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CDC/CFS Program MUST be Investigated by Congress and the Feds

Discussion in 'Action Alerts and Advocacy' started by muffin, Jun 21, 2010.

  1. muffin

    muffin Senior Member

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    It is way past time to insist that the CDC and the CDC/CFS program and Reeves and others be investigated by Congress, the GAO, and whatever Federal orgs can be brought in to really do a work over on the CDC/CFS program for the last 30 years.

    Ideas? Need to post contacts for Congress and GAO, etc. and then we ALL need to hit them with requests for investigation. I have asked time and again and am blown off. But large numbers of people hitting them all over and over might just push them.

    Something stinks so bad at the CDC and it isn't just that moron sociopath Reeves and those that came before him. Something more than just these little people...Time to root it all out and make it public and let the chips fall where they may.
     
  2. muffin

    muffin Senior Member

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  3. muffin

    muffin Senior Member

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    Forgot to add that we can not expect the CAA to do all the work. I don't expect them to, but I'm not a fan of them anymore. (Sorry Cort). This is our disease and our lives and our family's that are/may become ill.

    Please help me get the contacts lined up to really hit and keep hitting. We ALL need to do this. One little person like me, with NO brain, can not keep emailing all these idiots. I just got a response from the Chicago Trib editor that I was the ONLY person to complain about Trine Tsourdaros article on CFIDS/XMRV/Mikovits. Why is that? Why did no one else email the editors at the Trib and complain???? He's just one fool, but still...why only one single comment from me and not tons from all us sick people????

    We also can not let WPI, Cort and Hillary Johnson be the only heavy hitters out there. Come on people with brains, USE THEM!!!
    Sorry if I pissed some folks off with my intensity but it really is so well past time to bang on Congress, the CDC, DHHS, NIH, media, public, and so on. I refuse to be beat on anymore. So now I beat back - with a very damaged brain. But I beat on them all.

    BANG THE DRUM AND BEAT THE HELL OUT OF ALL THESE PEOPLE AND ORGANIZATIONS. NOW!
     
  4. Robyn

    Robyn

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  5. caledonia

    caledonia

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    I read somewhere that you really need an organization such as the CAA to get a Congressional Investigation started (sorry!). Or maybe that was the CAA trying to justify their existence.

    Anyway, here is some info from a lawyer's website:
    Congressional investigations can be initiated in any number of different ways. Oftentimes a committee will request the Government Accountability Office (GAO) to conduct a study and prepare a report on a particular subject. Depending on the findings or recommendations in the report, the committee may initiate an investigation. Recently, the Senate Permanent Subcommittee on Investigations requested GAO to study the issue of credit card rates, fees and customer disclosures and to prepare a report. Based on the GAO report, the Subcommittee: (1) launched an investigation; (2) held a hearing which examined credit card practices, fees, interest rates and grace periods; and (3) subsequently introduced legislation to eliminate certain abusive credit card practices.

    Another fruitful resource on which many congressional investigations are based is information that has been received from an individual who contacted a committee member on a confidential basis. These individuals, commonly referred to as "whistleblowers," are a valuable asset to congressional committees, because they often possess highly sensitive or confidential information about which the committees would not otherwise know or to which the committee would not have access. The House Oversight and Government Reform Committee recently initiated an investigation, and will be holding a hearing, into the conduct of the Inspector General of the Department of State, based on allegations received from a number of present and former staff members, who came to the Committee on a confidential basis, and sought whistleblower status. At a hearing, it is common for these types of witnesses to testify from behind a screen with their voices disguised to protect their identities.

    Here is a link to Hillary Johson's Osler's Web website with info on how the last congressional investigation into CFS happened:
    http://oslersweb.com/newsletter.htm
     
  6. muffin

    muffin Senior Member

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    http://www.gao.gov/fraudnet/fraudnet.htm#federal

    BRAVO ROBYN!!!! More people need to do what you just did.

    Caledonia: FraudNet/Reporting Fraud
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  7. muffin

    muffin Senior Member

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    The GAO is known as 'the investigative arm of Congress'

    The GAO is known as 'the investigative arm of Congress' and 'the congressional watchdog' -- off their Tweet site. Ok. So let's hit our Congress people with requests that the CDC/CFS program be investigated. I have formally requested this several times but it must come from MANY people and not just one person.

    Below is a website that helps you find your Reps. Just plug in your zip code and it provide you the info on who to contact and ask for a formal investigation into the CDC/CFS program - or any other investigation you think is necessary. Get your Congress people involved. Get them informed. I use Hillary Johnson's www.oslersweb.com site as the background for what has gone on at the CDC/CFS program for 30 years. Johnson's WHY speech is great background for this.

    http://www.congress.org

    About Congress.org. Congress.org is a nonpartisan news and information Web site devoted to encouraging civic participation. Our mission is to provide information about public policy issues of the day and tips on effective advocacy so that citizens can make their voices heard. The heart of Congress.org is an award-winning software program that makes it easy for citizens to write their elected officials. Our software assures that your letter will be delivered directly to the decision-makers whose opinions you hope to influence.
    Congress.org is a project of the CQ-Roll Call Group, the largest news organization on Capitol Hill. Congress.org is powered by CQ-Roll Call affiliates Capitol Advantage and Knowlegis private, nonpartisan companies that specialize in facilitating civic involvement.

    How do I locate my elected officials?

    Simply enter your ZIP code in the box marked "Get Involved" on the Congress.org home page and we'll tell you your local, state and national elected officials. In some cases, we may also need your physical address. You can then e-mail your lawmakers by simply clicking on their names or through one of our many news stories about upcoming votes in Congress.

    Why can't I e-mail everyone in Congress?
    Members of Congress only accept e-mail from their constituents. For Senators, that means people who live in their state; for Representatives, people who live in their district. You may also send a letter to the president, vice president and the first lady through Congress.org. Some other Web sites promise to send your letter to every Member of Congress, but most of that mail is thrown away."
     
  8. I thought I read somewhere that Senator Reid of Nevada(?) was a friend of the Annette Whittemore. Perhaps he would be a good starting point? He has years of clout behind him, and I suspect he'd be a good ally. Just can't recall if he got re-elected. Even if he didn't, he's a brand that could open many doors.
     
  9. grant107

    grant107 Jean

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    I sent an email to the cdc asking why we have heard no reports of replication studies on xmrv.
     
  10. Cort

    Cort Phoenix Rising Founder

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    I think they should investigate the whole of them! It will be interesting to see what happens if XMRV turns out. I would think some sort of investigation would be a natural byproduct of something like that now because the worlds eyes will be opened to how this disorder has been so ignored for so many years by both the CDC and NIH.

    You can argue about the poor approach both the CDC and the NIH have taken but an even more impactful argument for me is how they've just ignored 1,000,000 CFS patients in the US! Given the money they're providing - its like we don't even exist. It really is criminal; just that alone deserves an investigation: you could title it "How to ignore 1,000,000 very sick people in the United States". There are disease that effect about 10,000 people in the US that get more $. They are really knarly diseases but still......its unbelievable.
     
  11. muffin

    muffin Senior Member

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    Email Away -Keep Beating that Drum

    Grant: GOOD! Keep them on their toes and keep asking. We need to make sure that the CDC/DHHS etc. are aware that we are paying attention and ready to leap.

    Apparently Harry Reid (Senator, Nevada) is a good friend of the Whittemore family. I would bet that Mrs. Whittemore has kept the Senator well informed about CFIDS/XMRV and the WPI mission. But it would not hurt to contact him. I also contacted him several years ago. The CAA has also involved Senator Reid in trying to get the CDC to answer questions on funding, etc. See below from the CAA website - http://www.cfids.org/cfidslink/2009/050607.asp

    "asked for a Congressional inquiry into program direction and funding accountability through a letter sent to Senate Majority Leader Harry Reid and other influential members of Senate and House in March 2008:

    “Senator Reid, we deeply appreciate your tireless advocacy in support of the CFS patient community and we know that you are committed to assisting us in fulfilling the promise of better diagnostics and therapeutic approaches to reduce the significant burden of illness posed by CFS. Your immediate assistance in helping us determine the state of the CFS program at CDC and restore its promise would be incredibly important and hopefully will lead to improved transparency, accountability and performance. “

    "Senator Reid forwarded our letter to then-CDC director Dr. Julie Gerberding and she responded with a promise to look into the matter. A meeting held in Senator Reid’s office on June 7, 2008 with Miller, Monroe, Wiley and two DC-based CDC staffers gave us the opportunity to directly state our concerns and to ask some of the questions the Association had submitted in response to a written update circulated by CDC at the May 2008 CFS Advisory Committee meeting. They promised regular updates and a complete accounting of the CDC’s expenditures between 2005-2008."

    A series of conference calls over the 2008 summer and into early fall continued the dialogue and provided additional opportunities to continuously reinforce our message about the need for reforming the program. We closely examined the expenditures CDC reported and were given descriptions of the activities supported, although CDC staff didn’t seem concerned by the lack of outcomes for the millions that had been spent and obligated to the program. At the October 2008 CFS Advisory Committee meeting, I went “public” with these concerns and advisory committee members recorded theirs as well.

    As scheduled, two weeks later CDC convened a long-overdue external peer review of its program. The participants were selected from lists of candidates submitted by the Association, the CFSAC and others earlier that spring; however, only five reviewers were chosen and one was unable to attend. Based solely on the report issued after the review, material presented to them must have focused on past work over a 10-year period since the prior peer review in 1999, rather than more recent past or planned studies. This surprisingly positive endorsement of CDC’s program was used by CDC to inoculate other criticism, and at that point, the focus shifted to developing a five-year plan, as the reviewers recommended.

    The November 2008 election brought opportunities to engage new leaders in the dialogue, but delays in confirming a new Secretary of Health that meant a new CDC director might not be appointed for months after the election. Early in the new administration, the Association sent a letter to Monroe on February 10 citing President Obama’s directive to enhance data sharing and transparency:

    "The data amassed by the CDC CFS Research program is a valuable resource that must be released and shared in accordance with the CDC/ATSDR Policy on Releasing and Sharing Data and the President’s memorandum dated January 21, 2009 that directs all executive agencies to ‘take appropriate action, consistent with law and policy, to disclose information rapidly in forms that the public can readily find and use.’ By releasing the data in accordance with these policies, you are ensuring it will be used to its full potential, that work is not duplicated, and that funds are not spent unnecessarily"

    While waiting for the dust to settle after Senator Daschle withdrew from consideration as Secretary of Health, on March 11, 2009 the Association sent a heavily footnoted seven-page memo to acting CDC director Dr. Besser, describing the history of CDC’s engagement in CFS research and our recommendations for corrective measures.

    "…progress toward understanding CFS as a chronic condition with multiple triggering and perpetuating factors has stalled and the lack of program staff’s experience in dealing with chronic conditions, particularly in establishing and maintaining the type and variety of partnerships and collaborations recognized as being critical to the study of chronic conditions, is undoubtedly one of the essential elements currently missing from the agency’s approach to CFS."

    We also provided this information to Congressional appropriators and shared concerns that CDC was developing its five-year plan without including a process for obtaining stakeholder input. (Dr. Besser responded on April 22, conveying his assurances that CDC is “committed to supporting a rigorous research program on CFS and to address the requests and concerns of your organization and others.”)

    A month after receiving our memo to Dr. Besser, the April 27 meeting was announced. The lack of a planning document to examine and respond to left us feeling that the meeting was likely to erupt into a full-blown “gripe” session, especially with the immediate frustration expressed by advocates for the late notice of the date, lack of accessibility, and absence of an agenda and a report draft. We asked CDC leaders to broaden access and helped circulate notices to encourage participation, hoping that CDC would hear from a broad segment of its constituency. The meeting date was also the deadline for one of the NIH mechanisms to apply for funds available under the Recovery Act, so we knew this would limit participation from the scientific community, but hoped they might respond if the deadline was extended. CDC accepted input until May 1, 2009." END.

    -->>>Maybe if enough people ask Senator Reid to request a full investigation into the CDC's CFS program funding AGAIN, it might help push the request forward. I think what we would all like to see is William Reeves and others sitting in front of Congress in the hot seat being grilled on all the issues that have been around for decades and never seem to be truthfully answered or changed. We would all like an accounting of where the $100/$150 Million has gone and what the CDC has to show for that money. In addition to the funding issue there are other questions that I would love to have answered such as why Reeves and those before him neglected a true epidemic and instead, turned CFIDS into a psychological disorder that mocks and demeans millions of sick. Did someone instruct them to stay in this direction despite all evidence to the contrary? Why didn't they do real scientific research? Were they afraid to do real research since it would have opened up a can of worms much like the two Retroviruses (Possible Defrietas Retrovirus and the WPI XMRV Retrovirus) and this could not be allowed for some reason? Why didn't they keep track of the real numbers instead of playing all sorts of games to keep the real extent of the sick from being known (so that the public didn't realize the severity of this disease and to appease the insurance industry and others). Why was the DeFreitas Retrovirus study damaged by the CDC and then killed off? WHO made this decision? Who/why/how was the insurance industry involved in CDC/CFS program decisions? And the list of really serious questions goes on. People like Hillary Johnson, Mary Schweitzer and Erik Johnson would be great to have due to their backgrounds and ability to probe and question in the really critical areas. Ditto for some of the CFIDS experts/physicians who would understand the complex and interrelated medical underpinnings that have caused extreme damage to our bodies and brains.

    I can't help but believe that the damage done to CFIDS research/validation by the CDC and other Federal health orgs was due to the impact of the insurance companies alone. Or that Reeves and his UK counterparts really believe that CFIDS/ME is a psychological disease. I do believe that our government (civilian and/or military) screwed something up badly and have since tried to cover it up for the last three decades and Reeves and others have played their roles in keeping it all secret. Look at the UK document that has been closed for the next 83 years. Why locked down so long? So that those involved and those that suffered are long dead before it is known what really happened and where CFIDS/ME and maybe the Retroviruses (and/or other pathogens) came from?

    So go ahead and email Senator Reid. Email ALL the Congress people and give a brief overview of CFIDS, CDC negligence, etc. and request a formal investigation. It is time we know what the real truth about CFIDS/ME.
     
  12. muffin

    muffin Senior Member

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    Cort

    I really believe that the numbers for CFIDS sick in the US are far higher than one million or even four million people. I think the real numbers would be shocking IF the damn CDC had done their job over the years. The CDC admits that people are not getting a proper diagnosis - and treatment. How many people are walking around believing that they are depressed (and can't be helped) or have other diagnoses that just are not correct but are really CFIDS?

    I hope I live long enough to find out the real numbers of sick. I also hope to live long enough to find out what the real deal is with CFIDS/ME.

    Really. I am not a government conspiracy type and not an X-Files person, but...let's get real here. With over 6,000 studies out there in the public domain, the public and the medical community still don't believe that a dreadful disease exists? Where did this disease come from and why has it been played down for so long? I would bet my last dollar that the US/UK governments are involved. Let's not forget The Tuskegee syphilis experiment that ran from 1932 to 1972!!! OUR government did this! Our government also played games with LSD on unsuspecting young people to see what the effects would be. Our government has also played other games with its own citizens without them knowing. Sadly, I don't trust our own government anymore.
     
  13. Rrrr

    Rrrr Senior Member

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  14. muffin

    muffin Senior Member

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    Rrrrrr

    That's an idea for sure. We need other ideas that call attention to us, much like the AIDS/HIC people have been doing. Guess I should go have a look at the stunts the AIDS people and advocates did to get attention.

    Bill Boards. Wonder how much they go for in certain high traffic areas including near the CDC (just for fun)? Or, aren't the TV stations required to provide free public service messages? How would we go about getting these?

    I thought the CAA was given money by the CDC to do better educating/enlighing on CFIDS? So where are the adverts on CFIDS in magazines?

    Bumper stickers. Another idea but we would need a good website with tons of info and I would not use the CAA's site or the CDC's site. We would need to control the message.

    A true celeb spokesperson who has the guts to say they have CFIDS. We still don't have on of those people except for Laura Hillenbrand (Seabiscuit book/movie). Laura tried to do her part and did a great job. However I believe she has been quite sick and hasn't left her home but a few times in the last couple of years. She's my hero and I kept the People Magazine photo of her on my kitchen wall to remind me that if a young woman who could not lift her head to write could indeed write a wonderful book, then I could at least get my behind up and get to the market.

    Need more ideas to get us the attention we need.
     

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