Here is the final version of the letter that has just been e-mailed to Tim Cook, the CEO of Apple. Once again, thank you to all those who have contributed by providing feedback, input or strategic advice, especially
@Snowdrop. This letter wouldn't have been possible without everyone's contributions. I would like to dedicate this letter to the memory of Vanessa Li (vli), your advocacy and accomplishments serve as an inspiration to myself and many others. If I can achieve 20% of the good that you did for the ME community, I'll be satisfied. Your presence is truly missed, RIP sister.
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Dear Mr. Cook,
I'm sure the recent public announcement that you made regarding how you will be giving away your fortune has already solicited numerous responses, some more deserving than others. However, on behalf of patients all across the world suffering from ME/CFS/SEID (ME), we feel it's absolutely critical to highlight the struggle of ME patients and how partnering with your charitable organizations would directly save the lives of tens of thousands of chronically ill people.
I'm not sure if you have ever had the experience of meeting someone with severe ME, but the condition usually leaves patients housebound for years with a variety of severe neurological and physical symptoms. The onset of the disease is usually random and typically strikes with a viral illness, followed by years of endless suffering. It is worth noting that the disease can strike anyone, regardless of their age, gender, or location. For me personally, the onset of the disease struck when I was 26 and working for the federal government, within four weeks I was bedridden suffering from extreme pain and disabled. Since then, like many other sufferers, my life has become a daily struggle with unrelenting chronic pain, worsening neurological symptoms and a complete absence of any viable treatment options, You would think that such a debilitating disease would receive significant funding from government, but in 2014 the National Institutes of Health (NIH) awarded $6 million in funding for ME and $14 million in funding for male pattern baldness. This is just one of the insurmountable hurdles that our community is currently facing, as a lack of diagnostic testing has allowed certain interest groups to discredit the suffering of ME patients, despite undeniable scientific evidence to the contrary.
It is for this reason and so many more that our community desperately requests your help. You recently mentioned that you wanted to "plan to take time to develop a systematic approach to philanthropy, rather than simply writing cheques" and we commend you on taking such a calculated approach. It is currently a critical time for ME research, as we have just had a promising study released by a team of Scientists at Columbia University's Mailman School of Public Health that identified a unique pattern of immune molecules in the cerebrospinal fluid of people with Myalgic Encephalomyelitis (ME). In addition to a variety of other ongoing ME studies that desperately require funding, the recent breakthrough by the team of Columbia University scientists could potentially lead to a treatment option for ME patients within the next few years. However, in order for such a breakthrough to be achieved, pioneers that worked on this project like Dr. Ian Lipkin and Dr. Mady Hornig desperately require additional funding to achieve their objectives. For reference purposes, I've included links to the recently published articles from Dr. Lipkin and Dr. Hornig.
1)
http://advances.sciencemag.org/content/1/1/e1400121
2)
http://www.nature.com/mp/journal/vaop/ncurrent/full/mp201529a.html
Mr. Cook, I'll speak frankly, this is a horrible disease that is becoming increasingly prevalent within industrialized nations, either due to environmental factors or some other undetermined factor. ME targets both young and old, robbing them of their quality of life and hope for the future, as very few patients ever return anywhere close to full capacity. Please Mr. Cook, help us fight this epidemic, before it strikes down another father, mother, son, daughter, or grandson during the prime of their life. Throughout your life you have demonstrated that you are a visionary and that you are not afraid to stand up and represent the convictions that you believe in. Please bring this passion and partner with the ME community to help us eradicate this horrible disease before it takes the lives of any more innocent people.
Thank you for taking the time to read this, I know it's sincerely appreciated by ME patients all across the world.
My name and contact information
