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California 2014: IACFS/ME Day Three: Translating Science into Clinical Care: 22 March 2014
Day Three, and Searcher continued to deliver the goods. We hear about the PANDORA national survey results, a very big familial case study from Spain, results from the Canadian Community Health Survey, more results from epidemiological studies (and a look at treatments and...
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My letter to 60 MINUTES

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Dec 7, 2009.

  1. Dreambirdie

    Dreambirdie work in progress

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    Dear 60 MINUTES Story Editor:

    For the past 32 years I have been living with CFIDS (Chronic Fatigue Immune Deficiency Syndrome), aka CFS (Chronic Fatigue Syndrome) or ME (Myalgic Encephalomyelitis). When my health fell apart, more than three decades ago, I was a fit athletic college student. I skied all winter long and swam a mile each day after classes. Then one day out of the blue, I was ambushed by the worst "flu" Id ever had, and as it turned this flu never went away. I went from one doctor to the next and the next and the next, only to be dismissed as a malin-gerer or a "mental case." For the next seven years I had absolutely NO diagnosis for my condition. Along the way, I endured the most severe bouts of debilitating exhaustion I had ever experienced in my life, unimaginable to those who have never known it. Though it would be impossible to summarize ALL THAT I HAVE DONE to attempt to heal myself of this hideous illness, suffice it to say I have left no stone unturned in the pursuit of a cure. Despite my ongoing persistent efforts, and my ocassional remissions, I am still only minimally functional, unable to work or travel, and confined mostly to my home.

    Unfortunately, I am not the only one in this predicament. There are over 17 million people world wide, and between 1 million and 4 million people in the US alone, who suffer from CFS.

    Sadly, our government agencies have failed us. The amount of funding that has gone towards CFS research is pathetically low compared to money invested in other illnesses. The CDCs changing definition of CFS has allowed those that may be suffering from depression or 'idiopathic chronic fatigue' to be included in the patient cohort of CFS studies. Their promotion of CBT/GET as treatment for CFS is a joke. And the CDC history around the Elaine DeFrietas study, dismissed so arrogantly by them in the 90s, is scandalous and warrants serious investigation.

    The recent news of the discovery of the XMRV virus in 68 of the 101 blood samples of the CFS patients tested at the Whittmore Peterson Institute in Nevada has been both a HUGE relief and validation for those of us who suffer with this debilitating disease, and a scare at the same time. Considering that this virus can cause prostate cancer and other serious illnesses, is a sobering thought.

    I'm writing to you at 60 MINUTES to kindly request that you please do a segment about CFS, and especially on the breakthrough of the recent XMRV findings.

    Thank you so much for reading this letter and for the great work that you do.
    With all the best to you! xxxxxxxx


    CFS EXPERTS ON VIDEO and CONTACT INFORMATION

    Judy Mikovits, Ph.D., director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada, and co-author of the recent research on the XMRV retrovirus findings.

    http://nevadanewsmakers.com/video/default.asp?showID=938

    WPI media coordinator Frankie Vigil
    Tel: 775-336-4555; Mobile: 775-287-5924; Fax:775-323-9021
    frankie.vigil@rrpartners.com


    Nancy Klimas, M.D., director of Dept. Immunology at the University of Miami School of Medicine and the V.A. Medical Center, and nationally known for her research and treatment of CFS, Chief Medical Officer of the brand new CFS Center. http://www.cfsclinic.com/
    TEl: 305-243-3291
    NKlimas@med.miami.edu

    VIDEOS of Dr. Nancy Klimas
    http://www.youtube.com/watch?v=5ftbsOkYVxE&feature=autofb
    http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv


    Donnica L. Moore, MD, President, Sapphire Women's Health Group LLC,
    highly regarded as a womens health expert and advocate, and regular GMA Health contributor, on CFS and other health related topics.
    www.drdonnica.com
    Tel: 908-234-2702; Fax: 908-234-2703
    DrDonnica@aol.com

    VIDEOS of Dr. Donnica Moore on Good Morning America
    http://www.youtube.com/watch?v=JFBY8UKMVp0
    http://abcnews.go.com/Video/playerIndex?id=8664151


    CFSAC MEETING, October 30, 2009
    The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

    http://videocast.nih.gov/Summary.asp?File=15408
    http://videocast.nih.gov/Summary.asp?File=15409



    RECENT INTERNET ARTICLES ON CFS and XMRV


    The NY Times Q & A with Dr. Nancy Klimas
    http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/


    The NY Times Expert Answers on CFS (Dr. Nancy Klimas)
    http://consults.blogs.nytimes.com/2...cp=1&sq=chronic fatigue syndrome&st=cseExpert


    From BioEd Online
    http://www.bioedonline.org/news/news.cfm?art=5704


    Assorted Science Magazine articles
    http://www.sciencemag.org/cgi/content/abstract/1179052v1
    http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus#comments
    http://www.cancer.gov/newscenter/pressreleases/CFSxmrv
    http://www.nature.com/news/2009/091008/full/news.2009.983.html
    http://www.sciencenews.org/view/gen..._might_be_culprit_in_chronic_fatigue_syndrome


    Assorted Other Media articles
    http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=2
    http://www.npr.org/templates/story/story.php?storyId=113613955
    http://online.wsj.com/article/SB125501227713473525.html
    http://www.latimes.com/news/nationworld/nation/la-sci-fatigue9-2009oct09,0,3368993.story


    CFS FUNDING INFO
    http://www.hhs.gov/advcomcfs/meetings/presentations/mcclearyoct09.pdf
    http://www.pandoranet.info/documents/LONG_VERSION_PANDORA_OPED_JULY_12,_2007.pdf
  2. Dreambirdie

    Dreambirdie work in progress

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    I sent my letter to 60 MINUTES about a week ago, after they requested more information from me upon receiving my email re: CFS/XMRV.

    The WPI folks have also sent several emails to them, but have not heard back anything yet.

    I asked Dr Donnica to send a letter too. Hopefully she will do that soon.

    For anyone else who is interested their street address is:

    STORY EDITOR
    60 MINUTES
    CBS News
    524 West 57th Street
    New York, NY 10019
  3. Marylib

    Marylib Senior Member

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    New Zealand
    Wonderful!

    Dream, you are a dream.

    I think I noticed that you called XMRV a virus, rather than a retrovirus. I am wondering if we need to make the point that it is a retrovirus..like HIV. That gets attention up.

    If you did that and I just read wrong -- please forgive. I don't trust my brain as far as I can throw it ....but I can't throw it. I still need the little bugger.
  4. Dreambirdie

    Dreambirdie work in progress

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    Hi Marylib--

    You're right. I did call it a virus... as do many articles on the topic. I don't think it will be a serious problem. If the 60 MINUTES producers actually open some of the links I sent, they should be able to figure it out.
  5. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Awesome job Dreambirdie! Thank you so much. :)
    I hope they answer soon.

    tee
  6. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    wow

    That is a great letter and took so much work. Thank you

    glen
  7. KC22

    KC22 Senior Member

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    Awesome job!!! I liked how you included all the links, so if they are really interested they could find important information easily. You cut down their research time.

    Thanks, again, for all of your hard work.
  8. Dreambirdie

    Dreambirdie work in progress

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    Thanks for your nice feedback.

    I'm hoping others will send some letters as well.
  9. JustJack

    JustJack put on yer dancin' shoes

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    Sacramento CA
    Wow

    What a letter. I sure hope that the urgency of this issue becomes relevant to the general population soon, (like a blood supply announcement), and programs flock to present information and research updates.

    Best wishes,
    JJ
  10. MEG

    MEG Senior Member

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    Blood Supply

    Dreambirdie
    Thanks for writing the letter. I will write one too. I always use the imformation that our world blood supply is contaminated...that gets peoples gander up, but I believe it is a statement that they will have to prove wrong...the burden is on them.

    Just a reminder for all of us to keep writing congressmen, senators, CDC...anybody we can think of. A new human retrovirus is HUGE!
  11. Dr. Yes

    Dr. Yes Shame on You

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    Hillary Johnson on 60 Minutes?

    Hi Dreambirdie,

    How about getting Hillary Johnson involved in a 60 Minutes piece on XMRV? She has journalistic cred and would probably know how to streamline comments / work with the producers there, recently wrote that tough Op-Ed piece in the NY Times about XMRV and the CDC, and is very qualified to induce the kind of "exciting" or "infuriating" investigative report that 60 Minutes depends on. I can't think of an advocate I'd rather have on TV, since she could also provide what has been sorely missing from the recent media coverage: a succinct history of the disease's discovery and subsequent whitewashing by the CDC, NIH, and others. "Osler's Web" was written so long ago, and this seems like a perfect time and venue for the story to be re-exposed, and in a big way, on TV. So maybe you could recommend her as well to 60 Minutes?

    I'm glad you recommended Dr. Klimas to them, as she has been speaking out in such strong terms about CFS lately (e.g. her public comments that she would rather have HIV at this time than CFS), and could also emphasize that XMRV is BY NO MEANS the first "believable" physical finding in CFS research (as it has been unintentionally, but consistently presented), that in fact there are thousands of research papers documenting abnormalities in CFS patients. In short, I would hope that if we actually DO get a 60 Minutes piece, that it would do more than just re-explain the XMRV findings but actually give ME/CFS as a whole a decent presentation, for once! Dr. Donnica Moore didn't have the chance to do that on the Dr. Oz show and elsewhere, and also unfortunately presented the XMRV findings as "finally, NOW they cannot say it's psychological!", giving many the impression that up til now there was so little physical evidence that psychogenesis WAS a legitimate argument. The CDC, NHS (in UK) and others have labored long to create that impression, which has resulted in the problems so many of us have had with ignorant doctors and immovable insurance providers. I think this would be the opportunity to set the record straight.

    Btw, great idea and great letter! Thank you for doing that! :D
  12. Anika

    Anika Senior Member

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    Dreambirdie,

    Thank you for sending such a good letter!

    The list of contacts and links for XMRV and CFS is really good - do you mind if other people copy this for our own letters to local media, etc.? This makes their jobs much easier - and ours.

    Anika

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