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That makes sense. I also take NAC which is the precursor to Glutathione.

This is morally wrong and sad that any of us feel we need to stay quiet. It reminds me of “children should be seen but not heard”.

I would assume the people who have significantly improved and resumed their lives would not want to look back. I know a few PwME who are purposely uninformed. They prefer to not think about it. I try to tell them about the latest research & advocacy, but they don’t seem interested. This...

I would like to see the researchers listen to PwME (and their doctors). I feel there is a knowledge gap that needs to be closed. If this forum can open up a dialogue, then the patients could teach the researchers, and we could speed things. Would be nice to get the repurposed meds into phase 3...

And to add to your wise comments, Jen remains upbeat, positive, and compassionate while she is traveling to attend film screenings and interviews.

I doubt the female patient RD is referring to thinks it was an “accidental discovery”. But glad to hear RD is finally realizing there are several drugs that help PwME.

I purchase Cyanocobalamine online; it’s very affordable. I pay about $1 per injection (plus the small cost for the disposable syringe needle). I get 10 injections per vial. Even if you spend a lot at the compounding pharmacy, you may still be allergic to the seal, which you may come in contact...

My ME specialist has been using cyanocobalamin for many years, but offers it only to patients who he feels might respond favorably; and then out of that group only the ones who derive a benefit continue with the protocol. He has 30 years of experience, and tracks my progress monthly. I...

I inject myself weekly, 1 mg, of cyanocobalamin. Last year I received a shot in the doctors office and felt no benefit. This year, after adding another Rx to my ME cocktail, I tried again (same brand, same strength). This time I felt slightly better (better sleep, improved mood, and a bit more...

I live in the U.S. and find that people use many terms to intentionally dismiss others. In my life I have been called derogatory names because I am essentially winning the arguement/debate, and my “opponent” (lacking any credible facts) feels backed into a corner. If we banned discussing a...

My mouth is already watering just thinking about the new tasty delight :emoji_yum::emoji_beer::emoji_curry::emoji_fork_and_knife: :emoji_smile::emoji_stuck_out_tongue_winking_eye:

I certainly don’t feel cynical about all research. And I agree adding intelligence will increase the odds of success. I feel that recent cancer research is a good example of how to increase intelligence, and thus yield a better outcome. But with ME, I question some of the studies, in particular...

Yes, the manual method works (logging onto twitter and pasting twitter posts here on our site). Is this what you are referring to?

Sorry, I don’t know if our forum software features include a connection to twitter? It would be nice to have a seamless integration to our twitter account.

Do we have a twitter account?

#PH17 is the twitter hashtag

I looked at the posted schedule today. This one caught my attention. “16:00 0:25 "Human Organs on Chips: A new tool for advancing personalized medicine" Donald Ingber (Harvard University)”

Research bias, political motivations, financial incentives....I think we have seen it all. Research funds keep people employed, labs operating, and gives the outward appearance of progress.

I can relate. I used to rock to one side to avoid dragging one foot behind me when walking. I looked like I had a stroke. It was as you mentioned “quite bizarre”. I also used to drop objects daily, and I was always loosing my balance. Walking down/up stairs were challenging for different reasons.

The horrible pain kept me from sleeping or chewing. I still have to get Botox injections, and other interventions, to keep the pain away.