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Dr. Bateman: Global Progress Report Nov 2nd

MEMum

Senior Member
Messages
440
Here is something interesting, at about 36:50, primary biliary cirrhosis patients, who also have anti-mitochondrial antibodies, also demonstrate what appears to be PEM.

Julia Newton in UK has studied ME alongside PBC, quite possibly because she could get funding for PBC resesarch.
Her papers are largely re POTS etc.
 

LaurelW

Senior Member
Messages
643
Location
Utah
Thanks for posting the contents of the talk. I just want to add a bit more detail about PEM. Dr. Bateman said that intense exercise for 30 seconds to 2 minutes more episodically doesn't cause as much PEM as more prolonged, less intense exercise. The Drs. Light did a 25 minute bicycle test of medium intensity in the original gene expression studies.
This information is really useful to me to help regulate my activities. Even if I use a heart rate monitor and keep below what I figure is my anaerobic threshhold for a longer period, I get more PEM than breaking it up into really short segments of higher intensity.
 

Nielk

Senior Member
Messages
6,970
Forgive and forget? Are you kidding me? Because they have said that they will issue two RFAs?

Even if they apologize and pay back 8 billion dollars for the past funding due to us, how are they going to bring back all the thousands of lives lost?

I attended the IACFSME conference and was very excited about the many international researchers presenting their abstracts and study results. Some were very interesting and promising but in every case, they were small studies that needed large scale replications.

The researchers are there and they want to do the work, it is NIH that is falling short.

We don't need CDC doing a study that five years in has nothing to show for it yet. They are only ready to publish their method of study so far and they refuse to do a second day exercise test on patients. Someone asked the question at the conference of Dane Cook who is performing the exercise study for the CDC, about the second day exercise and he replied that they don't need it for what they are looking for. Which makes perfect sense because Dr. Unger if the CDC does not want to find PEM!

What we need is extramural funding for our expert researchers to continue their work and to do large scale replications INDEPENDENT from the gov't health agencies. If Collins is so serious about helping us, he should go to congress and champion for us asking for 2 billion dollars to start us off. That is what serious looks like.