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I think that proving deliberate malpractice is going to be very hard. Since there is no evidence that any treatment is useful, CDC can point to “evidence” in peer reviewed journals from “respected” researchers in GB to back up their recommendations. Especially since the usual statement from CDC...

My own feeling is that Dr Unger is moving forward, but she is moving as slowly as humanly possible. I think that continued pressure from the community and from Congress are the only things that will get her to move more quickly.

There is actually no way to tell whether you were deliberately shut out of a call or if they just didn’t get to your call. I’m pretty sure that all of us have been left out at one time or another. The issue of denouncing GET & CBT were brought up by at least 2 other callers and received a poor...

Absolutely. Everyone has their own opinion about where to donate.

I know. But having been funded in the past is no guarantee that your current research proposal is an excellent one. Even the best researchers can write flawed proposals. Ideally the review system gives the researcher a chance to make their proposal even better.

It’s probably just me, but I am very uncomfortable with funding research with GoFundMe. Where are the checks and balances? Where are the other scientists asking hard questions? If even the best scientists submit a grant proposal, it needs to be evaluated for feasibility, significance, lots of...

Complete rubbish. I wouldn’t trust those results for a minute.

I do greatly appreciate the work that @Tom Kindlon and @Michiel Tack have done on this. It is clear that the diagnosis you receive depends more on when and where you were diagnosed far more than any other considerations. I have been concerned for some time that we are excluding patients from...

The study isn’t designed to be open ended. The original study design was for a three year period. I wouldn’t expect the most severely ill to participate, but in my opinion they are probably not the best candidates for this cohort anyway. Being bedridden and trying numerous treatments cause...

I do think that it is important to note that all of the patients that I know of who have participated in this effort have found it to be a positive experience. If I were in the range of the cohort being studied, I would not hesitate to participate. This is an unusual opportunity - NIH doesn’t do...

I think that the work that OMF is going is a great step forward, but there are not even close to the number of researchers that we need looking at this disease. Suppose OMF does its best work, but comes up empty handed? This is certainly not uncommon in science. We need dozens of research groups...

I agree - I have no problem saying that we are a special case. I generally say that they broke our research community and they have to fix it. And there are things that we can fight for and win. We desperately need more set-aside funding. But at the end of the day, proposals will still have to...

But where does he get funding for his other work? You are right in that NIH doesn’t like to find pilot studies. The ME/CFS community has been funding those since at least the late ‘80s. The Ramsay Grants from Solve and funding from OMF do a great job of that. among others. I assume that similar...

This baffles me entirely. All NIH grant proposals have a high rejection rate. The rate for ME/CFS grants is higher than the average at this point. NIH is flooded with proposals in other fields. I wholeheartedly support the 5 demands that ME Action made because they were specific actions that...

I’m thinking of things like this. https://www.nimh.nih.gov/funding/training/funding-opportunities-for-early-career-investigators.shtml Of course you have to find a job after you PhD, but this field shouldn’t be considered off limits for young researchers.

T I f this is true, I am very unhappy about that message. If not now, when? Funding for ME/CFS will only grow if people submit proposals. If the researchers who have NIH funding are not encouraging young researchers to apply for NIH funding, how can we make progress? While activists are...

I have lots of issues with NIH, but they are very much aware of the lack of grant applications. The big question is what they are willing to do about it. At the moment, they are willing to do very little. Their tried-and-true method for growing the field is the RFAs that created the Cooperative...

What I wish is that we could get input from current researchers about why the field is steadily shrinking at a time when the barriers to receiving NIH funding have dropped. Clearly NIH should do whatever it can to change the current situation, but this strikes me as a difficult problem. Just...

I agree. CDC has said that it is expanding its long-running multisite study to include a study of pediatric patients.

I think that Dr Collins was referring to an act of Congress accompanied by funding rather that just appropriations language. And I think that it’s important to remember that he’s not blocking individual grants. Researchers can apply for funding at any time. ME/CFS have at least the same chance...