At the top of my priority list is my daughter.
It was about 25 years ago, that she started noticing symptoms of loss of stamina, unusual tiredness, lots of pain, and seemed to be fighting low-grade flu-like symptoms every so often. They were the types of feelings that we all just dismiss (was I really feeling so bad?) and go on with our lives, hoping those body signals of something “just not right” will go away. And, to a point, they did, and no more thought was given.
But, every so often, they were there again. Most times, they were almost unnoticed; other times, enough to force her to go about her daily activities of caring for her children, working full time, being a thoughtful, responsible person, by “pushing through” those symptoms, and then just falling into bed, exhausted.
This went on for so many years until about 15 years ago, when she was already living close by in Florida. She came over for dinner one Sunday, with her then husband and her two daughters. They arrived in late afternoon, before dinner time, and she told me she needed to lie down. She was completely exhausted and just had to go to bed. It was like an emergency, and I hurriedly prepared the guest room bed for her, and she practically fell into it as I closed the blinds. She couldn’t move; and slept very soundly for hours. When she got up, she didn’t feel refreshed, but she was able to dine with us and then they went home right afterwards. It was from that point, that the symptoms would become more frequent and noticeable.
Going to work was and is not an option as of this past January 2016. She really should have stopped work at least a year before. Looking back, she kept up her pace with great difficulty because she was a single mom and her younger daughter was totally dependent on her, and she worried about finances. She was living a physical, mental, stressful nightmare.
My daughter suffers with the disease that is the reason for the letter below which is circulating in the House of Representatives on behalf of MillionsMissing (a global movement for health equality) and is addressed to Dr. Francis Collins, Director of the National Institutes of Health.
Francis Collins, Director
National Institutes of Health
1 Center Drive, Room B1-126
Bethesda, Maryland 20892-0001
Dear Dr. Collins:
We write to thank you for your attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and encourage you to continue to strengthen the National Institutes of Health’s (NIH) efforts in ME/CFS biomedical research.
As you know, ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.
A number of us sent you a letter in March of 2014 to express support for ME/CFS research and are heartened by your commitment to advance diagnosis, treatment, and a cure for ME/CFS through a reinvigorated Trans-NIH ME/CFS Working Group (Working Group) housed within the National Institute of Neurological Disorders and Stroke (NINDS), and new intramural and extramural research programs that will bring new investigators into the field.
We encourage the Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. We also ask that you provide us with the current status of this planning effort and the specific intramural and extramural activities planned for the rest of FY 2016, 2017, and 2018.
Thank you for your attention to these critical issues. We look forward to your response.
Zoe Lofgren Anna G. Eshoo
Member of Congress Member of Congress
The U.S. House of Representatives is currently circulating the letter asking the NIH to strengthen ME/CFS biomedical research efforts. NOW, is the time to contact your representative to ask him or her to sign the letter. Representatives have only until Wed., Aug. 31 to agree to sign the letter so action must be fast.
Here is a “Prevalence of Well-Known Diseases” comparison chart by state, which compares the number of people in each state that suffers from ME, HIV/AIDS, Parkinson’s (PD), and Multiple Sclerosis MS). Myalgic Encephalomyelitis (ME) is quite short-changed as far as NIH funding, research and timeliness is concerned.
The following websites will be helpful if you had or will contact your U.S. Representatives:
http://www.meaction.net/wp-con tent/uploads/2016/08/Script- and-How-To-1.pdf
https://drive.google.com/file/ d/0B8cZyk4UDCJkQkhfWHJRbU1BZlU /view?usp=sharing
https://docs.google.com/forms/ d/e/1FAIpQLSd3mTxetR874PxJjDA1 AwLDPna9fSNcaKoIx- YnldwGxEerCA/viewform?c=0&w=1
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