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Last updated January 1, 2014

This is CFIDS

An open letter to the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education

Melissa Kaplan


August 10, 1996

Dear Senator:

Imagine having the worst case of flu or cold you have ever had...then increase the severity by a factor of 10. Imagine waking up every single morning feeling like you have been worked over by an entire backfield armed with baseball bats...and those are your better mornings.

Imagine being able to constructively read drafts of legislation, review financial reports, or effectively function at a meeting for only one or two hours...and then having to retire from all activity for one or two days to recover enough to go back to work. On days when you feel steamrollered instead of merely beaten by bats, it may take three or more days to recover.

Imagine your friends and family members deserting you because you are in so much pain and have so much trouble keeping track of a train of thought that you become a real drag to be around, physically and intellectually.

Imagine losing or quitting your job because you cannot find one that will let you work when you are up to working, every two or three days for a couple of hours. Imagine losing your health benefits yet having to go from doctor to doctor, trying to find out what is wrong or to try all sorts of expensive drug therapies to try to find some combination that, for a while at least, will mitigate the pain, decrease the brainfog through which you struggle every single day.

Imagine going from working 60 or more hours a week for years, making $80,000 a year plus bonuses and full benefits, to being bedridden, without income, without financial assistance other than what you can beg from your family or friends.

Imagine going from an active vital life, with spouse and children and pets and a home of your own, to camping out on your elderly mother's couch or dim back room for the rest of your life.

Imagine feeling like the above, and having people, strangers, physicians, and people you never met before, accuse you of malingering or faking it to get attention...after all, everybody gets tired now and then.

Imagine feeling all of the above, yet having to drag yourself out to go get food and prescriptions filled because there is no one to do it for you.

Imagine feeling all of the above, and knowing that the only way out, the only way to finally stop the pain and feeling of total worthlessness, uncertainty, and hopelessness, is to kill yourself because this damned disease doesn't even have the courtesy to kill you on its own.

This, Senator, is CFIDS. This is the reality for the millions of Americans, most of whom used to be hard-working wage-earners and taxpayers, people who were dynamically involved with their families and their communities.

This is the reality for the hundreds of thousand of children who will never have the chance to be children, sentenced as they are to a life of pain, confusion, teasing, and a school system already too overburdened to help them and their families get the children what education they can when they miss far more days of school than they ever attend. Miss, too, school and community sporting events, friend's birthdays, going to the beach, kicking a ball around the barbecue.

This is the reality that the CDC, NIH, and Social Security Administration has created for us because they were too stubborn to admit they were wrong.

This is the reality you will perpetuate if you and the other LHHSE committee members do not:

  • adequately fund the CFS Interagency Coordinating Committee;

  • increase NIH funding for extramural grants for CFIDS-related biomedical research;

  • increase CDC funding to expand surveillance projects and make sure they are doing their job;

  • direct the SSA to retrain its regional staff-and judges-in the reality of CFIDS;

  • direct HRSA to develop appropriate curriculum for health care providers.

The millions of people like me, people whose lives and loved ones have been decimated by this disease, will be watching, with great interest, your actions on these matters.


Melissa Kaplan

Not sure who your senator or representative is? Look it up at the site.

Need your senator or representative's phone number, mailing address, website, or email address?

Letters should continue to be sent to the subcommittees on health and human services - it reminds them that we are still here and funding of CFS research and education is still critical.

U.S. House of Representatives Subcommittee on Labor, Health and Human Services, and Education, 2358 Rayburn HOB, Washington, D.C. 20515-6024; better is to address your letters to individual committee members .

U.S. Senate Subcommittee on Labor, Health and Human Services, and Education.

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