I've been away on other projects and do not have the time to participate as much as I would like. So below are some random thoughts for consideration.
I have not researched any of the ME/CFS panel members nor am I going to. One paper that we, Miller's lab, felt was significant in our research was Natelson's Spinal fluid proteins
http://www.sciencedaily.com/releases/2011/02/110223171235.htm as we conducted a mass spectrometry on a viral chip against those spinal fluid proteins. We considered it a significant milestone since it differentiated two unrelated patient communities with a control group and could lead to potential biomarkers. However, CSF would be impratical in a clinical setting based on insurance objections.
There has been ongoing discussion on various internet discussion groups concerning ME/CFS panel members. The problem in replacing any of the ME/CFS panel members is that you might get someone that is even worse than the person being replaced! It's an unknown and the thought of this should be paramount in any consideration.
More importantly and strategically, I believe strongly the ME/CFS patient community
must show a unified front against HHS and the IOM excluding of course 'advocacy organizations for obvious reasons.
Advocates:
After reviewing various internet postings, it is disconcerting to see attacks on various advocates. There are going to be differences in approach, tactics, opinions but attacking each other in public divides the community. I believe these disagreements should be
aired out privately behind the scenes via email, intermediaries, phone, private messages between the parties involved to reach a consensus if possible, by really listening to each other. Some advocates and researchers may not be cognizant of important information uncovered by the investigative research conducted here on PR, and elsewhere which should be explained to them.
IOM ME/CFS panel member:
I
f you object to a specific ME/CFS panel member, why not designate a point person to contact that panel member on behalf of the ME/CFS patient community listing the objections from the patient community.
Many of these researchers are unaware of the information discoverd by the ME/CFS patient community concerning the policies, structure and limitations on IOM panel members with regards to reviewing scientific material nor are they cognizant of prior decisions by the IOM. They
really do not understand the politics behind HHS and the IOM panel. Following the conversation, their response shoud be communicated to the ME/CFS patient community.
With that in min, I am concern about Klimas and Bateman conflict of interests regarding past, current and future NIH contracts as well as possible connections or contracts with pharmaceutical companies. I know that a particular Fibromyalgia advocacy organization was significantly disturbed concerning Bateman's connections which I posted awhile back. This is something that needs to be flushed out with these researchers. I am also concern with Klimas's seemingly flip/flop on one of her research papers concerning exercise.
NIH grants can be the lifeblood for a researcher or a researcher center. I would be curious if the researchers would come forward and state any contact with the NIH concerning future NIH grants. Perhaps, a possible FOIA inquiry should be initiated by someone?
But, again if they are dismissed from the panel, who will be their replacement? Best alternative for the ME/CFS community is voiding the entire IOM contract which I believe will never happen without a lawsuit.
Eco