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All I Want for Christmas as a Person With ME/CFS

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Remember writing to Santa as a kid? You’d ask for gifts so big and so fantastic that Santa would need more than one Christmas season to fulfill the request.

For me, it was a horse. Every Christmas, even after I stopped writing to Santa, a horse was always at the top of the list until the year Rebel finally entered my life. My horse was truly a dream come true.

So imagine my family’s fear and disappointment when I couldn’t lift my riding equipment in my teens — something I’d previously done with ease. I spent that Christmas under a blanket with little energy. I still can’t stand looking at photos of me and my gray skin during my first “sick Christmas.” We all though I’d recover in my first year like it was some rogue bout of mono (despite all my bloodwork coming back normal).

By the following Christmas, we knew the truth: I had myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS). The diagnosis came in 1998. Now, for the 18th year in a row, a cure is at the top of my wish list. 

I know there’s nothing my loved ones would want to give me more — if only they could. So below I have compiled a Christmas list of the next best thing — gifts that can help fund a cure someday. Even though a cure itself might be a few Christmases away, knowing you donated is still a gift that says, “I believe you. I understand.” 

For the purposes of this list, I am focusing on ME/CFS, but I invite others to do the same with their cause of choice.

1. Donate to the End ME/CFS Project, which is part of the Open Medicine Foundation.

Led by Ronald W. Davis, who is both an award-winning geneticist and the father to arguably one of the world’s sickest ME patients, it would be hard to bet against such a combination of expertise and personal interest. The donation page offers the option of making your donation in honor of a loved one, and signing up for the newsletter keeps you updated about the research you helped fund.

2. Movie night with “Forgotten Plague.”

This documentary gets up close and personal with many views of the illness, from patients to researchers. The filmmakers don’t flinch at the human toll, yet the final message is ultimately hopeful.

The movie is informative without talking over viewers’ heads. With the help of clever animations, you, too, will be able to explain how my vagus nerve may resemble a smoke alarm next to a candle.

The online shop allows you to purchase single DVDs for personal viewing or movie screenings (the filmmakers generously permit screenings without charging for the rights as a way of spreading the word), bulk DVDs that you can give out or donate to libraries and even a cool tote bag that you can use as a conversation starter. Proceeds benefit their Blue Ribbon Foundation, which educates medical students about ME/CFS.

3. Give a piece of yourself to the Solve ME/CFS Initiative.

There are a couple ways to help here. Obviously, they accept financial contributions, but if you are a blood relative to a ME patient, you may also be able to donate to the SolveCFS BioBank. You get release forms and instructions to take to the lab, and they’ll get a vial of your blood to contribute to a large registry for ME/CFS research.

If that idea leaves you a little squeamish, their partnership with Giving Assistant makes it easy to donate to their organization while doing the rest of your holiday shopping at popular online stores.

4. Rounding out my wish list is less talk and more #MEAction.

If you’re close to someone who is chronically ill, it’s understandable to be cash poor around the holidays. This site is pure activism — there’s petitions to sign, legislators to contact and stories to share on social media.

Many of ME patients were moved to tears by the global #MillionsMissing protests. This group made it happen. And if you find some change in the couch cushions, their minimum donation is only $3! If you spend an afternoon browsing this site and contact legislators to tell them about “my friend with ME,” believe me, that would be more meaningful than any holiday gift you could find at the mall.

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Lead photo by Thinkstock Images

Originally published: December 2, 2016
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