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@Colleen Steckel , as we have discussed before, here in the US, essentially no one was being diagnosed with ME before the creation of the diagnosis of CFS in the late 1980’s. The various definitions, rather than delineating different diseases represent a variety of efforts to diagnose what Dr...

I felt a bit frustrated that they don’t recognize that there have been millions of dollars of patient funded research studies for the past 30 years. There were quite a few wealthy people with this disease who were regular donors back in the ‘90s and afterwards. Quite a few of the researchers...

There are some good questions submitted jointly by ME Action and Solve in the link above. I’ll repost the link to just the letter here. https://www.meaction.net/wp-content/uploads/2021/10/NIH-telebriefing-questions-Oct-2021.pdf

Yep - they will try to pass it as a separate bill.

My dream outcome for the intramural study is actually not that they restart it, but that something so intriguing comes out of the preliminary results that they promptly fund an RFA - set-aside funding - so that extramural researchers can follow up on it. Might as well dream big!

Sorry! I should have included the link, in case anyone wants to attend. https://sites.google.com/massmecfs.org/2021annualmeeting

Dr. Nath may have good information on the 23rd.

It’s in the budget currently being considered by Congress. I would imagine that a lot of Dr Collins’s remaining time will be spent pushing this forward. He is very good at obtaining funding from Congress. From NIH: To improve the U.S. government’s capabilities to speed research that can improve...

Fewer patients for sure, although it was never intended to be a large study. When the pandemic hit, all intramural studies at NIH were stopped. The decision was made to publish what they had and not start it back up when NIH reopened for intramural studies. I wish that they had been able to...

If Congress passes this new program, the new Director could use it to make much more rapid progress in ME/CFS research. (This is from the NIH piece on Dr. Collins above.) “All these efforts have set the stage for a new component of NIH, known as the Advanced Research Project Agency for Health...

I have to disagree. Collins became Director in 2009. ME was sabotaged long before that. He did not do even remotely as much as we would have liked him to do. But in 2009 when he came in, we were bogged down in the XMRV debacle. ( For those of you who missed XMRV, just be happy.) We had less than...

Lots of information here. https://www.nih.gov/news-events/news-releases/francis-collins-step-down-director-national-institutes-health

He’s been Director longer than any previous NIH Director. He has often spoken about getting back to his own research on diabetes. If he’s going to do it, now is the time. He’s 71.

He’s not stepping down immediately. It’s at the end of the year.

I am so hoping that his successor knows anything at all about ME/CFS.

My onset was very rapid, but I can’t associate it with any variety of infection. The same was true for my daughter, 8 years later, when we were living in a different house in a different state. There was no acute phase for either of us. We both were just abruptly very ill. Subclinical infection...

Is there and published research on the ALA-mercury fillings connection? Does anyone know what the negative effects are supposed to be? (I do take ALA, but I wouldn’t swear that I have any effects from it one way or the other.)

Because it was a closed meeting with information that has not been made public, Jaime has said that she can’t disclose any details. No one can. It was a chance for invited researchers to bounce ideas off of each other, rather than to report solid research results.

Thanks for posting!

Thanks for posting!