Myalgic Encephalomyelitis: International Consensus Criteria

Could "Chronic Fatigue Syndrome" finally be loosing its ambiguous "fatigue" label? We can only hope that this is a step in the right direction!

Myalgic Encephalomyelitis: International Consensus Criteria - Carruthers - Journal of Internal Medicine - Wiley Online Library

Being Whole

I am in pain, sick, frail, homebound, bedbound, without great possibility or potential in my future.

In all of that, I am whole. I am complete. I am exactly what God made me to be in the exact time He created me to be it...

To read more reflections on what it means to be "whole" and how we can get there even in the midst of illness (not to mention validation for putting up with all those who tell us that wholeness will come through their sure cures), visit Gitz today and read about Whole.

Fibromyalgia

I try not to post identical (or even highly similar) content to two or more of my blogs, but since today's post over at InfertilityMom is more health-related than not, I thought my readers here at GivenMeaThorn might appreciate it as well. For the few of you who happen to subscribe to both, thank you for your patient indulgence in my cross-posting. :)

While it's my personal blog rather than my primary health blog, I am honored to learn today that InfertilityMom has been selected as #22 in the top 100 blogs at 100 Best Sites for Fibromyalgia or Chronic Fatigue Syndrome Information. Thank you! :)

My mom's just completed her 2nd week at week at FibroInnovations. She's sore from all the work they are doing on her, but the results have already been more than we had dared to hope, and she still has another 10 weeks of on site treatment to go before several months of at-home follow-up. After basically falling into this treatment in a way that can only be described as Providential, it truly seems that it is an answer to our prayers for her after over 20 years of pain! Here she is with Dr. Kingston. I will admit that our family was highly skeptical about this program in the beginning, after too many years of "sure cures," but hearing the hope in her voice now makes me feel like this really is going to be a life-altering change for the positive for her.

Speaking of hope and life-altering changes, will you help me keep fighting for change by using your facebook account to join me in daily voting for the Whittemore Peterson Institute? If they can hold onto their current #1 spot in the Pacific region through August 27, they will win $100,000 of desperately needed research funding. If we could move them up from their current 6th place (contest-wide) into first there as well, they would be awarded $250,000. Voting will only take moments from your day and every vote counts! You can learn more about the importance of the Whittemore Peterson Institute in my life by reading back through my many posts on XMRV.

Easy Activism

Did you know that 30 seconds of your time could make a $500,000 difference?

If you have a Facebook account (or know someone who does, or you are considering getting one), please keep reading! If you followed this blog very long at all, you've heard me mention the Whittemore Peterson Institute many times. I am so very thankful for this research organization and the hope they bring to not only me personally, but to millions with M.E., CFS, Fibromyalgia, Lyme disease, Gulf War Illness, a-typical MS, Autism, and more.

The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below through May 25th at 9 pm PST. (Just under 4 days left!)

STEP-BY-STEP Instructions:
1. From your Facebook page, go to Chase Community Giving: http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button.

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

4. Cast your vote for WPI by clicking the "Vote Now!" button.

5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.

CHASE COMMUNITY GIVING: BIG IDEA

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program.

Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility. Here we can engage in revealing clinical trials and provide on site care to those who are unable to afford care. We require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these under-served populations.

http://www.wpinstitute.org/help/index.html#chasegiving

Homeschooling Chronically Ill Children

I have written a lengthy resource for homeschooling with chronic illness (from the parent's perspective) on one of my other blogs. Today I wanted to share a quick article about Homeschooling a Chronically Ill Child and your legal defense rights.

Explaining Fibromyalgia

I just read a great explanation of Fibromyalgia over on the Faith, Family and Fibromyalgia blog. If you have Fibro, the illustrations will resound with you and possibly give you a simple word picture to use to help explain yourself to others. If you don't have Fibro, this story may give you more understanding for your friend or loved one who does. You'll want to read the whole article in detail, but here's a taste:

Imagine you’re planning a party and expecting about 20 guests. Three or four friends told you they’d come early to help you out. But they don’t show, and instead of 20 guests, you get 100. You’re overwhelmed.
That’s what’s happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain. When those pain signals reach the brain, they’re processed by something called serotonin. People with fibromyalgia, however, don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the brain turns into actual pain. Other substances in the patient’s brain amplify a host of other signals — essentially, “turning up the volume” of everything. That can include light, noise and odor on top of pain, and it can further overload the brain...

Just two more days until Fibromyalgia and Chronic Fatigue Syndrome Awareness Day. The Whittemore Peterson Institute (WPI) is building an international network of Advocates who are dedicated to finding a cure for neuro-immune diseases (NID). Learn about May Awareness at ANIDA.

Burden Bearers

Who are your Burden Bearers? The ones who truly understand you? Who walk beside you? Who either "get" you at a heart level, or at least honestly admit that they can't but try to listen with compassion anyway?

Do you have someone like that in your life? I hope so! I know not everyone does. :( If you don't, please share how I can be praying for and with you!

I've been blessed with some wonderful Burden Bearers in my life. Not always. And not at every painful season I've ever walked. But on the grand scale I've been blessed non-the-less, probably more than most.

Even when others where there, trying to care, they did not always do so perfectly, sometimes unintentionally hurting me along the way. As one friend described it, "It's like two porcupines trying to give one another a hug." Sometimes we hurt those we most love, through the very acts we offer out of desire to comfort.

Today I want to take a moment and stop to say thank you to one very precious Burden Bearer I am blessed to also call, "Mom." I was thrilled to learn today that an essay I wrote about the way she has walked with me through Fibromyalgia and Chronic Fatigue Syndrome has been selected as one of the top five finalists in the very first "Fibromyalgia Mom of the Year" contest!

Would you please take a moment to read about Betty Camp, my amazing mom, at the National Fibromyalgia and Chronic Pain Association? And if you are willing to take just a couple moments more, I would greatly appreciate if you would register for a username (you will be required to supply an email address, but can uncheck any auto-subscriptions for email) and then give Mom's story a 5-star rating! The grand prize winner will be determined by public vote between now and May 9, with the final decision announced on May 12, 2011, national Fibromyalgia and CFIDS Awarness Day.