Wednesday, May 11, 2011

HAVE YOU NO SENSE OF DECENCY?



Here is my testimony at the Chronic Fatigue Syndrome Advisory Committee meeting on Wednesday at Health and Human Services in Washington, D.C.  Below the written testimony is the video clip.

My name is Mindy Kitei.  I’m a science reporter who’s covered ME/CFS for twenty years.  Last June, I began my blog, CFS Central, in honor of my friend Nancy Kaiser.

I met Nancy in 1994, while working on an investigative piece for Philadelphia magazine called “The AIDS Drug No One Can Have” about the experimental HIV and ME drug, Ampligen.

Nancy had a severe case of ME. She had multiple seizures every day. When she tried to sit or stand, her blood pressure plummeted; she often crawled instead. She tried many experimental treatments to get well.

Nancy died on June 15, 2008.  I naively thought she’d never succumb to the illness, as if by sheer will she’d keep herself alive.

Three other ME patients whom I interviewed in 1994 have also died of the disease.

Despite its gravity, despite ample evidence that ME is an infectious disease, the government treats it like a joke. The CDC and parts of the NIH have been playing a shell game:  studying patients with simple fatigue or chronic fatigue or depression—but labeling them CFS patients. 

Even when the CDC conducted its XMRV study, it studied the wrong cohort and refused to do an actual replication of the Science study.  It’s just a different kind of shell game from the bogus psychological CFS studies that are the agency’s trademark.

To the CDC and NIH scientists who’ve been doing this ludicrous research for three decades and sweeping a worldwide human catastrophe of 17 million people under the carpet, I say to you:  Have you no sense of decency at long last?

ME patients are suffering from a serious infection— most likely a retrovirus—but are told by charlatans to exercise and have a positive attitude. 

Researchers in government and at universities, as well as the CFIDS Association, admonish desperate patients that taking anti-retroviral drugs is medically indefensible.  When the healthy reprove the sick that they’re impatient and reckless and foolish and need to wait for treatment, I say there is no treatment, and where are the drug trials?  Thirty years and not one approved drug and none in the offing.

ME patients should have the same freedom to try medications that AIDS patients had in the early days.  The AIDS patients became their own advocates because there was no one advocating for them.  The same holds true for ME patients now. Patients are gravely ill, and they have the right to treatment.  To say that they don’t—that’s what is medically indefensible.

The U.S. government conducted the Tuskegee Syphilis Experiment from 1932 to 1972.  The study tracked the progression of untreated syphilis among poor African American men but didn’t tell them they had syphilis. The men got sicker and many died.

In 1997, President Clinton apologized to the remaining Tuskegee men.  Clinton said:  “What was done cannot be undone. But we can end the silence. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.”

The United States government has watched ME patients suffer and die for 30 years, and has done nothing, and that is shameful.

In less than a year, more than 125 thousand patients from 108 countries and territories have found my blog, CFS Central.  Patients write to me asking for help every day.  Toward that end, I request a meeting with Kathleen Sebelius, Howard Koh, Francis Collins, Tony Fauci and Thomas Frieden to discuss how to turn this situation around, by funding good studies and finding effective medications.

About funding ME, Dr. Dennis Mangan said during this meeting:  “We’ll use one dollar and try to make two.”   I’m sure Dr. Mangan means well, but it isn’t enough.  As AIDS activist Larry Kramer said years ago about HIV patients:  “We are not crumbs.” After thirty years of neglect, ME needs research parity with HIV. We also need a czar who will oversee ME and report directly to President Obama. 

Finally, we need to enact the ME/CFS Care Act.  Much like the Ryan White Care Act for HIV patients, the ME/CFS Care Act will provide health coverage to needy patients.

In closing, I ask you, Dr. Wanda Jones, to ensure that this meeting occurs.  Dr. Jones, will you help me? 






BLOGGER LOST ALL THE COMMENTS ON THE POST.  SHOULD ANY OF YOU WANT TO COMMENT AGAIN, I WILL OF COURSE POST THEM AGAIN.

41 comments:

  1. thank you mindy for your fire. it is about time someone spoke with conviction and anger to the govt that has stood by for 30 yrs and allowed this disease to strike down thousands upon thousands of patients every year. it truly is a crime....also vividly brought to life today by the number of young people/children who now suffer from this disease that should have never been allowed to spread down through at least 3 generations. please keep using your eloquence to speak for those of us who are too ill to do so. we hold you in the highest esteem and appreciation.

    regards, lisa

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  2. mindy,

    it was really amazing to watch you in action. you were great! great! great! great!

    and although your writing and journalism is wonderful and a gift to our community, after seeing you speak today i say that you have to do more than only work thru yr writing and investigative journalism. you are a natural leader, and a very effective speaker.

    you were fantastic.

    rivka

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  3. Thank You so much Mindy for speaking up for all those out there who are to ill to have a voice. You definetely said what needs to be said which is the plain and simple truth of it all.
    How this government can do so little and watch it's citezens waste away and die from what looks like a retroviral infection that affects the Immune system and the brain is beyind my comprehention.

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  4. Deep gratitude.

    --SlowDescent

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  5. You were great today Mindy. Thank you for everything!

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  6. Mindy, you are amazing! Your testimony is a wake up call to the US government. I hope it wakes them up. I hope you get your meeting. I can't think of anyone better to educate the government. Thank you from the bottom of my heart.

    Patricia Carter

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  7. It is a blatant crime against humanity by the Government. My family has suffered watching my teenage daughter grow older without the assistance of my provincial and federal governments trying to find out what is going on and have found the neglect unbelievable. I don't know how government officials can sleep at night putting out articles in the media saying that exercise reverses this illness. There is so much corruption in the denial of recognition of this illness. To think that about a million people in Canada suffer with various forms of cfs/fibro and the government managed to act as though this spreading illness could be ignored will make up the stories of movies and documentaries no doubt at some point in the future. I just want us to move forward NOW - not decades from now. My daughter just can't take the physical pain of this infection anymore.

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  8. Mindy I was cheering you on from home as I watched you give your speech. I am so fed up with the pussyfooting around that goes on at these meetings, the backtracking, especially from Dr. Klimas, the passive-aggressiveness of McCleary and Vernon. There were some bright spots at this recent meeting, especially in the testimony, but whether anything will come of it, who knows. I do know that if I were the FDA or CDC representatives, or anyone from CAA, I would not be able to sleep at night after hearing those testimonies and seeing the faces of sick children who right now have no hope of ever getting well. Thanks for being the conscience that so many of those people are lacking.

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  9. Oh my god, Mindy, thank you so much!

    I couldn't watch CFSAC live, I'll too ill to figure out the technology or make it work, so I didn't get to see you give this tour-de-force live. But I've shivers just reading your words here and tears by the end of it.

    "Much like the Ryan White Care Act for HIV patients, the ME/CFS Care Act will provide health coverage to needy patients."

    THANK YOU SO MUCH FOR FIGHTING FOR US, MINDY!

    THANK YOU!!

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  10. Thanks so much for speaking Mindy. You were fantastic. Strong. Clear. Keeping the truth of past behaviour, and past non-action, up front and center.

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  11. Mindy, you are awesome. Thank you so much. I agree with Rivka, btw ;)

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  12. Thank you so much, Mindy, for your courage, insight and intelligence. You said exactly what needed to be said in exactly the way it should have been said at exactly the right time. Perfect!

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  13. Can I print this out and use it for the next doctor I see? I can't seem to speak up for myself when I'm there. They end up thinking I'm a nut case.

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  14. Thank you, thank you, for being one of the few well people to stand by us.

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  15. Mary,
    Sure, show the post to your doctor if you believe it will help. May I also suggest that you bring an advocate who can help stand up for you--or better yet, try to find a doctor whom you don't have to convince?

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  16. In thanks for everything Mindy does for us, I am putting $5 in her tip jar, to help her continue doing what she does.

    UK sufferer since childhood.

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  17. OMG...your presentation was brilliant, Mindy. Thank you so much.

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  18. Thank you so much Mindy. Love you!

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  19. In answer to kitei, I'm working on finding a doctor. Have been now for 22 years. No advocate either. My bestie has it too and I don't get out to meet people. Most friends have gone by now. This all seems to be part of the CFS/ME experience for many. I'm not whining, just very frustrated and I haven't access to words like before. Something like this is readable in an office. I think it could be very helpful. I'm thankful for it.

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  20. I saw your testimony on the live stream from CFSAC yesterday, Mindy - it was fantastic! You were on fire! You had exactly the right tone and such hard-hitting words.

    It is good to see someone healthy like you being angry on our behalf. It breaks down the barriers and shows that we're not outcasts. Thank you.

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  21. Thank you for your testimony Mindy- it was excellent! I am sorry about the loss of your friend.

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  22. Thanks a million, Mindy. I'm not well enough to watch more than a few minutes of video, so I really appreciate you posting this for us to read.

    I also try to keep myself from anger - it eats up too much of my tiny energy allocation - so I am immensely grateful for your anger and your continuing fight on our behalf.

    -Jocelyn

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  23. The clip of Mindys' brilliant testimony is here:
    http://nih.granicus.com/MediaPlayer.php?view_id=26&clip_id=214 at 04:40. If you did not see it live you need to check this out, as powerful as the written text is, the live reading of it is even better. Mindy thank you for speaking for all of us. We are no longer willing to sit in the back of the bus.

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  24. Could I draw the attention of your UK readers to this?

    British MPs to meet Annette Whittemore and Dr Judy Mikovits, 19 May 2011

    http://www.meassociation.org.uk/?p=6129

    Could UK readers please contact their MPs and ask them to attend? This is a fantastic chance for us.

    http://findyourmp.parliament.uk/

    http://www.parliament.uk/about/contacting/mp/

    thank you!

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  25. "Be who God meant you to be, and you will set the world on fire" -- St. Catherine of Siena

    Thank you Mindy. Your fire is burning hot, and hopefully it will start a flame in our government.

    God Bless you.

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  26. Thank you Mindy. You are so passionate. Thank you from the bottom of my heart.

    Ali x

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  27. Again thank you so much Mindy. Your voice and words are a gift.

    x

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  28. >In 1997, President Clinton apologized to the remaining Tuskegee men.

    a fake apology. did you get taken in by that.

    they still didn't admit to the full scope. they covered it up right to the very end.

    Clinton, like Bush Jr and Obama along with all members of Congress are front man who serve the New World Order. They don't give a damn about human life. They have DEPOPULATION agendas. They have committed crimes on a mass scale.

    Where are all those public humanitarian voices to expose the AIDS genocide - namely the hepatitis B vaccinations that intentionally murdered thousands of people in earlier decades.

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  29. Jill Diprose, New ZealandMay 14, 2011 at 9:40 AM

    Thank you Mindy, I am so glad you are these peoples backs -speaking up for all of us around the world who have little voice. Keep up the good work - it doesn't go unnoticed and one day we will get treated like human beings and not like second rate citizens. I hope Wanda listened and maybe has given it thought. Thanks again for going and doing this for us all. (Jill, New Zealand)

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  30. Thank you so much, Mindy. Very powerful. Thank you for being a voice for us.

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  31. Thanks Mindy -- your speech was one of the best in ages.

    My only quibble would be some of your assumptions -- that ME is due to soley an infectious cause, and 'most likely, a retrovirus'. Even the WPI isn't willing to go that far.

    I just wish you would've also mentioned the fact that many folks with ME/CFS, including Andrea Whittemore, also became severely ill after vaccinations, or after exposures to pesticides, solvents, molds and other environmental influences. Then the speech would've been PERFECTION.

    But thank you. Seriously.

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  32. CLARA VALVERDE SAID...
    Congratulations on your presentation! One of the most brillian summaries of our present situation I have read/heard.
    I wanted to let you know what is happening in Spain. Our latest news:
    http://es.scribd.com/doc/55412429/The-Catalan-Government-Want-to-Make-Me-cfs-Dissapear-With

    We have been doing a lot of work over the past 10 years and we are going strong and getting heard:
    http://es.scribd.com/doc/49384546/WHAT-IS-ASSSEM

    Let's keep on!
    Clara
    formacionsalud@hotmail.com

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  33. The best ME/CFS advocacy speech ever! Thank you so much Mindy!

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  34. Yours was the best public comment ever given at a CFSAC! An instant classic. Thank you so much, Mindy!!

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  35. I posted this under the other videos you've put up on the blog but I want to add here my personal thank you for your impassioned plea on behalf of us all. What great great work you do! Here's hoping you're taken seriously and they follow up with your proposals. Thank you thank you thank you.
    Alison - from Scotland, ill with ME for 11+ years.

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  36. Mindy,

    Thank you so much, as always, for being such a clear, powerful voice for us.
    I am so grateful you are putting so much energy and effort into getting
    these desperately important points out there.

    Lots of love to you,
    ~leela

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  37. Thank you for doing this. I am sorry for your loss. I watched the youtube of your speech and it brought me to tears. I want so much for our Australian Government to stop sitting behind its big desk and act on behalf of people with CFS but our Government will not Lead. It just sits and watches and copies. No Humanity - No Decency.
    You know - I had a plumber over today and he heard your speech. I asked him what he wanted most of all for his children and then I told him my wish. I told him " My deepest wish was for my children to have HIV AIDS and then I could die knowing that they would be okay .. that they would be seen worthy enough of helping - of saving." What a horrible wish to have, but it is true.
    God Help Us All.

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  38. "Much like the Ryan White Care Act for HIV patients, the ME/CFS Care Act will provide health coverage to needy patients."

    Mindy, can you tell us more about this "ME/CFS Care Act"?

    Is this pending legislation? Can we write our legislators in support of it?

    I'm one of those needy patients and very ill. Really need to know more, please, about this Act.

    Could you write a column about it, please?

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