Even if all she does is continue with a small amount of innocuous research using "Empirical" inclusion, that would still hurt us because it doesn't tell anyone a thing about the disease we actually have, but it would produce paper with the disease title assigned to us on them (and it spends money and gives Congress the impression something is being done for us).
And the results will probably conflict with past and/or future research, once again looking like one can't find consistent findings with the illness. Or perhaps even putting researchers off looking again at a topic because the CDC research showed nothing.
I hope Dr. Unger reaches out to clinicians who deal with ME/CFS patients regularly and takes their input seriously. My experience has been that pathologists are smart people but they interact usually with other doctors, lab staff, medical staff rather than patients directly. So it behooves her to try to get patient or clinician input as much as possible; I know she is meeting with patient groups in the near future and I appreciate that.
I have the feeling that they almost believe that they should avoid doctors - which I think has distorted their understanding of ME/CFS greatly. I feel if they could bridge that gap the program would be in alot better shape. I wonder if there's an institutional bias against using any data other than that derived from studies. I don't know.
Indeed Dr. Unger is impressive in all ways. However, after thirty plus years of the CDC doing everything possible to damage and discredit ME/CFS and label us as severe mental patients, I have NO faith whatsoever that the CDC and Dr. Unger will do much of anything of value for us. I hope I am very wrong but 30 years of a continued unethical and illegal pattern is pretty telling. Unger also went along with Reeve's and showed that she did NOT have the balls to stand up against unethical behavior. Her tune may have changed a bit after being put into the lead position for CDC/CFS but I am still not seeing changes to the CDC/CFS page or other major turn arounds in ME/CFS research, etc.
In my opinion, I would vastly prefer that the CDC remove itself from any and all research on ME/CFS. The funding for CDC/CFS is so very little as to not be an issue. But the damage that they have done and can continue to do with that tiny amount was/is immense. I do NOT trust the CDC to deal with us in an ethical manner. So, for me: Get the CDC out of ME/CFS research. Period.
That is an idea. Honestly, and I think alot of people won't believe me, but in the middle of the Program evaluation period for the CDC, I asked Kim McCleary about 'losing the CDC program' and I was shocked when she said paraphrasing 'It might be better that it disappears than continues on the way it is - as in its doing harm than good.
We'll see how much, if any change, DR. Unger brings to the department. She does not look the part of a dynamic leader (Reeves certainly looked that part - with that bald head and that scowl) but you never know...She has never lead a department before...she must have her own ideas...she must have some disagreements with past emphases...
There must have been some reason they got rid of Reeves...They were obviously looking for some change. All we know I think is that we have his alter ego in there - self effacing, diplomatic...were those the only changes they were looking for...We'll see.
Agreed, I believe given our lack of funding the small studies that usually occur in CFS research that we absolutely have a more tight-knit group to study. To increase the number of subsets present as they did with the ED and NOT increase study size = is almost criminal. Its a recipe for nothing but the lowest common denominators like cortisol popping out.