Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Please comment on letter to philanthropists requesting support for ME

Discussion in 'General ME/CFS Discussion' started by Snowdrop, Apr 1, 2015.

  1. Snowdrop

    Snowdrop Rebel without a biscuit

    I truly hope this is OK moving this letter by @redviper here. It is a result of a post I made in the Advocacy section. The posts did not show up in new posts and we were hoping for some views/comments before redviper sends the email.

    Post# 29 Advocacy projects "Has anyone appealed to. . ."
    Alright, I'll take a shot at writing the letter. I'm completely open to people making changes or amending the letter however they see fit, I certainly won't be offended. As far as I see it, this letter is the property of the PR community. If we do go ahead and send a letter, it would probably also be worthwhile to track down the e-mail of any charitable organizations that he has already established.
    "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), I feel it's necessary to highlight the plight of patients suffering with ME and how partnering with your charitable organizations would directly save the life of thousands of chronically ill patients all across the world.

    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, and within four weeks I was bedridden 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 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 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 I commend you on taking such a calculated approach. It is currently a critical time fo 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. In addition to a variety of other ongoing ME studies that desperately require funding, the recent breakthrough by the team of Columbia scientists could potentially lead to a treatment option for ME within the next few years. However, in order for such a breakthrough to be achieved, pioneers like Dr. Ian Lipkin and Dr. Mady Hornig desperately require additional funding to achieve these objectives.

    Mr. Cook, I'll speak frankly, this is a horrible disease that is becoming increasingly prevalent across the civilized world, 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 in 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. 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 all the ME patients across the world."
    mango, Bob, catly and 2 others like this.
  2. Bob


    England (south coast)
    Ithink it's a great letter.

    I would perhaps include the links to the Lipkin studies, just out of politeness, seeing as you've mentioned them.

    I might also say a bit about the OMF i.e. who's involved, what they're doing, the fact that they're seeking funds, and perhaps something about Ron Davis' son being bed bound and how he's doing a systematic study of the immune system that may help other illnesses, not just ME.

    I mention the omf because I think it's probably an institution that a professional philanthropist might feel comfortable donating money to.

    But it's a great letter as it is. Thanks so much for doing it.
    mango and redviper like this.
  3. Gingergrrl

    Gingergrrl Senior Member

    I am confused, who is Mr. Cook?
  4. redviper

    redviper Senior Member

    Yea, the idea of linking to the studies is a worthwhile one that I will include when I update the draft version tomorrow morning.

    As for the OMF, I really focused on trying to keep the letter to a few succinct paragraphs for clarity purposes. The letter is mainly designed as an initial foray to raise ME awareness among Mr. Cook and his charitable advisor's. It's definitely a long shot that we even get a response, but if we can generate a response, then we can focus on highlighting some of the issues that you raised. It was a challenge to write the letter just because there are so many different worthwhile approaches or pieces of valuable information that you could include.

    @Bob - We are still working on tweaking the letter and making adjustments over in the advocacy forum. Would love to have you participate in the discussion over there, as the creation and evolution of this letter is likely going to be pretty fluid, just because we are aiming to get it out as soon as realistically possible.
    Bob likes this.
  5. redviper

    redviper Senior Member

    Tim Cook, the current CEO of Apple who has recently promised to leave his entire $800 million fortune to charity.

    We are writing him a letter on behalf of the ME community, hoping to highlight our struggle and get some additional research funding. Hey, may as well dream big, right? Here is a link to the ongoing discussion in the advocacy forum. Please feel free to swing by and contribute
    Bob and Gingergrrl like this.

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