When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
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Discussion in 'XMRV Research and Replication Studies' started by filfla4, Aug 25, 2010.

  1. jimbob

    jimbob ME/CFS84-XMRV+

    myrtle beach, s.c.
    Forrest Gump could have done a better job! And it should be 5 billion for crying out loud!!!
  2. sensing progress

    sensing progress Senior Member

    Tucson, AZ
    This actually does sound encouraging, although I'm relatively new to all this and don't have the built-up cynicism. I'm hoping it's a genuine step in the right direction!
  3. Hope123

    Hope123 Senior Member

    I hope this is a sign that CDC director Thomas Friedman is trying to get an appropriate person to direct the CDC's CFS research. I know I and several other people have written him urging him to find someone who has expertise and is willing to work with non-CDC researchers, clinicians, patient groups, etc. It's good that they feature "CFS" so prominently in the advert since they could have just mentioned "chronic viral diseases" or other illnesses more.

    The inclusion of the budget has to do with finding an appropriate person. In some jobs, they mention the budget because they want whoever is applying to be experienced in handling a budget/ program of that level. $5 million is not a large sum but it is about what all of NIH doles out to CFS annually.
  4. Rrrr

    Rrrr Senior Member

    given the short notice and the short time they are taking applications (job listing posted on aug 19, candidate search closes 15 days later!), i think this job listing is perfunctory and the candidate for the position has already been picked. otherwise, this is an absurdly short time to accept resumes.

    this "candidate search" is a joke. the position is spoken for. likely the current acting director unger. i know nothing about her. does anyone here?
  5. Megan

    Megan Senior Member

    I thought this news was encouraging until I readRrrr's post. But you never know, they might have someone else lined up for it.

    I hope they dont appoint Elizabeth Unger as her performance at the recent CFSAC was very weak. This looked to me to be one of two things:
    1) Elizabeth Unger drew the short straw at got the job no one else wanted
    2) Or she is/was a weak personality who was purposely put in that position so that other players could easily influence or manipulate the agenda without any resistance from her.
  6. muffin

    muffin Senior Member

    Bingo! Rrrr - you hit it on the head ftdh@cdc.gov Email Frieden

    The government is required to post to the outside for candidates, usually. But given the short time lines I would guess that they either have someone lined up or they are keeping the very weak Dr. Unger who will roll over and play dead on command.

    Email Frieden and demand that they get an outside person who does NOT have the CDC/CFS hateful bias. This is their time to come clean and really get someone in there to do the job correctly - and not just more of the same or damage control CYAing. Email Friden - TELL HIM what YOU WANT.
  7. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    I agree with Rrrr, in that this is just a formality. I had to do it for 4 - 5 years and hired 40 - 50 associates with 80% of those being tentatively filled prior to ever posting the job. I would be very interested to see who they have tapped for this position. If I were in the position to make that hire, I would seriously be looking at someone from the outside (new blood - that's what we called them!!). The $5 million budget does not concern me as much as can the person handle the politics and how much freedom will they have once they are in place. Could just be a puppet on a string, but I don't think so. I would also be very curious as to whom might be the No. 2 person. The director is a political position obviously, but who will their No. 1 Lead Research Scientist be (I would really like to know who gets this position?)
  8. Rrrr

    Rrrr Senior Member

    i followed muffin's advice and emailed frieden (email address is above in her post). and besides, the CDC reads this forum, i'm sure, so if i post below, they'll likely see it too:

    dear mr frieden

    given the short notice and the short time the CDC is taking applications for the head CFS position (job listing posted on aug 19, candidate search closes 15 days later!), i worry this job listing is perfunctory and the candidate for the position has already been picked. otherwise, this is a very short time to accept resumes. i fear this candidate search is going to be perceived as (or worse, actually IS) meaningless and the position is spoken for. i worry that the current acting director unger, is in line for the job, and many fear she is easily influenced by others who already hold a negative bias against CFS.

    as a person who has been waiting for my government's help for 20 years, i ask you to get an outside person who does not have the CDC's usual anti-CFS bias. this is your time to shine, to come clean and really get someone in there to do the job correctly -- not just more of the same or damage control.

    the person you pick for the head CFS position will either show the 1-4 million americans with CFS that you take your citizens' health seriously, or it will show us that the CDC is not doing its job.

    [my name and city]
  9. Rrrr

    Rrrr Senior Member

    august59, is that 2nd position even open?
  10. CateK


    upstate New York
  11. omerbasket

    omerbasket Senior Member

    I have read your offer for the job of heading the CFS unit at your organization.
    Since I know a lot about HHV-0 (Human Hysteria Virus-0), I think I'm capable for that job.
    I think that my reputation about convincing people that they are suffering from a severe psychiatric condition speaks for itself.
    With me, you can be sure that the CDC would never find the real reason for CFS (AKA Mya... I don't know, hysteric people normaly comes up with difficult names... What's wrong with saying that they are fatigued?), and that if no mother of a sick women would establish a program in order to find the real reason for CFS, you would never be humiliated and persecuted.

    Hope I will get the job. I can't wait - I so much want to start interviewing people on the phone and to tell them that they might be suffering from Hyster... Chronic Fatigue Syndrome.

    Sincerely yours,
  12. SOC

    SOC Senior Member

    Yup, classic technique for a federal lab that knows who they want. By law, they have to advertise, so they advertise for the minimum amount of time legally allowable and hope no one worthwhile bothers to apply. If they were really looking for someone new, they'd advertise for much longer. Sorry, folks.

    Why would anyone within the CDC want this job, though? Seems to me it's asking for trouble. It's not like Dr Unger has jumped enthusiastically into the work. Does Switzer think he can do it? Guess we'll find out soon enough....
  13. Gemini

    Gemini Senior Member

    East Coast USA
  14. Otis

    Otis SeƱor Mumbler

    Collected information on James Jones (now the real head of the CDC's CFS program?)

    You may want to see this thread. Dolphin does a good job in showing that James Jones is no friend of CFS patients.

    My letter is going to state that if Jones (as Reeves as well) retains a pivotal role that it will be a clear sign that the CDC clearly has no intention to change direction.

    Unger would be nothing more than a puppet, working at the behest of Reeves and Jones.
  15. Cort

    Cort Phoenix Rising Founder

    <div align="center">:cool::cool::cool::cool::cool::cool::cool::cool::cool:

    It took them, what? At least six months, but the timing for this is terrible and it suggests that either they've decided about the role XMRV plays in CFS or they just don't care. With scientific consensus on this all important pathogen just a few months away why not wait and be sure to attract the right kind of individual for the job?
  16. valentinelynx

    valentinelynx Senior Member

    Amazing quote from Gary Holmes, from 1987 New York Times article

    After looking at the "NightLine" videos from 1987 posted by Forbin (see "1987 "Nightline" on CFS" under General ME/CFS News), I did some web browsing... and found this quote from Gary Holmes (one of the original CDC investigators sent to Incline Village to investigate the outbreak reported by Cheney & Peterson) in an article in the New York Times in 1987. I think this statement puts the CDC approach to CFS/ME over that past 23 years in perspective:

    "Dr. Gary Holmes, an epidemiologist at the Federal Centers for Disease Control who studied the Lake Tahoe outbreak, said, ''A lot more is being made of this by the lay press than it probably deserves,'' adding, ''The problem is that almost every person in the United States has symptoms that are compatible with symptoms of the syndrome.'' [my italics]

    (from "Fatigue 'Virus' Has Experts More Baffled And Skeptical Than Ever"
    Published: July 28, 1987

    I guess we shouldn't be surprised if the CDC finds a way to include the entire U.S. population in their CFS cohorts! :tongue:
  17. Daffodil

    Daffodil Senior Member

    $5 mill? what a bunch of idiots. this is going to cost more than HIV considering how its spread and they are giving it $5 mill???? what a bunch of absolute idiots. they are an organization of bumbling fools that no one, i am sure, takes seriously anymore.
  18. dipic

    dipic Senior Member

    No one, in this very tiny community. Unfortunately, most people (doctors, researchers, patients, public, etc.) naturally still look to the CDC for what they believe is reliable info.
  19. muffin

    muffin Senior Member

    The CDC job is a joke. Business as usual; Cover Up by the CDC


    Just lost my message. Please see the above link on a campaign to get a 1/2 page add in the Washington Post soon. We have over 900 members and over $3,300 in donations in just about one month. We need more donations to get this AD into the Washington Post soon.

    If we do not get our message out to the senior policy makers, the journalists, the public in ways that they understand, then the CDC will win and we get nothing. The public and Washington types do NOT understand the very real and dire consequences of this new family of viruses and the effect on the entire population. The public, et al do not understand that this is contagious and has been in the nation's blood supply for over 30 years. They do not understand that this is not just about CFS/ME but about cancers, other major diseases, etc. and every single person in the US and worldwide is affected.

    Forget about the CDC job. It's a game that the CDC is playing to do a CYA. They are required to put this job announcement out into the public but have already got their lackey lined up to keep the lid on all that they are hiding and covering up. We know that. They know we know that. We need the public to know what the CDC has done to the American public as well as those in all other countries. Below the Facebook Cause link is the Press Release. Please send it off to your own local TV/Newspapers and spread the word. There is a website going up in the next week that will replace the Facebook Causes page and will bring in thousands and even millions of people to see what is going on and what is being done about CFS/ME/FM and the new viruses that are out there and affecting 7% (or 20 million US people, healthy, blood-donating carriers) of the population. See the link and join, donate, give us input, vote on logos, text, etc. Be part of the solution and make your voice heard loud and clear against the CDC. If we don't do this now, the CDC wins again.



    September 1, 2010

    ME/CFS Worldwide Patient Alliance
    Patient-driven Public Awareness Group

    http://www.causes.com/causes/511536?m=f042604e (Join and Donate to a 1/2 page Advert in the Washington Post on the lack of attention, funding, research for ME/CFS/Gulf War - Neuroendocrine/immune disorders)

    Tina Tidmore

    Protect from Infectious Virus, Act Now

    Clay, ALNo one would wish a debilitating neuroimmune disease on their worst enemy. Chronic fatigue syndrome patients are concerned that a recently-published study suggests a family of retroviruses, murine leukemia virus-related viruses, are in the nations blood supply at a rate of 7%. Reference Proceedings of the National Academy of Sciences, August 24, 2010.

    The ME/CFS Worldwide Patient Alliance applauds the National Institutes of Health and FDA for their responsible study that confirms the strong association between a family of XMRV-related viruses and chronic fatigue syndrome, also known as myalgic encephalomyelitis, at a rate of 87%. This serves as a pivotal time that calls for a change from paltry research in the last twenty-five years of an illness that now disables millions worldwide.

    My H.I.V. patients for the most part are hale and hearty, thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. Dr. Nancy Klimas, Director of Research for the Clinical AIDS/HIV Research at the Miami Veterans Affairs Medical Center, New York Times, October 15, 2009

    As each day passes, more Americans with ME/CFS lose their jobs, their social activities and their health. A large majority of them will not recover based on the current lack of effective treatments.

    We call for government-funded anti-retroviral treatment clinical trials now.

    We call for aggressive scientific studies to protect the nations blood supply.

    In the words of University of Alberta professor, Andrew Mason, If the patients improve, after a certain point you stop debating whether it causes the disease and say, the treatment works and were going to use it. Washington Post, August 24, 2010

    The possible threat to the public health in this case is as real as the disability with the illness. This is the time to be proactive.

    ME/CFS Worldwide Patient Alliance is a group of patients who have launched an ME/CFS public awareness campaign from the patient perspective.

    # # #

    For more information, contact Sharon at luvpuggles@hotmail.com OR Tina at editor@claynews.net. See: http://www.causes.com/causes/511536 for information on all aspects of this major media campaign.
  20. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    tee hee Omer. Well done! HHV-0!!!

    CDC? 'abc' more likely (that's the 'Virology class for Beginners' abc - not the broadcaster.)

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