Our lived experience is important of course, but t's just not the same thing as having a PhD in some field that can help us. I can no more research potential cures than I can land a crashing jumbo jet even though I have flown on a plane many times, and know just how that feels, including some very scary turbulence.
im not aware of Jeff Wood having a PhD, but he did more to advance the theory of structural issues, and practically pioneered it; than any scientist or doctor in the ME/CFS field. I'm not in favor of arguments based on credentialism. We have forums like this and Science for ME, not just to vent , but to figure out this problem together. If you think that is totally useless, thats fine, but while I may be alone in my opinion of the OMF (Here--in the environmental illness world there are many who share it), I'm pretty sure I'm not alone here in thinking that patients can figure out scientific theories and look at evidence.
Look, I'm preparing for a cci surgery, and there are so many debates and controversies, that there was no way I could just go to a surgeon and trust that "expert" to figure it out for me. I needed to look at every paper there was on imaging and standard diagnostic metrics on mri or fluoroscopy before I was able to even know this was a valuable surgery I needed and not just a quack fad procedure. if I simply listened to the doctor, I'd have to just flip a coin, bc different doctors say different things, so id have to do a coin flip to see which one to listen to. but instead, i researched, which is more work than a coin flip, but probably a sounder method. this is not necessarily terribly complex stuff, but I read all of the studies by the group of neurosurgeons that created a new standard group of metrics for deciding the diagnosis of craniocervical instability and whether to operate. without reading these studies, and searching for ones that had healthy controls' measurements (of which there were some but shockingly few), how would I have known that these new standard metrics (which some doctors disagree with and dont use) by which I was diagnosed, were even valid? unfortunately, we have to do our own research--it tires me a lot and I don't enjoy it that much. I wanted to be a musician, not a scientist. And Ive never claimed to know more than someone who has a phd, but I think the idea that all we can offer is discussion of "lived experience", and that we cant contribute to research of cures, is extremely harmful. there is a small subforum here for emotional support, and thats extremely important, but again, its not the only reason we're here, many patients have used this forum to advance understanding of the scientific theories behind me/cfs etiology.
I have no problem with anyone saying "environmental aspects have nothing to do with ME/CFS" or totally discounting my theories. But what you're saying goes beyond that. You are diminishing the abilities and agencies of patients. Patients have contributed to research in more ways than detailing their symptoms and "lived experience". They have read the literature thoroughly and constructed scientific theories of the etiology of this disease based on the existing literature. They have done experiments, drug trials or trials of other things, often n=1, but often in greater numbers than that. I have seen some incredible work on this forum--inspiring work. even when its on theories that i disagree with , I don't shoot it down b/c the sheer talent and will people are applying to this work is so incredible. one example I remember in particular is
@Hip doing the pharmacokinetic calculations to find out what the bioavailable dose of a given antipurinergic drug was, for a patient that was thoroughly testing robert naviaux's theory of purinergic antagonism. This was incredible teamwork. that patient, a Polish man who I don't recall his name, had done lots of theoretical work building on naviaux's and the omfs ideas, but taking them way further. part of the hypothesis to be tested was that p2x antagonists (iirc, it was awhile ago) could put ME/CFS into remission. So he came up with that hypothesis and found all of the available p2x antagonists, but
@Hip was the one who did the actual, complex pharmacokinetic calculations to find out what was the lowest dose that each one was active at, but also what the human LD50 would be, so that this person could figure out their dose. and so, this theory was tested. far faster than naviaux could, with waiting years for fda approval and/or funding for a simple drug trial.
thats just one example. but it inspired me a lot. It inspired me to research this disease myself, because i realized i couldnt wait for the science, and that even the best me/cfs doctors couldnt save me with current knowledge. but this was also a positive example that taught me that science is a process that anyone can do, rather than an object that one attains with credentials.
really, thats the last word i have on the subject.
It doesnt really bother me when people disagree with me about the OMF, or environmental toxins.
It does bother me a lot when people say that people with this disease that don't have PhDs simply cannot contribute anything meaningful to the research. I think this is not only deeply hurtful, but untrue. I'm actually shocked to hear that from someone on this forum.
It's not only about cognitive capacity. It's also about motivations, and skin in the game, and also regulatory things that slow down formal scientific process, so that patients trying things on their own can be faster. Jen Brea isn't just a great filmmaker. She's someone who figured out her own illness, and created scientific theories based on what she found. Yes, she's very well formally educated, but not in science. She didnt wait for the OMF or naviaux or david kaufman, or maureen hanson/cornell to cure her. She did get "cured" by a doctor, or team of doctors, but she led them. Its not like the doctor who operated on her thought it would put her ME/CFS into remission, and yet she knew of that connection bc of patients experimenting and theorizing. same for jeff wood. similar stories for Lisa Petrison or Erik Johnson, or Karen Dean, or many others i know. Now, am I saying that formal scientific research is useless bc patients have got this locked down? No, emphatically. We absolutely need formal scientific research, we need NIH funding, we need more of both. But as to the idea that patients cannot figure out a cure, that they cant understand the theory and the evidence, I think this has deep potential to harm people, who may already feel disempowered, and its just untrue. I implore you to reconsider.
This is not to toot my own horn, I'm not the smartest nor best patient researcher here, not by a long shot. I would probably put
@Hip up there, or maybe Jen Brea, or Jeff Wood, or the polish patient-researcher i was speaking of earlier, who Hip may know (i forget his handle). Of course, sometimes the smartest person isnt the one who makes the most important discovery, sometimes its about luck, or lack of cognitive biases that more educated people have, or something like that.
I think the chance that any individual patient has to figure out this disease by researching on their own is extremely low. The chance that we can figure it out as a patient community researching together is also low, if not as low. The chance for an institution like the OMF to figure it out on their own with current funding levels is also low. But the chance for patients with institituional cooperation and support, working with orgs like the OMF, or polybio, and with better funding, from the NIH; to figure it out, would be the highest chance we have (although maybe still low in an absolute sense). We don't have very good odds no matter what we do, but researching and experimenting and striving to understand the disease etiology is something that can certainly collectively increase our odds substantially.
. It would be nice to have even a little researh connecting the two before surgery.