Search results

Thank you all for your kind words!

I know that the whole ME/CFS section was rewritten last year, but I am no longer well enough to go through it. It would definitely be worthwhile to see what changes have been made.

Thanks, Tom!

I have never met Dr Walitt, but I have met Dr Nath. I think that you may be overestimating the influence of Dr Walitt’s previous views on the ME/CFS community here. He was not a well know researcher and I think that he is someone who could easily change his mind about this disease when presented...

I’m feeling a bit like a contrarian, but I think that you are underestimating the respect and authority that Dr. Collins carried as Director of NIH. I know that our community was deeply disappointed that he did not do more for our disease, but this project was his baby. Dr. Nath was doing lots...

I actually don’t think that this is true. The scientific community knows that intramural studies at NIH are rare and often small, but deep. From the beginning, Nath said that the purpose was to use all of NIH’s tools to see what they could find, then pass it over to extramural researchers to do...

My apologies - I am very crashed and had trouble reading all that was written above, so please forgive me if all of this was said. But I wanted too say that NIH does very little intramural research. This study was done because of Dr. Collins’ direct request to Dr. Nath. When they do an...

No one gets everything right. Questions, question and more questions is the only way to reach a higher level of scientific rigor. Even the most brilliant scientists get things wrong. And with our disease, no one is a real expert. People with good intentions are wrong all the time. Dr. Bateman is...

Having closed meetings makes sense to me. It gives them a chance to throw out ideas and have other people shoot them down if they are unsound. Our community has a tendency to grab onto ideas whether they have any basis or not. Everyone here could probably name a few. A lot of our funding comes...

Absolutely true. We are looking at a slide with absolutely no context that was presented at a closed meeting. It was probably a mistake for Bateman to allow it to be posted. Closed meetings are closed for a reason.

Thanks, Andy. They are aware.

I know that I have said this many times before, but if they can do a pilot study and get good results, hopefully published results, the likelihood of getting NIH funding goes way up. If you look at the researchers who have been funded, that’s what the vast majority have done. I know that a lot...

In fact, this isn’t surprising since Congress allocated the funding specifically for Long COVID. It would be possible to be more inclusive of ME/CFS as a comparative group to Long COVID, but so far, there is no commitment to do so.

They have said it a bunch of times. Here’s one: “In fact, at an NIH RECOVER initiative public briefing on September 15th where a $470M grantto NYU was announced, the principal investigator Dr. Stuart Katz said that their research would not include other diseases as comparator groups such as...

The only problem is that the $1.15B is for Long COVID. If we are lucky, some of the work will also help us, but I really hate depending on luck. Especially when it has been explicitly stated that these funds cannot be used for ME/CFS studies .

I hope that Solve will ask serious questions about Ampligen. I completely want guaranteed access for those patients who have left their homes and families and moved to Lake Tahoe and are certain that they are benefiting from Ampligen. But back when Ampligen was turned down for approval by FDA...

Thanks so much, Tom. We did each try to emphasize a different aspect of this disease.

I know that it’s different in the UK, but most people in the US have no idea what ME is. In fact, I would argue that most patients in the US don’t call this disease ME - they just call it CFS still. ME/CFS is the preferred term with researchers, government agencies, and many of the advocates who...

I haven’t read this one myself, but I have seen it mentioned positively. How Many Marbles Do YOU Have?: Helping Children Understand The limitations of Those With Chronic Fatigue Syndrome and Fibromyalgia

From my own experience with my daughter who became ill with ME in high school and remained ill until she was fortunate enough to have the well known pregnancy remission - 11 years - I agree with you completely. Sometimes it feels like juggling a dozen balls at once, but being sure that a child...