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Why is it taking so much time...

Discussion in 'General ME/CFS News' started by Kati, Nov 30, 2009.

  1. Kati

    Kati Patient in training

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    .. reviewing Reeve's conduct and firing him in the light of the recent XMRV comments in the New York times and 20 years of mismanagement of taxpayers money for CFS???

    Wasn't CFSAC meeting clear that something is totally wrong with the CDC?

    Can't they hear us all from our bed, saying the same thing over and over again, this is not all in our head?

    Where is he, and why is the CDC so silent about it all? CFSAC was over a month ago...
  2. Hi. Very good question. As ever it's political correctness (control) and 'the old boy network' policy of never snitching on your colleuges even if they are blatently out of line. Any teacher knows this. Doctors are way more blind to reality if it means sticking their necks out - causes 'trouble at mill'..... :rolleyes:
    It's so easy to just carry on, get your wage packet and that's what's happening. We have bloggers (all patients) absolutely slamming the situation, and we have doctors being doctors.

    If you have to remove your brain to be a doctor, to cope with a symphony of human suffering - then it seems that in most cases this makes them immune to others emotion - as their emotion is self censored. Doctors are renoun of being arrogant, but maybe that's just emotional sunglasses appearing that way?

    The other explanation of the silence in CFS research since this news, and since Reeves' little outbust - is they're scared.
    Maybe strange goings on happen we don't know about - threats? If the powers that be think that Professor Kenneth Freidman needs to be threatened with being fired for educating people on CFS, then I wonder how they'd react to an outspoken doctor asking the very questions you/I ask? !!

    They'd probably get a little phone call, or a 'note' in their pigeon hole at work telling them to back away from the scent trail....or become the fox.

    CFS is (to our cost) a political disease - it was created for political reasons and so patients live in a medical apartheid.
    One rule for medical care for the masses, and one rule for us, no care.

    The last thing that will happen is people who direct policy will get fired. Reeves will probably get promoted and become the next Simon Wessely (he was awarded a medal for his services towards CFS/ME even). Obama may invite him for dinner (Reeves).

    That's not the logical and moral expection (religious or not)- but logic and morals don't work in politics - selfishness through domination of your opponents does.
    Show weakness, and that's it - the game is up.

    As patients we are oponents to any government and their health care system -and their 'expert' researcher like Reeves.
    We need and wish to oust them and replace them with quality open minded individuals - un biased and keen to help us.

    If they allow that, it costs their economies billions in insurance and health care.
    So they're just turning a blind eye to it all. Hence the silence over XMRV. Even in my country the ME Association are telling people not to hassle
    their GP's (doctors) by asking for a test. How convenient.

    Think of all the people who should be advised now. Blood donors, people sexually active, people planning a family/pregnant women.
    No advice - nothing. Just silence. They say the WPI study needs to be replicated before they act - so they put people in charge who openly
    state the results won't be replicated. LOL!!!!

    That's too late in 3 years time, when the results are replicated due to 'pressure' and maybe some kids are born XMRV+ for no reason other than
    policy of supression of the truth. Not 1 kid, buy maybe another 5, 10, 20,000 kids who will end up like us.

    That's what makes me mad.

    Lets look at another health scandal that happened in different circumstances.

    Over here in the UK, the government told farmers to put dead sheep in animal feed for cows. Cows ate dead sheep, developed brain disease, humans ate next dead animals and some develop a terrible disease and died from this. What did the government do, they famously got a member of parliment to go on TV and hold his daughter in his arms and chomp into a beef burger offering some to his daughter, who didn't eat any. That clip became well known in the UK as a political stunt.

    Link
    with lots of good clips

    No one was ever charged or jailed over CJD, yet it cost the government a vast amount of money to slaughter endless cattle, have their beef market destroyed due to lack of public confidence, and to try and cover it up - on top of (most importantly) killing innocent people.

    They got away with it by remaining silent. It's never on TV, radio and yet many people have a ticking time bomb of CJD.
    Now that's for a disease that kills all people outright.

    CFS it appears, kills very slowly through secondary disease (heart disease, cancer, immune supression).
    I certainly would like to see the grannys and grandads with CFS who had CFS severely since childhood/teens.
    Do they exist? I doubt it. The government is yet to claim one housebound ME patient with proven immune disease/cardiac dysfunction.
    (Important point).

    The tragedy of it all, is if XMRV is what we think it is, it'll all blow over in the wind oneday rather than launching rockets into the air - and the 'good will' from the CDC towards patients will be a tiny disclaimer that directs clinicians to immunological methods of treatments if the CFS patient is XMRV+
    Maybe an embarassed 'blush' in bold text on their CFS website if you have XMRV - ''oi this way son''...... (shhh) don't tell anyone kind of thing... If you click on the 'clinicians' advice for CFS on the CDC website at the moment, youl'll find Reeves disease now= CFS.

    ''Recently the definitional criteria have reached using information derived from 3 questionnaires: MOS SF-36, Multidimensional Fatigue Inventory, and the CDC Symptom Inventory (Reeves et al, 2005). This approach can be useful in identifying patient and in monitoring their illness course or response to treatment.'''

    Source: http://www.cdc.gov/cfs/cfsdiagnosisHCP.htm#diagnose


    One would think in the light of XMRV, and experts such as Nancy Klimas saying she'd rather have HIV than CFS, and also saying it's a very painful inflammatory diease. Link then the CDC/NIH would oust Reeves like you sensibly suggested. But no...


    I doubt much else will happen, how could it? Any sweeping change would indicate blame on the part of the CDC/NIH at that cannot happen due to politics. Even if XMRV does cause cancer in large number by age 50+, then they will never admit it, they'll just say cause of death cancer, never cause of death cancer due to CFS. Or 50yr olds get cancer anyway, whatever.....

    Its like having MS and MS 'light'.
    CFS (XMRV+ & Viruses) and CFS what is now - chronic tiredness with no explanation.
    Hence the WPI coined the term 'XAND' to make sure we escape the psychiatrists.

    Bizarre from the outside and unjust to the extreme from the inside where we are currently held in a holding cell.......

    Good science may allow immunotherapy to unlock us and run out into the sunlight. Shame we don't have the bodies of 20yr olds any more, the dreams abilities or atractiveness either. Hopefully my door will be adjacent to a Beverly Hills plastic surgery clinic.

    We'll be like people returning from an UFO abduction, amazed at how the world has changed these past 2/3 decades.

    If anyone admitted blame and it was their fault, then they'd be hell to pay.
    We'll just have to sue them anyway by building cases individually which is extremely mentally draning and psychologically challening to the say the least.

    Dig those heels in even harder and hold on. Maybe we'll see the thief in the night trying to do a runner - and we can trip them up? The people most likely to that are probably secret scientists who know way more than us - yet are waiting for the opportunity to let the cat out of bag, or should I say .....mouse. ;)
  3. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    The CDC has apparently decided it easier to keep Reeves than it is to fire him and bring someone in and create a new program. They've been presented a lot of evidence that Reeves does not have the blessings of the professional or patient community and that he made an enormous mistake with empirical definition. THe CFIDS Association showed that he's wasted enormous amount of money and the CFIDS Association, the IACFS/ME and the CFSAC have called for his replacement but it doesn't matter.

    The CDC is not bound to listen to anybody and apparently they haven't. We don't really know what's going on in the CDC - are they tiring of Reeves? Is his leash getting shorter and shorter or do they think he's doing a good job despite everything?

    My sense is that the CDC is not interested in chronic fatigue syndrome and is therefore really not interested in replacing the leader of program or revamping the program. Maybe XMRV - once its replicated (hopefully it will be) - will change that. ;If XMRV is replicated one would think that a lot of the research work will shift to the HIV/AIDS center of the agency and Reeves won't be involved.

    Its really hard to put pressure on the health agencies. Congressman and Senators generally feel that they don't have the expertise to intrude so they leave it up to the health agencies to police themselves. Its a problem.
  4. anne

    anne Guest

    I do think it's interesting that he's been very quiet since the Times interview. My hope is someone put a sock in him.

    With the CFSAC recommendations, what happens to them? Is the NIH (or whomever) obligated to respond? Or do they just...sit there?
  5. I wonder what part of his anatomy?!

    This mystery CDC Chatter person famously suggested a fork, instead of a sock though Anne!

    Ohh and they said this too (see attached) which you all know, but still - flashback remix time.

    Attached Files:

  6. Kati

    Kati Patient in training

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    I volunteer to compile all the answers and send that to Wanda Jones, CAA and CDC- Who had enough of this bull****?


    Andrea Whittemore-Goad (and CAA) recommended it was time that all of us start writing letter, or copy and paste a sample, and sign at the bottom.
    Another suggestion would be to approach Michael Moore and see if he'd be interested to explore the worderful web of the CDC,government, policy makers and disability insurance as it relates to CFS.

    I have been sick for 13 months now and while some of you have been ill for 30 years, I am not too keen to be sick for the rest of my life.
  7. Katie

    Katie Guest

    The CDC replication study

    Although I'm an ME vet this is my first experience of closely following replication studies etc. So could someone tell me if the following assumptions are right or wrong:


    1. For the CDC to complete a replication study they have to step by step follow what the WPI did using their samples. This is to highlight any testing or methodological mistakes.


    2. Then they can use their own sample base and see what percentages they have.



    Wouldn't that help negate the issue of the sampling? Is this happening or are they seriously just going to rifle through a bag of odd and ends, call them CFS, test them and call that science?
  8. Marylib

    Marylib Senior Member

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    for Cort and Kati

    Cort -- your take on CDC/Reeves status has the ring of truth to me. Their interest in CFS is nil, unless and until it determined that we have a contagious retrovirus...then, as we are all hoping, the game will change.

    Kati -- I know you are certainly not keen to be sick long term -- none of us are, my dear! No matter how long we have been down.

    I think it is great that you want to take action. But Wanda Jones is not at the top of the heap. Does anybody out there know anyone who knows anyone who knows Sibelius? Anybody want to camp out side her doorstep, send her flowers, cookies? Yes, I know it is grasping at straws, but we need to go to the top. Perhaps being in touch with whoever the Whittemores are trying to lobby. Harvey Whittemore was a lobbyist, you know.
    But Kati, dont' push yourself too much. The best chance of recovery you have is to rest and de-stress. Impossible? Yes ...I know...

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