Open Medicine Foundation (OMF)

Hi! Haven’t been here for a while - very bumpy year! I wish for the best of luck for this book. It may bring good attention to this disease. And I respect Dr Davis tremendously as a scientist, especially when he just talks openly about his work as he has in Ben’s videos from time to time.

But the whole “Superman” concept worries me. I don’t like the community depending on the work of any one person. I’ve been in this community long enough to see quite a few people anointed as “the one”, from Dr Cheney on down. We need an army of researchers, not a hero. In the long run, Dr Davis’ greatest achievement may be in bringing new researchers and research groups into the field. Not the often mentioned Nobel Prize winners, but solid, thoughtful scientists, hopefully relatively young, who will do the work for the long haul.

 

(I’ve only seen Whitney refer to Ron as Superman. If other people are too, then I apologize.)

Whitney needs hope to be able endure what he does, and thinking of his dad as Superman clearly offers him some. While I agree with your point, I think this context needs to be acknowledged

 

From what I remember, the blood that was drawn and samples that were obtained have been preserved (frozen) so they could all be batch processed using the best tests available, and because of that they were waiting for the right tests to be developed.

The second reason that could explain the delay is that Dr Davis has expressed before the lower priority in publishing papers and instead pressing on advancing knowledge without publishing (which had for effect a lower chance of getting funded by NIH).

i am no longer waiting for the results of this cohort. Waited too long.

 

It’s not just Whitney. It goes back to the beginning of OMF. And I do not mean it as a criticism - everyone has to raise money. It was meant as a concern for the community’s reliance on one heroic figure when that isn’t usually how the best science is done.

Whitney can call him whatever he wants. So can anyone else. I would rather call him a good scientist. That is very high praise from me.

 

I'm reading the book right now (The Puzzle Solver by Tracie White).

The quote from the article is true to the book. It's in the chapter where they talk about analysing the chart of Whitney's metabolome test results (page 100 in the ebook).

I'm 66% in and so far the book is fantastic, brilliant

ETA: I've finished the book now. It's amazing!

ETA 2: In the book, the context of the quote is a moment between Ron and his wife Janet, at home. It's about their initial reactions to receiving the results, seeing the chart for the very first time. I didn't find it problematic at all, given the context.

 

Sorry, and I appreciate that you are just trying to explain their actions, but that makes no sense to me. How do they know that they don't have the right tests now if they aren't using them? And if they know what the right test would be, are they trying to develop it? And if they aren't, are they continuing to take samples, pending the hoped for appearance of the 'right' test?

I was initially a fan of this approach, but given the way that the research world works, I now think this is a big mistake. Sure, I completely understand the frustration of having papers rejected, but any knowledge advancements, even negative ones, need to be published so that it can more easily feed into the global effort, such as it is.

 

One of the issues here is the problem with the nanoneedle. They have at least two of a high throughput version on order. Both are delayed because of the pandemic. Much of their approach is about high throughput, lots of data, so intensive one test at a time is, I am guessing, low priority for them right now. This obviously does not apply to new tests and initial investigations, but its a major problem with doing tests on large numbers of samples using tests for which they can build mass testing technology. Remember that low cost high volume testing, and the devices that can be designed, is their thing. Or in other words, why devote a lot of money and hours on something that can be done cheaply and rapidly in the near future?

Publishing as a low priority I happen to agree with. Most of the data is just that, data, and big breakthroughs do need to be published, but the rest is available as open medicine, and every researcher who is interesting should rapidly find they can get data from OMF. Its not like we are talking about a trial of a cure and we want doctors to be aware. This stuff is still only of interest to specialist researchers, and I doubt there are many who don't have contacts with OMF.

 

It's been 5 years already, how much longer will we be waiting?

1. I have heard credible reports of researchers being unable to gain access to the OMF data they are interested in.
2. How do researchers know what data is available, especially researchers who don't know of OMF?
3. In not publishing, OMF make a judgement call in how valuable/relevant/important their data is. They might make the right call every time, but what if they don't? What if there is a researcher out there who could make a link, crucial or otherwise, using data that they might have found via PubMed if it had been published? OMF can afford, principally due to the level of donations from the community, to publish any paper of theirs as open access if they wanted to, thereby making it readily available to all without any need for OMF to be asked for it.

 

Dear Mango, thanks for this. However, the issue at hand was "Ron has discovered...." DISCOVERED.

Ron did not discover, Dr Davis FOUND the problem Whitney was having....Dr Davis was also fighting against the world of psychiatry which had deemed poor Whitney to be mentally ill. (The word discover can be used as in 'found' also, but the journalist made it sound like Ron had found something new, ie. discovered. )

I'm of the school that believes words still matter ))...But I'd love to hear more about the book....thank you

 

I quite agree.

ETA:

Maybe the whole thing started in April 2016 with the "Undies on the outside" fundraiser where Ron dressed up as Captain Underpants?

https://forums.phoenixrising.me/threads/new-omf-fundraiser-with-a-funny-picture.44237/

 

I have been reconsidering my monthly donation for this reason, it's not really worth it, frankly. I know it's a hard problem but no deliverables, even some mid-way progress, makes it a poor investment. It's the best we have, sure, but that really says it all. Frankly SolveME delivers more with far less, political lobbying is critical and has opened doors to us.

I have to say more than anything I expect more transparency than is typical. Not seeing it, OMF is following a typical closed academic approach. About as much transparency as the NIH has done, which is not much. I think this is the right team to do this but without adequate funding, everyone is too limited in what they can do.

Maybe this hope was misplaced. It certainly feels like it. Ugh.

 

It's bound to get sticky at times, when the de facto leader of an organisation has about as deep a personal interest in its mission as it's possible to have. Of course, no-one would criticise Ron Davis for being utterly driven to do the best he can for his son. Any parent would be.

But it can easily conflict with the best interests of a charity. It might be time for the board to get together and review their communication strategy, because at the moment the family's successful work on promoting the book – which of course they have every right to make the most of – is getting muddled up with Ron Davis's role in OMF.

As @Wilhelmina Jenkins says, it's fine for Whitney to talk about his father as a Superman figure. Nor should someone who's severely ill be expected to have the capacity to think about the optics before they tweet, in what is after all an entirely personal capacity. But the reason his messages are being read the way they are is because of the lack of separation between the roles of someone who's become a father figure to the ME movement, as well as a prominent research scientist, as well as Whitney's dad.

This isn't Whitney's fault, or Ron's – this isn't their specialism. But things appear to have been allowed to drift a bit, and if there are people in the organisation who're more experienced in how to handle strategic communication, it's probably time for them to step in. As others have said, it's possible the same needs to be done in respect of scientific strategy, but as I've no experience in that sector, it's harder to have insight.

 

The majority of my modest regular donations are to UK based organisations, partially with the idea that changing things here in the UK (i.e. with NICE and the UK funders) would have a knock-on effect worldwide and so I try to support that, but my one overseas donation is to Solve, for exactly those reasons.

 

@Perrier English is not my first language, which perhaps might explain why I don't see this particular word as a problem in this context?

To me personally, "discover" seems a completely reasonable word to use about a moment when you are getting a new understanding of something that was not known before, as in an insight, an aha! moment. The context in the book is "[Ron had] been waiting for two years to get the results of a test that would show how his son’s metabolome was functioning, a chart of all of the metabolic processes going on in his body." I've always understood it as something new, a first. The first time this kind of test/analysis was done on a severely ill person with ME?

I've shared some of my thoughts on this book here:
https://www.s4me.info/threads/the-puzzle-solver-by-tracie-white.18530/#post-316017

I created a new thread for the book, because it absolutely deserves it. I don't think it belongs in this thread at all, it doesn't have anything to do with OMF, really (OMF is only mentioned very briefly in the book).

 

Re: the "Superman" thing. Although I completely understand why, and agree that, it can be problematic in some contexts, I personally am getting the sense it's a way for Whitney to send the message "hold on, don't give up", encouraging us to to try and keep hope alive.

In other words, maybe it's more about holding on to hope even in the darkest of times, than it's about heroes per se? That's what I take away from it, anyway. Also, that "Superman" can't do it all on his own, he needs help, we need to do this together. Help hasn't arrived yet, but it doesn't mean that no one is trying, working on it. You are not forgotten.

Some of you might remember that Whitney put the song Waiting for Superman by the Flaming Lips on the playlist he asked Jen Brea to share with the ME community a while back. It's mentioned in the book, too. The lyrics go:

"Tell everybody waitin' for Superman
that they should try to hold on best they can".

("Superman" is not a big thing at all in the book. It's the title of the last chapter, in reference to the lyrics quoted above.)

Here are the lyrics in full:

On the SongMeanings website you can read about how others interpret the meaning of this song.

ETA: Spelling mistakes, sorry...

 

In my seven years of ME I have seen many superheroes, messiahs and would-be leaders come and go. Most of them have been a complete disappointment. Some of them have had their own agenda. Some of them have caused more damage than good. We don't need another hero.

 

May 2016 Ron Davis

“I think that we are very close now to finding a molecular diagnostic marker.”



(At around 10:00)



Aug 30th 2016 Janet Dafoe

“We're going to END ME/CFS!”

https://forums.phoenixrising.me/thr...nic-fatigue-syndrome.46486/page-5#post-756806



Dec 25th 2016 Janet Dafoe

Merry Christmas! We are thinking of you all tonight and are dedicated to treatment/cure in 2017!

https://forums.phoenixrising.me/thr...iday-message-of-hope-video.48470/#post-797326



March 8th 2017 Janet Dafoe

Q: If I may ask -- does Ron think he is closer to being months away from finding a treatment, or closer to years away? I'm guessing the latter?

Janet: He's hoping for months.

https://forums.phoenixrising.me/thr...1-17-research-update.49749/page-9#post-821430



Jan 1st 2021 Whitney on facebook

"Happy Cure Year!"




I really wish they'd stop doing this.

 

@TiredSam oh...I actually did not realise they had been saying this since 2016. I remember them being very enthusiastic, and I remember being very enthusiastic and hopeful too in the past and then feeling really sad when it didn’t pan out, but couldn’t remember the exact wording. If their new thing is the same as the others, I will be really crushed.