When I got up this morning, I knew what day it was… but I still hadn’t prepared anything. I have been so sick and unable to write or even think. But I remembered to put on my blue shirt!
Today is ME/CFS Awareness Day!
Interestingly, my husband googled “Awareness Days”. He found a website – at the top of the search, that was called “Disabled World” and listed all the awareness days they know of. There was a Constipation Awareness month, but ME/CFS Awareness Day was not listed. Kind of ironic since it has been around for many years, and has been in the news a lot in the last year.
ME/CFS or SEID (the name may be changed soon) has a history of being ignored. There is more money spent by the NIH on male baldness than ME/CFS. And yet there are so many of us, like me, who are disabled to a point of daily misery and are housebound and even bedbound. There are no treatments for SEID/ME/CFS – how can doctors treat something they don’t understand?
So, for my ME/CFS Awareness day project, I am joining in this email campaign to ask our government to fund research on ME/CFS/SEID. As a way of supporting me and our Awareness day, I ask that you join in the campaign and send this email too (email addresses and letter below). I’ve reworded it so that you can copy and paste. You can read more about it here and if you are a patient too, you can copy and paste the letter at this link.
Thank you! Time for me to go back and lay down.
Re: Equal Funding for Chronic Fatigue Syndrome (ME/CFS) Research
Dear Secretary Burwell and Dr. Collins:
I am a friend of someone who is disabled with ME/CFS, and I am writing to ask you to raise research funding for my disease to a level of $100 million annually, equal to illnesses like Multiple Sclerosis and Systemic Lupus.
I want to highlight two scientific reports commissioned by HHS that were released in the last two months by experts independent of the ME/CFS field. They say the same thing: “The committee stresses that more research is urgently needed.”
The Institute of Medicine, an arm of the widely-respected National Academy of Sciences, and National Institutes of Health’s own Pathways to Prevention Program have issued urgent calls to federal health agencies and the NIH to conduct more medical research into the causes and treatments for ME/CFS.
“Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected.” Institute of Medicine
“Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized….Over the last 20 years, minimal progress has been made to improve the state of the science for patients with ME/CFS…. Innovative biomedical research is urgently needed to identify risk and therapeutic targets, and for translation efforts.” NIH Pathways to Prevention Report
NIH currently funds only $5 million annually for CFS research, despite 1-2.5 million Americans suffering with the disease. That is not enough funding to spur breakthrough science, and I suffer without any FDA-approved treatments. By contrast, illnesses such as Multiple Sclerosis and Systemic Lupus received more than $100 million annually in NIH research funding, and fewer patients are ill. Those diseases now boast diagnostic tests and many FDA-approved treatments because of the high quality research NIH has funded in those fields. That is what patients like me so desperately need, and I believe that is what it takes to fulfill President Obama’s 2012 commitment to elevate CFS at the NIH.
My friend has no treatments and she is very ill. She has been sick for more than 13 years and is unable to work. Please help her by funding medical research into ME/CFS equally and urgently.