NIH Receives Surprise Holiday Gift from ME Community

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It was a big holiday season for Dr. Walter Koroshetz who oversees ME/CFS research at the National Institutes of Health (NIH)! 

As part of our Cards for Koroshetz Campaign, people with ME, caretakers and allies sent Dr. Koroshetz 500 holiday cards with their stories of living with a neglected and shunned disease. They told Dr. Koroshetz his plan for ME requires urgent action after more than 30 years of neglect by the NIH, which has resulted in an absence of research, treatment options, diagnostic tools and knowledgable clinicians.  

Through card after card, the ME community told stories of their lives as scientists, farmers, teachers, counselors and engineers forced to give up their careers, dreams and passions. 

James from South Carolina wrote about being too sick to lift a glass of water or bathe himself at the age of 31. Garrett from Fort Collins wrote about being an avid outdoorsman, scientist and musician in 2018, and now struggling to hang on to the ability to feed himself or take a shower independently.

Gabriel from Vienna wrote about being unable to hold his baby daughter for more than five minutes before collapsing from exhaustion. Claire from Australia wrote about missing out on becoming a mother because of ME. A grandmother wrote about fearing she will not see her two grandsons with ME healthy before she dies. Evelyn wrote of her mother’s death due to the disease. 

Dr. Koroshetz heard from community members with moderate and severe ME who, too unwell to write their own cards, were paired with a volunteer to make their voices heard. Through our campaign, 116 people who wouldn’t have been able to send a card were able to make their voices heard through the help of 30 volunteers! 

One of our core campaign volunteers, Therese, said that volunteering to write cards for those unable to do so was eye-opening and impactful. For Therese, the experience was empowering.

“In the process of writing cards for others, I spoke with two people on the phone who requested that I call them to collect information for their card (because they have limited ability to type and use a computer),” Therese said. “They have both had ME for decades – one of them since the 80s. As a younger person who hasn’t had ME for as long, it was moving to hear their stories and relay pieces of them to Dr. Koroshetz at the NIH.” 

We are so thankful to our core group of volunteers – Claudia, Rob, Therese and Whitney – who dedicated their precious energy and time to helping us make this action such a resounding success!

“That over 500 people told their story and took action this holiday strengthens my resolve to keep fighting, and my hope that with more volunteer involvement and grassroots action, we can truly change the NIH state of play,” said Therese. 

Our Cards to Koroshetz campaign is the third action in our #NotEnoughforME campaign calling for Dr. Koroshetz and the NIH to take specific actions to accelerate ME research. We are building the campaign infrastructure, and seeking volunteers who are interested in getting involved. Join the campaign!

We are escalating our #NotEnoughforME campaign until Dr. Koroshetz and the NIH shows true commitments to ME that will turn the tide and provide treatments, knowledgeable doctors and hope for the ME community. 

Below are a few examples of the powerful holiday cards sent to Dr. Koroshetz at the NIH: (Upload your card to our public gallery.)

My name is Garrett, and I became ill with ME/CFS this year. I attached a photo of myself from 2018, as well as a recent one. These sum up my extraordinary loss of health and functioning as a result of this disease.

I was an avid mountain biker, an outdoorsman, an award winning scientist by profession, a musician, and an active member of my family and social circle. Read the full card.


Rob alone reached out to over 100 family members and friends asking them to write a postcard to Dr. Koroshetz. He then printed volunteer-designed images onto postcard paper, and sent them to each family member ready-made for them to complete.


My name is Jennifer, and I am 19 years ago. I am a triplet, with a brother and sister. I am a sophomore at Cornell University.

About 5-6 months ago, I got ME/CFS.
I now walk with a cane, and I struggle every day to sit up, stand, do basic tasks, and go outside. My parents can hardly comprehend the horrible reality of my story. They live with an immense distress that culminates in outbursts of grief, or, more often, late-night anxiety attacks, and they can hardly bear to watch their young daughter struggle to stand while carrying a backpack or her arms trembling as she tries to help carry groceries. Read Jennifer’s full card.


Before I became ill I was a productive member of my community. I ran our small family farm, homeschooled our kids, and volunteered around my community.

Through misdiagnosis and wrong treatments I am now considered severely effected and am about 95% homebound and 100% bedbound when I am home. I have 7 children age 3, 7, 9, 11, 13, 14, and 16 years old and I am missing out on their entire childhood! My spouse was fired from his last job for taking too many days off to care for us. My family has experienced homelessness 3 times since I became ill and we lost our farm in the process. This illness has devastated and traumatized my entire family.

How many more people have to experience what my family has gone through? How long until I can get proper treatment and help? 

Kimbrah


I am 49 years old. Until about 8 years ago I was a vibrant, active member of my community. 

I homeschooled my 3 children and taught poetry and geography to other homeschoolers. I volunteered at my church in the nursery and taught the 4 and 5 year olds.  I wrote a weekly faith based devotional and led prayer groups for women. I served as a mentor and counselor to those same women and others. I cooked every meal for my family and also cooked meals for new moms and served on a bereavement committee using my cooking talent to serve grieving families who couldn’t afford to cater after the cost of funeral services.  Read Kristi’s full card.  


Denise, who has two sons with ME, and their grandmother sent this card to Dr. Koroshetz with the following message:  


“My greatest pain and sorrow as I reach the end of my long life is that my grandchildren, who developed ME in 2005 and 2006 are still so horribly sick and disabled with ME!” writes their grandmother. She continues,

“For many years now I had hoped to see them in full health again. The harsh reality is that I won’t live that long. So my hope/ urgent request is that now, before I die, you and NIH assure me that you will do everything necessary ASAP to move the science forward for people with ME so that my grandchildren will be healthy again during my daughter’s (their mother’s) lifetime.” Read the full card.

See more Cards for Koroshetz in our gallery below:

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