We are thrilled to share this Letter to the HHS that Sen. Bennet, and Reps. DeGette, Perlmutter, Neguse and Crow sent to the HHS regarding the CFSAC (CFS Advisory Committee). The letter demands answers after the committee was disbanded. Please see below for how to thank them on social media.
Last year, over 40 members of Congress including 2 from Colorado, signed a letter to the HHS. Not content to just do that, the staff of Sen. Bennet worked with us to craft a Colorado-specific letter which was signed by 11 of us from MEAction CO plus Diane Bean from the Solve ME/CFS Initiative Board of Directors. Sen. Bennet’s office added a cover letter and contacted all Colorado Members of Congress to come up with support from 5 of them.
This comes as a direct result of your support for our advocacy. All your emails and calls truly made a difference in catching Congressional attention in a big way. Continue reading
Biff Gore sings at IDA Gala
We would like to thank Lee-Anne Du Plooy of Highlands Ranch, CO for attending the 2018 Invisible Disabilities Association’s Award Gala. IDA was a proud supporter of us at the 2018 MillionsMissing. Their mission resonates with many PWME – not being believed about their disease simply because it’s not as visible as many other diseases. The organization promotes believing patients, disease awareness, education and connection for people with invisible disabilities. Two of their key missions are having invisible disabilities recognized by a new symbol that does not represent visible challenges only; as well as their “Cleaner Indoor Air Campaign” which strives to help so many of us with environmental sensitivities.
In addition to being a great fundraiser, the Gala featured live music, headlined by Biff Gore from Season 6 of The Voice, and many awards for activists of invisible diseases. The event was live streamed and I believe that videos of it will be made available at some point. Lee-Anne said she had a great seat up front and that the event was festive, uplifting and inspiring, with lots of good food, and that it was incredible to hear Biff up close like that. You can check out a recap of much of the night’s events at https://www.facebook.com/InvisibleDisabilities/videos/331493710731521/ .
Julie and John at office of US Rep Ken Buck
Recently we had meetings in the Colorado offices for Democratic Rep. DeGette and Republican Rep. Buck to discuss the situation with the disbanded CFSAC (Chronic Fatigue Syndrome Advisory Committee) and to start educating our Representatives’ offices about ME so that they will more readily ally with us on current and future requests.
We were there for these reasons:
- To educate them on ME and why it is important to support our cause
- To ask them to join forces with other Reps. who are in discussions with the HHS (Health & Human Services) on our behalf to find out why they got rid of the CFSAC
- To ask them to send this letter to a health committee asking for investigation into the ME/CFS health epidemic
- To be willing to support us with future ME legislation when it is introduced.
- Since DeGette is on that health committee, we asked her to use her role there to make sure that ME gets proper consideration and floor time.
As always, the people we talk to were friendly, willing to learn. Neither had heard of ME before, which highlights how critical the education and awareness component of these visits are. The people we met with were (as always) non-committal and agreed to discuss things with their colleagues in DC. I am cautiously optimistic that we’ll have support to one degree or another. We will be following up with them and see what if anything we need to do to push it forward with them.
Dan and John at office of US Rep Diana DeGette
We’ve taken care of visiting Reps. DeGette and Buck and have people in charge of Joe Neguse (running to replace Rep. Polis) and Rep. Perlmutter. We need someone to help with the other three districts. It is much easier than it seems and the volunteers from the other districts who have been through it can help you every step of the way. Please email firstname.lastname@example.org if you want to help, or contact me on FB or by PM. Everyone who has visited a Congress office has felt heard, validated and seen in a powerful way.
You can enter your zip code here to find your congressional representative. People with ME, loved ones, friends and allies are all welcome to help. The only qualification is that you should be in the district of the Representative you are helping to contact.
Note–I know that the name “CFS” is a hot button for many people and that some prefer names other than ME, but in talking with congress offices, we match the names that the members of Congress would be familiar with, thus the names CFSAC and ME/CFS.
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!
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
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.
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
Is it possible that Cortene found a key to ME/CFS? Time will tell…
There’s a promising new drug being tested to hopefully cure ME/CFS by attacking its theorized root cause. This article on the HealthRising blog goes over the details of the trial, the drug and the theories and science behind it. It is all very exciting. The associated blog posts go over the science in depth, explaining how people with ME/CFS/SEID have their stress systems always on, always producing serotonin. The drug they are testing would be very targeted, specifically at the cells that are pumping out the excess serotonin. So the effect could of the drug could be very quick although unfortunately remaining drug trials will not be. Fingers crossed and best of luck to Cortene!