1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Letter to CBS

Discussion in 'Action Alerts and Advocacy' started by usedtobeperkytina, Dec 29, 2009.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    I e-mailed 60 Minutes twice. The second e-mail got a response that I should send a snail mail letter.

    I have been very busy since then. I had it on my list of things to do. And I finally got to it.

    But I want to be accurate. So, please let me know if you see something here that is not accurate. I also welcome any constructive criticism.




    The story or Chronic Fatigue Syndrome and Xenotropic Murine Leukemia Virus-related Virus would be a good fit for your program.

    New: In October 2008, Science Journal published a Whittemore-Peterson Institute for Neuro-immune Disease study of their discovery of an active retrovirus in 67% of CFS patients and only 4% of healthy controls. The institute says later tests showed 98% of CFS patients showed antibodies for this recently-discovered virus.

    Broad Public Interest: In vitro tests show a high likelihood that this virus is transmitted through blood. At the Chronic Fatigue Syndrome Advisory Committee meeting in late October 2008, the main topics was the new virus discovery and concern of contamination in the nation’s blood supply. Some there advised CFS patients against donating blood. They called on Jerry Holmburg, the senior advisor for blood policy in the US Department of Health and Human Services, to speak on the topic with about a day’s notice. He stated they will start testing as soon as an FDA approved test is developed. Dr. Daniel Peterson, with the WPI, said he has been contacted by attorneys considering representing people who think they became sick with CFS from contaminated blood transfusions.

    Government Failure: The US Center for Disease Control and National Institutes of Health have focused their attention on possible psychiatric causes, despite numerous published studies showing CFS patients have signs of a dysfunctioning immune system and latent virus activations, both of which point to a retrovirus infection. Meanwhile, private labs have seen evidence and pursued possible viral causes for CFS. How can an independent lab with private funds find a virus in only two years when the CDC and NIH was supposed to be studying CFS for twenty years? Bias, neglect, corruption, or cover up are all possibilities.

    Conflict: The XMRV announcement has led to some patients demanding the resignation of William Reeves, director of the CDC’s CFS Research Program after he made critical comments on the WPI study as published in The New York Times. One of the recommendations of the CFSAC, a result from both their May and October meetings, was that the CDC “establish progressive leadership at the CDC that can achieve efficient, meaningful progress in CFS research, clinical care and education.”


    “Outbreaks” of an illness, later labeled chronic fatigue syndrome, started being reported to the CDC in the mid-1980s. The complexity of the illness along with failed early attempts to find the cause, led to many government and private researchers and clinicians dismissing the illness as psychiatric, even saying it is a form of depression. Contributing to this conclusion was that 70% of patients are female, although men and children have also been diagnosed. Many doctors consider CFS to be a "wastebasket" diagnosis and not a disease with a separate entity. Published study results in the recent 10-15 years have not changed this deeply ingrained paradigm.


    This situation resulted in only 15% of people with CFS in the US, according to the CDC latest report, not being accurately diagnosed. This has led to worldwide suffering and over-prescribing of anti-depressants. Estimates from the CDC now say that 1 million to 4 million actually have the illness. With very few “experts” in the field of CFS care, some patients spend much money traveling to other states in hopes of finding a knowledgeable doctor.
    A person with CFS may look well, but some are virtually invisible to the public as their disability has led them to be housebound and a few even bed bound. Others with a milder version still have cut back on many normal activities, social, religious and otherwise, just so they can continue working. The cost to the government in Social Security Association disability benefits and loss of productive work force, in addition to money spent on standard and alternative treatments, is a drain to all of society.

    All of this has led some to call for an investigation into the failure of government agencies to follow the science and end this mess years earlier.

    Tina
  2. Kati

    Kati Patient in training

    Messages:
    1,817
    Likes:
    866
    Typo

    Tina, at first glance (haven't read it all) on the first sentence it says... In October 2008- it should read 2009

    And thank you for your work!!!:)
  3. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
    Hi Tina--

    Great that you sent them a letter too! I sent one right after Thanksgiving, and have hoped others would as well. Mine is somewhere on this forum...
    :confused: I'm too tired right now to look for it.

    Thanks again.
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    I would

    I would love to have many more people join me in contacting them.

    Best to write your own letter in your own words.

    Tina
  5. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    wow

    That is excellent Tina. Its great that you sent it. I sent one too but my cognition etc is so bad now, I wanted to show that there is interest. Please let us know if you hear back again. I heard back from W5 but it was just one of their standard reply letters.

    glen
  6. caledonia

    caledonia

    Messages:
    2,692
    Likes:
    1,288
    Cincinnati, OH, USA
    Overall it's looking great! Good job! Here are a few things that jumped out at me:

    "Published study results in the recent 10-15 years have not changed this deeply ingrained paradigm."

    The meaning would be more clear if it said something like: Published study results in the recent 10-15 years, showing neuro endocrine immune abnormalities, have not changed this deeply ingrained paradigm.

    "This situation resulted in only 15% of people with CFS in the US, according to the CDC latest report, not being accurately diagnosed."

    That would be only 15% have been accurately diagnosed. (the opposite of what you said). Just take "not" out.

    Both times when you mention Oct. 2008 it should be Oct. 2009 (first two paragraphs).


    "The cost to the government in Social Security Association disability benefits and loss of productive work force, in addition to money spent on standard and alternative treatments, is a drain to all of society."

    Technically, it's the Social Security Administration or just Social Security. I would just say "Social Security disability benefits".

    It would read better if it said the loss of "a" productive work force. Or you could say something like the loss of productive workers in the prime of their lives if you wanted to put a little more emotional spin on it.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Thank

    Thanks, it was a first draft. I will look more closely at the suggestions.

    In their e-mail response, they said to keep it to the point. So I did. And I focused on why they would want to do the story.

    Tina
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Ok

    Help me out. If they ask, who is calling for investigation? I know I have seen some say it. But I can't remember if it was anyone who gave testimony at the CFSAC meeting or have I just seen people on message boards?

    If I can't find it in CFSAC testimony, I may have to take that out.

    I feel pretty confident in the rest as being accurate and if called on, I can give source.

    In fact, on the second page, I plan to just give a list of sources. The easier it is for them to do the story, the more likely they will do it. So I am just going to hand them all the sources so they don't have to start from scratch.

    Tina
  9. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,793
    Likes:
    893
    US
    Yeah, definitely give sources to make it easier. Good idea.

    Your question about investigation. Is it the HHS you mean? I'm not sure.
    "The U.S. Department of Health and Human Services (HHS) has formed an interagency scientific working group on XMRV. The Blood XMRV Scientific Research Working Group will report to the Department's Blood, Organ and Tissue Senior Executive Council through established mechanisms. No formal statement has been issued yet, but the working group includes representatives from the DHHS Office of Public Health and Science, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA)."
  10. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    36
    Whitemore Angle

    I think this is very solid.

    I also think it is possible this could get lost amidst many other medical scandals going on in the world today, most of which are likely being sent to 60 Minute producers on a weekly basis.

    To me, the Human Interest story of a mother (Annette Whittemore) heroically trying to save her daughter and stumbling upon a new disease which now threatens the entire population, is a stronger angle than names, dates and medical jargain.

    I recall a 60 Minutes piece about a man who desperately tried to find a cure for cancer in order to save himself, and actually created a machine which holds great promise (I believe it is the "Kansas" machine")

    In any event they ran this piece TWICE- because what everyone remembered was not the science and scandal- but the struggle and heroism of ONE MAN. Ultimately, they want to pull heartstrings- that's the HOOK that will get people interested in the scandalous handling of this illness. Once you reel viewers in they will take interest in the details of what has occurred. Without that- they'll tune out pretty quickly.

    BTW- Kudos to you for all of this effort, and great info- You are correct that we should all write a letter, instead of critiquing yours!

    But yes- to answer your request- I think all of your great information runs the risk of getting lost without a singular name, face and heart behind it. The angle is Whittemore and her daughter.
  11. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    interesting quote

    Tina,

    Great job. I like how you laid it all out so clearly.

    Summer just posted an article in Media Links: No Discussion that has an interesting quote you might want to include. You'd have to go back there for the source.

  12. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Well

    Well, I do agree a face needs to be put on it. The face can be a sufferer or the Whittemore family. Or even Gina who didn't get a diagnosis until after she tested positive for XMRV.

    Maybe someone else will write that personal story letter to 60 Minutes. When I watch their show, they include the human drama, but the human drama is not enough. They really like corruption and government failure. Oprah likes to do stories on human drama alone.

    Without the government failure, there is only sick people. And every illness has that.

    From my work in the news business, you decide if it is worthy of a story, then you decide on the lead. The lead can be the anecdote, usually the story of one person impacted by the thing you are writing about. After telling the person being impacted, the anecdote, you then tell the details of the story. Other way is a summary lead.

    But by all means, write that letter with that focuses on the human drama. I agree that they will want that, but my point was to justify their doing the story because of the government failure and threat to the public at large as a first step. After they decide it is worthy, they look for the personal anecdote, usually.

    When I do the sources on the second page, I will mention that they can contact me to get in touch with others affected by CFS.

    I am signing it as "A Chronic Fatigue Syndrome Patient since 2003." So if they want a face, they will realize they can call me.

    Please, everyone else write your own letter. There are just so many aspects to the CFS story that letters to them approaching from different angles will increase the chances of coverage, what we want. Maybe they don't get excited with mine, but you will say something that hooks them.

    Tina
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    As to

    As to other medical scandals, I think the reason this should be put on the top is the threat through the blood supply. That broadens the interest to every single person who has received blood transfusion or might in the future.

    Tina
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    investigation

    Now, who is calling for investigation? Did anyone at the CFSAC meeting call for investigation? I know I didn't imagine it. I just need to know who to refer them to if they call.

    Tina
  15. Andrew

    Andrew Senior Member

    Messages:
    1,945
    Likes:
    1,189
    Los Angeles, USA
    Hi Tina, I agree with the idea of humanizing the story. Also, making it a little more dramatic.

    http://www.youtube.com/watch?v=4p6kcBdSsAc&feature=related

    A medical professor's job is being threatened for trying to help people with CFS. He is not alone. A previous professor was forced out because of antipathy toward CFS sufferers and CFS research. Medical schools are not training doctors. The CDC is refusing to require reporting.

    The problem is not new. Many years ago the The CDC was found to be taking money for CFS research and spending it on other things. Etc.

    The result is widespread neglect, patients suffering, lack of good diagnostic tool, increased medical costs because of all the unfocused testing. etc.

    Parents of one patient became fed up with all the opposition and formed their own institute. Whittemore -Peterson. They discovered a retrovirus that could be implicated in CFS. But it needs more research. And we can't be sure where it will go. But in the mean time, patients are still being ignored. Medical professors are being threatened. The CDC is ignoring all advice from their advisory committee. Etc.

    I don't know if this is too involved for 60 minutes. But I just spent energy writing it and I don't want to delete it. Maybe part of this idea can be used.
  16. Koan

    Koan Be the change.

    Messages:
    2,597
    Likes:
    53
    I agree with Tina that this will become a more compelling story to them if they recieve a lot of different letters with different angles.

    I think Tina's letter is excellent and covers a lot of ground.

    If we think of things that are missing, why not write our own letters around those elements.

    The more intelligent letters with fresh angels, the better!

    Edited: Well now, I almost hate to fix this because we can always use more fresh angels :p but I meant fresh angles.

    Bring on the Fresh Angels!
  17. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
  18. Andrew

    Andrew Senior Member

    Messages:
    1,945
    Likes:
    1,189
    Los Angeles, USA
    Okay. I'm going to write to, using the idea I suggested. Tina can use hers. And between all of us, they can see different angles for the same topic.
  19. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
    Great, Andrew! It sounds good to me. :):):)
  20. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,793
    Likes:
    893
    US
    Regarding testing the blood supply, they have a basic plan in place, but I guess it'll take them a while to get this figured out. News places would LOVE this topic because people would get all worried about it, lol.

    "Dr. Jerry Holmberg of the HHS Office of Public Health and Science made a brief presentation on Oct. 30, 2009 to the DHHS CFS Advisory Committee. He described the existing response systems that address threats to blood safety, such as new and emerging infectious agents like XMRV."

See more popular forum discussions.

Share This Page