FWIW, if it has any bearing on this topic, I remember from the earliest days that
A) The exact testing done at WPI for the Science article was not possible for the Public because it was *too expensive*. I felt I was learning something re: new testing in Science discoveries, but it was only partially "learning", because I did not know exactly how testing was developed or done by Lombardi et al for the Science article, or how a more affordable method could be designed to offer to patients/public.
{perhaps this is about the trizoral? that V is talking about, or the multiple tests that WD is talking about, or...any number of things }
I did already know that 1st tests to the Public, after a discovery are not the final determining tests...that they must be incrementally perfected. I saw this, in the AIDS tests (false positives or negatives, later a different 2nd testing required to confirm, finally one accurate test, etc. And, they're still improving it?)
http://www.hivaidscare.com/hivtesting.php?acode=naAny kind of diagnostic technology undergoes the same processes...when is the test offered to Public? and that it will initially be experimental, expensive, etc. To be improved upon, as time goes on, or discarded.
2) I remember a clamoring among patients for access to testing, immediately. I think there is a lot of history, precedent and debate on weighing the issue of how soon to offer testing, or how long to wait for it to be perfected. Ethical, humanitarian, economic, and political debates.
{side note " It is still noted that possible dangers of the Polio vaccine may have been due to the Public's and Political demand for quick resolution to the terrifying epidemic sweeping the land, and the possibly too hasty release of the said vaccine(s). }
3) "Validated" test. I remember, after Judy's 1st Presentation, asking what does that mean ? And immediately discerning that the answer was far more complicated than I would wish, or could hope to explain.
So, the best I could do was simply pass on that the XMRV test about to be offered to patients ("within the week") was *validated*.
http://www.oie.int/fileadmin/Home/eng/Health_standards/tahm/1.1.04_VALID.pdfThe ever-changing repertoire of new and unique diagnostic reagents coupled with many novel
assay platforms and protocols has precipitated discussions about how to properly validate these
assays
4) I remember, and immediately passed on that Judy said the test availability to the Public was requiring negotiations with multiple laboratories, with various criteria required for going forward...affordability and Govt and Insurance approval, for examples of priorities. This conversation included the awareness of Judy and the WPI of the economic issues for patients, and the WPI's committment to full test-accessability being a top priority.
{I later imagined this being a part of the Whittemores' trip to Washington DC }
Again, I was seeing what a very complex, multi-pronged endeavor this is and would be. Getting a newly discovered pathogen tested
in ME patients/the general public/the world.
personal note:
I began to really comprehend and bring up for discussion the issues of the
Infrastructure for testing and treatment that our global ME community is needing and demanding. I suggested, then kind of pleaded that we use our "waiting" time to familiarize ourselves with these necessary operational challenges and the context of others that may be preparing for them.
samples of this larger, critical issue:
http://ftguonline.org/ftgu-232/index.php/ftgu/article/view/1951/3898{Might as well view it from a 3rd world perspective, since this is where ME and the US Health Care System in general has ended up
http://www.cdc.gov/ostlts/foafaq.htmlC4. What is the definition of "core public health infrastructure"?
“Core public health infrastructure” includes continuous performance measurement and quality improvement capacity to assure that the systems supporting public health services and programs are robust and efficient; workforce capacity and competency; laboratory systems; health information and systems, and health information analysis for decision making; communications; legal authorities; financing; other relevant components of organizational capacity; and other related activities.
C5. What are the "key areas" for infrastructure investments?
The "key areas" for infrastructure investments needed to create a more efficient and effective public health service delivery system include improvements in the following:
Health Promotion and Disease Prevention
Public Health Policy and Public Health Law
Health IT and Communications Infrastructure
Workforce and Systems Development
Detailed information about each of the "key areas" can be found in the FOA.
5) I am told that XMRV blood test packages were clearly marked as experimental or for research purposes only
6) A consequence of the above complexities, and of words like investigation, lawsuits and fraud flying around ....generally sending anyone to Legal Counsel --- just might be only tightly controlled
information and answers....from all parties involved. (Perhaps instructed by Legal Counsel )
This would drive me batty, and information clearly has to get out in timely fashion.. But I can hardly see anything else, but careful soul-searching and intense negotiations privately...among numerous parties...giving limited tidbits meanwhile.
Robyn, I was laughing...traumatised hysterical laughing, no doubt...at your summarizing the experience of trying to get answers. You've just described what living in this Corporate-run-mentality world is for most people...
just trying to survive...regarding any critical issue that their life depends on. Non answers from non people. Yet, you could have sworn you were speaking to an actual person.
god, my brain just blew out...bye for now
