re skeptic's lawsuit idea

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Jul 1, 2009.

  1. AuntTammie

    AuntTammie New Member

    On another thread, skeptic wrote, "Join me; write to the Center for Constitutional Rights and Theresa McGovern at the MFY and ask them to support my request to consider our concerns for a class action lawsuit. I wrote them yesterday; more letters would help.

    So sorry, I'm new on a PC; you can google both easily..."

    I thought I would start a new thread with this, since the thread where it is posted is probably not going to get much more attention (since it was about writing to the CDC and that deadline has passed).

    I think that this is a good idea. Skeptic, I don't know if you would want to put your name on here, so that people could reference your letter when writing. (If you are not comfortable with that, I totally understand.)

    Also, any details about what you wrote would be great, if you feel like doing so.
  2. skeptik2

    skeptik2 Member

    Thank you so much for your support.

    I am the person who spoke to the CFSAC on May 26th, at 6:40 or so on the videocast.

    I am the person Hillary Johnson wrote an article that was inspired by my speech, in May 2009, on, titled "Numerology".

    I am the person the National CFIDS Foundation (ncf-net dot org) has selected to reprint (the only one, they tell me) my speech to the CFSAC; it will be in the Fall issue of the Forum.

    I asked the Center for Constitutional Rights and Theresa McGovern of the MFY Legal Services to read Hillary Johnson's website and then consider my desire to begin a class action lawsuit on behalf of patients who have been diagnosed with the erroneous label 'cfs' which is really M.E.

    I told them I have been ill with ME for 21 years, that my 21 y.o. grdau,whom I carried around the first 5 weeks of her life while I was 'developing' ME after a serious viral illness, has had what was labeled (by her pediatrician) "chronic Epstein Barr Virus, for which we can do nothing".

    I told them that because the CDC has arbitrarily changed the criteria for diagnosing 'cfs', to exclude all immunological and neurological symptoms, all of us with true ME are being denied our right to research, testing, studies, correct diagnoses, and finally, of course, treatment.

    I told them the CDC website for 'cfs' states there is no biological basis for cfs, and asked them to bring suit in order to get the CDC unfunded for its so-called study, because there is no such illness. I asked them to sue to give us the constitutional right to proper diagnosis and treatments, which we are now being denied because the CDC made a terrible, irresponsible mistake when the Lake Tahoe outbreak happened and now cannot back down from their erroneous stance.

    Theresa McGovern sued the NIH and CDC and won, in 1996, over the rights of women who were having inexplicable infections, and testing positive for HIV, but were not allowed to collect SSDI because the CDC refused to allow the diagnosis of these infections and consequent severe illness and death, to be included in the criteria for determining whether they were HIV positive. (I may not have stated this quite right, but the gist is the same: they, and we with ME, are being denied the right to correct testing and diagnosis,in accordance with the World Health Organization's and Canadian criteria for M.E.)

    I begged them to consider the plight of my 21 y.o. brilliant and talented daughter who missed the last 2.5 yrs of high school, and layed in bed in a dark room for almost all of that time. The complete rest helped her recover enough to pass a GED with flying colors and enroll in a community college. Alas, of course, she would begin each semester with only 2 classes, drop out one of both due to severe relapses, and now has come to live with me, finally, so I can take care of her. Her life will be over at age 21 unless something is done, and fast.

    I don't know if I expressed myself clearly enough either to them, or here. I don't know if I will ever hear from them. If I don't I will keep searching for a law firm that will do it; someday I may be clear enough that they can read the facts and determine the law and what to do about the CDC.

    I do not waste my time writing my Congresspersons anymore; it's like talking to a wall. I do not waste my time working for national organizations, with my time, energy and money, anymore. I did that for 15 years; look where it's gotten us; pandering to the CDC, 'working' with the CDC, writing to the very people who couldn't care less.

    What are all of us going to do when the CDC ignores us and just does what they want and institutes the new definition that includes major depressives, traumatized children, and who knows what else as having 'cfs'? Of course, those very people can still get M.E....ANYONE is a major epidemic rivaling swine flu in the U.S., and no matter what other diagnoses one may have, one can still get M.E. on top of it.

    The point is this: NO TESTS=NO HELP=NO HOPE. I want to begin to change that.

    If you write, say k.s. sent you...that's M.E.

  3. jasminetee

    jasminetee Member

    Thanks for starting this thread Aunt Tammy. I have chronic EBV too.

    I've been hoping someone would do this but I myself had no idea how to.

    So, who exactly do we write? Is there an addy? and what do we say?

    Sorry, I need it spelled out for me. Major brainfog.

    I found this:

    Gee, that sounds familiar! So the CDC has been caught doing this before.



    [This Message was Edited on 07/01/2009]
  4. AuntTammie

    AuntTammie New Member

    I really hope that a lot of people see this and write.....this is a better chance of having something positive happen than if we just keep leaving it to the CDC.....I still believe that it is a good thing to let the CDC know how we feel, but I don't have a ton of faith that they will change without more of a reason to do so.....actually I wonder if all the letters to the CDC could somehow be tied into the possibility of a lawsuit (as evidence that this is effecting a lot of people, and that the CDC is totally ignoring us, or something along those lines maybe?)

    anyway, thank you skeptik (and I see that I spelled your name wrong b4 - sorry) for initiating this....and, of course I am behind you - it's a great idea!

    also teejkay, the info about who to write to is in the start of this thread - I have not yet googled it (as skeptik suggested) in order to post more info (was too wiped out today, but didn't want this to slide into obscurity, so I thought putting what I did here was a start)
  5. jasminetee

    jasminetee Member

    I did Google different things from your post and I'm not finding anything where I can write.

    [This Message was Edited on 07/02/2009]
  6. skeptik2

    skeptik2 Member

    OK, here is who I wrote to:

    Center for Constitutional Rights:

    Theresa McGovern, c/o MFY Legal Services:

    My appeal was dated 6/29/09.

    All support is greatly appreciated.

  7. simpsons

    simpsons Member

    have you gotten jean harrisions email from co cure website. Jean fought for our civil rights to have the cfsac video cast. i know there was a lot of work involved in looking at the laws involved. and MAME (mothers against ME) jean would be a very strong partner for you and may already have some good contacts for you and experience that could help. also would be great to have mothers against me on your side. the whole education thing is very important they were discussing this and discrimination at the cfsac.

    i have to strongly advise that you look towards human rights lawyers dealing with discrimination health rights. we look back at the nice judicial review in the uk and see that it would have been maybe a different outcome if the human rights were involved as the judge would have had to take them into account in his judgement.

    i take my hat off to you, wish i had the NRG to do more.
    its in my mind that we have lived in the shadow of the real world, like lepers, now is the time to dare to dream that we can take on the government and demand our rights

    peace love and goodwill<
    you are one hell of an advocate we are lucky to have youBR>

    simps x

    here is the link to other discussion by skept on a post with in full detail how the aids advocates case if nsuccessfully challenged the cdc definition. there are other discussions re this current conversation that are very interesting.

    its important to look at how other were successful and learn from them

    [This Message was Edited on 07/02/2009]
  8. simpsons

    simpsons Member

    skeptic, thought this may also be another ally or inspiration for you. its to do with swine flu virus. perhaps an email may give you some contacts and or idea's, one thing may spark another.

    Journalist Files Charges against WHO and UN for Bioterrorism and Intent to Commit Mass Murder :

    As the anticipated July release date for Baxter's A/H1N1 flu pandemic
    vaccine approaches, an Austrian investigative journalist is warning the
    world that the greatest crime in the history of humanity is underway.

    Jane Burgermeister has recently filed criminal charges with the FBI
    against the World Health Organization (WHO), the United Nations (UN),
    and several of the highest ranking government and corporate officials
    concerning bioterrorism and attempts to commit mass murder.

    She has also prepared an injunction against forced vaccination
    <> which is being filed in
    America <> .

    These actions follow her charges filed in April against Baxter AG and
    Avir Green Hills Biotechnology of Austria for producing contaminated
    bird flu vaccine <> ,
    alleging this was a deliberate act to cause and profit from a pandemic
    <> .

    For full article, go to:
  9. simpsons

    simpsons Member

    human rights lawyers usa discrimination health cdc (skept just type this into google search then do the same search adding me/cfs

    then try this lady who looks like she is onto it already

    this may have interesting information

    here is not speaking about health but human rights in education

    this one is not related to me cfs but is interesting re insurance payouts and government health

    hope these give you some idea's in this our brainstorming session. if they cannot help they may be able to point you in the right direction. be careful of lawyers who will happily take your money even if they don.t think they can be successful. so eyes wide open.

    love love love you for taking this on

    simps x
    [This Message was Edited on 07/02/2009]
  10. skeptik2

    skeptik2 Member

    think there's a song by that name!

    New on PC; have sent to my email, will figure out how to get to these links soon: darn PH for not having usable links!!

    I did email Jean Harrison but have had no response. Will give it time and email everyone else I can. Of course, I am hoping everyone here will email the Centers for Constitutional Rights and Theresa McGovern thru MFY Legal Svcs, as listed above, first. Feel I must give them time to respond/accept/deny before I go wandering off and probably get lost trying to contact too many people/orgs at one time. Especially with my computer skills (or, lack therof).

    AuntTammie, thank you for the wonderful suggestion that the emails already sent to the CDC may be useful...see, more brains make light the work, especially since so much goes in one brain cell and out the other, for me. Wanna bet they 'trash' them before they can be used? Huh.

    Someone tell me how I can give out my email; only thru chat?

    I would invite certain people to email me; otherwise, I'd be overwhelmed, I'm sure, the way this is evolving.

    Love to you who are here and helping...I need you, and care about you and your children, spouses, SO, grandchildren, as much as my own!

  11. jasminetee

    jasminetee Member

    Thanks for the links. I sent each of them a brief email asking for their help for us.

    Much love to you for all you're doing to help fight the good fight!

  12. SpecialK82

    SpecialK82 New Member

    Way to go skeptik - you've got guts!

    It's a good idea - please continue to let us know what we can do!

    I will be praying that this will work - I applaud your energy :)


  13. AuntTammie

    AuntTammie New Member

    it wouldn't surprise me if the CDC does trash all the letters, but I would think that there is still some sort of record somewhere....and if not, then maybe some of the people who have sent letters still have copies....not sure....obviously I didn't totally think the whole thing thru, but I do believe that there still might be some way of getting/using all those letters....or even some of the video testimony of recent meetings, or something......people have written so many really helpful things, it would be great if somehow it were possible to use them for this

    oh, and I so know what you mean about in one brain cell and out the other!
  14. skeptik2

    skeptik2 Member

    She answered my email, simpsons!!! I have goosebumps and started to cry.

    She's very interested and is tying up some loose ends on another case with MAME, but is on the scent right now.

    I am so happy, I can't hardly believe it.

    I know these things grind along slowly, so could you all keep this bumped for me; we will want every ounce of energy and support we can get.

    Darn, i'm gonna cry again..

  15. SpecialK82

    SpecialK82 New Member


    Congratulations on getting Jean Harrison - How exciting!!

    Go skeptik Go - you are AWESOME.

  16. jasminetee

    jasminetee Member

    That is awesome! Congrats!! :)

    Let us know how we can help. This is exciting.

  17. AuntTammie

    AuntTammie New Member

    I am so happy to hear this....have been crashing so bad I hadn't actually managed to get my thoguhts together enough to write her, but was planning to do so within the next few days.....since she has agreed to pursue this, should we still write to her, or should we be doing anything else to help?
  18. frickly

    frickly New Member

    Unfortunatly it often takes an attorney to get someone to take you seriously. Keep us informed.
  19. skeptik2

    skeptik2 Member

    Would you be so kind as to put this on a separate post? I think it confuses the issue, even tho' it may have implications down the road aways.

  20. skeptik2

    skeptik2 Member

    Sorry, I meant the reply about the swine flu investigative reporter, not the whole thread, ok?