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

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

Note: This open letter is also posted on my personal blog at http://thekafkapandemic.blogspot.com/2016/02/open-letter-to-francis-collins-director.html

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.

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.

Categories: Advocacy, Featured opinion, Politics, Research, United States

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2 comments on “Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis
  1. Sissy Clark says:

    Thank you Samuel Wales. I know the toll it took on you to write such an intelligent, informative, and sincere letter. I am so sorry you have not even had the relief of a remission, no matter how short-lived. I have suffered with this truly horrible disease since 1998. I have had the extreme blessing of “getting on my feet” – albeit, far from 100%, a few times, however, I have been at my worst the last 4 years. I say, at my worst, with the qualifier, “so far”. And I pray it doesn’t get even worse. Truly an unbearable state of being. And as you said, I know there are those out there far worse than me, and it takes my breath away to think about these people. Heartbreaking for all of us, from one end of the spectrum to the other. No matter where you may be on that spectrum, it is suffering and life-stealing, that’s what it is.

  2. Mark Camenzind says:

    NIH is finally heading slowly in a better direction, but much to slowly due to lack of funds. We must demand $250M/yr for NIH R&D incl extramural studies by many superb R&D groups worldwide incl in Norway, Austraila etc but also excellent groups in US.

    To get funds, we need to educate every senator, all 435 congressmen, then put them each to the litmus test: will you fund NIH $250M/yr for ME/CFS or will you continue 3 decades of gross discrimination against women and M.E.? If they are not willing to fund this, then they are discriminatory, are not fit for public office, and need to be shown to be unfair, and voted out. The elections are now, so we should also be quizinig Hillary Clinton, Bernie Sanders on whether they will end the discrimination or not, and vote accordingly.

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