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.
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.
Here’s the MEActionCO team* in front of Senator Cory Gardner’s office building on May 29,2018. We had a positive meeting with his Regional Coordinator, Steven Emmen. We are encouraging Sen. Gardner to co-sponsor Senate Resolution 508 (SR508) to raise awareness of Myalgic Encephalomyelitis.
In summary, SR508
- supports the goals of ME/CFS International Awareness Day and
- recognizes and affirms the commitment of the United States to discovering the cause of, and a cure for ME/CFS and
improving the availability and quality of medical care for individuals with ME/CFS.
“It just changed her life” Jim said. “She couldn’t do much more than get dressed and we’d go out and get a bite to eat and that would be about it.”
Pam Lutey, and her husband Jim who are members of MEAction Colorado, tell the story of how ME/CFS has severely limited the life of an active northern Colorado woman.
Their story is featured in the May 27 2018 edition of the Sunday Tribune.
Although their health concerns kept them form attending the May 12th #MillionsMissing rally in Denver, Pam and Jim joined the planning team and offered advice and assistance.
Read the entire story of their experience with ME/CFS at this link.
Nora Gayer, a member of the MEActionCO team, was interviewed on air with KGNU radio (88.5 FM and 1390 AM) in a segment broadcast on May 10, 2018, just 2 days before our #MillionsMissing rally. Nora is a smart, articulate, and knowledgeable patient who represented us well. The recorded version can be heard at this link.
An important point that she addressed is one concern that isn’t mentioned often; the early characterization of ME/CFS as Yuppie Flu, an ailment of only well off white women. This characterization did so much damage. While it is true that women are more likely to get ME, the Yuppie Flu narrative continues to do a lot of damage to people who aren’t well off and/or aren’t white, especially when combined with how ridiculously difficult it is to be diagnosed, so such people are left underrepresented and less likely to be believed.
Thanks a million to Nora for a spot-on interview!
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.
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.
Please join us – The #MEAction network day of Action is May 12, 2018 at locations all over the world and for the first time here in Colorado. Please join us at 10am at the State Capitol in Denver for a rally to raise awareness and support for those who suffer from ME/CFS Myalgic encephalomyelitis/chronic fatigue syndrome).
Good company in a journey makes the way seem shorter. — Izaak Walton