiological work, like detailed maps of me/cfs cases arranged by severity, down to the county level, and air sampling from indoors and outside the houses where they are sick.

It's hard to do scientific work without having a basic idea of what you are looking for. Unfortunately, with environmental toxins, the outdoor microbiome, nanoparticle pollution, etc., there's lots of basic science that hasn't been done, so the groundwork for figuring these things out isnt necessarily as standardized as it would be with virus hunting.

But given how important it is that's not a reason not to do it

I have been trying to get this article https://www.pnas.org/content/115/27/7087
to Ron Davis and Robert Naviaux for awhile.

It's very groundbreaking science in which they show that nanoparticles combine wirh mold spores, making them pathogenic. It has both in vitro and in vivo parts of the study, and actually finds this effect happens with molds sampled from construction sites, not just in the lab . One mold illness patient has discussed a theory similar to this one about why mold in civilization seems to be more pathogenic than mold in wilderness areas. I am told that Ron did not take this theory at all seriously. But it's being borne out by recent scientific work.

Whatever we react to is more than just "mold" and will require a paradigm shift to study.

 

[raghav]

Please keep us updated on a weekly basis. Thanks.