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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.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.
But it needs to be published. If not it might as well not exist.He has said he is skipping publication...but will share his data w/other scientists
I worry about that.He has said he is skipping publication...but will share his data w/other scientists
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 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 understand. I carefully chose my words and I voiced my opinion. If I were american I would have said I exercised my first ammendment rightI 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 don't disagree, but Dr. Davis is just one man, and something has to give. I'd say let it be the publication.
I wouldn't be surprised to see some of the researchers he is working with follow up with the publication part.He has said he is skipping publication...but will share his data w/other scientists
I think this helps explain it.Have you got any idea why we have to demonstrate it so many times? I can't understand it.
Dr Kogelnik isn't involved in the research on the video.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?
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.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.
https://www.theatlantic.com/health/archive/2017/02/when-evidence-says-no-but-doctors-say-yes/517368/I think this helps explain it.
http://www.newyorker.com/magazine/2017/02/27/why-facts-dont-change-our-minds
Thank you @Rose49 and please convey my gratitude to Ron and everyone in the team.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.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.
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.