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Well, when I said not terribly effective what I meant was not effective because I can tell you this, Celebrex and the generics would have pushed it for Fibromyalgia. They didn't which tells me it did not do anything for the Fibro pain and that may have been because there was nothing to suppress...

See my post above as I think there have been Celebrex studies in the past.

I thought there were studies on Celebrex alone for Fibromyalgia over the years and it wasn't found to be terribly effective. No? Maybe they're thinking about this study was, suppress the virus and Celebrex will work on residual pain? I mean, I guess they could have done this without Celebrex to...

I was pretty much waiting for someone to say this.

This is true. But it may no longer be PEM and more the reality of just how far into the disease they now are. Plus, they are not trying to diagnose severity with PEM checklist, only use it as part of the diagnostic tool of this initial research. Once they can diagnose for research, they can look...

The most severe patients may not be experiencing PEM as many of us experience it. You can't get them to exert themselves as they are always in a state of PEM/Crash and may not even be able to get out of bed or if they are can only get to the bathroom or into the kitchen.

It can be edited by anyone but the text added needs to be referenced. The community is working on this and anyone who has information can add it.

You had me at

That would be great but I think we need to get that going soon. If he would be willing to take questions from us in another thread and @Andy organize those questions for Jason perhaps he could not only see our concerns but we would have a better understanding of where he is coming from.

Yes, that is why we need an accurate definition of PEM itself but we need large numbers of patients and in fact, that isn't hard because there are a million in the US alone. There is a large group of ME/CFS patients with PEM. We do study PEM itself specifically with the 2-day exercise test. It...

You can leave a comment about 'Unrest' on the Independent Lens site. If you have FB, Twitter or Google you can link it to Disqus (which can be a bit of a pain, it isn't always easy) or sign up with Disqus. http://www.pbs.org/independentlens/videos/unrest/

They believe they will be able to see changes with Cytokine output, Metabolic differences becoming more pronounced, NK cells becoming more compromised, brain scans that may show worsening inflammation and the 2-day exercise test with anaerobic/aerobic thresholds. The worsening of symptoms is...

Reviewing on IMDB is easy. If you have an FB, Google, Amazon or IMDB account, it is One Click. Just select "Add a Review" and One Click through. http://www.imdb.com/title/tt3268850/reviews?ref_=tt_ov_rt If you don't have any of the accounts listed above, you can create an IMDB account. It is...

Yes, this seems correct. If we can research those who are experiencing PEM, those that can probably get to a researcher do experience PEM and not patients experiencing severe relapses and crashes anyway, once we get a biomarker for them then we will have a biomarker on those that can't get out...

Others have been making a good point. PEM is different than relapses and crashes so yes, PEM is usually a prolonged recovery from just that, PEM, which can take 1 day to 2 weeks but it is the relapses and crashes that can take many weeks, months and even years.

Good point.

I guess it could say "Typically taking 1 day to 2 weeks but in severe cases the crash may take many weeks, months or years."

Also, when filling out forms in doctor's offices I often come across a symptom like PAIN with options to circle descriptions. The form might have the question "Do you experience PAIN after (circle all that apply: walking, driving, exercise, grocery shopping, after awakening) and what types of...

Yes. Thanks for finding that.

Yes, I agree that for many it is harder to pinpoint. I had the worst case of Mono the doctor ever saw and at least have a test that helps define my onset...somewhere in my records 40 years ago. My current doctor lost copies of everything I brought over to him and I am too frustrated to try to...