Pueblo Woman’s 3 years to Diagnosis

Jillian WEBB

Jillian McQuitty Webb – Facebook photo

Unfortunately it’s not uncommon for someone to struggle for years before finally getting diagnosed with ME. Jillian from Pueblo went to more than 30 doctors and medical specialists and underwent more than 60 medical tests in 3 years before getting diagnosed at the Mayo clinic in Scottsdale.

Jillian suffers from severe fatigue, dizziness, cognitive issues and other debilitating symptoms. But the former cosmetologist looks well so people often don’t take her illness seriously.

Reluctantly, she went public with her diagnosis and turned to crowd funding to help pay for a trip to Salt Lake City. Jillian will be treated at the Bateman Horne Clinic, one of the ME specialist clinics in the country and the closest to Colorado. In addition to education and treatment and, more importantly to her, engage in research that could help lead to a cure for ME/CFS.

MEAction Colorado welcomes Jillian to our community and wishes her well on her journey.

Here’s the link  to the full story in the Pueblo Chieftain by Zach Hillstrom.

Look Back at #MillionsMissing 2018

Xander and Julie with sign 300

Julie and son Xander

Mark your calendars for Saturday, May 11th! As we start planning for the 2019 #Millions Missing rally, here’s a recap of last year’s event.

May 12th 2018 saw our first #MillionsMissing event. We held the rally at the state Capitol in Denver late morning to avoid a hot afternoon. So, of course, the morning started gray and drizzly. We had plastic sheets to cover our display boards and flyers on the tables.

The weather improved by the time our scheduled activities started. Several members told their stories about living with ME. Two people who were unable to attend sent their stories to be read by volunteers.

  •  Dr. Liz (reading herself) (from Westminster)
  •  Cody (reading himself) (from Pueblo)
  •  Julie (reading herself) (from Elizabeth)
  •  Beth (read by Hannah) (Beth from Fort Collins; Hannah from Louisville)
  •  Kris (read by Alida) (Kris from Livermore; Alida from Loveland)
  •  Lee-Anne (beautifully read by her twelve year old daughter Erin) (both from Denver)

Our guest speaker was Wayne Connell, President of Invisibile Disabilities. Nathan Young, husband of member Dr. Liz, MC’d the event. He, also, designed all the graphics. Friends of one of our members provided live music.

Information tables were set up to distribute flyers about ME to visitors. Display boards showed pictures and stories about our members who are living with the disesase.

Nora and gang 300x300Diane Edes gave the welcome talk and John Kelty wound up the event with a rousing call to action.

It was the first time for many to meet someone else suffering from the same illness and to make new friends.

Here’s the link to the picture gallery. Take a look.

Here’s the YouTube link to watch some of the videos.

This year we would like to reach even more people.

Tell us your ideas on how to do so!

Colorado Members of Congress send letter to HHS

Colo letter 2019 on 1 page 300pxWe 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.

We accomplished more than just 5 more voices in support:  now every single CO Member of Congress is aware of our concerns!

Regardless of what happens with HHS and the CFSAC, when there is legislation introduced before Congress, we can count on strong support from most of our delegation, and awareness from them all.

We are deeply grateful to the four representatives who signed and especially to Sen. Bennet and his health staff for their extreme dedication and for going the extra mile for us.

Please thank our congressional supporters on Social Media.  Personalize or use a minimal text for the Reps: “Thank you for supporting people with ME/CFS by signing the letter to HHS regarding the CFSAC.”  And for Sen. Bennet: “Thank you for supporting people with ME/CFS by writing a cover letter to the HHS regarding the CFSAC and by contacting the rest of Colorado’s Members of Congress.  I deeply appreciate your support.”

dems who signed letter 500 x210Here are their contacts on Facebook and Twitter:
facebook.com/senbennetco/
facebook.com/degette/
facebook.com/RepJoeNeguse/
facebook.com/RepPerlmutter/
facebook.com/RepJasonCrow/

@SenatorBennet
@RepDianaDeGette
@RepJoeNeguse
@RepPerlmutter
@RepJasonCrow

 

UNREST in Denver March 2nd

unrest film poster (7) 300x300

Update  as/of 1:25 pm Thursday March 1:

Unrest is still on for tomorrow but stay tuned for any last minute weather updates.

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MEAction of Colorado is proud to present a screening of Unrest, a Sundance award-winning film by Jennifer Brea, with a panel discussion. Invite your friends, family, and doctors to join us!

The event will be held at 1:30 pm on March 2,2019 at the Co-Op at 1st at 5045 W 1st Ave, Denver, CO 80219-1005. Doors open at 1:00. Refreshments will be served after. Come early to check out the indoor farmer’s market!

Medical providers can earn CME credits. Click here for details.

Donations to cover the cost of the event and to support the work of MEAction may be made online at our GoFundMe page or in cash at the event.

RSVP at MEAction or on Facebook.

Twenty-eight year-old Jennifer Brea is working on her PhD at Harvard and months away from marrying the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors yet determined to live, she turns her camera on herself and discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome.

Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients fully housebound or bedbound. At least 75% cannot work or go to school even part time. An estimated 15-30 million people around the world are suffering from ME.

View the trailer here.

Representing ME at the Womxn’s March

Kristen Aguirre from 9News Denver did a very nice segment on MEAction Colorado’s planned participation in the Womxn’s March providing some visibility that is greatly appreciated by those whose lives are so badly impacted by this ‘invisible disability’.

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Group photo courtesy Tom Strobel

Our small but mighty team grew a little bigger with the addition of some last minute volunteers who braved the below freezing weather and helped represent those fighting ME who can’t physically make it through the march.

too ill to be here 300x

Some of our members who are too ill with ME to march – photo courtesy Sue Cunningham

We marched to draw attention to the fact that 75 to 80 percent of the people that are affected by ME are women and historically diseases that predominately affect women don’t get enough attention and research funding.

The Women’s March is a very public inclusive venue and we hoped that we could achieve a lot of awareness by being there.

Several marchers told us they had seen us on TV the night before. And we were able to share information with other people on the route. Altogether a successful event.

MEAction at Denver’s Womxn’s March

UPDATE: Jan 15,2019 – Here is the updated map for the Womxn’s March showing our meeting place and the shorter, alternate ADA route that we will be following.

womxns march route_origwheelchair paint b 300

 

Raise ME awareness in a big way at the 3rd annual Women’s (Womxn’s) March!

We invite anyone with ME who is willing and able, to meet and walk the shorter ADA route, along with our healthy allies, friends and families who can push wheelchairs to represent the #pwME that we love who are too ill to participate.

If you are not well enough to join the march, let us represent you!  In the comments tell us;
1) How long you have had ME
2) Your city

Bring your friends and family, put on your MillionsMissing shirt and let’s make some noise !!

Please RSVP here or on Facebook. Let us know in the comments if you can bring along a wheelchair or 2  just for the day.

Get creative and make a sign either about your #pwME or about HHS or NIH like these examples:
“NIH: STOP discriminating Against Women and M.E.,Myalgic Encephalomyelitis/CFS”

“HHS – Continue the work of the CFSAC – #MissionNOTaccomplished”

Link to Official March info.:

 

Our First Year!

our first year 2018 300x meacIn February 2018, MEActionCO started as a FaceBook group with a handful of members. With guidance from MEAction’s national team, we managed to organize and plan for the first Millions Missing event in Denver. As the group grew slowly to about 35 members we pulled together to organize the event.

May 12th – We pulled it off. It was a drizzly cool day at the state Capitol when we got together for the first time for a morning of speakers and live music and mutual support.  We scored a little media coverage with stories about Pam and Nora.

We had barely caught our breath from the Missing Millions event when the word came from the MEAction Global network that Sen Ed Markey of Massachusetts had introduced Senate Resolution 508: A resolution supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day.

We got to work and donned our red T-shirts again to meet with a staffers at the offices of our Senators, Cory Gardner and  Michael Bennet.

While we continued to push for sponsorship from our senators for SR 508, the US Department of Health and Human Services (HHS) threw a monkey wrench into the works. HHS had sponsored the CFS Advisory Council (CFSAC). Since its inception CFSAC’s charter had been automatically renewed every two years as its charter expired. But in September, without notice, HHS decided not to renew. Even the members of the Council were not informed.

We immediately renewed our discussions with our senators’ staffers.  As a direct result of our efforts, Sen. Bennet’s office joined Sen. Markey’s and others to contact the HHS on our behalf to demand answers.

MEAction’s National Congressional working group, with a coalition of other ME advocacy groups, drafted a letter to the HHS demanding an explanation and a plan to continue the work left unfinished when CFSAC was abruptly terminated.

MEActionCO members have been meeting in person and via phone calls with staffers from the offices of both Senators and 5 of our US representatives to ask for their support and signatures on the HHS CFSAC letter.  (Look for an update here on that campaign very soon).

While getting a baptism by fire in the workings of congressional lobbying, other actions were being initiated by MEActionCO members:

  • In July Holly Heiman volunteered to start the Doctor list. She collated feedback from members’ experiences with Colorado doctors who seem knowledgeable or willing to learn. The list is available to MEActionCO Facebook members.
  • On August Jim Lutey, husband and caregiver of his wife Pam, organized a presentation for the Greeley After Hours Rotary Club to raise awareness and understanding about ME. Jim is willing to share his slides with anyone else who would like to present to a group.

As we approach the end of the year our member list has grown to 120. Our To-Do list has grown as well. We commend all the efforts of our members in 2018 and invite everyone to participate according to their abilities and interests. There are lots of opportunities and we are all in this together.

 

Invisible Disabilities Association Gala

Biff Gore sings at IDA Gala

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/ .

House of Representatives Actions

Julie_and_John

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

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 john.kelty@meaction.net 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.