Send this personal appeal to healthy volunteers

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Hi, everyone!  This is more of an opinion piece, though it does have to do with #MillionsMissing.
As you might imagine, we will really need healthy people to come out and support us: to help with setup and cleanup; to hand out water and food; and to raise their voices alongside our own.  I wrote a letter that I hope you will be able to send to friends and family in areas around the protest who might be able to join us on May 25.
By changing just a few details in the first paragraph, I hope that anyone will be able to use this as a form letter to invite healthies to the protest in D.C.  Simply select the text, right click, and select ‘copy’.  Then, move to an email, right-click, and select ‘paste’.

Hello!  My name is Jaime, and I’ve been missing since 2013.  I have the neuro-immune illness myalgic encephalomyelitis, recently re-named SEID in the United States.  My illness is poorly funded and has no FDA-approved treatments or interventions.  If I visit my GP, he has never heard of my illness, because the training for physicians in ME/CFS is nonexistent.

And yet, I know I’m one of the lucky ones.

About 1 out of 4 people with my illness are too sick to leave the house, and some of those are too sick to leave their beds.  That’s 250,000 American citizens who are missing from their own lives, unable to be with family, experience a fulfilling work-life, or ever travel again.  People with severe ME have a quality of life that has been compared to people with cancer going through chemotherapy, or congestive heart failure; but we rarely die from these symptoms.  Generally, we live for decades at this level of functioning.  Anyone can develop ME, irrespective of gender, class, or color.  It can come on suddenly and worsen without warning.

Yet ME/CFS/SEID currently receives approximately 2% of the funding that is commensurate with its disease-burden: a figure calculated according to the severity of the illness and how many people have the disease.

Even the most well among us are often too sick to protest this lack of funding, medical training, and medical research.  If you live in the D.C. area and know you want to make a difference, our patient community could really use your help.

We are the #MillionsMissing, and we will be protesting outside the Heath and Human Services Headquarters in Washington DC on May 25th starting at 11AM.  We know we will need help with setup and cleanup, as well as small tasks during the protest itself.

Our protest demands are simple: better training for physicians and other medical professionals; funding commensurate with disease-burden; and approving treatments for ME/CFS/SEID that are already approved for other illnesses while accelerating clinical trials to search for a cure.  Finally, we are asking HHS to provide oversight and a serious commitment to these efforts.

Visit the site here to RSVP and pledge your support.

You can learn more about #MillionsMissing and about ME/CFS here:

Can’t make it, but would like to donate to the protest?  Go here.
Can’t make it, but would like to help out in some other way?  Try here and here.
Want to learn more about the protest?  Visit the protest homepage here.
What is ME/CFS, anyway?  Find out more here.

You have probably been sent this message because, whether you are aware of it or not, you know someone suffering from ME/CFS.  Please show your support for this invisible patient community if you have the time and energy to spare.  We have satellite protests in NYC, San Francisco, Boston, Seattle, Atlanta, Dallas, London, and in Canada and Australia.  Help our protest become so big, so memorable, that others have no choice but to hear our voices.

Thank you so much for your support.

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2 thoughts on “Send this personal appeal to healthy volunteers”

  1. Deborah Waroff

    Jaime, the figure of 1 in four missing from their lives is also low. Fewer than 25% of PWME can work or remain in full education and of these none can maintain the entirety of a normal life outside work. Also the epidemiology according to Harvard’s work for the CFI suggests (very rounded off) that 50% are housebound and 25 % housebound and bedbound. Thus 75% are either bedbound, housebound, or housebound for the majority of their days.
    Thus
    100% of ME patients have lost the ability to lead full lives.

    1. Deborah,
      the citation is from the Jason paper we recently discussed that found that 23.5% were housebound or bedbound; however, this is an oft-cited statistic from multiple studies, not just Jason’s, and the sample size was significant. Can you cite your information’s source with a link? That data differs significantly from what I’ve seen elsewhere, so I’d be very interested to see the original source.
      Additionally, you are welcome to shift the letter in any way that you like; feel free to change any of the wording you want to in order to disseminate the letter to friends and family.
      Thanks,
      Jaime

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