Search results

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 of the executive branch of government, under the President. So Congress, which is in change of funding, can fund NIH to do a particular task, but NIH...

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 data, they can go to NIH for a larger grant. I actually believe NIH when they say that they are receiving grant proposals. All of the information that...

Without a doubt, raising funds for pilot studies is important. As long as I have been involved in the advocacy community (30 years +), pilot studies have been funded in this way. I do think, however, that we need to find a way to get into NIH’s very deep pockets as well. NIH has a good record of...

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 encouraging thing about this petition is that it’s just the first step in what is expected to be a long campaign. I am hoping that enthusiasm will grow.

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 demonstrations for various causes most of my life. Most of them do not make a ripple. DC people see so many of them that they don’t even blink at them. The...

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 would be better served by outsider action than inside. If you want to organize a particular action and can figure out how to carry it out, I’m sure...

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 rather than jumping to generalizations. It may well be that this algorithm disadvantages other groups, but we don’t know that. This study found millions of...

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 higher level of illness. There is a greater historical reluctance among Black people to turn to the health care system because of past and current poor...

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. https://www.meaction.net/event/values-policy-community-call/

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 scarcity - we shouldn’t be trying for a bigger piece of the NIH funding pie, but push for a bigger pie. Considering that the slice of the NIH pie that we get...

He was definitely talking about the NIH budget being inadequate for basic research, a complaint that is common among researchers since only a small percentage of grant proposals submitted to NIH in any field are funded. It’s a solid scientific perspective, but as a person living with this...

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 million, the NIH intramural study is about a million, and CDC is around $6 million. Are you just comparing with a particular grant?

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 address the research crisis we’re experiencing. What I like best about the letter attached to the petition is that it calls for specific actions to move...

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 right direction before I wasn’t around any more. I’m 3 weeks away from 70 myself. Did it seem to anyone else that he was very dubious about Dr Davis’...

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. Basic mechanisms will be very valuable in the general scientific understanding of the body, but they won’t lead to any help in my lifetime.

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 ethnicity dominate every aspect of the US medical system. I would be happy to address any questions that you have.