well, I think doing this for the love of his child is noble, and means that he is committed to solving this, genuinely, but it has a downside, and that downside is he is way less likely to look into things that he doesnt think apply to whitney, inasmuch as he may believe there are different subsets. He doesnt think mold or cci apply to whitney. i guarantee if he did, he would be studying them. its fair to want to save your child, but a) he could be wrong about whether or not those things apply to whitney and b) your responsibility if you are an ngo like that is not just to whitney but to all the other me/cfs patients, including myself.Frozenbordeline.....Ron Davis does his work for the love of his child. He's way, way past retirement age, and since his child is at least as bad as you are, and perhaps worse, I don't think it's right to pressure him more than necessary. The same goes for his volunteer researchers.
if the OMF wasnt soliciting large donations, including from patients themselves, a lot of whom give their last dollar, etc, if they were just working on this from their own money or whatever, i wouldnt think its "fair" to pressure them. but they are a leading cfs organization, underpaid by general research standards, but probably the best funded out of any of the cfs institutes, and they are in the game of research, information, and advocacy. they also set the tone for other researchers and influence in a more indirect wya what is researched.
in my opinion, this makes the incredibly gentle pressure of asking them repeatedly in open letters to look into these things, totally warranted. not that what im doing will make a difference. which also means its fair. im hurting myself (by using precious energy trying to get them to listen) far, far more than Im hurting ron or anyone at the OMF. for all of the platform and amount of visibility i have, and all the fight in me that i have, i may as well be a flea on their back, a minor annoyance at best.
ron may be old, but i guarantee he still has more energy, and in a sense is physically younger than, me . i am totally bedridden by now, i need large doses of pain medication to even get through the day, and i have only small windows and bursts of cognitive energy, even typing this is difficult, let alone designing a website. i have a DALY score (for measuring disease burden and disability burden) far worse than the average 80 year old. my 84 year old grandmother is more active than me,.
I may pivot to talking to them, especially michael van elzakker and poly bio, once i give up on the OMF> but despite being a bit set in his ways, Ron (as well as rob phair) has the mind, and the equipment, and the engineering knowledge , to solve this disease and look for certain things in samples, in a way that many other researchers dont. which is one of the reasons im pressuring them. i think they have the tools to solve this disease, they just need to look in a different area. ron has engineering brilliance which allows him to come up with new tests and ways to look through samples. this is important for looking for nanoparticle pollution and mold spores, or unknown substances, in air samples or blood or csf samples. im not sure that u could easily do this with existing tech. i actually have quite a lot of respect for ron, just not for all of his decisions, and decisions of omission.Have you checked to see if other, younger and aggressive researchers are available?
Its complicated. the road to surgery is not very short or very easy. Im going as fast as i can to get it, but partially due to the NIH and OMF negligence, there is no non expensive way for an environmentally sensitive person with limited mobility to live anywhere, and having a dwelling is important for recovering from major surgery.May I ask once again why you haven't had your CCI surgery yet? You may be relieved of some if not many of your symptoms and I would love to see that happen to you. I'm not against you, but just want you to understand the entire picture of what's going on.