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CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

Discussion in 'General ME/CFS News' started by muffin, Jul 24, 2010.

  1. muffin

    muffin Senior Member

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    One of our very observant folks, aruschima , found that the CDC updated their CFS website and noted that people would be shocked. Well, aruschima is quite right. This is the CDC's attempt at Behind-Covering on XMRV. Note they actually talk about children in the Childhood Adversity section below. Guess they realized that we all figured out that they NEVER deal with Children and so here was there desperate shot at dealing with kids. Doesn't work CDC. Children have been abused since the begining of humanity and they didn't come down with CFIDS. How insulting to the parents of sick CFIDS kids. Blame the parents!!!

    Next they gave an update on their faulty, failed XMRV Replication study. Two other unnamed labs were also used - they threw that one in to make sure that they were not alone in this botched study. But we all know the truth on this one!

    The last Asinine addition was on the 13 county, random telephone survey done by the sleazy ABT Associates with help from the quacks at Emory University (Mind-Body Program).

    Study of CFS in GA
    (Otherwise Known as Lets Waste More Money On Stupidity and Give ABT Associates Yet More Money) - Isn't Bill Reeves on the Emory University payroll? Wonder what he got from ABT?)

    "If you have any questions about how the study works. If you think that you have been harmed as a result of this study, contact CDC: Dr. James Jones at (404) 639-3532.

    If you have questions about your rights as a participant in this research study, please contact the office of CDC's Deputy Associate Director for Science, toll-free, at (800) 584-8814. Please leave a brief message, including your name and phone number. Also, please mention that you are calling in reference to CDC protocol #4121. Someone will return your call as soon as possible."

    HEY! Have some fun and give these guys a call and tell them that you have been harmed as a result of this study! I'm sure Jim Jones would just LOVE to hear from real CFIDS sick people!!

    ----------------------------------------------------------------------------------------------
    1) Childhood Adversity http://www.cdc.gov/cfs/news/features/childhood_adversity.html

    Approximately 14% of children in the U.S. are subjected to some form of maltreatment, and in 2007, over 3 million reports of childhood abuse and neglect were investigated. Childhood trauma, defined as abuse, neglect, or loss, is a stressor that affects the physical and mental well-being of humans from infancy throughout the lifespan. In various animal and human studies childhood trauma has been associated with low resting cortisol levels, altered stress response, increased inflammatory markers, and cognitive impairment.

    It is a well-established fact that experiences during early life shape the development of the brain, particularly during sensitive periods. Adverse experiences can program the development of certain brain regions that are involved in the regulation and integration of hormonal, autonomic and immune responses to challenges later in life. Such challenges may encompass infections, physical stresses or emotional challenges.

    Childhood abuse has been connected to a wide range of disorders, such as depression, anxiety disorders, and substance abuse problems, but also more classic medical diseases such as cardiovascular disease. Of note, markedly elevated levels of pain and fatigue have been reported in studies of survivors of childhood abuse.

    Chronic fatigue syndrome (CFS) is a debilitating illness that can sometimes occur in response to a stressor or a challenge. For example, there have been reports of people developing CFS after being in a serious car accident. Other examples of challenges are increased rates of CFS in Gulf war veterans and triggered relapses of CFS in persons affected by Hurricane Andrew.
    Upon stress exposure, our central nervous system will activate hormone and immune responses that help the body to maintain balance during stress. There is evidence that childhood maltreatment may alter the way how the bodys regulatory systems respond to stress. Early adversity may thus increase a persons risk to develop CFS, particularly in response to challenges. Therefore, childhood trauma may be an important risk factor for CFS. Research has shown that when persons with CFS and without CFS were asked about childhood trauma, those with CFS self-reported higher levels of childhood maltreatment. In particular, for women, emotional and sexual abuse during childhood was associated with a greater risk of developing CFS later in life.

    Of note, a risk factor is not "the cause" of a disorder; it increases the relative risk, but is not present in all cases. The cause of CFS is still unknown, but childhood trauma might be factor that contributes to CFS risk in a subset of people. While these findings are important and have the potential to help many people, it is important to realize that not all persons with CFS experienced maltreatment as a child. Childhood maltreatment is just one risk factor for CFS and does not explain how other people with CFS (who did not experience such trauma) developed the illness.

    The results from this research are important because healthcare providers can help people with a history of childhood maltreatment. For some people that have both a past of childhood maltreatment and CFS, talk therapy may be beneficial. While more research is needed on CFS and childhood maltreatment, patients are encouraged to talk to their healthcare provider about their physical and mental health history.
    -------------------------------------------------------------------------------------------------

    2) Updates: Xenotropic Murine Leukemia Virus-related Virus (XMRV) http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html
    Overview of a Peer-Reviewed Scientific Report
    Absence of Evidence of Xenotropic Murine Leukemia Virus-Related Virus Infection in Persons with Chronic Fatigue Syndrome and Healthy Controls in the United States
    by (MR.) William Switzer, Hongwei Jia, Oliver Hohn, et al. Retrovirology 2010, 7:57 (July 1, 2010)

    Summary
    On July 1, 2010, CDC researchers and colleagues from two institutions reported results of a study in which they found no evidence of infection with xenotropic murine leukemia virus-related virus (XMRV) among patients with chronic fatigue syndrome (CFS), a serious disorder that affects 1 to 4 million U.S. adults. The CDC-led team used a combination of different molecular and serologic assays to test archived blood specimens from CFS patients and healthy controls. Results of blinded testing performed at CDC and two other laboratories were negative for XMRV. These findings are in sharp contrast to results from a recent U.S. study by Lombardi et al (Science 2009) that detected XMRV in about two-thirds of CFS patients and nearly 4% of healthy controls, but are consistent with three other recent studies in Europe that found no link between XMRV and CFS. The CDC-led team concluded that these data do not support an association between XMRV and CFS in their study population. Their report, published in the open-access journal Retrovirology, is available at Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States.
    About the Study
    This paper by CDC scientists and colleagues is the first U.S. report on XMRV and CFS since the October 2009 publication in Science that suggested a possible link between this virus and CFS. XMRV is a newly reported human retrovirus that was first identified in 2006 in tissue specimens from men with prostate cancer. CFS is a complex and debilitating condition characterized by severe fatigue lasting at least 6 consecutive months as well as other signs of illness. Its cause is unknown and no reliable diagnostic tests specific for CFS are available.

    To evaluate a possible association of XMRV with CFS, the CDC-led team tested blood specimens from 51 persons with CFS and 56 healthy persons. The specimens were from previous study groups: 1) people who had taken part in population-based studies of CFS in Wichita, Kansas, and in Georgia, and 2) patients in Georgia who had been referred by physicians to a registry of fatiguing illness. Patients from both groups had CFS that met the criteria of the 1994 International CFS Research Case Definition, which was established to help distinguish CFS from other illnesses that cause fatigue.
    Comprehensive molecular and serologic testing was performed independently at three laboratories blinded to the clinical status of the study participants. Detection of XMRV DNA sequences was done by using three PCR tests (two gag and one generic polymerase) at two laboratories. Detection of XMRV antibodies was done by using three different serologic assays (Western blot, ELISA, and immunofluorescence assay [IFA]) at two laboratories.
    Testing of all specimens was negative for XMRV. Laboratory test results include the following:
    Archived plasma specimens from 51 CFS patients and 53 healthy controls from Wichita, Kansas, as well as metropolitan, urban and rural populations in Georgia were tested by a Western blot assay at CDC. All specimens tested negative for antibodies to XMRV.
    Additional blinded screening of the same 51 CFS cases and 53 controls at an independent laboratory using an ELISA identified weak seroreactivity in one CFS case and a healthy control, but both were negative by IFA and Western blot.
    PCR testing at CDC showed negative results for XMRV DNA from 50 CFS persons and 56 controls and 41 U.S. blood donors.
    Blinded testing by a second PCR assay in an independent laboratory was also negative for DNA specimens from the same 50 CFS persons and 56 controls.
    The authors of the Retrovirology paper concluded that their data do not support an association of XMRV with CFS.

    Do the results of the CDC study show conclusively that there is no link between XMRV and CFS?
    The study found no association between XMRV and CFS in this population of CFS patients and controls. However, these results do not necessarily extend to other populations or locations. For example, the authors note that their findings may not be generalizable beyond our study populations because XMRV infection rates may vary in different regions or locales. Additional research will be necessary to learn more about XMRV and any association that might exist with poor health outcomes, including CFS.

    What reasons might explain the differences in results between this CDC study and the October 2009 report in Science?
    It is not clear why the findings of the two reports differ. The authors of the CDC paper raise several possible explanations, including technical differences in the assays used, selection criteria for inclusion of CFS patients, clinical complexities of CFS, and possible variations in XMRV infection rates among populations in different regions. There also may be other, as-yet-unknown factors that could help explain the different results of the two studies.

    One important consideration is that XMRV is a newly identified virus, first reported in 2006, and much remains to be learned about this and related viruses. As additional research is done on XMRV and similar viruses, it is possible that new findings might emerge that differ from those reported in the Retrovirology and Science papers.

    How did the population of CFS patients evaluated in the CDC study differ from CFS patients in the study reported in Science?

    The CDC-led team tested specimens collected from previous population-based studies in Kansas and in Georgia and from physician referrals in Georgia. All CFS patients received a clinical assessment and had a diagnosis that met the criteria of the 1994 International CFS Research Case Definition. The use of specimens from two types of CFS study populations (population-based and physician referred) enabled the CDC study team to assess potentially different types of CFS illness. For example, the participants from population-based studies tend to have a more gradual onset of illness compared with physician-referred patients, who tend to have a more sudden onset of symptoms.
    The study reported in Science tested samples from a repository containing specimens from CFS patients, but information about the repository and the CFS patients was insufficient to allow a meaningful comparison of groups evaluated by the two studies.

    What does the finding of no association between XMRV and CFS mean for CDCs future work in CFS research?

    CDCs CFS program will continue to carry out a comprehensive research agenda designed to examine a wide range of factors that could provide greater insight into the causes of and best treatments for CFS. The direction of future research will be guided by results and insights gained from ongoing scientific investigations.
    Are additional studies on XMRV planned that might help clarify differences reported by various research groups?

    Yes. One important next step is to establish testing methods that can be used consistently across XMRV studies. To pursue this objective, CDC, the Food and Drug Administration, the National Institutes of Health, and several non-federal laboratories are participating in an XMRV assay comparability study, which is being coordinated by a working group of the U.S. Department of Health and Human Services (HHS). When completed, the results of this process might help researchers to more precisely replicate past studies and further study a potential link between XMRV and adverse health outcomes, including CFS.

    What is already known about this subject?
    Chronic fatigue syndrome is a complex disorder characterized by severe fatigue lasting at least 6 months and other health problems; it affects 1-4 million U.S. adults, its cause is unknown, and it is difficult to diagnose. XMRV is a newly identified human retrovirus that a previous study found to be associated with CFS; that study also raised the possibility that XMRV might be spread by blood transfusion.
    What is added by this report?
    CDC scientists and colleagues, using a combination of molecular and serologic tests, found no evidence of XMRV in people with CFS or in healthy people.
    What are the implications for public health practice?

    Additional studies are needed to further evaluate if XMRV is associated with adverse health outcomes, including CFS.
    -------------------------------------------------------------------------------------------

    3) Study of CFS in GA
    (Otherwise Known as Lets Waste More Money On Stupidity and Give ABT Associates Yet More Money)
    Frequently Asked Questions
    Which Georgia counties are in this study?
    Why am I getting calls about a clinical evaluation?
    Someone I know was selected for this study. How can I sign up?
    CDC has begun a study of CFS and similar illnesses in 13 counties in Georgia. To conduct the study, interviewers are telephoning a randomly selected sample of 17,000 households. Interviewers begin by asking the selected households a short set of questions to identify household members who may have CFS and similar illnesses.
    Some of these household membersboth fatigued and not fatiguedwill be asked to complete more detailed, telephone interviews. A smaller number of these respondents will be offered clinical evaluations, including free medical examinations. These participants will be compensated for their time and given the results of laboratory tests.
    By the time the study ends in September 2005, over 7,000 people will have completed the telephone survey, and more than 700 of these respondents will have visited CDC's clinics in Northeast Atlanta or Macon.

    Participation in all aspects of the study, including the telephone screening, is voluntary. CDC and Emory University researchers hope that the vast majority of the households contacted will participate. CDC will use the data to estimate the prevalence of CFS, better pinpoint the exact nature of the symptoms, and eventually develop a cure.
    Although the cause of CFS remains unknown, this research program has greatly increased knowledge about CFS and other fatiguing illnesses and has helped the health-care community develop viable treatments.

    Study of CFS in GA - Frequently Asked Questions
    On this Page
    Which Georgia counties are in this study?
    Who is Abt Associates?
    How did you get my telephone number?
    Does CDC know that I was selected?
    I'm not tired. Why do you want me to participate?
    Where are the clinics located?
    Someone I know was selected for this study. How can I sign up?
    Do I have to participate?
    Why am I getting calls about a clinical evaluation?
    How long will this take?
    Can't you pick someone else to take my place?
    I have more questions. Whom can I call?
    Which Georgia counties are in this study?
    To ensure the study is composed of a diverse population, participants will be selected from DeKalb, Fulton, Bibb, Baldwin, Bleckley, Crawford, Houston, Jones, Macon, Monroe, Peach, Twiggs, and Wilkinson Counties.

    Who is Abt Associates? (The major thief contractor at the CDC/CFS program)Abt Associates is a social science research firm that has been contracted by CDC to conduct the telephone survey and clinical evaluations. Since 1988, Abt Associates has assisted CDC with a series of CFS studies. Abt Associates has telephone interviewers in Las Vegas, Nevada, and Hadley, Massachusetts, and field staff across the US.

    How did you get my telephone number?
    No person or organization provided us with your number, and it will not be released even to CDC. Your number was chosen at random by a computer to represent your geographic area. This method ensures that metropolitan, urban, and rural areas in Georgia will be adequately represented.
    Occasionally, the computer selects unlisted numbers. If your number was unlisted, it is still unlisted. Only Abt Associates, the contractor responsible for the survey, knows which telephone numbers were selected, and they will not provide that information to CDC or to other parties.
    Does CDC know that I was selected?

    Although CDC is sponsoring this study, CDC staff and researchers will not know your name, address, or telephone number(s). CDC's contractor, Abt Associates, has assigned a unique identification number to you. Your answers will be reported to the CDC by that identification number.
    I'm not tired. Why do you want me to participate?

    We are interviewing people who are fatigued, and we are also interviewing individuals who are not fatigued. Information from people who are not fatigued help us to understand the differences in addition to fatigue and may help us learn more about the causes and symptoms of CFS and similar illnesses. Your participation would really help.

    Where are the clinics located?
    Atlanta
    CDC Study
    Century Center Office Park
    1901 Century Blvd. NE
    Suite 11
    Atlanta, GA 30345
    Phone: (404) 728-0225
    Macon
    CDC Study
    North Side Square Office Park
    3312 Northside Drive
    Building A, Suite 115
    Macon, GA 31210
    Phone: (478) 475-0008

    Someone I know was selected for this study. How can I sign up?
    Scientific studies, such as this one, follow strict rules for selecting participants. Unless your telephone number was one that was randomly selected by the computer, you cannot join the study.

    Do I have to participate?
    Your participation is voluntary. However, CDC needs your help to better understand and help people suffering from CFS and related illnesses. Your telephone number was randomly selected to represent your geographic area and cannot be replaced by another number; thus, we really need your help.

    Why am I getting calls about a clinical evaluation?
    Based on answers that you provided during the telephone interview, you are eligible for a clinical evaluation. If you participate in the clinical evaluation, you will receive a no-cost physical examination conducted by a physician and results of laboratory tests that can be shared with your medical professional. After you complete the evaluation, you will receive $250 to reimburse you for your time and effort.

    How long will this take?
    The first stage is a screening interview that lasts about five minutes.
    The next stage is a detailed interview. This interview lasts about thirty minutes.
    The last stage for this study is the clinical evaluation. If you are selected for this component, the evaluation will last about nine hours. Because the clinical evaluation takes all day, participants are reimbursed for their time and effort.

    Can't you pick someone else to take my place?
    Your telephone number was randomly selected to represent your geographic area. It cannot be replaced with another. If we replaced phone numbers, we would get biased (or slanted) results, and we would not be able to say that the people selected for this study are representative of the people in Georgia. If you are selected for this study, you will represent hundreds of other people like yourself.
    It is equally important that we evaluate the people selected for the clinical evaluation. If you were selected for the study, you cannot be replaced by another individual.

    I have more questions. Whom can I call?
    If you have any questions about how the study works. If you think that you have been harmed as a result of this study, contact CDC: Dr. James Jones at (404) 639-3532.
    If you have questions about your rights as a participant in this research study, please contact the office of CDC's Deputy Associate Director for Science, toll-free, at (800) 584-8814. Please leave a brief message, including your name and phone number. Also, please mention that you are calling in reference to CDC protocol #4121. Someone will return your call as soon as possible.

    Centers for Disease Control and Prevention
    1600 Clifton Rd
    Atlanta, GA 30333
    800-CDC-INFO
    (800-232-4636)
    TTY: (888) 232-6348
    24 Hours/Every Day
    cdcinfo@cdc.gov
    Page last reviewed: July 21, 2010
    Page last updated: July 21, 2010
    Content source: Centers for Disease Control and Prevention,
    National Center for Emerging and Zoonotic Infectious Diseases (NCEZID),
    Division of High-Consequence Pathogens and Pathology (DHCPP)

    Contact Us:
    Centers for Disease Control and Prevention
    1600 Clifton Rd
    Atlanta, GA 30333
    800-CDC-INFO
    (800-232-4636)
    TTY: (888) 232-6348
    24 Hours/Every Day
    cdcinfo@cdc.gov
    Page last reviewed: July 21, 2010
    Page last updated: July 21, 2010
  2. V99

    V99 *****

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    They used to say that Myalgic encephalomyelitis was a different diagnosis, this has now been removed.

    When you now look at the Complete Text of 1994 Case Definition http://www.cdc.gov/cfs/general/case_definition/complete.html They say the following "The chronic fatigue syndrome is a clinically defined condition (1-4) " Reference 2 is this, 'Lloyd AR, Wakefield D, Boughton C, Dwyer J. What is myalgic encephalomyelitis? [Letter] Lancet 1988;1:1286-7.'
  3. SOC

    SOC Moderator and Senior Member

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    **sigh** I can't read that much in one sitting and without a pen and paper for taking notes, so I'll have to work through this by the littles.

    I do have one question so far:
    WTF? :confused: I'm assuming they're asking this question of the study participants. What reason do they have for thinking their do-nothing study harmed any of the participants? Are people complaining? About what?

    Okay, that's four questions. But still, WTF?
  4. Frickly

    Frickly Senior Member

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    This is the part that really ticked me off. They covered all the bases. Nothing left to test but psychological causes.

    Theoretical and Experimental Tests

    "A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study. In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time."
  5. V99

    V99 *****

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    This is also under the, 'Complete Text of 1994 Case Definition"
  6. V99

    V99 *****

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    Campaign to have the CDC removed from any future involvement in ME or CFS?
  7. SOC

    SOC Moderator and Senior Member

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    Yeah, that ticks me off, too. Isn't it fairly well established that PWCs have secondary infections? Granted we don't all have the same infection, but if we don't test for at least half a dozen of the most common, how are we going to exclude them as factors causing our symptoms? :rolleyes:
  8. V99

    V99 *****

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    Yes, and treat them
  9. V99

    V99 *****

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    They used to say the recovery estimate was 6%, can anyone find this now?
  10. SOC

    SOC Moderator and Senior Member

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    OMG! :eek:
    After Dr Klimas' research they say this?

    Ooooh, I'm started to see the nasty weasel-wording.... "We didn't say these things aren't there and causing you harm; we just said they can't be used for diagnosis. It's not our fault if your doctor misunderstood us and wouldn't test for secondary infections and immune abnormalities..." :Retro mad:
  11. muffin

    muffin Senior Member

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    Campaign to have the CDC removed from any future involvement in ME or CFS

    This has been my chant for some time now: GET the CDC out of CFIDS research! The CDC wants out of the CFIDS business, so get them out NOW.

    It's apparent to me that Reeves made sure that the CDC/CFS budget kept getting dropped every year so that it would fall under the funding oversight radar. I bet he expected that the funding for CDC/CFS would be gone by the time he retired and then the whole scandal would be gone without any evidence left behind. In the contracting/government world, you fight like mad to get funding every year. You spend all your money to ensure you get at least what you got the year before or they drop the funding. So if that means you have money left over near the end of the fiscal year, you find anything to spend that money on to get rid of it - even if it means buying new chairs or having worthless studies done. Reeves didn't fight for more funding and never a word was heard from the CDC people or the CDC/CFS people about the insanely low funding for CFS. They ALL wanted CFS to just go away and leave them all alone. No funding or research from the CDC on CFIDS means that it is not real, valid, or exists, so why fund and study it??? Also, tagging it as a psychological disorder further kills it off the CDC program agenda. Spend the funding on ABT Assoc. and Emory University Mind-Body to show that this is a mental condition and does NOT belong in the CDC roster of diseases to be researched. So very smart of these guys to think up these ideas on killing off a program that has been covered up for 30 plus years!!! Wish they had applied those smarts on really studying CFIDS and Retroviruses instead of covering up something - what they are covering up will soon come to light - this I do believe.

    If you go back over the funding for CDC/CFS program, it started out significantly higher than it is today and in the past five or so years. Have to go get the numbers but there is a very serious downward trend in funding for CDC/CFS research. No money - the program dies and so does the cover-up that goes along with it all.
    Anyone in the government knows that you fight for every dollar you can get. These criminals did not.
  12. muffin

    muffin Senior Member

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    I don't know how it works in the Federal government on getting rid of programs. But it would be worth it to take a look and see how WE might get the Feds to remove the CDC from CFIDS research. The major problem is obvious though: CFS is a disease/syndrome and recognized by the SSA and other Fed orgs. It really is the job of the CDC to track and deal with CFIDS, even though they are doing everything but this job. How do we prove they are doing severe damage to this program? I don't know. What proof do we have that they have done major damage to a deadly Retrovirus? Possibly when the FDA and NIH studies come out there could be a showdown at the OK Coral. Or not.
    I keep emialing Sebelious and Freiden about CFIDS and giving them all the stuff we here have including that 1996 video and the 1990 Newsweek article. They aren't reading the stuff I send, I know that. So, I guess we have to use the media to get to the Federal heads, and esp. the White House since I think it will take that level of government to finally clean things up at the CDC and with CFIDS and XMRV/Retrovirus research.

    I am so out of ideas on what to do next. I hate this but we do need some HUGE and outrageous thing that brings attention to CFIDS and XMRV. Something like the AIDS folks did. But, of course, not violent or dangerous. But HUGE. ideas from the super smart people on this site? What about those that were involved in AIDS advocacy??????
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    They have dug their feet in.

    They're banking on a percentage of people with CFS not having XMRV and they can say that is true CFS. The XMRV + have something else, not CFS. Looks like to me.

    They do still have info about myalgic encephalomyelitis that it is different from CFS: http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html So maybe they will say XMRV is linked with ME, not CFS? And a whole bunch of people have been misdiagnosed as having CFS when they actually have ME? That's pretty clever. And it kind of fits what patients have been saying for a while, that CFS is different from ME.

    I say we lobby for a separate ME information page, using their own statement that ME is a different illness with neurological factors. And demand a study on ME, not CFS. Demand they test ME patients for XMRV. (Well, not really, I really just want CDC to stay in their corner and keep quiet while other researchers do the work.)

    So their story is childhood trauma is a risk factor because it warps the mental development of these folks as to how they process stress. My oh my, so many years and so little progress has been made. Stuck in the mid-1980s. But that's their story, and they are sticking to it.

    And the lack of testing stance is most offensive, unless of course they put up an ME page that does list objective tests for diagnosis.

    I would love to know what Komaroff says about this. So they totally dismiss all the studies on immune system abnormalities, neurological abnormalities, etc. Oh, that's right, it's because they are studying something different, a differently defined group than the researchers. The gall!

    I notice they do admit assay differences might explain reason they didn't find it in their cohorts. (You think?) I can't accept any negative study until someone uses the exact method as Lombardi group. Do that exactly, test their samples, work with WPI to find out why the difference. Then say it isn't there. Otherwise, stop wasting money. Did you not learn anything from the Defreitas days? If for no other reason than to prevent patient complaints, use the same methods.

    All this has done for me is that at my next doctor's appointment I will ask doctor to diagnose me as having ME.

    This seems like something Mindy and Hillary might want to address. Thanks for letting us know the change.

    Tina
  14. SOC

    SOC Moderator and Senior Member

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    The best thing in this regard will be the Alter et al paper and the others in the works. They will strengthen our position substantially. Once we have inarguable confirmation of physiological illness -- a retrovirus in particular -- we have a powerful place to stand and point an accusatory finger at the CDC. It will be even better if the issue of blood supply contamination, etc, causes concern for the population at large.

    We may have to wait another few months to be in the best place, strategically, to take on the CDC but I think we don't have long to wait. In the meantime, you might want to consider quietly marshalling your forces and not showing your hand to the CDC prematurely. ;) A little careful preparation of the media followed by a powerful wave when the scientifc evidence is so strong even the media won't miss it, would be highly effective, IMO.
  15. muffin

    muffin Senior Member

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    Good advice SickofCFS. What I put out here in the public domain is meant to be read by the CFIDS sick, the public, media, AND the Feds ---- esp. the CDC. I want as many of the pieces of the CDC/CFS scandal out there in the public domain and on the Internet where it can NOT be hidden. Others will read, think and put more pieces together and then when the time is right --- it will all come together and their cover-up revealed.
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yep

    As much as CDC may want to say the XMRV positive people did not have true CFS, the title of the studies will determine perception, which is reality. So far, they have used CFS, not ME or "unknown neurological condition" with these symptoms. Thank you WPI for taking the stand that the title of your study include CFS.

    That meant all the other studies were looking at "CFS" patients.

    If Alter's paper also uses CFS term, as we expect, then that will be reality. Again, CDC could get ahead of this story by just finding a few people they can find XMRV in and make an announcement in press conference of a "new" disease where many have been misdiagnosed with other ailments.

    But if they don't make XMRV positive folks a new illness, it will always be people with CFS have XMRV in future studies.

    Tina
  17. V99

    V99 *****

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    I agree with Sickofcfs, we should let things develop further, then we can get a new body to handle ME/CFIDS, and get a name change.


    Thanks Tina, I just couldn't find it.

    I think I will ask them where the ME page is, and which criteria they use to diagnose it.
  18. muffin

    muffin Senior Member

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    It is like banging our heads against the wall over and over and getting the same results: a headache. But, we have to keep on the CDC and when they zig, we zag. We stay on them like glue. We really don't have any choice. This is a war of attrition. Who can beat down the other side for as long as it takes. So, with many millions sick and more getting sick and now the XMRV studies out and coming out, we keep beating on them. We do have ever increasing numbers of people involved and mad as hell. We do have the Internet and super sonic fast communications that spread everything that comes out on CFIDS, XMRV and what the CDC and other orgs are up to. Times are different now than they were pre-Internet. And this plays to our favor. So keep screaming and emailing and demanding.

    Have to rest now. Being so terribly abused by my parents has made me just so damn tired! I would never let my parents know that the CDC says people with my disease are abused as children. My father would have flown down to the CDC and cleaned house. How insulting. How so very insulting to all those loving parents with sick kids. Like they needed to get this garbage dumped on them while they are trying to get their kids what they need and fighting battles with doctors, schools, family, etc. If Freud were around now, he would look at Reeves and Weasel and conclude that THEY had major issues with their parents. Reeves and Weasel were the abused children and so they have dumped this idiot theory on others. Any bets on this one?????
    See that damaged pervert's work at: http://www.cla.purdue.edu/academic/engl/theory/psychoanalysis/
  19. V99

    V99 *****

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    Sent 2 emails today.

    One pointing out that Fukuda was revised and if the use of the 1994 definition is a mistake.

    The other asking where the ME web page is and what criteria they use for this.
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Posted this on Cort's article, but it fits here too:

    ok, help me out folks. (sorry if this belongs in the other thread. I guess I have to post it twice.)

    Doesn't Soc. Security recognize CFS as a diagnosis that can cause disability to the point of not being able to be "gainfully employed"?

    OK, and doesn't Soc. Security require objective tests to show the person has the diagnosis? And this is true even for CFS?

    So, then why does CDC say there is no objective biological test?

    Am I mistaken?

    Tina

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