Search results

Does anyone have access to the full text of this study? Thanks.

I thought it was a really good article and podcast - informed and digestible for NYT readers, giving a real sense that this is a serious disease. From the podcast questions and answers, you realize how hard of a task it is for someone who is informed about the complexities of the political...

With Japanese, mansei (chronic) is a common word, as is hirou (fatigue) and the word for syndrome, and japan being the overworked society that it is (a lot of people think they are burned out and tired all the time), mansei hirou (chronic fatigue) pretty much gives a nearly identical impression...

Thanks for the suggestion Purple, I have added it to my original post. Nielk I agree (with both the disappointment and the dream).

I am curious about what names are being used in countries other than the US for the disease, for example, UK, Canada, Norway, Denmark, Sweden, France, Germany, Spain, Italy, Czech Republic, Australia, New Zealand, India, China, Korea, Brazil, Argentina, any other countries. If you know, can...

I took Ambien and trazodone together, with no noticeable side effects and pretty consistent sleep (around 7 hours, plus another hour or so of shallow sleep) for almost a year. After a while though, it started wearing off at 5-6 hours and that's just not enough sleep, even if it's medicated ME...

Another point is: how long is this going to take? As important as it is that the case definition be at least as accurate and restrictive as the ME ICC, it would be unacceptable if "data driven" means that this could take years, when the data they need already exists. They could make such a...

I agree with both "save your money" and "do it if you can for future reference." I've had NK cell function test 3 times in my 3 plus years sick, and each time it's been abysmally low, regardless of relative improvement or worsening of my overall condition. It is a piece of data I have that...

Dolphin, you are correct. The Chase contest is a Facebook application like any other, and you have to hit the button to let the application access your basic info. I can't remember the details, but I remember reading them last year and not seeing anything bad (and I'm a stickler for...

Way to go indeed - what an encounter! Kudos to the Ms. Miller who were ready to present the question in such a concise matter like that. That is the kind of thing we as patients need to work on, I think: given a brief meeting, or 10 minutes, or 10 seconds - being ready to PRESENT the...

Aruschima, thanks for noticing the video (I posted the same one on a different thread a few day ago, but I'm glad it's making its way around). August59, that is a good suggestion. LaurelW - do you have a Mac by any chance? If you do, since it is a Windows video, all you need to do is...

NHK (the Japanese equivalent of BBC) aired a brief news segment on ME/CFS late last month, focusing on the advocacy efforts of a severe Japanese ME patient. An English version prepared by NHK World is now available online for a week starting today (please note the link will not work after end...

Good news about the committee recommending the ME/CFS name (I missed that part). I agree ANYTHING is better than CFS which people (even the experts/good guys) often shorten to "chronic fatigue." I thought it was great that the NIH guy taking over for Eleonor Hanna)/new head of the...

I think in addition to the NIH $5 million that it apparently gave out in grants as indicated on the NIH chart, CDC separately had a budget of $4 or $5 million to conduct its own "CFS" "research" "program". I've seen a source for the number somewhere, but unable to find it right now (sorry).

I think e-mail is the safest bet at this point given that the deadline is getting close (and no need for postage or trip to the mailbox/post office!). Monday is already 9/13 and the deadline is Friday 9/17. You can write your letter in Word and attach it to an email (or just write in the...

Thank you for sharing your informative and interesting report, and good luck with your appeal!

I liked the piece too. Both because it assumes we are going to get well and it presents yet another, non-obvious but profound consequence of loss resulting from this disease. I hadn't gone to the site in a while - I'm glad I found it again. Thanks muffin for posting.

Just wanted to say a big thanks for sharing your experience and insights about the latest from Dr. Peterson.

I think emphasizing the ridiculously small amount of funding in proportion to the prevalence and disability is critical, and I agree that it would be ideal to express that elegantly using numbers in one sentence, without having to refer to context/comparison with other diseases with respect to...

I agree that CDC's actions and inactions with respect to ME/CFS rise to the level of immoral, if not outright illegal (not dismissing the possibility that outright illegal activity could be discovered with proper investigation), conduct. In response to "what do ME/CFS patients want?" I want...

I remember there was talk of extensions of some members for the sake of continuity at the last meeting because the last rotation brought in so many newbies. I agree with your reading of the charter provision, but maybe "including any extensions" modifies expiration date instead of reappointment...

Great video, caledonia! Concise, factually tight, images and text powerful in their simplicity, and leaves one curious to learn more. Thank you for your work!

I checked out the website to his clinic early on in my illness, and the place struck me as more of a "chronic fatigue" (versus ME/CFS) place and I decided against trying the place because the advertised success story testimonials on the website by patients claiming they felt better after...

I think abnormally low NK cell function is pretty widely accepted as showing up in almost all patients, as Dr. Peterson has mentioned in interviews (sorry no source, just from memory). I like the idea of "NK cell function plus a, b, and/or c." I don't think the Pacific Fatigue Lab repeat...

I think the very fact that the CDC is spending money studying so-called "personality disorders" at all in CFS in 2010 is a problem. One would think they would be past that by now, and that the money would be spent on research that can lead to discoveries that can lead to non-psychological...

Needless to say (?) I agree with this.

(bold mine) Not to mention health and disability insurers (who use just this type of testing and reasoning to deny benefits to seriously disabled patients) who will eat this RQBS up, legislators who make federal research funding decisions for ME/CFS, judges who make disability decisions, and...

Many congratulations, Veronica! What an accomplishment. The book sounds fascinating, and it is going on my reading list. I traveled extensively and had 'sojourns' (studying or working abroad for a year or less) in a few different countries before I got sick. I always wanted to go to...

Thanks Sing, this really was inspiring...I guess I never thought about how the CCD came to be. The sheer amount of coordination and determined effort that it took to bring together all the collective expertise and make it happen is inspiring indeed. If only the same magnitude of focus and...

This is so beautifully done, Dreambirdie. I loved it. THANK YOU!!! The tremendous amount of effort that you put into this is evident from the quality of the video itself. And it's equally evident that you invested so much of yourself into this for the benefit of the entire ME/CFS...