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https://www.fda.gov/Drugs/NewsEvents/ucm574725.htm?platform=hootsuite On December 18th, FDA is conducting a public workshop to convene a discussion on methodological approaches that a person seeking to collect patient experience data for submission to FDA to inform regulatory decision-making...

Oh, but I love my fainting couch! How dare you mock it :p

I very much agree with Dr K, that we need an Army of researchers studying ME. But I personally don’t know how to get from where we are today, to reach that goal?

Newly ill. But this term may be interpreted to mean different things by different researchers. For example, it could mean being ill for 3 years or less, which is how Nath said he interpreted it.

Derya, seemed open minded and willing to learn from patients. Also, said he was available thru social media. This seems encouraging.

I take daily parathyroid injections that for a loss of a better term, balance out all three (sodium, calcium, potassium). I once had awful OI or what ever one wants to label it as. This included varying blood pressure/ heart rate, tachycardia, dizziness, loss of balance, trouble standing up in...

I feel you are on the right track, so please don’t give up. I have issues with all three (calcium, potassium, and sodium), but not in the same way a Dx of PP was detailed in this thread.

I would want to see the actual original document, before speculating on it’s contents. This is social media, where anyone can say anything, and they usually do.

@Jonathan Edwards It’s such a relief to read your postings. When I finish, I usually think, “Thank goodness, I am not the only one who sees that” , or “I am not the only one that reached the same conclusion”. Frankly, BS is BS, no matter how much you dress it up. So thank you so much for...

Actually a friend of mine has this disorder. In my five year observation of her, n=1, she is more functional than me on a daily basis, and can better handle the stress of juggling her responsibilities. But when she goes downhill, it’s quick and often is life threatening. It’s an awful disease...

I am not aware of a transcript. Have you tried asking via the website, FB, or Twitter? https://www.unrest.film/contact/ https://www.facebook.com/unrestfilm @unrestfilm twitter handle

Thank you for posting about living with chronic pain, which includes tips about how to better navigate the health care system, which when applied, can maximize a better success rate. In the US, I do believe it is a system, that once carefully studied, can be understood to produce better then...

Erin did a great job writing the article, while @ahimsa comment was excellent!

Why do people sign up for Kaiser? And once members learn that scripted medicine is a huge failure, then why do they stay? It’s always puzzled me. If you have a cookie cutter illness, and are not a senior citizen, then possibly the system works, assuming your surgeon has slept in the last 24...

I have been taking Phentermine for about two years, and am pleased with the results. It does not cure ME, I don’t think anything does (and I doubt in my lifetime I will see a one pill cure wonder), but it adds to the quality to my life. It’s not the only Rx I take, but it’s the cheapest one. It...

Exactly. I don’t think there is a common ageeement, among all the professionals, as to what depression really is. Many drug studies are so vague, that I often wonder if people, who report an improvement with antidepressants are just experiencing a placebo effect. All of the people I know that...

Unrest will premier on the PBS channel in January 2018 January 8th, at 10 PM http://www.pbs.org/independentlens/films/unrest/

Thanks @Ron for keeping us in the loop and providing the details.

Its good to hear that more scientists and doctors are interested in studying/researching ME; I think we need to encourage this.

@Woolie I am sorry you have little confidence, and can sympathise. ——- Generally speaking.....(not you Woolie) IMO some PwME have been lured into some kind of lull to almost have a betting pool mentality with a small handful of researchers/doctors. None of them are gurus, and thinking of them...