Open Medicine Foundation (OMF)

https://twitter.com/user/status/1388463521168564232


$1 million is great. Another $200 million or so would be even better.

 

For the people who forgot to sign up for the OMF virtual open house. (Starts at 1400 EST)

https://www.youtube.com/watch?v=8xRLEhCog0s

 

@MEMarge Yes

 

The open house is really long (3 hours)....lot of info...hopefully they can make a summary. Or maybe someone from here with minimal neuroinflamation could take a stab.....

 

https://www.youtube.com/watch?v=8xRLEhCog0s

This link works.

 

from an email

 

Ronald W. Davis, PhD presents at OMF's 2021 Open House

Description:
Dr. Ronald Davis is Chair of OMF’s Scientific Advisory Board, and the Director of the ME/CFS Collaborative Research Center at Stanford University. Dr. Davis is a professor of Biochemistry and Genetics at Stanford University School of Medicine and is the director of the Stanford Genome Technology Center. Dr. Davis’s history of interdisciplinary work, technology development, and attacking previously unsolvable biological problems (both in genetics and traumatology) makes him the ideal scientist to lead a collaborative effort to solve the mystery of ME / CFS. Additionally, he brings a strong passion to this cause in hopes of finding a cure for his son, who suffers from a severe case of ME/CFS. Please enjoy this update from Dr. Davis, given at the 2021 OMF Virtual Open House, about the exciting research into ME/CFS happening at Stanford.

https://www.youtube.com/watch?v=6kYx9A2KXMU

 

My honest opinion is we're getting no where near the whole story about what's going on with the metabolic trap.

Since the public introduction of the metabolic trap theory back in early 2018 it has been heavily implied countless times by the OMF and Dr. Davis that this will be a flat out cure or a very good treatment for ME/CFS. Examples include: "more that it is it's probably correct", "if this is the case I think we can come up with a strategy that not only will make you feel better it will cure you", and "I think we can cure it" (Retweeted by Janet Dafoe). Also, Janet Dafoe herself was responding to patient questions posted in the Youtube comments of OMF videos involving the metabolic trap; if the trap is correct does this explain x ailment (The comment section is now disabled). The list of ailments that she claimed could be explained by the metabolic trap included: Fibromyalgia, POTS, EDS, MCS, CCI (yes cci), and MCAS. All during this time there has been zero media coverage outside of a handful of Cort Johnson articles (1, 2, 3).

Over the last year, as we all know, there has been a global pandemic going on that can cause symptoms that look just like ME/CFS. Many researchers have theorized what may be causing Long Covid, what they all have in common is that they didn't keep it to themselves, they went to media outlets and said what they think might be causing it (Examples 1, 2, 3). Since the beginning of the pandemic Dr. Davis has been interviewed by at least 10 different news outlets including The Wall Street Journal, Al Jazeera, People, and CNN (Author has ME/CFS). Not once has he mentioned the metabolic trap in any of the write ups. When I emailed the OMF about why they haven't mentioned the trap in any of the write ups they responded with that it was mentioned in the Al Jazeera article. The only thing I could find was essentially a name drop: "Robert Phair, a former Johns Hopkins School of Medicine professor, has seen interrupted metabolism in patients".

They lament about not having funds to carry out research, but when given a golden opportunity to create a silver lining out of a catastrophic event, they choose to remain mute. I'm not saying they need to make the grandiose claims to the media like they do with us, I well understand that runs a high risk of blowing up in their face. What I can't understand is not saying something on the lines of we are working on figuring out a treatment for ME/CFS that could also wind up applying to Long Covid and giving an overview of the metabolic trap along with the paper that Dr. Phair & Davis published.

 

Phair is still posting on PR as HTester as recently as last Friday.

Personally, all things considered, I'm satisfied with their progress.

 

@Trish,
I’m not trying to use Cort to draw any conclusions, I well understand that he is a patient trying to keep other patients updated on the latest research while striving to maintain a positive morale in the ME/CFS community. If it comes off as I’m trying to draw conclusions based on his articles, I’m terribly sorry, I promise that was not the intention. His articles were only used to show that he was the only one to write about the metabolic trap, and to exhibit them for anyone who wasn’t aware of them.

Regarding Janet’s statements, I believe she is being counterproductive to securing finances at the meso and macro-level if she or Dr. Davis doesn’t have reasonable evidence to back it up. Researcher or not, her words and actions will be taken with great value because her husband is the top researcher in the OMF and the general ME/CFS network. That being said, I don’t think she is aware of the potential harm she is causing, due to my assumption that no one has told her. Any competent nonprofit CEO/President or Director of Communication (especially ones earning over $150,000 a year (Page 7)) should be informing her that overpromising and giving out deadlines that can’t be met greatly devalues future claims.

Currently, my understanding of the metabolic trap is that it’s more than just some half-baked theory that has no more weight in being correct than toxic mold exposure or heavy metal toxicity. Given the examples in my previous post, and the clinical trial in Sweden that would have been completed by now if it wasn’t for Covid, I’m under the impression that the theory is solid enough to be told to a news outlet that this theory exists.

Again, right now is a golden opportunity they need to be taking advantage of. People who have come down with Long Covid are early enough in the disease where some can still work or they are freshly out of the job market, meaning they can call in favors from colleagues or personally help the OMF pro bono because they’re cognition/fatigue isn’t bad enough that they can’t help. I’m sure there’s at least a handful of people who had corporate or high level government jobs who came down with Long Covid and would be willing to help out the OMF to speed up a treatment or cure. In a year or two the opportunity will be gone, favors will become much harder to call in and/or their cognition or fatigue will be too bad that they can’t be of much use. As any high school marketing/business class will tell you, if you don’t have exposure, how do you expect potential customers to find you.

 

I don't disagree with this kind of exposure to patients at all, I just feel the need to correct the part about people not being so ill first because they are early in the disease: there are definitely people who feel their initial 1-2 years after the infection were exceptionally challenging and who improved a bit after that, although never recovered (and maybe followed a different pattern eventually but later). I think this is not so uncommon. The patterns of long covid might turn out to be similar, although we have yet to see that (meaning some people might get gradually worse, some might improve a bit after the initial period). I feel I was non-stop braindead in my first 1-2 years.

 

The high salaries at OMF really bug me too. I know the Bay Area has a high cost of living and all, but those numbers are very outsized for a nonprofit funded by patient donations.

I have donated in the past and am not sure I would again after seeing the 990s. I hadn't seen this most recent one with the second staff member earning > $100k.

 

I am totally fine with Linda T's salary, it isn't a volunteer position. She has performed at a high level in fundraising and raised OMF into a well-run organization that spreads across the globe. She gets the researchers the money, and has done so effectively. The website is well run, their outreach is decent as well and they put out a lot of good information. I believe she is effective in communicating with researchers and getting others involved in me/cfs, running the symposiums, etc..

RE @Possibly James May I think the discordance here is reflected in this thread - many members don't want OMF pushing a theory that hasn't been founded in peer review research. Pushing out the metabolic trap information and then having it go nowhere would be a disaster. Alternatively, it may reflect how confident they are in it at this stage, and the IDO2 hypothesis may not be progressing as they hoped.

It occured to me recently the metabolic trap may not be a singular causality as it sometimes sounds, but maybe an influencer of specific symptoms like fatigue or input intolerances. E.g. the severity of the metabolic trap may determine the severity of one's fatigue rather than their entire illness, explaining some of the variation we sometimes see.

 

There's a separate fund and info page for the ME/CFS Collaborative Research Center (led by Jonas Berquist) at Uppsala University in Sweden, in case anyone would like to make a donation earmarked specifically for that part of OMF's research:

https://www.omf.ngo/uppsala-fond/

 

Interestingly, that seems to be a 'hidden' link, at least as far as I can see. If I go to any of the English language pages, including for Uppsala, any click on the donation option only gives the option to donate into OMF's general fund, so there seems to be no easy option to donate to specific centers, as far as I can see.

 

Oh, yes that's interesting. This is what I see when I click the donate button on the Uppsala fund page.



(The text in the screenshot says “Support Research at Uppsala! Your donation today will be restricted to the Uppsala Collaborative Research Center.”)

 

From NZ, if I click on the top right Donate button I get a general May Momentum donation form.

If I click on any of the three Scandinavian language donation buttons (Donera nu, Gi en donasjon, Donér nu) a little further down the page I get an Uppsala donation form (the form itself is in English).