Friday, February 19, 2016

Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis

Dear Francis Collins:

The following happened since I got sick, without the NIH funding myalgic encephalomyelitis (m.e.) as a global crisis:

  1. Humans landed on the moon
  2. AIDS discovered, science, HIV discovered, excellent treatments; 2015 US funding $30.7 billion.1
  3. multiple sclerosis sufferers released from mental hospitals; got science, treatments
  4. Galileo pardoned after 350 or so years; Barry Marshall swallowed H. pylori to reverse politics and idiocy
  5. CDC lobbied for Tuskegee syphilis experiment to be continued, later got negative Congressional attention; Kathleen Sebelius and Hillary Clinton apologized for Tuskegee-like Guatemala research that occurred after Tuskegee
  6. AIDS activists tackled Catholic church, Cosmopolitan, FDA, NIH; later praised by your friend Fauci who has not been ours
  7. personal computer, now better than all computers of the time combined; cell phones; Fermat's last theorem solved; Internet, strangers exchange cat pictures
  8. NIH grew, now reported to control more than half of health research funding (and 85 percent of health studies at universities; senator in 2015 urged doubling NIH funding; NIH still makes excuses; I still need AIDS-level urgency and priority
  9. genomes sequenced; Genbank; Medline; BLAST; prions; insulin synthesized; smallpox eradicated; archaea; folding at home; knockout mice; omics; flow cytometry; PCR; MRI; IVF; cloning; stem cells; artificial heart, liver tissue, kidney; gene therapy; hand reattached; pretty color images in journals; gene, protein, virus chips; HTLV; you attended retrovirus meeting which made us think you maybe cared
  10. health authorities still practice misopathy and foolishness; US health authorities still consistently fail to acknowledge m.e. severity progression
  11. tobacco systematic corruption of science since 1953 began to come to light, still being discovered in 14 million court-ordered documents; thousands of corrupt academics; controlled journals, books, and conferences; fig leaf non-reforms, varied industries and governments learned they could corrupt; meaningless promises of change
  12. Obama ran on change; staff promised change on "ailment"; no change in science, funding, medical care, services, or policy
  13. Diederik Stapel, Elizabeth Goodwin formerly connected with NIH, varied others disgraced; varied QRP including COI; meaningless promises of change
  14. countless meaningless promises of change from health authorities, reneged, many sufferers of m.e. died; Lucy pulled football countless times, Charlie Brown kept trying to kick it, author of "Peanuts" died
  15. countless diseases including Gulf War, chronic Lyme, MCS, Camelford, Sellafield, RSI came to light, denied by health authorities, later some admitted; SV40 admitted; meaningless promises of change
  16. recently: serious, often progressive multisystem disease speculated to be "meme" in journal
  17. recently: science activists smeared in centrally coordinated global media campaign
  18. recently: major headlines declared not a chronic illness; photo of smiling woman with barbell
  19. recently: Karina Hansen incarcerated for being bedridden, varied others; forced to be vertical, human rights community blasé, perpetrators still walk free
  20. 2015: health authority Francis Collins promised change.
    • What I need: AIDS-level urgency and priority.
    • Results: a truly trivial number of studies and subjects for the size of the disease, bureaucratic theater exactly on cue, and no meaningful funding.
    • I have confirmed no change in NIH m.e. policy from my perspective. My hope of meaningful treatment has not been increased by NIH behavior since your announcement.

The above happened since I got sick, without the NIH funding the disease as a global crisis. That's half a century, plus or minus onset indefiniteness.


Here is a little about myself:

I want to know what it is like to be healthy. I have not had a remission. I have been bedridden except bathroom for many years. That means never leaving the house for any reason, including medical reasons. Leaving the house is dangerous. Emergency rooms are dangerous.

I am limited in what I can do, including speaking and listening. I have more symptoms and signs than anybody ever wants to think about.2 There is no support for bedridden sufferers of this disease and I do not know how I will survive. You probably don't want to know how I have been treated since my 1-2 earliest memories.3 Even diagnosis is tentative, for all of us, due to the lack of science.4

Time to diagnosis (moderately firm, still with many questions): more than 40 years.


Francis, I do not understand these Trans-NIH whatevers. I do not understand "outlin[ing] a vision … to create a process". I only know one thing: you are the most powerful person in the history of science. If you decide to leave an even larger legacy, you can stop this pandemic, rapidly.

I have a proposal. I believe you will find it supports Moral Law. You described it in one of your books: "the denunciation of oppression, murder, treachery, falsehood and the injunction of kindness to the aged, the young, and the weak, almsgiving, impartiality, and honesty."

Will you personally testify in front of Congress on the need for AIDS-level urgency and priority? This is what will persuade me that you are serious. We will back you.

Samuel Wales

P.S. I will also post this post to #MEAction.

Footnotes:

1
Obama's 2016 HIV/AIDS request is $31.7 billion. Of the latter, $2.8 billion is for NIH research; in addition, $6.34 billion is for global funding, including international research.
2

In the 1980s and 1990s, doctors kept testing me for HIV and asking me elliptically if I was gay, despite the fact that I was straight and never practiced unsafe sex. I am incomparably sicker now.

The disease is usually mischaracterized as having only a few symptoms.

3

I was punished for being sick.

4

Please do not take my case as characteristic. Many people, such as Whitney Dafoe and Karina Hansen, are worse than me. They should be focused on more.

28 comments :

  1. I have nothing to add to this. As usual, well said. Sigh.

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  2. Insightful as always Samuel. I found this photo today that goes perfectly with the article. I made it public on my page so hopefully it will share here.
    https://www.facebook.com/photo.php?fbid=1269706369722597&set=a.214316358594942.66794.100000497383171&type=3&theater

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  3. hmmm - no hyperlink. But if you copy and paste, you'll see the photo. It's titled 'A lot has changed since the 80s'. I'm not sure if my friend Sonya made it or found it. No author on it.

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  4. A very powerful letter. Thank you for writing it. ME seems to be a tragic constant in an age of change. I hope it gets through to him.

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  5. Thank you, spoonseeker.

    Misopathy against this disease has indeed been persistent. I hope it gets through too.

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  6. Thank you, leelaplay.

    Great photo. If you enter HTML, the link will be clickable.

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  7. This is so well worded Samuel. My wife took her life a year ago today after suffering with M.E. for 20 years. I came down with the disease in 2009. Char was convinced she sexually transmitted it to me and she was so guilt ridden. Before she died she asked me to put the epitaph "I told you I was sick" on her headstone, tell her story and advocate for Federal research dollars. I've had a lot of support doing this but your letter is so perfectly worded. May I borrow some parts of it and tell it to others?
    I'm sending you love and light. My best buddy in Australia is severely ill, like you and is young with a wife and 2 children. I'm trying to help him in any way I can. I'm moderately ill with PEM being my most profound symptom

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  8. This is so well worded Samuel. My wife took her life a year ago today after suffering with M.E. for 20 years. I came down with the disease in 2009. Char was convinced she sexually transmitted it to me and she was so guilt ridden. Before she died she asked me to put the epitaph "I told you I was sick" on her headstone, tell her story and advocate for Federal research dollars. I've had a lot of support doing this but your letter is so perfectly worded. May I borrow some parts of it and tell it to others?
    I'm sending you love and light. My best buddy in Australia is severely ill, like you and is young with a wife and 2 children. I'm trying to help him in any way I can. I'm moderately ill with PEM being my most profound symptom

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  9. Amen. Nothing to add. Thank you.

    michael allen

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  10. As you already know, I love everything you wrote here and am always in awe with your way with words. I will do everything I can to try to get your letter to reach Collins.

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  11. Yet again, another poignant blog. Thank you so much for your efforts. - Tracey Smith

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  12. Awesome letter. I wish people understood that being forced to lay in the bed ALL the time is not "wonderful" which I have heard. It is painful especially when turning over alone is almost impossible. It leaves you bruised feeling all over, lowers your circulation thus causing painful spasms. I have had people not sick and people that are chronically ill but can still walk and sit up some tell me oh they wish they could just lay in bed all day. No, as I am sure you can attest to...no they do not want to have to do this. I will look forward to hearing the response you get.

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  13. sorry, I did not see do not leave anonymous. The above post is me...dani

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  14. Good perspective for those who counsel sufferers to be patient.

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  15. Thank you for taking action when so ill to write this letter.

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  16. Hi Walt,

    Thank you. Please do borrow parts of this letter or the whole thing.

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  17. Hi Rambler,

    Thank you, and thank you for your effort.

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  18. Hi dani,

    Definitely. Being bedridden is NOT "you're OK if you are horizontal".

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  19. Hi Anonymous,

    Thank you for reading. I believe everybody must take action as much as possible.

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  20. I was a hiker. Canada, US Rockies, along the shores of the great lakes. For years. Now, I sit or lie here looking out the window at the garage roof. Day after day, after day, after day, after day..... Only rarely am I able to get out of the house. I am one of the lucky ones. So many are much worse off. I was gradual onset. A slow drop to the bottom. So many are bed fast from day one and are never able to rise again. 40 years sick now for me, 20 years for my son who also has ME/CFS. Samuel, from the bottom of my heart I THANK YOU for speaking so eloquently for all of us. I say a prayer that your voice will be heard and things will change. But then again........I have said this prayer so many times before and no one answered.

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  21. I am so glad I found your blog. I was first ex with CFS/ME and FMS after years of various symptoms. Finally, in March 2013, I found out the root is Lyme disease. Like ME, there is little to no research done on chronic Lyme (or whatever New term we call it), there is no accurate testing, treatment plan, insurance coverage...I could go on. There is millions/billions? more going to Zika virus than to ME and Lyme combined. Totally criminal. Thank you for being an advocate!

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  22. Hi Belle/readbetweenthelyme,

    Thank you. These diseases are in it together. Thank you also for being an advocate.

    (By the way, I also possibly have one or more tick-borne pathogens, but for health reasons little capacity to investigate the question. Had an Igenex long ago but was told it was ambiguous. Ticks all over me; lived in a Lyme location.)

    ===

    Perhaps Francis would like to massively fund extramural metabolomics research now, and also inform Congress.

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  23. A masterful and heroic exposé. And which almost perfectly mirrors my 37 year (at least) lived life-experience.

    Thank you so much Samuel Wales.

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