My daughter's FB post in support of Millions Missing

IrisRV

Well-Known Member
I think it's pretty good. :happy: One thing I like is that it shows the spectrum of ME/CFS and that even the so-called mildly affected are significantly affected.

I think the impact on families of victims comes through, too, although I may be more sensitive to that point because of my own grief and guilt over being "missing" from a significant phase of my daughter's life.

Feel free to share.

I'm a lucky one.
I'm not one of the 75% of patients who cannot work.
I'm not one of the 25% of patients who are at one point bedbound.
I'm not one of the majority of college-age patients who had to leave college due to this disease.
I'm not one of the people whose loved one has committed suicide due to this disease.

But I am still missing.
I am missing from the stairs.
I am missing from the dance floor.
I am missing from the hiking trail.
I am missing from the tennis court.
I am missing from long, loud nights out.

My mom is not so lucky.
She is one of the 75% of patients who cannot work.
She is one of the 25% who are at one point bedbound.
She knows at least one person who committed suicide due to this disease.
She is missing from embroidery clubs.
She is missing from volunteer work.
She is missing from walks in the park.
She is missing from any activity for which she had not spent a week preparing.
She is missing from her career as a Professional Engineer.
She was missing from my life for five years, as she lay bedbound, incapable of significant communication.

ME/CFS affects 840,000 to 2.5 million Americans, though it is estimated that 84 to 91 percent of patients have not yet been diagnosed. Patients with ME/CFS have, on average, a worse Quality of Life than people with cancer, schizophrenia, or a stroke. Suicide is a leading cause of death in patients with ME/CFS.

In 2014, research for male pattern baldness had $18 million in funding. ME/CFS had $3 million. Doctors receive little to no education about ME/CFS, often brushing off patients as or lazy or attention-seeking. There is no clear treatment path, partially because there is no clear cause. But the effects are real, and they can take everything.

We are missing, but we are not gone.

http://millionsmissing.meaction.net/protest-demands/
‪#‎MillionsMissing‬
Sources:
http://www.nationalacademies.org/h…/Reports/2015/ME-CFS.aspx
http://millionsmissing.meaction.net/resources/fact-sheet/
http://www.healthrising.org/…/chronic-fatigue-syndrome-wor…/
http://www.name-us.org/…/JasonAr…/Jason2005Mortalityfull.pdf
http://www.healthrising.org/…/chronic-lack-funds-chronic-f…/
 

Get Our Free ME/CFS and FM Blog!



New Threads

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top