Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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U. S. Department of Justice

Discussion in 'Action Alerts and Advocacy' started by Crappy, Feb 17, 2011.

  1. Crappy

    Crappy Senior Member

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    I just spoke to my U. S. Representatives Office for direction on pursuing a case for Discrimination against my own government. She was a bit defensive, but eventually directed me to the U. S. Department of Justice. I obtained Email, postal and FAX contact information.

    I need some help with the most effective course of action now. We could all send our own complaints, or compile signatures or even just start a list of participants who will send X number of complaints to them a day, or a week until some kind of result is achieved?

    I am angry about the glaring discrepancy between funding and resources devoted to this illness versus other illnesses. I am also angry about the discrimination that has been allowed to prevail concerning doctors, laboratories and insurance, all methodically price gouging a patient set who are desperately ill.

    I think it is imperative to marshal all possible participants for every U. S. organization we can. I would love to make this an overwhelming assault so we can no longer be ignored. Twenty five years of discrimination is enough.

    We dont have to be present or even out of the house to do this. If we mobilize all the U. S. patients we can from all associations; maybe we can get some justice and through that some recognition and help.

    If there are at least 1 mil. U. S. patients, shouldnt we be able to mobilize 10,000?
    How much longer are we willing to quietly suffer?

    Maybe Facebook would be a good platform for exposure?

    If there is no response then I guess the thought dies here.
     
  2. alex3619

    alex3619 Senior Member

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    Hi Crappy, I tried to get a discrimination case going in Australia around 1994. The time was not right. Maybe today you will have more success, we know so much more now. Bye, Alex
     
  3. justinreilly

    justinreilly Senior Member

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    Crappy,

    Can you tell me more about the processes you are looking into.
     
  4. Crappy

    Crappy Senior Member

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    I'm unsure how to handle this.

    I thought I would post it and see if there is any support, and get contributing ideas.

    I think we have been wronged. I don't know if petitioning the DOJ would be how to handle it? or if many people sent grievances of the same subject?

    Do you think this idea is a bit far fetched?

    I believe people are suffering and dying because of the negligence of CDC, NIH, HHS and possibly the FDA. These supposed guardians of the public have failed in an astounding way. I believe these agencies prove to be biased and politically motivated by their actions daily; they are not self-correcting. (The definition of Insanity is doing the same thing, yet expecting a different result.) We keep complaining to these agencies; yet nothing changes. Our government was made with checks and balances. We need to have the DOJ check these agencies on our behalf. The disheartening part for us is how slowly these huge bureaucracies work.

    If we could get the Department of Justice to take interest, maybe just the threat of being judged would make these agencies behave more fairly.
     
  5. justinreilly

    justinreilly Senior Member

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    Crappy,

    I am a lawyer, but i don't know that much about any processes by which the agencies police other agencies. is there someone here who knows more about this topic?

    There were two reports in 1999 about CDC's misappropriations from 1996-1999. Congress requested HHS inspector general and i believe the Office of Management and Budget. Both of these should still look into the misappropriations from 1985-1998 and HHS inspector general should still look into malfeasance and nonfeasance by NIH and CDC.

    if someone's civil rights have been violated, which ours probably have, then there's redress under section 1986 of i believe the civil rights act. you can bring one privately (sue yourself) or i think maybe DOJ can bring an action, not sure.

    you could try contacting DOJ and asking about this. may be hard to get a straight answer. i or another american lawyer could look this up, but it takes some time and effort which are in short supply for me! If there were a lot of interest in this i could probably look into it, but i bet someone already has and maybe we could find that person. maybe hillary johnson. she got Nadler interested in this in 1999 and got those two reports done. generally better not to duplicate efforts considering our resources are slim.

    if there is not someone who knows about this topic and can advise us, we should probably have one, and i nominate you, if you can take this on! It would be great if our grassroots and other advocacy efforts were a lot more organized. MCWPA and mecfsforums.org are doing this, but they could use a lot of help with this and/or we could use someone or some group of people to independently organize this info on a place on the web so that it is very easy to use for advocacy. CAA has only made a half-hearted, inefficient attempt at this, imo. If you or anyone else wants to do this, this would be a huge contribute to us all!

    generally the routes for people in our situation would be to write the agencies, which we have done ad naseum and we should keep up, but we have seen in our instance does work. So going to the president and congress- our congressmen, and those on the relevant committees should be our main focus now. Congress and the President can order nih and cdc to do what they want. They both can also get investigations done: congressional investigation, hhs inspector general, omb and maybe doj (again dont know on this last one). then also for section 1986 civil rights violations- a private law suit. We should go now more with Congress and the President- more chance of success, imo.

    We can send complaints to doj, omb, hhs inspector general and this can't hurt. we may have more success with the last two as complaints sent generally to doj might get lost in the cracks unless we know of a specific department in doj to which to write and a particular law whose violation we want to address- doj are lawyers and by the book if we just say 'nih and cdc have been lying about us and not funding us enough and doing an incredibly bad job' in a letter just addressed to doj i doubt it would ever get acted on.

    So: send letters to omb and hhs inspector general demanding investigations. if we find out more about doj we can pursue that. also of course contact your members of congress and those on committees with oversight over HHS (CDC and NIH). I think we should explore getting a fund together to contribute to congressional campaigns to get the ears of members. I think that's our best bang for the buck. see:
    http://forums.aboutmecfs.org/showthread.php?10009-Congress

    If you want to look it up yourself, I would suggest, if you want to look around on-line- prob start with Cornell Law School's on-line resources. The best way would be to find a law library and use the law encyclopedias- eg Am Jur (American Jurisprudence) though it is written for lawyers and uses legal terminology.
     
  6. Nielk

    Nielk

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    I think if someone can formulate a strong letter (preferably by a lawyer), outlining exactly about the misconduct of the CDC and NIH and how it has negatively affected us. How we have been harmed by getting sicker and sicker and how much of a monetary cost it ha burdened us. There has to be a check and balance system in place for all government agencies and if they are not then the government should be responsible for this.

    If a letter like this could be composed in a format of a petition signed by as many PWCs as possible. Like you said, we should be able to get 10,000 signatures just from all the different organizations representing us.

    A letter like that, with all these signatures should have a copy sent to the President, his cabinet members, all Senators and all
    Representatives and the Department of Justice simultaneously.

    I believe that it should have some impact.

    I hope someone out there can accomplish this for us.

    The buck has to stop somewhere and enough is enough.
    There is power in numbers and if we can really get so many signatures, I don't think that they can all just ignore us.
     
  7. justinreilly

    justinreilly Senior Member

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    Yes, I think this would be very helpful.

    I really think there is a need for some documents concisely and clearly explaining the whole sordid situation. It should be easy to read and engaging while also being meticulously accurate and throughly cited. These documents could be sent to congress, hhs, president and the equivalents in other countries, physicians, scientists and anyone else we wanted to inform. Links to or excerpts from these documents could be used in comments to papers, articles and blog posts on the web without having everyone have to compose a whole huge explanation every time- this is too tiring and inefficient and by doing it once (revising when needed) we could make sure it was entirely accurate and every single statement was cited to a reliable source. We would start with a short document of, say, a few paragraphs. Then additional documents each longer and/or more specialized could follow as resources allowed. (these could later be used as the starting point for articles in media and academic journals, speeches, book chapters and other communication).

    We did discuss this on another thread, but i don't think the discussion got far. If anyone has more info or leads on this topic, it would be appreciated.

    I could help on this, but ideally this would be spearheaded by someone else as i lack the time to coordinate this whole effort. If noone else leads this, I will probably eventually start this up myself. I hope that someone could start this asap though as this is extremely important, imo. This may be the best investment we can ever make.

    Is anyone interested in working on this?

    Does anyone know any good source material/ templates for this which are on topic and accurate? Source material/ templates should also be either persuasive, easy to read and/or well cited, hopefully all three. Of course Osler's Web, oslersweb.com and Magical Medicine would be used as sources; any one know of any additional documents that are more concise- for example Hillary Johnson's NYTimes Op-Ed piece "A Case of Chronic Denial".
     
  8. caledonia

    caledonia

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    If it's a matter of civil rights, what about contacting the ACLU?
     
  9. Mya Symons

    Mya Symons Mya Symons

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    Crappy, can you find the "complaint form" and post it here or provide a link to it? Maybe we can all just fill out the form and send it in, if there is one.
    Here is a link to a Department of Justice PDF discrimination form: http://www.justice.gov/jmd/eeos/FormDOJ-201A.pdf
    That one is wrong. It is for inside the Department of Justice itsef.
    Here is one for a Civil Rights violation http://www.justice.gov/jmd/eeos/FormDOJ-201A.pdf
    They have a lot of different forms. Anyone have any idea which would be the correct form for our situation. Would it be a disability discrimination form? http://www.ada.gov/t2cmpfrm.htm

    That's the way of the government, I guess. It is always confusing dealing with them.
     
  10. justinreilly

    justinreilly Senior Member

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  11. Francelle

    Francelle Senior Member

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    I know this comment is not from a legal angle but from my medical knowledge. I believe there is not a single medical condition remaining on this planet that is not as discriminated against as is M.E./CFS. It is a 'leprous' type of condition from the perspective that the people suffering from M.E./CFS are essentially shunned. Shunned by ignorance from the medical profession, governments, research, often by families, the press and communal attitudes.

    From my observation people with psychiatric conditions are now afforded respect, research, correct diagnosis and treatment way in excess of people with M.E./CFS. Even if M.E/CFS was a purely psychiatric condition, from that standpoint alone,we should be receiving greater consideration and treatment options.

    This is totally unacceptable and needs to change.
     
  12. Mya Symons

    Mya Symons Mya Symons

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    Ya, it does. Scratch those. I don't think they have any complaint forms for our situation.
     
  13. 5150

    5150 Senior Member

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    yes, how convenient for Our Govt. (no negativity meant) it's just never-ending. so tired, so vry tired
     
  14. Crappy

    Crappy Senior Member

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    Slap in the Face

    I have looked for a form too. My representatives office suggested filing a complaint with the U. S. Attorney General's office. I guess I'll call the DOJ.

    What I am after on this thread is to gauge support and specifically participation. I see an average of 100 people on PR consistently. If our numbers are up to four million, we should be able to get ten thousand participants. Ten thousand of us who are being misdiagnosed and mistreated, and treated with disdain. Anymore all you have to do is say Chronic Fatigue, and you can see the disinterest wash over the face of the person you are talking to.

    My illness is pronounced, and my computer skills are lacking. I would definitely need help Justin, Cort, Diesel, Sushi, etc... are probably better suited for the job, but I will do all I can.

    There are numerous organizations devoted to helping us, mainly with financing for research objectives. In this Forum I see people rallying for example; the demonstration at the CDC, or fundraising, etc... I want to find a way to get mass participation, without physical presence. Create the largest single collaboration for our cause yet. Phoenix Rising, Facebook CFS, co-cure, ei-resource, ME sites, etc...

    We all have been, and are, injured by a multitude of discriminatory practices. If we combine our voice directed to the DOJ or congress as others have suggested, they won't be able to ignore us. The best part is it will require minimal effort; we don't have to travel, or do anything, but participate with a name and maybe a little story of how you have experienced discrimination. Creating a "big bang" with minimal individual demands, use the internet to our advantage. This is the "perfect storm" for those of us "handicapped" by our illness and finances, we can use "the information age" as no other demographic has.

    As I said earlier; we keep complaining to the agencies that are discriminating against us, with no result. I think we need to drag them into the Justice System, they can either treat us fairly voluntarily (they have failed spectacularly), or be prosecuted; consequences! The mandate for all government agencies is to act without bias or discrimination. If the NIH and CDC cannot handle their duties without discrimination they are not properly serving their duties and management should change to people who can manage them correctly, and their funding should be examined. This should have been done ten years ago; it would have saved a lot of suffering. Now we have Social Media though, that can make our collaboration much easier and lighting fast. If we put up, maybe a Facebook page, that thousands of us could quickly participate collectively, we could "rock the boat" really hard.

    I just wanted to put this in as evidence: http://www.hhs.gov/ocr/civilrights/resources/specialtopics/hiv/index.html
    The government is bending over backwards to accommodate HIV/AIDS, where is our consideration (if our numbers are as large as purported)?
    Our suffering is not less important; as they try to make us believe.
     
  15. Marty

    Marty Senior Member

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    Crappy, you are a genius. Keep going. The HHS link was really, really surprising. This is the kind of new advocacy that can really cause a consequence. What a ruckus this will cause!
     
  16. illsince1977

    illsince1977 A shadow of my former self

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    It's been going on for longer than 25 years.

    I was a programmer in a former life, but my computer skills are way too old, rusty, they suck and I find any project commitment beyond my energy capacities - which are basically nil as it is (I can't even take care of myself). But I like your ideas, Crappy. I was going to suggest contacting your Congressperson as they are supposed to help us navigate our government, but I see you already thought of that.

    I support your goals, FWIW.
     
  17. Nielk

    Nielk

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    See below article bt Mary shweitzer on civil liberty from her website



    All Comments
    SUNDAY, FEBRUARY 13, 2011

    Civil Rights
    Why did I write yesterday's post? Because we are allowing ourselves to be distracted, energies wasted, by small things. We are in a battle for something much larger - basic human rights.

    That is what we are REALLY fighting for. The right to be free of the propaganda and censorship that has stood between our illness, and treatment, since 1988.

    Our governments - but most energetically, the governments of the United States and the United Kingdom, have deliberately sought to deny us respect, care, and treatment. Why? The insurance lobby. The cost of treating us. Making a name for themselves. Pathetic, pitiful reasons to ruin the lives of so many.

    NIH allocates (at most) $4 a person a year - one percent of what NIH spends on Multiple Sclerosis, hardly an overfunded disease. The UK has just issued special research funding - but who will get that funding? Does anyone really doubt where it will go? More "studies" that portray The Disease as the product of "inappropriate illness beliefs". Imitation research, that blames the victims for their own suffering. More censorship of biomedical information, and propaganda dressed up as psychiatry.

    The CDC says we are sick because of some vague childhood abuse. They have joined Peter White in "discovering" that a large number of us actually have major psychiatric illnesses. And CDC's website praises the UK's NICE Guidelines, even including a link - those guidelines that condemned so many sick people to going without any medical care at all out of fear of being forced into Cognitive Behavior Therapy and Graded Exercise. Now the UK is changing the rules for those who are too sick to work, who need government assistance. Shirkers all. How long before the US follows suit?

    We deserve more. We deserve an honest appraisal of the peer-reviewed research. We deserve doctors, and treatment centers, and real research. Some have been waiting three decades for this. Some have been living their whole lives, stricken as children, imprisoned in this disease - and all government has to offer them is insinuations that they are sick because they were abused, or because they somehow secretly want to be sick. All government has to offer them is the threat of being removed from their homes. They deserve better. Their parents deserve better.

    Our countries can do better.

    The campaign of constant psychobabble is just that - a campaign. It is designed to portray us as "the other" - as "different." As not deserving of the medical choices a person with MS is entitled to. As not deserving of the medical choices a person who blew out his knee skiing, is entitled to. As not deserving of the choices a chain smoker gets when lung cancer sets in.

    That is the recipe for denying human rights: portraying a person as "the other", not "one of us.". Not human, therefore without rights. In Anglo-American parlance, without the rights of free citizens.

    But we are human. We are citizens. We deserve our rights as civilians, as members of the larger community. Our civil rights.

    We have the right to be treated as human beings, not "weaklings," as Wessely loves to portray us when not in front of scientists.

    All we are asking for is the truth. Disagree over it, come up with alternative theses - but start telling the truth.

    Our enemies are the people in power who have portrayed us as "undeserving." Who censor the truth and issue propaganda in its place.

    That's a big fight, and it's not easy. It calls for strength. We have that strength. It has been honed in the fires of our pain, suffering, confusion, and despair. Our isolation. Our loneliness. Our dashed hopes. And our cares for each other. We have somehow kept on, in spite of all they have thrown at us.

    We cannot win this battle unless we stand together against our real enemies. We can squabble like any family does. But we must stop hurting each other. That also means the strength to allow disagreement - as long as disagreement does not turn into harassment.

    We have to stand up to CDC. Stand up to NHS. Stand up to NICE. Even if standing up has to be done from a gurney.

    Stand up as young people have in Tunesia and Egypt.

    But stand together. With one common goal: we refuse to be invisible any more.

    I have a quote from Martin Kuther King, from a speech he gave at the end of the march from Selma to Montgomery, Alabama. In four years, his courage in speaking out for his rights would end in his death. He knew that was likely, but he still spoke up.

    Keep this in your heart so that you remember what we are really fighting for. We are fighting for our rights as human beings. We are fighting for our freedom from invisibility. And we are fighting for the truth.

    King said:

    "I know you are asking today, ‘How long will it take?’ ...

    “I come to say to you this afternoon, however difficult the moment, however frustrating the hour, it will not be long, because truth crushed to earth will rise again.

    "How long? Not long, because no lie can live forever.

    "How long? Not long, because you shall reap what you sow.

    "How long? Not long, because the arc of the moral universe is long, but it bends toward justice."

    Not long. We will not be invisible forever.
     
  18. justinreilly

    justinreilly Senior Member

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    There are certain constitutionally 'protected classes' the US Supreme Court has said are protected from discrimination by the, is it 16th amendment (i should know this). they include sex, race, alienage and maybe a couple of others. some get more protection than others- race is in the highest level; sex and alienage are at the second, lower level. I did see on one of the forms you put up that it mentioned disability. maybe this is just from the ADA, not constitutionally mandated (it doesn't really make a difference practically though). My 'heard it on Oprah' level of understanding of ADA is that it focuses on employment (so it may not be able to help us).

    I definitely support your idea, Crappy!
     
  19. Crappy

    Crappy Senior Member

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    Feedback on Draft Letter

    I have composed a letter I am considering sending to the Department of Justice and maybe a lawyer or two.

    I know there are people here more educated than me on the illness and the law. This draft may be too verbose or whiney. Constructive criticism would be appreciated.

    I would really like to know how many people we could get to sign a petition for action?

    "I am unsure who to contact for a medical discrimination case regarding the Health and Human Services arm of government.

    I know the initial sound is a bit ridiculous, but discrimination in the case of medical help for disabled persons strikes me as a particularly heinous crime; preying on the desperate and defenseless. I have been a victim for several years, and have become desperate for help. People like me are in need of medical research and treatment and have been ignored for about twenty years; we are desperate for assistance. I pray the Department of Justice can help resolve the discriminatory practices that are currently considered acceptable behavior.

    I, and tens of thousands of others (evidence can be provided), have been stricken by an illness that is poorly understood and no significant progress has been made in understanding it since its discovery. While attention and funding has been devoted to numerous other illnesses, those of us afflicted with this illness have gone without any substantial help from anyone. We are a particularly disabled group whose illness attacks in a way that makes defending and advocating for ourselves an overwhelming task. We are an ignored section of society that have basically had all our rights to help stripped from us; simply because there is little knowledge or fear of our illness.

    I was stricken with a chronic ailment called Myalgic Encephalomyelitis or more commonly referred to as Chronic Fatigue Syndrome, currently categorized as a Neuro-Immune Disorder like Autism or Lupus. While other ailments receive recognition out of fear of transmission or the gruesomeness, or lethality of the condition. Our illness is quietly being ignored because it lacks these descriptions. What is worse, our illness disables us in a way that makes it hard to get out of the house, or spend any time in stressful situations.

    We have been quietly suffering for two decades, and our illness is still being ignored by our own government. Specifically, the National Institutes of Health and the Centers for Disease Control have continually denied the existence and seriousness of the illness, and at times, have systematically and deliberately undermined proof of the illnesses seriousness and prevalence (evidence can be provided). The political clout behind the illness should not determine the resources devoted to the illness. Resources should be devoted based prevalence in the population. The sheer number of us suffering, and evidence pointing to possible disease transmission along with underreporting of the condition, demands more attention. The lethality of this condition is not understood due to lack of a proper definition and understanding. Cause of death is mistakenly defined by a single catastrophic event potentially related to this chronic condition; missed by poorly educated medical personnel.

    Myalgic Encephalomyelitis is already many times more prevalent in the population than HIV/AIDS, yet doesnt even receive a fraction of the funding for research. No standard test has been developed to diagnose it; therefore no treatment has been developed so Insurance Companies deny most tests and medications. Insurance companies also refuse to cover any doctors too, since no treatment has been developed. We are an Orphan community, lost and forgotten. Most of us have been financially ruined by this condition. Since we tend to appear normal, we are commonly dismissed and our desperate attempts to find help are frequently exploited by the medical community. The afore mentioned problems are all rooted in the governments critical failure to properly recognize and fund understanding of the condition. If ignorance prevails the number of afflicted could swell to unmanageable numbers; if they havent already.

    The estimated cost of this illness is frequently being revised upwards as more accurate assessments are made. The cost of care and the cost to society is escalating rapidly, already calculated to be in the tens of billions annually, this issue is in desperate need of address. Denial is simply costing too many families, and too much money. To date, effectively, all research has been privately funded, as the condition aggressively escalates.

    We are people who have been ignored and abused for far too long, and we are in need of a champion, and protections from further usurious behavior on many fronts, along with justice for the current inequities."
     
  20. justinreilly

    justinreilly Senior Member

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    Crappy,

    I admire your energy and commitment!

    As a lawyer, I wouldn't pursue this based on how this was written. That's natural that you didn't write this in that mindset since you are a human being, not a lawyer. : )

    I would come right out with what the disease is in the beginning. i would ask for assistance in pinpointing what laws are applicable off the top of their heads and any other feedback.

    knowing what laws are applicable would then let us point out what exactly we need to show that we have an 'actionable claim.' it would also show us how to tell the story we need to tell.

    not knowing this we can still guess. fraud and extreme dereliction of duty would be two ideas to use to show people what the problems are.

    so nih and cdc have committed fraud by lying to congress for years and years that they were spending the money on ME. as documented in osler;s web and the two govt reports. give footnoted cites. they lied in MMW saying the lake tahoe cohort described in komoroff's landmark paper was not CFS or any other illness entity. lying that it's hysteria. crazy prevalence numbers. lies on website.

    this is what we would use the 'shock of the truth' documents for. you could rewrite the letter; perhaps being briefer and to the point to get some feedback from lawyers. that's one option. or you can wait until the 'shock of the truth' docs are done and use that with more success. either one seems ok to me. that project is going very slowly as of now with noone taking major responsibility. i will do it at some point if noone else does. we have identified the sources we want to draw from, the first step.

    good luck
     

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