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Actually I tend to ignore the U.K. politics. We have our own issues here in the US that I focus my attention on. I tried Gabapentin, but it was not useful. I hope you can get some relief.

Hello! Is there a published list of drugs the NHS approves? In the US, a doctor can only write an Rx for an FDA approved drug. If it’s repurposed (off label) then health insurance won’t pay for it. It’s hard for me to make a suggestion, because I don’t know what’s causing your pain. I no...

Then let’s all agree to use our voting rights. It’s been 5 months, since we opened our doors, so how about we vote at 6 months?

I would like this too, but in order for it to happen it must be baked into the forum rules. Maybe we could exercise our voting rights, so that the silent majority could get a chance to be heard? I learn a lot by reading different viewpoints. I enjoy reading @Gingergrrl posts. I hope we can...

I agree with @Bill constructive criticism. I think David’s message would be more effective if he opted to stick with reporting on the Science. This site is called “Science For ME” for a reason. We are a forum where different viewpoints are supposed to be welcome. If we no longer value Science...

I feel Jen has been over criticized in two public threads. I feel this can leave a very negative impression about how S4ME treats a PwME Advocate, with ME, who uses a wheelchair, and spends a lot of time in bed. I hoped we could support Jen, who has done so much to bring global ME awareness...

“It was a visit to Redwood City to see a specialist named Dr. Michael Dillingham to solve the problem. “ I visited SOAR, in the past. Lots of top notch folks work there! Re Dr D specifically, who is an orthopedic surgeon: Athletic Affiliations San Francisco Giants, Team Physician, 2011-2016...

Yes, a great asset! I read his bio, and felt he understood the nuts and bolts of what type of data to collect and how to use it. I hope he continues studying ME, because we need people like him to delve deeper. Edited to add his bio: https://www.jax.org/research-and-faculty/faculty/peter-robinson#

I like Twitter, as posters have to get right to the point. I much prefer Twitter over reading paragraphs in FB. I wish we limited the number of characters here on S4ME; sometimes I feel like I am reading a book. I am fine with Jen using Twitter. I think that Twitter may be the best place to...

11% raised, 67 donors, 33 days left!! Bump!

I read the same tweets and my takeaway was that one individual from the U.K. was called out, certainly not the entire U.K. Twitter is not a format for everyone. But it’s highly interactive, and you can always post a tweet if you desire more clarity.

I’m embarrassed that after Jen read this thread, she felt compelled enough to post and defend herself. Jen deserves a lot better!

I feel this thread carries some negative overtones about Jen. If it’s the intention of this thread to discourage ME advocacy, then IMO, you have succeeded. If people are unhappy with Unrest, then they are free to make their own film. If people are unhappy with Jen, then they are free to become...

Way too much COI for my taste! 100% of the study authors are tied to Aurin Biotech! (Same company that touts the development of the simple saliva test, they claim, can diagnose Alzheimer’s disease, as well as predict its future onset). https://www.j-alz.com/manuscript-disclosures/17-0706r...

I Agree. There are other scientific studies researching Alzheimer’s, that need to continue. IMO prescribing Ibuprofen as a treatment for Alzheimer’s, is the equivalent of CBT/GET for ME. It’s a cop out, and both have potential dangerous side effects.

We already know that long term use increases the risk of a heart attack, stroke, and ulcers, which may cause death. Consumers erroneously assume just because a drug can be purchased over the counter, that it is safe. Like any drug, it’s important to follow up with your doctor, so you can be...

It’s okay, another time then.

It’s a combo of genetics, environmental exposure, along with a drug in question, along with history of all drugs taken. I feel there is a footprint left behind from choices we consent to, and/or have no control over.

I would be more concerned about the accuracy of the test.

If a large database to capture these data points, I feel we could start to make sense out of things.