Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jun 2, 2008.

  1. simpsons

    simpsons Member

    Has anyone thought of or taken legal action against their dr's for lack of treatment discrimination against dr's or others (insurance) re; ME/cfs FM?

    Has anyone any thoughts on this at all? i thought that maybe a class action where we all take part in a mass legal action against the government or maybe many people take individual action against personnal dr's local health authorities or insurance.

    The thing is money talks and right now its cheaper to not treat us, if they stood to lose a lot of money if they didn't treat us then maybe this would make them change

    We seem to have lots of evidence that this is a real illness so many papers to show that it is real, and many tests that show that there is something wrong so that people couldn't pretend to have this.

    The one click group does have a judicial review impending against the nice guidelines. But appart from that i just don't hear of any cases

    Anyone have any legal contacts that they could ask about this?

    how many of you would be willing to participate?

    any idea's/thoughts welcome.

    [This Message was Edited on 06/02/2008]
  2. marti_zavala

    marti_zavala Member

    I don't have any legal contacts but I have frequently thought of this.

    I would participate.

  3. findmind

    findmind New Member

    I have been pushing this for the two years I've been on this board, now.

    I really believe a class action lawsuit, with specific requests for relief (M.E. the legal name; the original criteria for M.E.; a critical review of all "CFS" research with common symptoms found added to the criteria; any others those brighter than I can think of!) is the only way to get justice for all who have suffered for so long.

    It should also stop in its tracks the CDC effort to get on the Wellesy train towards NICE guidelines, furthering psychobabble, GET AND CBT.

    I would require any law firm read "Osler's Web" first, so they have the appropriate background for this devastating illness.


  4. Elisa

    Elisa Member

    I've said this before too. I'm in too...

    A class action suit against all physicians that have every seen a patient named in the suit and not rec'd any treatment, referral or advice.

    Especially high suit $ against those that ignored fever, pain, and other abnormal tests.

    It is like a lawsuit for breaking their oath - and not treating or discrimating against patients with these illnesses.

    I think millions would sign up.

    God Bless,

  5. gapsych

    gapsych New Member

    I think the doctor's could counter with a lack of knowledge about our DD.

    I really doubt that a lot of it has to do with doctor's not wanting to treat us because of the cost. Maybe benign neglect might be a better term.

    Fortunately, a lot of doctors, especially those just graduating from med. school, know a lot more about FM/CFS/ME, if they were neglecting us, then you might have a case.

    Still not enough doctor's who do not trivilize our DD.

    I think we need to put more money and effort on PR to promote our cause. A lawsuit could backfire with negative publicity if the case is lost.

    I am playing devil's advocate here.

    Would it be counterproductive to do this. Lots of lawsuits are being thrown out of court with all the negativity surrounding litigation, aka frivolous lawsuits.

    I am not saying this would be frivolous. I'm trying to look at the pros and cons.

    It should be interesting what other people have to say.

    [This Message was Edited on 06/02/2008]
  6. PVLady

    PVLady New Member

    I don't think there is any law making it illegal if a doctor chooses not to treat certain patients. Honestly, if a doctor was not interested in my condition, I would not want to see him/her anyway.

    There are plenty of doctors out there treating fibro and CFS, ME patients. Sometimes you have to look or find one from a referral. We have a doctor referral board here where you might find a good doctor.

  7. findmind

    findmind New Member

    Maybe doctors could be found liable if they were brought some of the 3,000 studies about cfs done around the world. They are in medical journals of every type and stripe.

    However, I believe the individual doctors should not be held responsible until/unless they have been trained in M.E. treatment protocol, and I believe there is an original one.

    The real problem, from an 18 year perspective, is that the government agency that is supposed to clarify this illness for the public has only purposely served to muddy the waters and make it even more burdensome for the patients and their families/caregivers. That is the CDC.

    They were caught in the act of stealing the money allocated for studying our illness; it was used for things other than our serious concerns.

    No, not the doctors, whom I believe would do all they could to help us if they had not been brainwashed, belittled and beleaguered by the nay-sayers and government agencies.

    The CDC has harmed many patients, some of whom took their own lives. Their false, or misleading information led others down paths to nothingness; anti-depressants and behavorial therapy and graded exercise. They violated the most cherished and well-known of all medical axioms: First, do no harm.

  8. im with you too.

    how dare they neglect us for so many years.its against our human rights.

    disgracefull,treatment of the sick.

    take my advice,whatever legal action you might take,dont talk about it hear while your case in ongoing.

    we dont want to feed the enermy do we?

    talk about it all here,after your court case.

    love fran
    [This Message was Edited on 06/03/2008]
  9. simpsons

    simpsons Member

    some interestng points have been made i guess that we would need to take some legal advice to know exactly what we can and can;t hold them responsible.

    1 - is a doctor responsible for keeping themselves updated on all sides of research?

    2 - should a dr presented with a case of me/cfs fm who has not the knowledge be required to educate him/herself on this illness that after all is 5 times more prevelant than aids

    3 - would it be the government itself cdc etc that should be taken to court deemed responsible for the actions of dr's who follow their advice?

    4 - Would it be an good idea to get a law passed to protect patients rights to payment for bio-medical treatment and living costs from insurance companies (not cbt & get).

    with regard to the last question my understanding is that annette whittlemore lobbied to get a law passed in nevada so that it is illegal for insurance not to pay out for treatment.

    With regard to the pr point i also think that this is a great idea. one of the worst parts of this illness is the way people treat you. Mostly this is due to lack of knowledge and understanding.

    therefore i really do think that adverts made; by/for/on behalf of sufferers, with facts from the fantastic research that is already in existance. to educate not only dr's but also the general public social workers, disablility care providers would be a fantastic idea.

    that way no longer could any dr or care worker even friends or family could ever say neglect was down to lack of knowledge.

    That way perhaps we could close the door on future claims of lack of knowledge.

    I hear that there are some cases of lawsuits being successful however they are subject to gagging clauses preventing them from divulging any informaiton about the settlements.

    one way or another we need to close this off so that no longer will we read commnets on here and in chat of despondant patients who can get no care or suffer discrimination
  10. hi all,

    i need a new bed,but cant afford one,as i can only work part time due to my fibromyalgia.

    rent and property tax,take all my money from me.

    if i am paid damages money,for someone giving me this dd,then i could buy a new bed,and have a much needed holiday.

    i havent been able to afford a holiday,for six years now.

    im working on making those that gave me this illness,pay for neglecting me for all these years.

    love fran
  11. Spinetti

    Spinetti New Member

    A law suit for malpractice against negligent doctors would face the powerful resources of their malpractice insurers' legal team.

    I am sure there are many grossly negligent doctors who have harmed their ME/CFS patients by ignorance and arrogant disregard of good practice standards.

    However, to defend a doctor against malpractice charges, all an insurer's lawyers would have to do would be show that the doctor followed the CDC's diagnosis and treatment guidelines.

    The present CDC guidelines make this an easy standard to meet. And here lies the problem.

    I would love to see these doctors held to account for their actions and inaction, and their insurers pay huge damages, but this is unlikely to happened, except in few extreme cases.

    If one were cynical, it would appear that the CDC guidelines were designed, in part, to protect doctors against such malpractice charges. The CDC has set the bar for diagnostic testing and adequate treatment very low, and has ignored a huge amount of scientific evidence about the nature of ME.

    Congress has the power to investigate and withhold funding if the CDC is found to be acting against the best interests of patients. To get Congress to look into the CDC's whole "chronic fatigue syndrome" fiasco would be difficult, but I'd love to see that happen.

    An incremental improvement is more likely. All that would be needed is find a few resourceful Congress members to champion the cause of getting the CDC to drop its endorsement of the UK NICE guidelines and adopt more rigorous medical diagnostic and treatment standards.

    Adoption of the Canadian Consensus Document and case definition in the US, while not perfect, would be a huge step forward. Information on the Document and experienced advise on how to lobby Congress can be found here in Mezombie's April 5 thread "Please Ask Congress to Adopt Canadian ME/CFS Criteria."

    [This Message was Edited on 06/03/2008]
  12. gapsych

    gapsych New Member

    I think you make some very good points.

    Flossie, unfortunately the lawyers get a take of the money. But wouldn't it be nice to have the money to do these things.

    Good post.

  13. findmind

    findmind New Member

    I really love your dedication; I see you wrote your congressperson, too!

    however, I must tell you, they have been written to for the past 20 years, and nothing has come of it.

    The answer you received was taken right from the CDC's website; all the misinformation about how only 1/4 are disabled, 1/2 haven't talked to their doctors about it, and so on.

    You see, we who have had M.E. for 15, 20, even 30 years have done all this, and it has actually gotten worse.

    A lawsuit is the only way to go, in my opinion. The CDC expanded the case definition in 1994 and again recently in order to further hide this illness from the public's attention. The more they can water it down and call it by any other name than its real one, the better for the government services.

    Somebody, please find a group of lawyers who will work on this!


  14. tansy

    tansy New Member

    coming up soon. Many requests do not reach this stage so to have two is encouraging.

    I think we should be using both all the political and legal means we can; most advocates, and genuine ME and CFS specialists, believe this too.

    Like Fran I had grounds for additionbal legal action over medical negligence but it's difficult in this country and considerably more so when we have been Dx with ME. One of the points I make when advocating is PWME have little protection in the UK and that this must be changed.

    tc, Tansy
  15. acer2000

    acer2000 New Member

    In order to win a malpractice case, you need to prove negligence or that they didn't follow the "standard of care".

    We all know that CFS is a diagnosis of exclusion, and it is very vauge in its defninition. Thus, if they ruled out other illnesses that cause the symptoms, and then branded you "CFS", then they followed the "standard of care" and you can't win a lawsuit against them. The problem is that with "CFS", the "standard of care" sucks. There basically isn't one. Its "sorry, we have nothing for you. If you can't sleep, take prozac". So the bar isn't very high.

    You could prove negligence if your doctor either treated you with a therapy that had no idication for your illness and it caused harm, or if they missed a diagnosis of something else and diagnosed you with "CFS" instead. The waters here are muddy because many of the alternaitve diagnoses aren't considered accepted medical knowledge. It would be much more clear cut if you had an accepted diagnosis that was missed, such as cancer, or TB or something...

    For example the case of Lyme disease. You could say its negligence to diagnose someone with CFS when they really had lyme and the Dr. missed it. But this would only be true if the patient met the criteria of what the CDC says is lyme disease. ie they had a rash or exposure, they had a positive test, etc... And we all know the tests for Lyme suck and many people who end up with that DX wouldn't qualify for it "in the real world - based on the CDC criteria". Same for other "experimental" diagnoses such as mycoplasma, C. Pn., HHV6, etc... So as long as there aren't clear cut and "accepted" ways to prove you have any of these other things and that is causing your illness, you can't really sue someone for not figuring it out.

    I think someone with Lyme actually might be able to win a case indicating negligence because it is an actual accepted disease entity (despite being hard to diagnose), but it wouldn't be a slam dunk. It would move the cause of Lyme into the "lymelight" though, no pun intended. And it would have to be someone who had mostly classic symptoms and went undiagnosed, not someone who had it, got whats considered the "accepted treatment" and then never got better. Does anyone know if something like this has happened?
  16. bunnyfluff

    bunnyfluff Member

    are tough to prove "real" damages. I know several attorneys, and I have a good friend that is one of the most successful personal injury attorneys in the state of Texas.

    Honestly, there are lawsuits filed for all kinds of ridiculous things these day, but it doesn't mean that they aren't thrown out. You still end up being responsible for legal fees.

    I have even heard of one (probably the dumbest thing I have EVER heard of) over EMOTICONS!

    I am not saying that what you are going thru is frivilous, on the contrary! But you will be drug thru the wringer. My attorney friend said to never be surprised if you are in court and there is someone there you knew from 5th grade! Have you EVER smoked, drank, done drugs?? They will find someone that says you have.

    Every text message you have sent, every email, every post on a board, not to mention all of the folks that don't like you to begin with! It is all fair game.

    So keep that in mind.

    You are saying they didn't "treat" you right, but insurance as well as the CDC has had a lot to do with that. You say "this illness is real", but it is a collection of symptoms for which *they* have not found a definitive cause.

    There is still no test to prove you "have it". You are the one that has to provide proof. Beyond a shadow of a doubt. Can you honestly do that??? Is your declining health actually YOUR fault? They will twist it that way.

    And who's pocket are you trying to get into?? Dr's will all stick together. If there is ONE thing they have told you to do, or try and you did not do it to the letter, they will say you were uncooperative.

    There is way more to it than most people think.

    Go speak with an attorney. It will enlighten you a great deal.


  17. TeaBisqit

    TeaBisqit Member

    We need some kind of law for people discriminating against us. I actually thought of dragging my relatives into court for their treatment of me. But they are in another state, so it would be too hard. But I wanted to. At the very least, I would have gotten some kind of publicity out of it. My lawyer felt terrible that he couldn't do anything after they came here. And I was just like, why not? Why can't you?

    I think doctors should be required to be up to date on the latest research. That is their job. We should not have to keep trying to educate them. Nor should we have to continually prove that we are sick. Let them prove we aren't!
  18. simpsons

    simpsons Member

    this is great everyone has good points to make

    i do think that there needs to be new laws

    i wonder if anyone has emailed or contacted annette whittlemore regarding how they got the law changed in nevada?

    Annette spoke of how they changed things in nevada and got funding for the new research centre there on the invest in me dvd 2007. Annette spoke of how they used a combination of PR (for which they already had a set up for existing business) also a good senator who helped with the political side.

    i believe the law was it is unlawful for insurance companies not to pay out for ME/cfs treatment.

    does anyone have her contact details or would anyone be able to contact regarding this? Perhaps this is something that we could aim to emulate elsewhere???

    Finally we do as there is a post on this site have two legal cases going to the high court in England to challenge the governments nice guidelines on treatment of ME/cfs patients.

    so it is possible to challenge the government legally

    perhaps it would not be for money that we go to court but for fair treatment and to change the future treatment?

    Sure heaps of comphensation would be great and make life much easier but CHANGE for the better treatment and care would be a great achievement.

    I would be interested if anyone has any contacts in human rights law for health.
    [This Message was Edited on 06/06/2008]
  19. victoria

    victoria New Member

    We are called the most litigious country in the world for good reason, but thank God we have that right when-- all too often sadly-- it is the ONLY thing that will make things change...

    So maybe not malpractice, but suing the CDC etc, may be an option. Read what Moms Against Mercury accomplished with a suit when NOTHING ELSE WORKED!

    We Win -- FDA Must Classify Mercury Fillings

    We have won our 10-year battle to get the Food and Drug Administration to comply with the law and set a date to classify mercury amalgam.

    On Monday, we settled our lawsuit, Moms Against Mercury et al. v. Von Eschenbach, Commissioner, et al. The FDA will finish classifying within one year of the close of the public comment period on its amalgam policy, that is, by July 28, 2009.

    There's more good news. During a several hour negotiation session, FDA agreed to change its website on amalgam -- dramatically. GONE, GONE, GONE are all of FDA's claims that no science exists that amalgam is unsafe, or that other countries have acted for environmental reasons only, or that the 2006 Scientific Panel vote affirmed amalgam's safety. Instead -- see -- FDA has moved to a neutral course, while recognizing the serious health concerns posed by amalgam in particular for children and unborn children, for pregnant women, for those with mercury immuno-sensitivity or high mercury body burdens. FDA now states, for example:

    "Dental amalgams contain mercury, which may have neurotoxic effects on the nervous systems of developing children and fetus." "Pregnant women and persons who may have a health condition that makes them more sensitive to mercury exposure, including individuals with existing high levels of mercury bioburden, should not avoid seeking dental care, but should discuss options with their health practitioner."

    Perfect? -No.

    A 180-degree reversal from FDA's 30-year policy of protecting mercury fillings? -ABSOLUTELY.

    To change FDA policy, we tried petitions, Congressional hearings, state fact sheet laws, Scientific Advisory Committee hearings, and letters galore -- to no avail. So in the great American tradition, we sued. The case came to a head this spring. On April 22, working with Johann Wehrle and Gwen Smith, I filed a motion for an injunction before Judge Ellen Huvelle. Three sets of briefs later, the government and I presented our oral arguments on May 16. In a crucial ruling, Judge Huvelle ruled that our 11 plaintiffs -- the diverse group listed below -- have standing. She said FDA should classify, and invited the two sides to mediate. On May 30, before Magistrate Judge John Facciola, Bob Reeves (who flew in from Lexington KY) and I hammered out an agreement with FDA officials and lawyers.

    The impact of the re-writing of its position on amalgam can hardly be understated. FDA's website will no longer be cited by the American Dental Association in public hearings. FDA shows awareness of the key issues involved. As it prepares to classify amalgam, FDA has moved to a position of neutrality. Indeed, having repeatedly raised the question of amalgam's risk to children, young women, and the immuno-sensitive persons in its website, I find it inconceivable that FDA will not in some way protect them in its upcoming rule.
    Charlie Brown
    3 June 2008

    PS 1: Our talented (and pro bono publico) legal team includes Consumers for Dental Choice president Sandy Duffy, Bob Reeves, Johann Wehrle, Sandra Keech, Mike McClory, and Gwen Smith; Larry Pilot served as legal advisor on the FDCA.

    PS 2: Great appreciation to our gutsy plaintiffs, a team of four nonprofit groups, two public officials, three dental professionals, and two consumer victims: Moms Against Mercury (Amy Carson and Angela Medlin), Connecticut Coalition for Environmental Justice (Dr. Mark Mitchell), Oregonians for Life (Mary Starrett), mercury expert Michael Bender (in his capacity as Commissioner of a Vermont advisory board on mercury), Arizona Senator Karen Johnson, Dr. Andy Landerman, Dr. Corrie Crowe, dental assistant Karen Palmer, consumer advocates Linda Brocato and Anita Vazquez Tibau, and (of course) Consumers for Dental Choice.

    Charles G. Brown, National Counsel
    Consumers for Dental Choice
    316 F St., N.E., Suite 210, Washington, DC 20002
    Ph. 202.544-6333; fax 202.544-6331,


    This IS a very real possibility!

    [This Message was Edited on 06/06/2008]
  20. mezombie

    mezombie Member

    I don't know if this lawsuit was successful or not, but this news article certainly makes for interesting (and hopeful) reading:

    U.S. Is Sued Over AIDS Benefits

    Published: October 2, 1990

    Hundreds of women, children, drug addicts and homeless people disabled by the AIDS virus are being improperly denied Federal benefits because the Government is using a flawed and outdated definition of the disease, a lawsuit filed yesterday in Federal court in Manhattan charged.

    According to the suit, the people are being denied benefits even though they have been repeatedly hospitalized for disabling conditions, including gynecological disorders, tuberculosis, heart infections, bacterial pneumonia and kidney failure.

    These symptoms are not included in the definition used by the Social Security Administration.

    'I've been having strong pains since the last time I have been in the hospital,' said one plaintiff in the suit, identified in court papers and in an interview only by her intials, S.P.

    The Social Security Administration referred calls about the lawsuit to the Justice Department, which said it was unfamiliar with the suit.

    At the heart of the suit is a dispute over the definition of AIDS promulgated by the Federal Centers for Disease Control in Atlanta to track the spread of the epidemic. That definition has been used, the plaintiffs said, to award or deny Government benefits.

    The Federal definition lists a number of 'indicator' diseases, like Kaposi's sarcoma, a skin cancer. The definition was drawn up after studies of early AIDS victims, often middle-class homosexual men.

    Theresa M. McGovern, a lawyer with MFY Legal Services, the lead counsel in the lawsuit, said that so far the Centers for Disease Control had not conducted large studies of the effects of AIDS on women or other groups of patients. She said it was 'irresponsible' for the Social Security Administration to rely solely on the centers' definition.

    The suit seeks to be recognized as a class action representing thousands of women, children, drug users, homeless people and poor people with AIDS across New York State.

    [This Message was Edited on 06/06/2008]

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