Collins in (last?) ME/CFS Meeting Acknowledges Disservice to ME/CFS

[Cort]

From http://solvecfs.org/a-candid-discussion-with-nih-director-francis-collins/

We're not getting nearly what we want (and deserve and need_ but we've moved farther with Collins than with anyone else. In fact, its not even close. While he clearly has a commitment to this disease, other NIH directors wouldn't even discuss us - let alone acknowledge that they screwed up. Let's hope - no let's pray that he sticks around!

If he doesn't let's make sure that we acknowledge him.

Dr. Collins could not offer insight as to the future of his position at the NIH but agreed that the vital progress ME/CFS has made thus far must be protected and bolstered. Dr. Collins acknowledged the past disservice and delay in regard to ME/CFS and committed to continue to support progress moving forward.

Dr. Collins also addressed the recent lecture conducted by the controversial Dr. Shorter and acknowledged the strong response of the patient community. Dr. Collins assured Carol and Zaher that the incident would not impede progress on the disease and committed to ensuring that the NIH would continue to use science and research to guide its decision-making process. Dr. Collins then strongly urged SMCI to continue building bridges in order to bring the ME/CFS community together.

SMCI President Carol Head said of the meeting, “It’s very rare for any disease to receive such a high-level meeting—and we recognize that it indicates Dr. Collins’ commitment to ME/CFS. And at the same time, we cannot predict what will occur if a new NIH director is appointed.”

 

[weyland]

Talk is cheap. I'll wait until we see the actions, if any, that are a result of his words before giving any praise. Frankly, his responses to people that have contacted him directly with large, valid concerns have been inadequate at best.

Given the possibility that all his words will be wiped out by the incoming administration, it's not looking so good to me.

 

[Cort]

Talk is cheap. I'll wait until we see the actions, if any, that are a result of his words before giving any praise. Frankly, his responses to people that have contacted him directly with large, valid concerns have been inadequate at best.

Given the possibility that all his words will be wiped out by the incoming administration, it's not looking so good to me.

There's a difference between being adequate and moving forward. We can still move forward without being given what we need and deserve - and we can still fall back into no progress at all.

• With Collins we have at least a tripling of our funding of two years ago or so ago.
• Research Centers on tap
• A very large intramural clinical study
• An enlarged and invigorated working group'=

Before Collins made his promises we were stuck in the same place we'd been for 10 or 15 years