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.
MEAction CO member Erin McGrath single-handedly scored the ME community a major public event: she will be a “living book” at the Ft. Collins downtown library on Saturday, Feb. 2! Erin says, “this is an incredible opportunity to help educate the public of all ages, on invisible illnesses, chronic illness, and what ME/CFS really looks like. I’m over the moon that they are doing this type of event!!!”
Erin has had ME since 2015 and was only diagnosed after Unrest clued her in to what her doctors’ didn’t know to diagnose. She had had Fibromyalgia for many years before that until it had gone into remission.
The Poudre Library District describes the concept, “Instead of checking out print books, you “check out” people serving as books in the Living Library. Though simple in name, the actual Living Library experience is rich and wide-ranging for both you, the reader, and the storytellers, the books. You hear the real-life stories of people in your community who have volunteered to share their unique perspectives, talents, backgrounds, or experiences.”
Erin hopes this will “inspire others to look for similar programs at their libraries, or even to pitch the idea to them and come as a book themselves as well.” My Parker library does not seem to have this concept so I will pitch it to them sometime. Additionally, I think many libraries allow you to set up a table or display outside as part of your free speech rights. I did this once for some other event in Parker and the paperwork was simple.
Stay tuned for more information and check out her Facebook event!
Well done, Erin… we all thank you for seizing this great opportunity and look forward to Feb 2!
Time to get out your #MissingMillions T-shirts and poster boards!
In case you haven’t heard, last week without warning or explanation, the Feds terminated the Federal Advisory Committee on Chronic Fatigue Syndrome (CFSAC). Later the DHHS asserted that ME/CFS has been so embraced by the federal government that an advisory committee was no longer needed!
In response to this outrage, MEAction is organizing a day of protest this Friday, September 10,2018. If you are going to be in DC you can join the protest in person at HHS Headquarters in Washington, DC! Wouldn’t that be terrific!
Since most of us will not be able to do that, here’s the plan presented by #MEAction National;
Show up virtually on September 14th!
- Take a photo of yourself within the theme of “We will be Heard.”
Suggestions:Stare defiantly into the camera and hold up a sign that says, “Hear ME Now HHS;” or “We will be heard;” or “We will not be silenced.”
Write such words on your body.
Cover your mouth with a bandana and write, “Do not silence M.E.” or “HHS will hear ME.” – If you have another photo idea, we love it! What is the message that you want to send to the HHS? Use the hashtag and get the word out!
- Post your photo to social media with the hashtag #HearMEnowHHS. Tag the HHS director using the twitter handle: @SecAzar
- Call and email HHS Secretary, Azar. Watch this space! We will provide you call and email details soon.
- Send your friends to D.C. Encourage all friends and allies in the DC area to protest on your behalf!
Let’s take this a step further:
- Wherever you are in Colorado, there are other MEAction Colorado members nearby. If you are feeling strong enough to do so, reach out them and plan a little group photo shoot. You can do this ahead of time and post your pictures on Friday.
You can find friends in your area on our Facebook group or Contact us here and we’ll do our best to help.
If you are not on social media or need help posting, email your pictures to MEActionCO@gmail.com and we will post them for you.
Click here for more information about the CFSAC or here for all the details about the MEACTION protest.
We’ve been gathering useful ME info in different places so wanted to put the list in one place for handy reference. We hope you find it useful!
Our home page, meactionco.net
Our Facebook group : part support community, part activist network, open to all PWME, caregivers, loved ones and allies with Colorado ties.
Global MEAction site with info on advocacy and many other support groups
Reviews of medical providers in CO as related to ME
Videos from the 2018 Denver #MillionsMissing.
Photos and additional videos from 2018 Denver #MillionsMissing.
Emails for me (email@example.com) and Diane (firstname.lastname@example.org) .
Mailing list for Colorado ME advocacy efforts when we are doing an email or calling campaign or signing a petition for example — email me to request to be on this.
Invisible Diseases Association
Jim Lutey explains Myalgic Encephalomyelitis
One of the big goals of MEAction is to raise visibility for People with ME (#pwME). Last Tuesday, August 28, one of our Northern Colorado members, did just that. Jim Lutey’s presentation ‘What about ME’ for the Greeley After Hours Rotary Club, was the first such presentation by a member of MEAction Colorado. Jim talked about the disease symptoms and its impact on people’s lives. He told how ME has disabled his wife Pam who became ill 2 years ago. Pam was a member of the Rotary Club but is now too ill to attend meetings.
Jim stressed the need for research funding, medical education, standard diagnostic guidelines and coordination among the groups who are working to raise awareness for this dreadful disease. I had the privilege of attending and adding comments to the discussion. We covered the MEAction organization here in Colorado, and the national and global organizations.
Jim’s presentation was well received. The club members were attentive and asked thoughtful questions. One gentleman raised the issue of disability insurance and we discussed the problems that many #pwME face in trying to get approved for disability when it is so difficult to get diagnosed.
Greeley After Hours Rotary welcomes Jim and Diane
Members of the club expressed appreciation for the presentation and said they had learned a lot. They were interested in how they could help. They are hopeful that Rotary International will be open to supporting MEAction.
While Jim plans to give a few more presentations on ME for Rotary groups in the Greeley/ Loveland area, he can’t be everywhere. He will make his PowerPoint available for anyone who wants to give a similar talk. If you have contacts with Rotary clubs or other service or community organizations that would be interested, please let us know. If you would like to give a talk, let us know what info you require.
We need to educate Colorado. You can help.
– Diane for MEAction Colorado
The MEAction Global Network needs your help!
Sign this #MEAction petition and stop the CDC from making ME treatment guidelines without our input!
The US Centers for Disease Control (CDC) is updating its ME treatment guidelines. As part of this work, it is attempting to quietly hire the same independent contractor that previously recommended graded exercise therapy (GET) and cognitive behavioral therapy (CBT) for the treatment of ME.
We cannot let history repeat itself: Sign the #MEAction petition to stop the CDC from repeating a terrible mistake. Then SHARE on social media and with friends and loved ones. We must act quickly and respond by Friday, Aug. 31st. That’s this Friday!
We encourage allies around the world to fight this contract by signing the petition, no matter where you live.
Erin and Lee-Anne Du Plooy and I met with Kwon Atlas from Senator Bennet’s office last Tuesday, Aug 7. to discuss SR508. We understood that Sen. Bennet objected to co-sponsoring SR 508 because it is a single-disease issue.
MEAction had prepared some great information for us to counteract this. Detailed charts explaining mathematically how ME is the most underfunded of all diseases in the NIH portfolio compared to disease burden, and how the Senate has recently singled out Lyme Disease for attention , provided examples from longer ago, like AIDS, where patient activism called Congress to act.
Also, both our senators supported legislation for people suffering from rare diseases. Since ME is so very common, I was a bit disappointed to have to be at this point with both our senators, but we presented the best case, along with Lee-Anne’s personal story to keep a face and name in front of all the statistics.
We’ll be following up soon with Bennet’s office and will probably have a calling/email push along with that. A similar meeting with our contact in Gardner’s office is in the works.
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
What’s a million dollars between friends?
Jennie Spotila is a fantastic resource about everything going on in the ME community. She digs through the details and tells it like it is. Here’s her analysis of how much the NIH is REALLY spending on ME research.
And it’s not what you think!
No sooner than I got this posted, Jennie followed up with her projection for FY 2018.