An Update on ME/CFS Research with Ronald W. Davis, PhD

[Seven7]

The best anybody can do for this community is to record this "healthy serum" vs CFS serum, this will bring on board every unbelievable or any doctor / doubting Thomas in the fence to our side.

 

[BruceInOz]

The best anybody can do for this community is to record this "healthy serum" vs CFS serum, this will bring on board every unbelievable or any doctor / doubting Thomas in the fence to our side.

Yes. While I fully understand Ron's desire and motivation to move forward as quickly as possible, it is also necessary to get these findings verified and in the literature. I do hope there is a plan in place to do this.

 

[aquariusgirl]

He has said he is skipping publication...but will share his data w/other scientists

 

[BruceInOz]

He has said he is skipping publication...but will share his data w/other scientists

But it needs to be published. If not it might as well not exist.

 

[Kati]

He has said he is skipping publication...but will share his data w/other scientists

I worry about that.

Scientific publication is a tool for advocacy for patients, and also signals to the governments the need for research funding. if there is no publications, status quo remains. The Cochrane reviews remain. Stigma and neglect remains.

 

[Jesse2233]

I like the idea of testing drugs directly on the serum and seeing if the cells respond. However I worry about such testing missing effective precursors that need specialized processing by cells not found in serum.

Of course I'm not a biology expert so this may not be a valid concern. Can anyone else shed light on this?

 

[geraldt52]

I worry about that.

Scientific publication is a tool for advocacy for patients, and also signals to the governments the need for research funding. if there is no publications, status quo remains. The Cochrane reviews remain. Stigma and neglect remains.

I don't disagree, but Dr. Davis is just one man, and something has to give. I'd say let it be the publication.

 

[Kati]

I don't disagree, but Dr. Davis is just one man, and something has to give. I'd say let it be the publication.

I understand. I carefully chose my words and I voiced my opinion. If I were american I would have said I exercised my first ammendment right

i have a great deal of respect for the Dafoe-Davis family. I also trust that Dr Davis does the very best he can and makes the best decisions. After all he has decades of experiences, he is surrounded by great people, and he knows how the science works. He is the science.

I am simply hoping that every building blocks fall in the right places, and that the discoveries that are being made get us all access to competent care.

 

[BruceInOz]

I don't disagree, but Dr. Davis is just one man, and something has to give. I'd say let it be the publication.

I understand this sentiment but for the progress made to be of help to all of us will eventually require publication. If the preliminary results are published, others may be able and motivated to get involved and may have other ideas that lead to more progress. That's how science works. As you say, he's only one and he is elderly and mortal. The trailblazer needs to leave enough for others to follow.
I am not meaning to be critical of Ron. I am very thankful for his involvment and really feel for his situation. I just would love to see what he's finding published. It all comes down to money I guess.

ETA: crossposted with @Kati

 

[PennyIA]

I haven't had a chance to read this whole thread... but it's AMAZING how much he's learned and the fact he might have a tool that could portentially diagnose? And maybe useful for narrowing down treatments? I'm thrilled to make another donation.

 

[RL_sparky]

He has said he is skipping publication...but will share his data w/other scientists

I wouldn't be surprised to see some of the researchers he is working with follow up with the publication part.
Recently I was told that Dr. Andy Kogelnik at the Open Medicine Institute was working pretty much full time on research. Maybe he will be involved in the publication part as he is involved in the End ME/CFS Study?

 

[Janet Dafoe]

Have you got any idea why we have to demonstrate it so many times? I can't understand it.

I think this helps explain it.
http://www.newyorker.com/magazine/2017/02/27/why-facts-dont-change-our-minds

 

[Janet Dafoe]

I wouldn't be surprised to see some of the researchers he is working with follow up with the publication part.
Recently I was told that Dr. Andy Kogelnik at the Open Medicine Institute was working pretty much full time on research. Maybe he will be involved in the publication part as he is involved in the End ME/CFS Study?

Dr Kogelnik isn't involved in the research on the video.

 

[Janet Dafoe]

Yes. While I fully understand Ron's desire and motivation to move forward as quickly as possible, it is also necessary to get these findings verified and in the literature. I do hope there is a plan in place to do this.

Yes. They will publish it as soon as they can. They are working on it, as well as putting together an NIH grant application for the new RFA. So much to do. You saw his face. He's tired and doing all he can.

 

[Wolfiness]

Thanks halcyon.

I think this helps explain it.
http://www.newyorker.com/magazine/2017/02/27/why-facts-dont-change-our-minds

https://www.theatlantic.com/health/archive/2017/02/when-evidence-says-no-but-doctors-say-yes/517368/

"A 2007 Journal of the American Medical Association paper coauthored by John Ioannidis—a Stanford University medical researcher and statistician who rose to prominence exposing poor-quality medical science—found that it took 10 years for large swaths of the medical community to stop referencing popular practices after their efficacy was unequivocally vanquished by science."

 

[knackers323]

I know its impossible to say buy is there any rough estimate when the next advance or finding ir piece of news might be regarding this?

 

[Kati]

Yes. They will publish it as soon as they can. They are working on it, as well as putting together an NIH grant application for the new RFA. So much to do. You saw his face. He's tired and doing all he can.

Thank you @Rose49 and please convey my gratitude to Ron and everyone in the team.

In case some missed my other thread, there was a webinar on precision medicine today, and the CEO of Metabolon presented on metabolomics and he made a mention of 'cfs', saying that us folks were sick and that there were proof of that, that there would be a publication by the end of the year.

 

[Wolfiness]

He didn't say he was *never* going to publish. I know we're all anxious and desperate but I think we can stop offering Dr. Davis entry-level advice. He knows the score.

 

[BruceInOz]

Yes. They will publish it as soon as they can. They are working on it, as well as putting together an NIH grant application for the new RFA. So much to do. You saw his face. He's tired and doing all he can.

Thanks Janet for everything you and Ron do. The tiredness evident in Ron's face does worry me. It just seems so wrong that someone who should be enjoying their retirement should feel they have no other options due to the fact that research into this abysmal illness has been so stunted for so long. I wish more funds were available to reduce the burden.

 

[Jesse2233]

Yes. They will publish it as soon as they can. They are working on it, as well as putting together an NIH grant application for the new RFA. So much to do. You saw his face. He's tired and doing all he can.

@Rose49

Very grateful for all that you and Ron do