Open Medicine Foundation (OMF)

I agree with @Wilhelmina Jenkins. I remember other patients in Cheney's office telling me CFS would be renamed Paul Cheney Disease. They were sure Cheney would find a cure. Cheney was their hero.

If I am remembering correctly the nanoneedle was going to be used in clinics all over the US. It was going to be cheap at only $10 or so. But the CDC and NIH declined to fund an additional study into the nanoneedle. So that biomarker went up on the shelf. Maybe the owners of the nanoneedle will sell it to a large company that can fund the study. I'd rather pay $1000 and have a biomarker than pay $0 and have nothing. Plus the nanoneedle would help people with MECFS win their private insurance claims. The sicker people wouldn't need a 2-day CPET for their private insurance.

Has the CDC or NIH given any funding to OMF researchers after the nanoneedle was used for MECFS instead of cancer? People with MECFS need some very conservative researchers that the CDC trusts. It doesn't matter if we patients see the researchers as credible we need the CDC and NIH to see them that way. Maybe Ronald Tompkins will have some credibility at the CDC.

 

They are far from the only fairly prominent researchers or clinicians on either side of the pond that does this, at least they have a worthwhile motive for doing it, to keep the interest and raise much needed private funds. More than I can say about many others’ motives.

 

I've been thinking a lot about this, trying to understand where OMF is coming from, their priorities and their strategies.

It brings to mind something that happened a couple of years ago. OMF had recently changed some design elements on their website. A severely ill pwME friend of mine was trying to read an article on OMF's website, but couldn't because of an animated DONATE NOW button at the top of the page.

(I have the same issues, I can't read text on my screen if there are moving or blinking stuff like flashing buttons, video ads, scrolling text, animated gifs etc. Sometimes it's not so easy to hide them, and it can be very difficult to cover them up on your laptop screeen by physically using your hand, for example, especially when you're suffering from severe muscle fatiguability and it's a long article that takes a while to read.)

My friend contacted OMF to let them know that she was unable to read the articles on their website, and explained why (neurocognitive issues due to severe ME). She was very disappointed when OMF replied that animated buttons were really important to increase fundraising. I was really disappointed too.

What I took away from that at the time, was that my expectations had probably been wrong all along. I had a long think about it, and started seeing things from a different perspective.

I now think of it this way: all OMF's communication, including their website, is targeted primarily towards donors and potential donors. Fundraising is their primary goal, their number one priority. The main purpose of the info they are sharing is to get more people to donate, and to make their donors feel that their money has been put to good use, that it's giving great results. Nothing wrong with that, so please don't misinterpret this as criticism.

So, I'm trying to see all OMF's communication through that lens now. They are not primarily addressing me as a pwME, they are addressing their donors and potential donors. For example, I happen to be, or maybe used to be?, a long-time OMF donor, so I now think of all their emails as donations related communication to "donor mango" (not scientific updates/info for "pwME mango").

That's how I try to make sense of it, anyway.

I understand OMF wants to spread hope to pwME and their families too, that it's really important to them. However, I think hope means different things to different people. What gives one person hope might have the opposite effect for someone else. For me, true hope has to be realistic and based on what is. "Hopeful messages" based on intentions, speculations or wishful thinking don't fill me with much hope at all, they feel too much like empty promises or make-believe.

The quotes TiredSam posted above, that's the kind of stuff that creates very high expectations. OMF's messages used to give me hope back then, but, to be honest, they no longer do. That's one of the dangers of overpromising and under-delivering. You can only say things like that so many times, before people start to wonder why you haven't delivered what you "promised", and you risk losing their trust.

I would say unfulfilled hope is one of the most bitter kind of disappointments there is, and it can be very difficult to handle, especially if it feels as if hope is the only thing keeping you alive.

I still believe in Ron Davis and his work, and I'm "cautiously excited" by the work of many of the other researchers funded by OMF. But nowadays I do take OMF's "hopeful messages" with a huge grain of salt.

(Both me and my friend were still interested in the content on OMF's website despite their accessibility issues, so we used to bypass the problem by copying articles from OMF's website into Word/Open Office documents, and read them from there instead, every time a new article was published.

OMF eventually changed their website design again, so nowadays we are both able to access it, which I'm grateful for.)

 

Even if that’s true, their strategy backfired in the case of my donations and those of my family.

I chose not to financially support OMF due to their messages of false hope, the disappointing response I received when I wrote them regarding those messages, and their actions related to CCI.

I chose to contribute to SolveME instead, and I have a generous relative who has made several donations there in my name also.

I was at one time excited about Davis’ research (and still hold out hope for it) and might have sent all or at least a percentage of my donations to OMF if they had made different choices.

 

I agree.

I am particularly bothered by Whitney’s comments that he has inside information, can’t reveal it all, but knows that big things are right around the corner, and everyone should therefore have hope.

I understand his motivation may be to give hope to others with ME, which is nice.

For me, though, it’s a reminder of all the false hope and false promises I’ve had over the past 12 years since diagnosis. It also reminds me of societal inequality. That if my father was an award winning scientist I would have access to a different level of care and hope than I do.

As I read commentary I see Whitney given a lot of leeway by people who don’t have severe ME. People often write things like ‘well think how hard it is for him’ and I do and I have compassion for his experience. I also have understanding and compassion for the many other people who suffer from severe ME (which includes myself) without the resources or access that he has.

 

I understand. Sorry to hear you received a disappointing response (I chose to contribute to David Tuller's crowdfund instead, this time.)

 

I was wondering today, cause im doing a summary of this decades' most promising research.. What happened with the nano needle? The paper got published, but what are the plans now?

 

@Ben H detailed the plans end of last year. They're creating a new one.
https://www.s4me.info/threads/lives...-columbia-university.12407/page-2#post-219588

I was disappointed that they didn't just try out the test using the existing nanoneedle on a few other chronically ill patients with other conditions just to see if it only 'works' on ME patients.

eta: seems to have gotten a bit side tracked with the whole CCI thing.

 

I have not donated to OMF in a long time after seeing the false hope being whipped up every year.

 

I share this concern but continue to donate as, after going around in mental circles, this still seems like the best place for me to contribute financially. Other suggestions more than welcome? I am in Canada.

Edited to add - One of my considerations is that OMF supports researchers in Sweden, Australia & Canada, in addition to their work in the US.

 

Yes totally, as a researcher you want to do those “low hanging fruit” experiments that could disprove your hypothesis as quickly as you can. Then if it turns out badly you quickly move on and refocus resources to other hypotheses.

I feel the same with the IDO metabolic trap hypothesis, there’s emerging research I read regarding TDO and IDO physiology that to me don’t add up with the hypothesis (I wrote more about it on PR).

I do feel that sometimes the ME community is left waiting for years to see if a hypothesis has any teeth, where if research groups and private funding organizations just focused their limited energy and resources to disprove hypotheses and move on or not then we would feel like more progress is being made.

I’d rather have a funding organization spend most or all their resources on one or a couple hypotheses at a time so that we can get negative or positive results in a reasonable period of time, instead of spending resources working on many hypotheses and we don’t see any progress for years.

 

(Edited to manage visual impact of white text on black screen)

Facebook: paused_me
Saturday

Kristina Starostina to Whitney Dafoe
Hello Whitney, can you then say, how long do we have to wait till something breaking comes out? Approximately... This year, 2 years, 5 years? I would like to explain why I am asking, but if I do, some mecfs people will... Well they will not like the explanation.

Whitney Dafoe to Kristine Starostina
breakthroughs have already been made they just can't talk about them because they aren't ready for the public yet. But the science is there and the scientists are working as fast as they can to figure these breakthroughs out and turn them into treatments or more. So you may not be hearing about them soon but they are happening.

 

I'm not interested in breakthroughs that still need to be figured out and can't be told to the public, they don't sound like real breakthroughs.

 

Exactly.

They sound like more false hope and false promises.

 

Vsou, forgive my dunce head question: but where did you get that? Was it Facebook, or twitter, or what? and whose? Thank you.

 

It appears to be a screenshot of an Instagram "Story", that itself is a screenshot of a conversation on Whitney's Facebook page.

 

Not a dunce head question at all. It was posted in a fb group. I couldn’t work out the origin myself.

@5vforest seems to have worked it out above.

 

Yeah, not thrilled by his framing.

Also, if he’s going to act as a mouthpiece for the OMF, IMO he is ethically obligated to follow charity standards re: public communication. Those exist to prevent harm even by well-intentioned people.