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Possible. Someone should ask.

I would be surprised if Dr. Komaroff were not right about the number. He has been tracking these publications since the early ’90s at the latest and the number has gone up slowly. His own paper in the ‘90s was a game changer; he was the first to show brain scans that distinguished our brains...

My 9-year-old grandson filmed mine. He is my personal photographer.

G If you can let me know what name it’s under, when it was sent in and a little about the subject, I can try to check on it, @Minnie .

Hoping for better days for your daughter, @Irishwasa .

My understanding is completely different. ME Action, in its recent petition, called for NIH to organize a meeting of ME experts to reach consensus on patient selection methods and criteria. This effort is to clarify the criteria, not to choose between them. Without biomarkers, all of the...

All of the Values and Policies articles are meant to encourage community discussion, so I would suggest that all of the posts above be added to the comments section after the article. And @Jonathan Edwards , would you mind saying what you posted to ME Action and where? It should not have been...

Good suggestions, @Jonathan Edwards . Some of the issues that you address are discussed in detail in the letter attached to the petition. One thing that I do want to mention is that, because RFAs are peer reviewed, they are only granted to the best in the field. The RFAs for the Cooperative...

I’m glad that you mentioned that, @strategist , because there are two types of set side funding. Within NIH, there are programs like the RFAs that resulted in the Cooperative Research Centers. NIH can internally set aside funds to fill particular research needs. The proposals are still peer...

I don’t believe in just shoveling money into a disease either, @Jonathan Edwards . You just end up with poor science. But I do believe that NIH can do a number of things to stimulate the field. These actions are a part of NIH’s current methods and can easily be utilized for our disease. I have...

Nicely done, @Jonathan Edwards !

Strays was horrible. I met him. He was a terrible scientist. At CDC, Reeves was horrible. We intensely disliked each other. But they do not make up the whole story. Many involved with this illness, even with the name and definition, were good scientists trying to understand what was going on...

I probably shouldn’t even bother writing this, but I have to point out that my early experiences with this disease were very different from what people seem to think that the US experience was at the time that I was diagnosed. I was diagnosed by a psychiatrist here in Atlanta, very shortly...

The intramural funding is always difficult to estimate. The real story here is that extramural mural funding is not growing. The RFA-funded Cooperative Research Centers were supposed to be a jumpstart for extramural research. The idea was that those researchers who applied to be funded for one...

Did you mean extramural research or the intramural study that Dr Nath is in charge of, @Binkie4 ? The intramural study is still moving along, but what NIH does most is fund extramural research. We need a vast increase in extramural funding of a wide variety of researchers.

There’s a difference between reporting on particular diseases and lobbying for them. If Congress calls NIH in to talk about this or any other disease, they would, of course, do so. But that is different from requesting funds. Congress gives NIH a bucket of money. They expect them to decide what...

Now I’m confused! What @Michiel Tack put together wasn’t a petition, as far as I understand. It was a response to ME Action’s call for community response to its Values & Policies Initiative. Anyone was welcome to write about a value that should be important to ME Action - in this case...

No reason. Go for it!

I really don’t think that ME Action is reluctant to take outsider action at all. It’s just a question of what would be effective. We just don’t have the kind of healthy support that ACT UP did. Even attending Millions Missing events puts most of us in bed for weeks. Attracting healthy allies is...

People are working on it, @debored13 . It’s harder than it sounds. If you have good ideas, they would be welcomed. The whole point of the Values & Policies Initiative was to bring in good ideas from the community. I don’t think that the inside game should be given up in favor of outsider...