Last year I lost one of my best friends to ME/CFS, AnneBerry.
In the US alone it is estimated 1-2.5 Million people suffer from ME/CFS but there is great lack and inequality in its funding.
For example, in the US, ME research funding is between $3-8 per patient per year.
A similarly disabling disease such as multiple sclerosis receives about $242 per patient per year.
#millionsmissing 2020 will entirely virtual.
Check back shortly for more info.
Today is severe ME day which for some people is so severe that they literally can not leave their beds. This is how my friend Anne Berry spent the last few years of her life, with severe ME. I know what ME took from Anne. I promise to do what I can to help spread the word and educate for those people who are unable to leave their beds and speak for themselves. Anne was losing FAITH in the NIH, CDC and the HHS and I promise to never stop until they have heard us and do something about this horrible disease that does not get the attention it deserves.
HEAR US AND DO SOMETHING!
August 8, 2018 Connie F.Bane
Connie F.Bane (Close friend of Anne Berry) wrote on May 12, 2017:
In honor of my friend today is MAY 12th INTERNATIONAL AWARENESS DAY for Chronic Immunological and Neurological Diseases (CIND). Diseases the medical world has forgotten.
Please join us in continuing Anne’s wish:
Anne suffered from a combination of illnesses that affected her ability to function, including Myalgic Encephalomyelitis (ME), Sjogren’s Syndrome, and Complex Regional Pain Syndrome. She was proactive about researching details, visiting specialists, and trying various remedies until she was no longer able to get around and was homebound. Anne was often disappointed in the lack of recognition these diseases receive from the medical community and felt strongly in the need for more medical research. She was an online activist and would frequent forums, especially regarding ME.
Anne was hopeful that in the near future more recognition would be given to the diseases she lived with so that there would be hope for others who suffered as she did.