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Hillary's newest blog post is something everyone needs to read!

Discussion in 'General ME/CFS News' started by Luciebee, Nov 2, 2009.

  1. Luciebee

    Luciebee Guest

    If you haven't already seen it, Hillary Johnson's latest post is more than worthwhile. It has to do with some 'anonymous' posts that were on the CDCchat.com site that are, IMHO, quite likely to have come from the inner workings of the CDC. You read them and be the judge. She also has a link to ALL the messages that were posted in that particular thread, which someone has done a marvelous job of transcribing.

    I did manage to get some page captures out of there, but the thread is now locked on that forum.

    Here's the link to Hillary's forum:

    http://www.oslersweb.com/blog.htm?post=643435
  2. caledonia

    caledonia

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    This is incredibly interesting! The good stuff is here:
    http://www.meactionuk.org.uk/CDC_Chatter_Blog_-_Updated_021109.htm

    Hillary has a link to it in her article.

    It sounds like our advocacy messages are getting through.

    My favorite quote "They have moved the CFS work to the Virology department and away from Bill Reeves. Reeves is cooked, stick a fork in him. It's over."
  3. zoe.a.m.

    zoe.a.m. Senior Member

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    I agree that the messages do not sound like the average CFS/ME patient's. However, I wonder if such a board could exist at the CDC.

    Either way, this only pushes me further in the direction that I've been thinking since the CFSAC meeting which is: How do we make this legal? I am not, and I doubt many people are, litigous or excited by the prospect of being involved with a class action suit or congressional investigation. Who has the energy?! At the same time, it seems increasingly clear that something has truly been amiss in a way that will result in premature death and has resulted in hardship on a massive scale. Even if the WPI and others can figure this out themselves, it doesn't abdicate the CDC of their lack of response or research, botched research, or downright criminal action. I know that we care about getting well and preventing others from having the same suffering, but at what point do we have the obligation to take this elsewhere?

    I hope this doesn't strike anyone as an attempt to stir the pot in a way that won't be helpful to CFS/ME patients or that would undermine CFSAC's work and other groups. I don't wish for that to happen. I am genuinely curious about this. I doubt that things go to courts so often because people want to embarrass or admonish someone or a group, but because there is so often no other way to take a serious injustice public.

    What type of proof is needed to instigate a real investigation?
  4. Aftermath

    Aftermath Guest

    Hearings/Lawsuit

    Congressional hearings can be held on any matter--all of it takes is enough to get some elected officials interested.

    A successful class action lawsuits against the CDC is very unlikely. The federal government is next to impossible to sue, because under the long-established legal principle of sovereign immunity, the government itself has to consent to being sued. This is next to impossible.

    A lawsuit would have a better chance if we all went there on a rainy day and slipped in the lobby.
  5. zoe.a.m.

    zoe.a.m. Senior Member

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    ha!

    Hilarious, but true! It's something to keep on the back burner if nothing else pans out I guess!

    Well, since I don't think taking the government to court is the best thing for anyone, it's okay by me. I know of sovereign immunity but I guess I've seen too many episodes of Boston Legal!

    I can't even imagine what elected officials would be interested in such a lukewarm topic, but thank you for answering my questions and adding a little humor into the equation!
  6. cfs since 1998

    cfs since 1998 *****

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    The comments are still there, just disassociated with the root article so you can't access them without a direct link.

    http://www.cdcchatter.net/index.php?name=Comments&sid=769&pid=0&mode=nested&order=0&thold=1

    These are most certainly comments from CDC employees. Here are a few samples...

  7. Koan

    Koan Be the change.

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    While we cannot verify the employment or connections of the individual posters given they are anonymous, we can veryify the blog is as purported since it was sited at Duke University in a piece about the legality of this kind of blogging.

    See Footnotes, item #7

    http://www.law.duke.edu/journals/dltr/articles/2006DLTR0017.html
  8. Koan

    Koan Be the change.

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    I hit stumble thumbs up for Hilary's blog, as always :D, and got to write a "review".

    I did not put CFS or ME, etc., into the tags. Everyone interested in that angle will find the blog. I want the fishies who don't know why they should be interested in our plight. I put: cancer, retrovirus, XMRV, cdc, bloodsupply, scandal

    Review
    Hilary Johnson's continued coverage of the CDC mishandling of Myalgic Encephalomyelitis which may have loosed a cancer related retrovirus (XMRV) into the blood supply and infected millions of people.

    Scary and fascinating.


    This is the hook I'm gonna keep tugging on. This isn't just about us any more -- it's about everyone.
  9. zoe.a.m.

    zoe.a.m. Senior Member

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    Exactly!

    I have wondered about people suing individual doctors for this purpose, as the doctors would likely try to pass the blame to wherever their "medical education" comes in (public health offices, training, for the young ones--med school?). I, personally, don't want to sue doctors (though a few I have dealt with are dangerously incompetent). Doctors blaming lack of education and information would be far more easily heard than have been patient's concerns and even CFSAC's recommendations. I don't think the Secretary of Health could refuse to listen to this.

    I thought of a lawsuit because of the well-known differences between civil and public(?) suits. Just as car companies make a decision about whether to recall a model based on if the money they lose will be less than will result from death/injury civil lawsuits, there isn't a lot of morality in these type of decisions. It comes down to money.

    Is it possible that the AMA or another major association of physicians could be held liable for patient abuse and neglect? Certainly if the CDC has known even of associations of viral/bacterial complications in CFS patients and if they have had biomarkers reported to them and did not follow up or give the support needed to practitioners, some criminal neglect might be present.

    I don't mean to take away from any other type of suffering or marginalization (because it is widespread), but underserving or refusing to serve certain populations cannot be acceptable, and CFS patients are one of these populations. We have been denied medical help, treatment, disability, home care or assistance, etc.

    Would it serve if CFS patients state-to-state lodged complaints against doctors/practitioners who refused to treat them, even symptomatically or who maintained that it was a mental illness? I believe you're correct Levi that, if a doctor gives no diagnosis, they are on relatively solid ground. Though, if someone goes into the ER with obvious infection and is not treated because they list CFS as an existing medical condition--that seems like something tangible. I'm guessing that if it's happened to me it's happened to others. Who could even say how long it would take to even get all of one's own records from numerous doctors to see what has been diagnosed?

    Do we need XMRV to prove the lack of sufficient care and obvious abuse (in some cases) that has been going on for decades for something that was already known to be a serious illness amongst at least a number of practitioners? I'm not looking for revenge, but it's clear that change needs to happen soon. I am hopeful because of the excitement over XMRV, but it seems there are windows to having a leg to stand on in the case of CFS, and I'm wondering how I can best use this one.
  10. martinwhite

    martinwhite Guest

    CDC staff are NOT sympathetic towards CFS, worried about their jobs.

    #2 11-02-2009, 08:56 PM
    caledonia:
    "It sounds like our advocacy messages are getting through."

    I would NOT make this asssumption. These people mades some very nasty and demeaning comments on CFIDS and being forced to deal with it because of Congress, not because they believe. There were several very cheap, nasty shots at the CFIDS sick and the waste of money on CFS at the CDC. What you saw were some CDC people who feared for the reputation of the CDC and worried about their jobs when yet more bad news comes out on the CDC. They did NOT appear to be sympathetic or supportive of CFIDS. Do NOT make that mistake and be lullied by it. I believe that Hillary Johnson also meant that in her blog as well.

    If you read the site carefully, the site is NOT run by the CDC but by a former CDC staff member for CDC staff to discuss things without reprisals and to vent. The background on the website and its originator are ON the website for all to read. So, although this website is not an official, sponsored CDC website, it is meant for CDC staff (and outsiders if they knew about it).

    I would NOT give the CDC staff credit for any kindness towards CFS. That would be a big mistake.
    Also, go to the SEARCH box at the bottom left side of the front page and put in CFS and you will see all the old comments that were removed. Nothing earth shattering in any of them. And the nasty cheap shots at us are hurtful and come from stupid-sounding people.
    Sorry, but the bottom-line is that the CDC is still not our friend but our very worst enemy...
  11. starryeyes

    starryeyes Senior Member

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    When I went there and Searched for CFS I didn't see any disparaging remarks about CFS. Can you post some of them here in full, because if you take out snippets, then some of the remarks can look disparaging. So far, all the comments I've read have been supportive of us CFS patients.

    tee
  12. cfs since 1998

    cfs since 1998 *****

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    There's no reason to believe that everyone who works for the CDC is against CFS or loyal to Reeves just because they work there. Certainly everyone has their own opinion. Lumping everyone into one group by saying "these people made nasty comments" is not going to win us any allies at the CDC. Certainly there are CDC employees just as enraged over this scandal as we are:

    "The CDC MUST be investigated top to bottom and not just for CFIDS."

    "The data is out there and there is NO excuse for Reeves and his people anymore. NONE"

    "Fire the people who think this way..."

    "I can only conclude that there is something very wrong going on with Bill Reeves and his staff."

    "This is a scandal of epic proportions."
  13. Samuel

    Samuel Bedbound with NO DOCTOR

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    See my post below.

    Perhaps we can find a place in the CDC where nobody is against us and move the whole program (but not any people) to that place?
  14. starryeyes

    starryeyes Senior Member

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    Samuel, are you talking about this site?: http://www.cdcchatter.net/index.php

    I can't find what you're talking about. What did you put in the Search Box and which page is this post on?

    Also, have you seen how many posts are validating us there? I still have yet to find a negative post.
  15. Samuel

    Samuel Bedbound with NO DOCTOR

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    For what it's worth, it's this one. But again, I found the date to be more significant.

    http://www.cdcchatter.net/index.php...sid=769&pid=13389&mode=thread&order=0&thold=1

    "Science article coming out linking CFS to endogenous
    retrovirus. If we can't cure AIDS, will there be any better
    luck with this one? Don't think so. But the CFS advocates
    will still be whining to beat the band for miracles on the
    cheap."

    Note that they got the endogenous part wrong and that the
    date was October 2 (I thought it was October 1). Also note
    that the grandparent article appears to be missing. Click
    on parent to get to the parent.
  16. starryeyes

    starryeyes Senior Member

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    Thanks for posting that. Well yeah, we will be whining and complaining and rightly so. I don't know. I don't see that as indication that all these workers at CDC think of CFS in disparaging terms. There's always some negativity everywhere anyway. What I was pleased with is how many of them appear to really get what CFS is and also support us, the patients.

    I'm not sure what you're saying about the dates. Is it that they knew about XMRV before the article in Science came out?
  17. Roy S

    Roy S former DC ME/CFS lobbyist

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  18. Hysterical Woman

    Hysterical Woman Senior Member

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    Please write/email your Congresspeople!

  19. starryeyes

    starryeyes Senior Member

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    Yeah we need to be addressing our Congress leaders and Senators. Now is the time!

    Now what exactly should we tell them? That the WPI is on Capitol Hill right now?


    About the CDC workers: they continually state that they are not allowed to share anything with other agencies or other medical institutions. They seem very frustrated about this. They also complain that they are not allowed to have a dissenting opinion about how things are done at the CDC ever. Many of them state that they need their jobs insinuating that if they didn't they would be walking out. Some even state they weren't in medicine for the money, they truly wanted to help others and they are dismayed by how atrociously we've been treated.

    Notice though how Reeves has no qualms about asking the WPI for the patient data and serums because he doesn't know whether they tested men or women or little boys or little girls and he's all confused even though the CDC has supposedly been studying CFS for the last 25 years and said they have patient serums of their own.
  20. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi teejkay,

    Good question - I would appreciate other people's input. What I am saying is that I would like Sec. Sebelius to be aware and act on the recommendations made by the CFSAC.

    I also always mention that in light of the research done by WPI, and the possible link between CFS and XMRV, I am concerned about the blood supply. I believe someone else on another thread posted that they had a friend who recently gave blood and that the Red Cross worker told them that there was a no problem in giving blood if you have CFS.

    Take care,

    Maxine

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