Colorado #PWME Alison Sale was accepted into an ME study at the NIH, the “NIH Intramural Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Alison writes that “the criteria is very specific and I feel so lucky that I qualified and will have more answers soon.” The NIH will be covering all expenses including travel to Bethesda and a stipend and conducting many necessary tests and providing consultations with specialists.
The study took a lot of work to get into–for Alison it involved “submitting LOTS of records and sending them a list of every provider I have seen since several years before I got sick even including pediatricians,” and will no doubt take a lot of mental and physical energy during the study, but will absolutely be worth it to get some well-deserved answers for herself and to contribute to ME research.
As far as we know, the NIH is still accepting participants who qualify for their very specific criteria which are listed at the above link. There seem to be a few criteria groups, including healthy control group and Lyme Disease group, and some outpatient groups. The NIH website says, “The objective of this research study is to begin to understand the clinical and biological characteristics of ME/CFS.” The study seems to be very extensive and to be done by solid ME researchers.
Alison, we all thrilled for you and hope you get answers about how to improve your situation and we all appreciate the large effort you went through, and will be going through, in order to advance ME research! And perhaps there are others in our CO community who might check this out and see if they qualify as well.
Take a look at the changes we’re making on the MEActionCO website!
How many times have you been trying to explain to people what ME is and what we’re doing here at MEAction Colorado? Well the website can be your virtual handout.
The Home page now has a quick introduction about ME and the ME community in Colorado. There’s a little longer explanation about ME on the next tab, What is ME.
Read the latest posts on the Blog tab. While you’re there, sign up to get updates delivered to your email box. And check out the feeds from our Twitter and Instagram accounts. Continue reading
Soon after my wife Julie was diagnosed with ME, I got involved organizing our Facebook group and working on MillionsMissing and then with helping MEAction’s Colorado group ever since. Julie has a “mild” case of ME, for what that’s worth. Mild in that she isn’t housebound and has periods of activity almost every day. But ME being ME, our lives were still turned upside down and she cannot work even part time or be in large groups for long.
John at #MissingMillions in Denver 2018
Julie and son Xander
I didn’t do all this work for Julie though. We thought for years she had MS and, other than small donations for MS fund raisers as thanks for the help their support groups gave her, I didn’t do any grand support or organizing. My immediate family has a lot of conditions: we have people with autism, depression, OCD, degenerative disk disorder and Tourette’s Syndrome. But I do not organize or advocate on behalf of any of those conditions.
When I watched Unrest and learned the severity of ME and the incomprehensible neglect by the CDC and NIH, I decided I needed to organize and help the #MillionsMissing as this is truly a fight for social justice. Continue reading
There will be more and possibly better photos to come, but I couldn’t wait to share this photo link with you. It was a drizzly, windy, and then brilliantly sunny Saturday morning, typical of springtime in the Rockies. A warm and supportive crowd of over 60 Chronic Illness Warriors, friends, families and allies graced the steps of the Colorado State Capitol in Denver.
Were you there? What were your impressions?
M.E FUNDING IS TOO DAMN LOW!
In which GUSTO eats the hottest peppers in the world.
There is not much humor in #MECFS but Gusto is entertaining while serving up a spicy hot taste of the truth.
We have added a link on the sidebar for YouTube. We will be watching more episodes from WithGustoTV.
One of the biggest issues with Myalgic Encephalomyelitis is Post Exertional Malaise. According to the health site VeryWell;
“Post-exertional malaise (PEM) is a key symptom of chronic fatigue syndrome(ME/CFS) that causes a spike in symptoms and a massive energy crash after what, to other people, would be minor exertion.”
spoons photo credit skinnylaminx
People with ME/CFS, and other conditions, have to be very mindful of both physical and mental exertion. A term that is used to describe this is called ‘Counting your spoons’. It is explained in this charming story where a young woman explains to her friend that managing her activity choices is like planning when to use her limited number of spoons.
There are AT LEAST 14 THOUSAND people in Colorado affected by Myalgic Encephalomyelitis, by some calculations AS MANY AS 60 THOUSAND!
We want to reach as many as possible. We want them to know that even if they are alone in their homes, we are here advocating for VISIBILITY for them and ACTION to demand funding for research and treatment.
Won’t you help! Look for MEActionCO on Facebook, Twitter, Instagram and at MEActionCO.net. Please share, repost, retweet and email our posts about the May 12th event.
Let’s get the word out!
Saturday May 12th is the date when #pwme (People with ME) and their caregivers and allies will be in Action all over the world to bring attention to this debilitating illness.
Colorado folks and neighbors, please join us at the Colorado state Capitol in Denver 10am-11:30.
Here’s the link to RSVP on Facebook.