Friday, March 18, 2016

Operation Save Maryann's Home Care

Below is a shortened version of the appeal letter appearing on the You Caring donation website. 

I know Maryann, and I can attest to the fact that she is severely ill and totally dependent on home care. 

Please donate what you can. We must look after our own.


Maryann fell ill on March 2, 1982, at 10:00 pm while a doctoral student in philosophy. Maryann was athletic and a high achiever before she fell ill with ME. She rode show horses and was on the high school swim team. She was a water safety instructor. She traveled the world and knows four languages. Maryann continued to work for years after becoming sick with ME. Much later she developed many complications and since 2009 she has been considerably worse.

When Maryann became too sick to work teaching philosophy, she worked as a writer. She focused on studying science and has been a strong voice for others with the disease. Maryann founded the ME Society of America –- the very first in the USA to adopt the name of ME. Her purpose was to give patients access to scientific literature on the pathophysiology of ME to which they could refer their physicians, keeping her sense of responsibility to others at the forefront of her activities. Her website provides links to published articles by researchers and clinicians demonstrating the biological reality of the severity of ME.

Maryann's efforts in collating good research have been a wonderful treasure to many sufferers, especially the young and their carers and physicians. Recently, she wrote a speech that was delivered by a fellow advocate at the Institute of Medicine meeting on ME in 2013.

Maryann’s friends know her to be a person with a knife-edge mind, a quick wit, a strong sense of irony and a will of steel. She has persevered against unbeatable odds and countless life-threatening medical problems for the last 18 of the 34 years she has lived with ME. She attributes much of her successes and survival to open mindedness about treatments and sheer luck.

In the last ten years, Maryann has been quite ill but has remained stable in her home, but she has had to pay for considerable homecare costs out of pocket. She has depleted her savings from when she was working as well as a substantial inheritance from her parents in the process of paying for her care. She is at the end of her finances and will run out of money to pay her carers in only a few weeks. Due to co-occurring complications, without home care and other specialized necessities, Maryann is faced with terminal health repercussions.

Should she be forced from her home, the outlook for Maryann is grim. She is not well enough to move or be hospitalized. As her physician wrote in a letter to the home care program last October, she would suffer a “lethal relapse” of her disease if she had to move, be placed in a hospital, or forego in-home help.

This is our effort to raise money for her to pay for her caregivers. Only weeks remain if she does not receive immediate financial help.

We are asking you for whatever help you can give, so that this very highly regarded and well-liked human being who we call our friend can continue to live. Due to long-standing co-occurring diseases and without home care, Maryann is faced with a death sentence. Please help Maryann continue to fund her home care and help us avoid the loss of this dynamic, courageous individual. She has pursued every last option available to her in an effort to keep herself going.

She needs to raise $2,000 as soon as possible and $40,000 for a year.

You can donate HERE.

Thank you from John Duncan, Khaly Castle, Sarah-Louise Jordan, Michael Allen, PhD, Liz Willow, Jeff Reznik, Shannon Freeman, Barnaby Eaton-Jones, Katie Lloyd, and many other friends in the ME and healthy community.


**Maryann’s (now archived) website can still be found here:

**Her speech at the IOM can be found here: IOM Statement from Dr. Maryann Spurgin, Myalgic Encephalomyelitis Society of America.

**IOM Speech on youtube. IOM Speech on Youtube

**Google Drive of the PDFs on her website is here: MESA PDFs
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