Thank Senator Markey for promising to help ME patients

Ed Markey, Senator from Massachusetts

On Thursday, Feb. 23, I attended a packed town hall meeting in Northampton, Massachusetts with my U.S. senator, Ed Markey (D-MA). Around 1,400 constituents were present in both the main auditorium and the overflow room where the event was live streamed. I was one of the few who got to ask a question. I asked about ME, of course.

The Daily Hampshire Gazette covered the town hall meeting.

Earlier, Senator Markey spoke about his wife, a doctor who used to work at the National Institute of Health (NIH), and also about his staff. I have three PhDs on my staff, he proudly told the room. A perfect segue to my question.

Because I’ve been so weak, I worried about speaking up. What would it do to my heart rate? Would my brain fog allow me to think on my feet? Would the stress of it all cause a relapse? I pleaded with my husband to ask the question instead of me. Twice. Twice he encouraged me to do it myself.

Seconds before my turn came, I silently handed a young woman I did not know my iPhone and motioned for her to videotape. She nodded yes.

The mike was handed to me. I nervously stood up from my wheelchair and told the Senator I had been voting for him for about 30 years. Then I sat back down and launched in. I begged him (yes, begged) to advocate for us at the NIH with Dr. Collins. ME needs more respect and funding, I said. I asked if our ME community could meet with his PhDs. (“Done, done!” he declared, interrupting me.) And finally I said we needed a legislator-champion who will fight for us on Capitol Hill. Markey’s response: My staff will call you, and, “I will be your advocate for more research for your disease.” The hall erupted in applause.

Post-game assessment: My wording was not perfect. I was not as clear as I would have liked, thanks to nervousness coupled with omni-present brain fog, but still this promise of help from Senator Markey is key. #MEAction, the ME US Working Group and Solve ME/CFS congressional teams have been searching for a champion to fight for us on Capitol Hill. Could Senator Markey be that champion we are looking for? I hope so.

In the meantime, let’s thank Senator Markey for stating publicly he will advocate for our community. This thank-you should happen right away. It will serve as positive pressure on him to keep his word, and maybe encourage him to send a higher level staffer to the meeting ME advocates will hold with his staff.

Send your thanks via:

Twitter: @SenMarkey

Facebook: www.facebook.com/EdJMarkey

Phone (best option): 202-224-2742

Website contact form: www.markey.senate.gov/contact (zip code required) (non-Massachusetts residents can also use this form)

Sample message:

“Thank you for promising in Northampton to advocate for M.E. Millions of disabled Americans with M.E. need a champion on Capitol Hill.” And then add anything else you wish to say. If you are a Massachusetts resident definitely state that.

 

 


Categories: Actions, Featured actions, Policy, United States

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15 comments on “Thank Senator Markey for promising to help ME patients
  1. Jane H says:

    Hello, I tried to send a quick thank you but unfortunately the email address did not work for me, it came back as undeliverable. Perhaps you can double check the email address? Many thanks

    1. Rivka says:

      Hi Jane! Apparently the email we put in the article is wrong. So sorry!! Please use the “contact us” on his website. But really a phone call thanking him is best. — Rivka

  2. Amy says:

    GREAT job, Rivka! I’m so impressed. Thank you so much for doing this. I’ll send Markey a thank you asap; I’ll “cheat” and try using my cousin’s Boston zipcode…

    1. Rivka says:

      Amy, thank you for contacting Markey to make your voice heard! — Rivka

  3. Lisa Petrison says:

    I tried sending an email to Senator Market at the following address but got a bounceback notice. Is that the correct address?

    senator@markey.senate.gov

    This is spectacular though Rivka! Thanks so much for your initiative and effort on it.

    1. Rivka says:

      Thank you, Lisa! — Rivka

  4. Rivka says:

    I called Markey’s office. Apparently the email we put in the article is wrong. So we have now cut out that email address from the article. However I was told people from all states can contact him through the “contact us” on his website. But really a phone call thanking him is best. — Rivka

  5. Laurie P says:

    Thank you, Rivka, for your strength, courage and perseverance. You did a great thing for us! I wanted to try to write a couple short paragraphs to send to Senator Markey and I was so inspired by what you did and the opportunity that we have with him that 2 pages poured out of me. I’m posting them in case they help other people with ideas of what to say. I hope that Senator Markey will be a much needed champion for us!

    Dear Senator Ed Markey,

    Thank you for promising to advocate for people with the debilitating disease Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome in the U.S.) at the Northampton Town Hall Event. We desperately need a champion to advocate for us.

    I have been ill since 1983, when at the age of 17, I had mononucleosis and a severe strep throat at the same time. I spent my late teens and 20s alternating between working, going to college and being house or bedbound. It took me 11 years to get a college degree and I had to finish it in an accredited off-campus program. I tried to go to graduate school in the same off-campus accredited program but I eventually had to withdraw after a medical leave. At the time that I withdrew, my brain had become so badly affected by M.E. that I couldn’t understand my undergraduate work or read or write anymore. During those years, I lost my house, many belongings, my marriage and my independence. In my 30s, I was mostly housebound; only going out 3-4 times a month for groceries and for about the last decade I have been bedbound in a darkened room. The disease M.E. affects me physically and cognitively and I suffer in a lot of pain; particularly constant migraine headaches and pain in my spine and back. I can only speak a limited amount and it’s difficult for me to follow a conversation or remember what was said. I can only stand for a few minutes at a time on a “good day” and I shower twice a month seated in the tub. Other people take care of me and I have very limited contact with them.

    There is terrible stigma around this disease. 85-90% of people with M.E. are undiagnosed. M.E. is not taught in most medical schools and often what is taught is incorrect and can be dangerous to patients. This disease affects more women than men and doctors don’t take us seriously and believe us. Fighting to get and maintain disability benefits is a further nightmare and can be a very harmful experience for patients who have to fight for years to get the benefits that they are entitled to. Some patients lose their homes and belongings, are not believed by family and friends and end up homeless. Many people suffer in isolation and without help or care. It is estimated that 1 – 2.5 million people in the U.S. have this disease and that 17 million people worldwide have this disease. 25% of patients are severely affected and M.E. can be fatal. Patients also take their own lives.

    There are researchers who want to solve the disease M.E. but who lack appropriate funding. For example, Ron Davis Ph.D., professor of Biochemistry and Genetics at Stanford University School of Medicine and director of the Stanford Genome Technology Center has a son who is very severely affected by M.E. and Dr. Davis is trying to save his son’s life and find a cure for this disease. Dr. Davis is making breakthroughs but his group needs funding. Dr. Davis is considered one of the top inventors of our time and he has assembled a team of experts including three Nobel Laureates and six National Academy of Sciences Members. Along with working to find a cure for M.E., Dr. Davis and his wife, Janet Dafoe, Ph.D., have to care for their bedridden son around the clock. Their son, Whitney Dafoe, is so severely ill that he is tube fed and he cannot speak, tolerate light, sound, human contact or interaction. He lives in a solitary confinement of being trapped in his own body.

    The world renowned virus hunter, W. Ian Lipkin, M.D., John Snow Professor of Epidemiology and Director of the Center for Infection and Immunity at the Mailman School of Health at Columbia University is another researcher working on this disease. Our researchers need funding and the field needs to substantially expand and bring in many more researchers. New researchers won’t be drawn into the field without appropriate funding.

    Presently, the government only spends several million dollars on this disease where they should be spending upwards of 200 million for us to be receiving funding commensurate with disease burden. Furthermore, that figure doesn’t factor in the PUBLIC HEALTH CRISIS we are facing now after decades of abuse, neglect, stigmatization and slander. The NIH unashamedly has employees working on this disease with the meager funding that we are getting who don’t even believe it’s a real disease. The NIH recently even hosted a speaker who believes that the disease M.E. is all in our minds, a “delusional somatization”. He says this and worse about people with M.E. even though it’s contrary to decades of published medical studies, the 2015 Institute of Medicine Report and the 2014 Pathways to Prevention Report.

    We are counting on you to help us in all ways that you are able. We need serious cutting edge research, this disease must be correctly taught in medical schools, patients need to be diagnosed and properly cared for, students need appropriate educational accommodations, adults need work accommodations and some need livable disability benefits. We need a field of qualified, specialist medical experts to care for patients and accommodate severe patients. Likewise, hospitals and nursing homes must be set up to accommodate severe patients. We need outreach through telemedicine and technology to help patients who have no care now and are too sick to leave their homes. We need drug trials and treatments as there are no FDA approved treatments. The CDC must stop putting out harmful misinformation and correctly do their jobs. The government needs to work with patients, patient organizations and medical experts. I wish I could write more and supply supplemental information but I am not able to at this time. I trust that you will be connecting with people and organizations who can better inform you than I can.

    I don’t know how much longer I can go on like this as my condition continues to decline. There is research indicating that patients are dying 18 years younger than the general population. I am 51 years old now and I have gone 33 years without appropriate medical care. I am missing out on my own life. I am missing children that I’ll never have and I am missing the branches that will never exist in my family tree because of the politics of this disease. A member of our community who suffers from M.E. recently told Walter J. Koroshetz, M.D., Director of the National Institute of Neurological Disorders and Stroke, during a phone meeting with the NIH that “…this is murder by neglect!” She is right. I feel like I am being imprisoned and murdered. Furthermore, this disease has become such a joke to people who know nothing about it and who don’t understand it that almost no one in our society cares or has the strength of character to truly help us.

    I know that you are very busy now with the challenges that the new administration brings and that many more people will need your help, but people with M.E. have been waiting for decades for help. M.E. has been considered a disease by the World Health Organization since 1969. It was published about in the 1950s and more descriptions exist prior to that. We were cast aside during the 80s, during the AIDS epidemic which eventually received huge amounts of funding and treatments while M.E. got slandered as “yuppie flu”, “psychosomatization”, “hysteria”, “malingering” and “not a real disease”. We need champions like you to get us the care, research and treatments that we require and demand like any other human being would get with a prevalent severe medical disease.

    Thank you very much.

    Sincerely,

    Laurie P_____

    1. S.B says:

      Very nicely put….thank you for posting.

  6. Susan Honora Stowe says:

    Thanks Rivka! Way to go! I’m in Arlington MA and I’ll call Markey today and add my story (down since 2006) too! Fingers crossed!

  7. Angie says:

    My message was not accepted. Should I send it by snail mail? Where to? There are 4 offices listed.

    1. Angie, can you resubmit your comment. I didn’t see it. Thanks!

    2. Angie, great idea to send a snailmail letter! You can send it to his Washington DC office. — rivka

  8. Laurie P says:

    There is a Town Hall, Sunday, March 19th, hosted by Congressman Jim McGovern & Senator Ed Markey.

    4:00 PM
    Clark University – Atwood Hall
    950 Main St.
    Worcester, MA
    All Are Welcome

    You can RSVP to Congressman Jim McGovern at this link:
    https://docs.google.com/forms/d/1qxfdQvGret4NFyECcNXCOHi_FfCcOhdwnfWPzmhrU9Y/viewform?edit_requested=true

    Thank you to anyone who can go.

    There is a link in the email that I received that says “Send Jim your thoughts”. The link goes here http://jimmcgovern.house.gov/contact/ and I will send Jim my thoughts as soon as I’m able to pull some together!

    1. Rivka says:

      Laurie: Thank you for sending this info!

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