OK....Let me say that Ron Davis's biggest concern is his son, Whitney. Can you blame him? The man is now 80 yrs. old and cannot possibly be studying everything.
Whitney became ill while traveling the world, and was in India when he became horribly ill. We all know the environment there is a disaster, but it's a different environment. His father was one of the first to use abilify)very, very small amounts only) on his son, just to get him back and forth to the hospital for the change in his feeding tube.
I cannot blame ron for caring about his son above everything else, but he is running a research org that is not doing projects called "the save whitney project" or the "end whitney's specific subset project", but "the end ME/CFS project". people talk as if this man is above criticism or should be. I respect him. i criticize people i respect. The more people tell me reasons why i apparently shouldnt criticize him, the more I think its warranted. I think my project has a low chance of working, but so does basically every idea we have, and low isnt zero. When someone has a better idea for how to achieve the goals i outlined here, I will strongly consider it.
At some point speculating on whitneys condition may be off topic,as the mods seem to have reminded me but just to briefly respond to you, bc you mentioned it, none of whitneys disease course surprises me or is outside the bounds of my model. I dont believe in a sole environmental toxin cause. What I believe is more along the lines of
@Hip 's "dual factor theory" in that infections, parasites, and environmental toxins interact. the whole world has many of the same environmental toxins, they're a more local problem. the same one could be in san francisco and mumbai. but certainly infectious diseases or parasites while travelling could interact with environment. im talking about the external and internal microbiome and how they interact.
You're right....he's capable of moving into other areas, but if the environment is your main cause of concern, then please contact someone like Julie Rehmeyer (Cort Johnson may know how....try to reach him at Health Rising).
I don't know how contacting Julie would help. Julie is currently ill, and not recovered from surgery, I am not aware at all of her organizing research or advocacy efforts. I have talked to julie plenty. we are on the same page on some things, on different pages on others, but also, I don't know that theres currently something i could ask her that would answer the questions im trying to answer through appealing to researchers.
Zero in on what you believe your main problem is....if the OMF hasn't responded to your needs by now, it probably won't.
Dr. Davis is an exceptional man who has done a lot for us. There are so many different needs and yes, there are other researchers, but to the best of my knowledge the "volunteer researchers" for him aren't doing environmental work. I may be wrong, but go to the sources who have been trying to do what you need/want. I really wish you well....it's a tough journey. Yours, Lenora.
Well, the thing is, Ron Davis actually said he would make it a priority to research mold, and they're the most well funded ME/CFS research org. the only orrg i can think of being more open to toxins research is polybio, but they are very, very, very far from being funded fully or even at the level of the OMF, i think. If they do get enough funding to start working on a similar amount of projects, I will switch my attention to them. I also have a website aimed at pressuring walter koroshetz, but that will have to wait until i'm less sick. regardless, i will stop this either when the OMF says in a straightforward way "No, we wont research this", or when they research it. closure--that would be great. then i'll move on to another group.
as far as what you said about dr davis, i agree he's exceptional, but I dont feel that I need yet feel any gratitude toward him until there are results that can be translated into something that will help my health. Its just not in my emotional capacity to feel gratitude just in exchange for effort, that hasnt produced something to help. I feel more gratitude to the non credentialed citizen scientists that have figured out connections like cci and me/cfs (jeff wood, jen brea, in particular), and those who have figured out the connection of mold to me/cfs, which actually helped me directly , and could translate to research discoveries (lisa petrison, erik johnson). as ive said repeatedly i do not feel i have any particular ill will to dr davis. but neither do i have this attitude i had when i first got sick and was naive, of pure adulation toward him and thinking that "the science" can make us better without any particular direction or funding.
oh and I'd add, I probably feel more gratitude toward
@Hip , who I believe has some science credentials but not in biology, for his compilation of research and resources. I mean, it may seem harsh to some, but i feel gratitude towards those that have helped me, and not much more than that.
Where are your parents and are they able to help you? I know your sister is also ill, a very sad occurrence.
Does she also have CCI....a diagnosis?
My sister doesnt have cci yet, she just has mcas, as well as , more broadly , environmental toxin illness, whatever we want to call that diagnosis, whichy is more than mcas.
honestly, with the way things are going, she may end up with cci, despite knowing how to avoid toxins, because the world is getting more toxic, and nobody is really studying this connection. but we pray she doesnt.
es, I understand that the road to surgery is a difficult one...I've been through it. Have you been diagnosed as actually having environmental problems? Then the only real recommendation I can make is for you to contact Julie Rehmeyer and see what she suggests. I tried to look for her book in case she had some contact info, but couldn't locate it. Which doesn't mean much...you should all of my books, especially if my husband is near them.
I have been diagnosed as having environmental problems (MCAS and CIRS), but I dont even think that matters. I mean its obvious. its the best level of evidence we can get now without further study is how the environmental changes affect both subjective (how i feel) symptoms and objective ones (my heart rate when standing versus sitting in various environments, for just one example, is always so vastly different).
I dont know what i would contact julie for. i read part of her book and liked it. i have been in contact with her, plenty, in the past. early on she told me a good place in new mexico. but I think we are at a point where we either know the same things and have the same problems, or have diverged in our interpretations. we have different scientific theories. I also dont know that she is currently working on research, bc it is my understanding that she isn't currently well.
the thing is, I know , in a practical sense, how to deal wtih my environment. but its insanely expensive, and when i stop having the money to do it, I will not have any options, at all. it would be less difficult and expensive and require less trial by error, if we could study the exact things causing it. thats why im so passionate about it. there aren't really any doctors that can help environmental problems much, at least not in a way that has high rates of succe4ss, or standardization, or scientific backing. the best info so far comes from citizen scientists, but I do wish that we could have more solid peer reviewed studies, but people refuse to study it.
