I may be wrong, but I don’t think that NIH is allowed to advocate for particular diseases. I know that CDC cannot. This is because they are a part...
No argument from me! Set aside funding is essential at this point.
There is a difference between the Ramsey Grants and the NIH grants, though. Ramsey Grants are preliminary studies. When they obtain promising...
Without a doubt, raising funds for pilot studies is important. As long as I have been involved in the advocacy community (30 years +), pilot...
I would add to @rvallee’s reasons advocacy fatigue. Many people who have been ill for a long time have signed a lot of petitions to no avail. The...
I may be wrong, but I have doubts that a demonstration would be likely to change scientific decisions. I grew up in DC, and participated in...
ME Action does not rule out outsider action. The problem is finding people with enough health to manage it, as well as having a specific goal that...
But in a case like this, where one group in particular is disadvantaged by an algorithm, it seems reasonable to look at that particular case...
The article states that lower use of the health care system results in an evaluation that Black patients are less sick rather than their actual...
Thanks! There is a community call on October 30 in case you or anyone else wants to bring the points you made into the conversation....
No response yet from ME Action, @Michiel Tack ?
I think that he’ll keep doing good work and encourage others to join in. But he also said that we should stop operating from a position of...
He was definitely talking about the NIH budget being inadequate for basic research, a complaint that is common among researchers since only a...
I am confused. What is the $1.5 million that you are referring to here? Annually for ME/CFS, the total NIH extramural funding is about $13...
Yep - it’s a long report. @Michiel Tack gave a good summary of it on the thread above. It’s not a terrible report; it’s just insufficient to...
There is a link to a very long and detailed letter addressed to Dr Koroshetz in the post at the top. Nearly 600 people have signed since this morning.
It’s the plan that was called for by the he NANDS Council Working Group report and that was discussed in the last ME/CFS community update call.
I feel the same about younger people, @Trish - especially my daughter and grandsons. I just wanted so many to know that we were moving in the...
I understand why he wants to pull back and look at basic mechanisms, but that is seriously hard to hear for someone who has been sick for decades....
Thanks, @Michiel Tack! I know that most people in this thread are not from the US and that it’s difficult to picture the extent to which race and...
Separate names with a comma.
