Looking over my notes from the past two days, I found some points to address.
1. The first one clearly is that they should support an accurate case definition which is both sensitive and selective, giving priority to selectivity--in other words, a narrower, more specific definition. The Epidemiologist, Dr. Nacul explained exactly why this is so. He showed how Fukuda leaves itself open to far too many possible combinations of symptoms which don't have key characteristics of ME/CFS. Dr. Jason went through this too, with the full analysis of the 8 definitions.
2. The second is to establish valid biomarkers and tests.
3. Treatments which have already been shown to be effective in at least well characterized patients or subgroups, such as Ampligen and Rituxan, ought to be studied conclusively so they could become approved.
4. However, as far as other treatments already accepted or known to be useful in sometimes overlapping, co-morbid or similar conditions, these treatments ought NOT to be assumed to be useful in ME/CFS. Dr. Susan Maier in her opening talk on Monday proposed this idea and it seemed to me implied with the Mapp (?) model of collaboration with research into other conditions with some similarity. As Dr. Klimas clearly stated at the end of Day 2, it is necessary to test IN our patient population and not just generalize from other conditions. She gave the example of Dr. Peter Rowe assuming that Fludrocortisone would be as useful in our population as in others with Orthostatic Intolerance but this turned out not to be so.
Two other glaring examples of treatments used for other conditions which do not work for us:
a. Anti-depressants which work for FM and for Depression but which make people with ME/CFS, who have been shown to have upregulated serotonergic pathways/levels, worse.
b. CBT and GET which have been known to work for patients who are depressed--known for at least 30 years as the only two non drug treatments which can help Depression--this was generalized to us by the British psych researchers. Because the definition for CFS used was so broad and non-specific, and because it applied equally well to depressed patients, and because there are far more depressed people than those with ME/CFS, the numbers of primarily depressed patients in these studies could overwhelm our numbers and shift the findings to what applied to them, not us.Those studies that Dr. Nelson admired so much for their methods might have been fine as studies--only they weren't studying ME/CFS. They were studying Depression and incorporating depressed patients as subjects, and their results apply predominantly therefore to this group.
The call is for more money, but no amount of money will help if the research done does not apply to us. Neither should studies be designed and chosen on the basis of what just seems "interesting" to particular researchers or what is most high tech or advanced. The research needs to be selected on the basis of how well it improves OUR QUALITY OF LIFE. And whenever treatments are found, they need to be affordable and accessible to everyone.
, so perhaps the tag was meant to tie into something else that I have posted? 
