Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

Also, not sure if this is the right thread, or maybe there is an OMF thread, but these tweets suggest a PET study has been completed on neuroinflammation in me/cfs from the James Lab at Stanford. Hopefully, it will be published soon.

https://twitter.com/i/web/status/1290691765867966465

 

Moved posts

The new update seems to be up on youtube now

https://www.youtube.com/watch?v=KegawiZ5-KQ

 

This is mostly on the tryptophan metabolic trap. They have been trying to disprove it and have failed. Its been slowed by lack of fresh blood due to the pandemic, apparently frozen blood is unsuitable. There is preliminary data suggesting but not proving that the trap can happen in humans. More detailed data is from genetically modified yeast, in which they have been able to induce the trap and are now screening drugs to see if they prevent this in yeast. Some candidates have been found.

The emphasis is now on IDO1 more than IDO2. IDO2 may be less important than they thought.

Several other metabolic traps await analysis.

Any candidate drugs will of course have to be tested on patient cells in due course. I am not sure this was explicitly stated but was at least implicit in the discussion.

 

Thanks for summaries.

(Just a personal note: I wish that working time lines were also offered. These could be changed as things develop, but I do find the absence of working time lines very hard to take. I have been told that science doesn't work this way. But many years ago when I worked in the control lab for Merck there were always time lines in all the labs, and indeed these were often changed, but time lines were there and kept all us trying to adhere to them.)

 

With the greatest respect, we are talking about America here, and this is Stanford university and this researcher is top in the world. Is this a sign of the decline of America? I appreciate your observation Trish, I really do, and truly understand the implications, but this is not some rare illness, and I am truly puzzled that such a prestigious institution cannot help out this hard working selfless brilliant well known researcher. Just a personal opinion.

 

I have lost touch with Omf research and with this specific research. But my impression, which may be wrong, is that the metabolic trap is a main focus if not the main focus at Stanford. And that OMF brings in $5 million a year. I don’t understand how that squares with somebody working part time with old equipment to tackle a key priority. Clarification appreciated

 

Fixing old equipment might have been the easiest and fastest solution.

Anyway I'm glad this work continues as it seems promising even if the concept is weird.

 

The logical assumption would seem, at least to me, that the people who hold the purse strings for the OMF aren't convinced of the value of this work and so prefer to fund other efforts, such as the recently announced sleep study.

 

He is probably referring to the UK Biobank data - it was analyzed and the IDO2 mutations are not more frequent in ME/CFS patients than they are in controls. This was acknowledged by Janet Dafoe in a tweet, which was something like "yes Ron has looked at the UK biobank and there is no difference between patients and controls". Her justification for this was that in her opinion the patients who participated in the UK biobank study do not really have ME/CFS and so that's why they don't have the mutation.

My guess is that Linda Tannenbaum looked at this and decided the metabolic trap hypothesis was not worth funding anymore, and that is why there has been a huge delay and Ron Davis has to make do with old broken equipment and part time work.

 

I'm a little disappointed that Ron didn't really share any meaningful information about what really matters - evidence within patients.

Yes the drug screening platform is innovative, but it is a waste of time if this isn't the problem in the first place.

 

Nice of him reaching out, but it would be nice that ink was put on paper and shared with scientific community. Otherwise it simply is yet another pep talk with pleas to open your wallet.

 

Glad to see progress being made, even if it's very incremental.

I feel like I need an thread in the "emotional support" category for all these updates...

 

I think I've seen that film.

 

I'd really like to see some more co-ordinated messaging and research at this point. There is a lack of clear strategy (at least to me). Evidently there are divergent views about priorities (how else to explain this?), or we are only being given a partial picture. As someone who would potentially donate to OMF, I find these discrepancies offputting as I feel like I am missing an overall plan with clearly defined goals and (rough) timescales.

 

The stunning part of this update is that they are trying to disprove the theory. So much research into ME has just been dropped and either forgotten or people say it did not work out when it was just that the miniscule funding ran out, no funds were made available for large scale trials, the researcher died or became ill or something changed politically (thinking specifically about the NIH work into diastolic heart failure where the last work was not published and nothing more was heard.)

If we know it does not work we can move on. It is so different from all the confirmation studies done by the BPS.

I suspect that Ron Davis is desperate to find a treatment for his son while he can so does not have the luxury of time to wait for pleading his case to outsiders. His son being involved means he may be overoptimistic that there will be a simple cure but it surely means he must believe this has promise.