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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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Did I understand correctly from Ron's talk that the metabolomics testing is not going to be offered to patients in the near future? I thought that the plan was to make it available to us as soon as possible. Maybe I misunderstood.
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.
Ha! Yes me too. Even if they decide to call it my Jobseeker's Allowance. LOL.I will keep sending you money from my UK gov disability allowance ( so they will end up paying for me/cfs research even if its indirectly ).
Nice way to see it! I guess the German government is funding Ron's research too then.I will keep sending you money from my UK gov disability allowance (so they will end up paying for me/cfs research even if its indirectly)
I would just like to say reading through here that I agree with this sentiment, particularly the bit about Ron taking a breather while separation tests are run etc.It seems to be that at this point we now have a very well defined problem, and until the offending molecules are identified its mainly going to be just standard lab work which could probably be done by normal chemistry graduates, with some creative guidance from expert professors, in that sense perhaps ron can start to relax a bit ?
I don't need an academic paper or even a video recording of the experiment, I am convinced now that its legit and reproducable etc, I will keep sending you money from my UK gov disability allowance ( so they will end up paying for me/cfs research even if its indirectly ).
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.
You saw his face. He's tired and doing all he can.
Every morning I go and check this site just to see whether Ron has solved it yet. One morning I know its going to be so. Can't wait to hear that Whitney's making progress then I'll know there's hope for all. So grateful for all you are doing. If you are ever in the South West England having a well earned break- our house is your house. Its our son with ME's birthday today so we will be making a donation on his behalf.Thanks so much! Ron won't be taking a breather! He's heavily involved and it's complicated. He won't stop till it's figured out. No one else can do what he and his team are doing right now. This is new technology.
Thanks so much! Ron won't be taking a breather! He's heavily involved and it's complicated. He won't stop till it's figured out. No one else can do what he and his team are doing right now. This is new technology.
What can it be..
Why don't we let the man get on with his work as I'm sure he knows exactly what he is doing and what is the best approach to take. I doubt very much that Dr. Davis needs us telling him how to do his job.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
Why don't we let the man get on with his work as I'm sure he knows exactly what he is doing and what is the best approach to take. I doubt very much that Dr. Davis needs us telling him how to do his job.
I know we're all anxious and desperate but I think we can stop offering Dr. Davis entry-level advice. He knows the score.
Why don't we let the man get on with his work as I'm sure he knows exactly what he is doing and what is the best approach to take. I doubt very much that Dr. Davis needs us telling him how to do his job.
one things for sure, it's not all in our headsWhat can it be..