Comments on: May 12 is Chronic Fatigue Syndrome (CFS) Awareness Day

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By: 2010 ME/CFS Awareness Day — Cutest Kid Ever - A Mommy Blog

2010 ME/CFS Awareness Day — Cutest Kid Ever - A Mommy Blog — Wed, 12 May 2010 18:30:48 +0000

[...] I wanted to post something in-depth about ME/CFS Awareness Day. Something with informative links to CFS research, resources, and charities. Then I thought maybe I could do a video about CFS. But the truth of the matter is, I just don’t have the energy. (I suppose you could check out what I wrote last year for CFS Awareness Day. [...]

By: Mark

Mark — Tue, 08 Sep 2009 19:21:17 +0000

Hi Christina,

Great site — keep up the good work.

You stated above that you were diagnosed with mononucleosis in 1999. Have you come across the recent news about a potential (I’d say near certain!) linkage between CFS and mono? See link below:

http://www.blnz.com/news/2009/07/15/Mono_linked_chronic_fatigue_syndrome_4189.html

Also, there’s been a lot of interesting feedback on the issue at Adrienne Dellwo’s site (see link below):

http://chronicfatigue.about.com/b/2009/07/07/mono-juvenile-chronic-fatigue-syndrome.htm

By: Diana

Diana — Wed, 29 Jul 2009 23:10:24 +0000

I have depression and suffer many, very similar symptoms to yours. I liked that you put “just” depressed, like it doesn’t count. My depression symptoms are not something I usually discuss with anyone and they can be really debilitating. I appreciate that you have surely dealt with the same type of “get over it” reaction to your CFS. I hope that you find what works best for you in dealing with your symptoms.

By: Chronic Fatigue Syndrome Patients - Sick and Tired of It All — Phenomenal Content LLC

Fri, 12 Jun 2009 17:56:36 +0000

[...] have valid concerns, and are not just “lazy” or hypochondriacs. We happen to know someone who has CFS who can personally attest to these concurrent symptoms: difficulty falling asleep and staying [...]

By: Rob

Rob — Wed, 10 Jun 2009 15:45:31 +0000

Christina: I appreciate your post. My wife has had CFS for almost 12 years and I completely understand your situation. Unless people knew her before, it is difficult to understand how devastating it can be. Thankfully we found a great doctor in SoCal who helped (now retired unfortunately) and caused her to change from a “sack of potatoes” to 35-50% normal.

The doctor described CSF as the result of the brain misinterpreting sensory input. If you touch a hot plate, your hand pulls away. That’s the way it is supposed to work. But oftentimes people with CFS don’t work that way. When they touch a hot plate (or the countless other outside stimuli) the brain misinterprets the input and actually and literally tells their body they are tired and exhausted. It’s not fake. It’s real.

We had gone to many other health professionals and all they did was treat the symptoms, which in this case doesn’t work. If your brain is telling your body one thing (whatever symptom it is), it’s not correct.

Thanks again and keep up the good work!

Rob

By: Adrienne Dellwo

Adrienne Dellwo — Wed, 20 May 2009 17:33:09 +0000

Christina,

You visited my website and asked if I knew of any press release templates for ME/CFS, like the NFA has for fibromyalgia. At the time I didn’t, but I just came across something that could work for this. I posted a reply to you on my site, which you can see here:

ME/CFS Awareness Letters/Media Guide

I hope that helps! If nothing else, we’ll know where to go next year, right?

By: Jay

Jay — Wed, 13 May 2009 03:16:22 +0000

Very good response on “Dr. John Crippen”‘s NHS Blog Doctor site!

By: Christina

Christina — Wed, 13 May 2009 01:15:53 +0000

Thanks for sharing your thoughts, Kathy and Alan. I appreciate your support!

By: alan

alan — Tue, 12 May 2009 20:08:06 +0000

dont give up hope……I was diagnosed in 1988. Can you imagine what it was like then ? I am doing well as long as I keep to my protocal which includes both natural and pharmaceutical meds.
Most important—-BELIEVE IN YOURSELF !