Founder of Health Rising and Phoenix Rising
"We are going to ramp this up"Last month Miriam Tucker penned an article highlighting Whitney Dafoe's severe case of the ME/CFS and the many needs of the ME/CFS community. In her latest chronic fatigue syndrome article "Chronic Fatigue Syndrome Research Gains Funding, And Controversy" NIH director Francis Collins gives the strongest indication yet that real change is coming for ME/CFS. Stating that funding "will be substantially greater than the current five or six million a year" he told Tucker that "We are going to ramp this up."
"I'm optimistic. I think Francis will do a good job. He knows what he has to do. It's just very hard to do it."
Tucker also covers the recent PACE controversy in her excellent NPR article. Checking the article out and commenting on it will show NPR this is a subject they should keep covering. (These news outlets follow their page hits like hawks).
ME/CFS has been passed up too many times when funding was good for the ME/CFS community not to expect something significant. How significant only time will tell. In her latest blog "The NIH Plan" Jenny Spotila suggests a realistic expectation might be around $7-10 million - an increase but not a great increase, she noted "given the needs identified in the P2P report".
She felt this announcement was a promising start but that "until we actually see how much money is on the table and how it’s spent, we can’t judge the quality of the effort."
I would tend to agree. There is still much we don't know. My blog on the announcement is on hold pending answers to questions posed to the NIH. Thus far the answers I've received suggest that we haven't gotten as far into NINDS as most believe.
The best indication that the NIH is serious about this, though, are Collin's now numerous statements affirming his commitment to change.