Federal Lawsuit Filed Against HHS and NIH Relating to IOM “Study”

I’m m mad as hell and I’m not going to take this anymore!—Movie “Network” (1976)

Today, I filed a lawsuit against HHS and NIH in the U.S. District Court for the Northern District of California for failure to comply with the requirements of the Freedom of Information Act (FOIA) regarding documents I requested relating to the Institute of Medicine (IOM) “study” of diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome.  I have asked for my costs and attorney’s fees. The complaint can be found at this link.

I am not claiming that this is the only time a government agency has failed to comply with the FOIA. However, this case seems particularly appalling given its context:

  • Patients with this disease have been harmed, dismissed, ridiculed, abused, neglected and completely abandoned by the government, and as a result, by the medical profession, insurance companies, friends, family, neighbors, colleagues; in other words, by society at large. This is largely due to the unscientific government-sponsored case definitions, another one of which was ordered from the IOM, which is the issue at the heart of my FOIA request. In light of this crucial reality, it simply boggles the mind that the government would arrogantly ignore their duties under the FOIA.
  • The IOM “study” is a highly contentious issue and the secrecy game the government is playing at the expense of violating federal law leads many to believe that the government has something to hide. It certainly isn’t worried about giving that impression.
  • At least two other patients have filed FOIA requests similar to mine.
  • The documents requested are readily available to the government, as they have been publicly referred to by HHS and quite frankly, it’s callous to force patients to have to go to the effort of filing FOIA requests given the toll that takes on their health.
  • I followed up on my initial request 3 times and I sent one last letter to the government 5 days ago warning them that my lawsuit is imminent if they don’t comply immediately.

I don’t understand why other patients find this kind of mistreatment acceptable and continue to seek a seat at the table when it is clear that the game played at the table is rigged (to borrow Lisa Petrison’s terms). The government feels comfortable violating federal rights of patients for whom they should go above and beyond at this point to atone for their decades of abuse. Yet, the opposite is true. What will it take for people to see that the bureaucrats will not move an inch, unless we make them by suing them or by making them look bad in public? Cooperation clearly hasn’t worked for us because doing the right thing is not a variable that factors into the equation for the government. Remember, the best predictor of future behavior is past behavior, especially when there is a clear indication, as there is here, that somebody, the government, is doubling down on their prior infractions.

Complying with our clear and basic federal rights is about the least respect towards the patients the government should be able to muster. Looking at these facts, one can only guess the level of disgust the government must have for us patients. I have heard from many patients that the feeling is mutual at this point.

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106 Responses to Federal Lawsuit Filed Against HHS and NIH Relating to IOM “Study”

  1. Laurel says:

    Cheering! Thanks so much for doing all this work, Jeannette. I sure hope this makes them finally sit up and pay attention.

  2. Wildaisy Fl says:

    Patricia Carter
    Jeannette, I am overwhelmed. Thank you, thank you, thank you. I have tears in my eyes. I think you may be the person who finally gets good research and treatment for M.E. patients. I am in awe of what you are doing. You have so much courage, intelligence, grace and compassion that I wonder if anything can stop you. You know what a federal lawsuit involves, and you are willing to do that on behalf of your fellow patients. I do not think the government and our so-called “patient” organizations have a clue who they are dealing with when they treat you with disrespect. I think you just may bring them to their knees. You are incredible!

  3. Audrey says:

    You are truly an inspiration and have given me more hope then I have had in 30 years. My prayers are with you.

  4. Robin Funk says:

    Thank you a million times over. You’ve gained a line on my list of heroes.

  5. Anne LiConti says:

    Jeannette!
    You are awesome, tough as nails!!!
    Jeannette B- The M.E, blogger lawyer with the Iron Fist! :)
    Way to go!!!! Awesome!!!! Doing the happy dance!!!
    Make em pay!!!!! :)
    This is OUR year!!!! They will never walk on us like a doormat again!
    God bless you!!!! :)

  6. Delia says:

    Thank you. Thank you. From the bottom of my heart.

  7. Colleen says:

    There is no excuse for not responding/complying. Will be watching closely!

  8. Irene says:

    Thank You, so much !

  9. I agree with all above comments! THANK YOU!!! I too am in AWE of your advocacy for us! Your strength in spite of illness is appreciated more than words can say. I have always said we need a lobbyist. Thanks to your federal lawsuit, WE HAVE ONE. If I can do anything to help (or we), please let us know!!!

  10. shirley says:

    Jeannette you are so awesome!!! Clearly the “game is rigged” and has been for decades and most patients know this. The HHS, CDC has been keeping horribly ill patients bed and house bound and suffering for far too long that it is hearbreaking. And they just might not get away with it much longer thanks to you.

  11. Marcie Myers says:

    Hello, Jeannette! Basing your name on the other comments so I hope that we are all correct. Hope your efforts bring results. The bottlenose of politics can become bottomless and be oh so very frustrating. I, too, write as an advocate for CFS/ME for years now and my current “baby” is that my illness/diagnosis (which has an ICD-9 code that pays my health insurance charges as well a much too early SS check) is NOT YET TAUGHT IN MEDICAL UNIVERSITIES. Check out that thought! I live in Augusta, GA where we have a medical teaching school/clinics/hospital but not a single MD there knows anything whatsoever about ME/CFS. Elizabeth Unger at the CDC is in charge of developing teaching curriculum which must then be approved by the American Association of Medical Universities. That she is behind schedule must be an understatement. It is my opinion that until MD’s across the nation have a baseline knowledge of CFS/ME, the ONE MILLION Americans with the diagnosis can’t be properly diagnosed much less treated or properly referred. I’d encourage ALL OF YOU to ask Dr. Unger when the curriculum is ready. As well, I feel that CFS/ME and other similar NEI diagnoses should be under their own umbrella. Our being under CDC’s “Chronic Illnesses” currently includes heart disease, diabetes, and other hugely populated disorders and we are getting “lost” no matter what the Surgeon General said at the FDA meeting. She was simply listing the other chronic illnesses when she stated that we were “as important as……”. Luck to ya. Marcie Myers, CFS since ’94.

  12. Never has a complaint brought such joy to my heart!

    You have joined the ranks of Gandhi, Robert Kennedy, Abe Lincoln and all the other hero-attorneys who have countered the stereotype of the selfish lawyer and contributed so selflessly to humanity! Please keep it up!

  13. Jeanette – Sincerest gratitude for going to bat for all of us at the high cost it’s going to require. All the powers that be are going to have to take notice that we’re not letting them get away with being the man behind the curtain trying to dazzle us with GET and CBT.

  14. Sue Sullibert says:

    Thank you, Jeannette. Thank you, thank you, thank you!

  15. Carrie says:

    Thank you, Jeannette, for your courage, your intelligence, your fire and your willingness to stand up for the sick and battered who have not had a voice in this important matter for decades. You ROCK!!!!!

  16. Joan McParland says:

    Thank you from Northern Ireland Jeannette. Wishing you the very best for a successful outcome. This has got me thinking about a similar attempt to get to the truth about the PACE Trial, I wonder could we take on a similar attempt for the UK cover up which will hold back government funded bio-medical research for decades if it is not brought to light!
    Sending all the support we can from the other side of the world. Thank you, I admire your bravery and determination.

  17. JohnnyD says:

    Double fabulous! Oh hell, triple!!! ;)

  18. Lo says:

    Smiling ear-to-ear reading your complaint, Jeannette! You’ve made my decade:-)

  19. Gabby Klein says:

    I am mad as hell too! Thank God that we have you on our side to fight this. HHS has stepped on us and abused us for far too long.
    Watch out HHS, Jeanette is here and has the backing, respect and gratitude of so many of us patients.

  20. AnneFightsMe says:

    Governmental arrogance and secrecy is exactly why the FOIA was written. Patients have tolerated governmental arrogance and secrecy for far too long. Thank you, Jeanette, for your hard work on this. Is there any way we can provide support/help in this effort?

    You speak for so many. Hopefully, you will embolden those who have consented to the IOM madness to change their stance. Anything done with that much secrecy, despite a huge outcry, has an “agenda” which the agency knows will highly unpopular.

    This is a real disease, with real suffering by real people! HHS, IT IS TIME FOR REAL SCIENCE.

  21. annefightsme says:

    Governmental arrogance and secrecy is why the FOIA was written. Patients have tolerated such governmental arrogance and secrecy for much too long. Thank you, Jeanette, for taking action on behalf of the patient community. Is there anything we can do to support you in this action?

    Anything done with this much secrecy, despite loud public cry, clearly has an “agenda” that HHS knows will be widely denounced. Cooperation has to be two-sided. Right now, patient cooperation is simple capitulation as HHS has done zip in return. Now, more than ever before, this community needs to speak with one voice. I hope that the need for this legal action will cause those who are supporting the IOM contract to rethink and change their positions.

    Real people, real disease, real suffering. HHS, WE DESERVE REAL SCIENCE.

  22. Ess says:

    OH, my gosh, Jeannette–it’s hard to come up with the words to convey our overwhelming JOY for this well-warranted LEGAL action that you have taken towards the STEALTH government movement AGAINST us–pw ME/CFS–in filing a lawsuit against HHS and NIH.

    THANK you soooo very much for having the internal strength and know-how to LEAD in this legal arena!! WITH YOU 100 PERCENT with MUCH GRATITUDE!!!!

    As you have stated above “I don’t understand why other patients find this kind of mistreatment acceptable and continue to seek a seat at the table when it is clear that the game played at the table is rigged (to borrow Lisa Petrison’s terms).” I understand your statement–perhaps, in understanding, we can compare this situation to life with a personality disordered individual–such as a SOCIOPATH–and liken this to the government’s OPPRESSION towards pw ME/CFS. The ongoing PATTERN of ABUSE, MALtreatment and DISregard towards an individual or a group of people, as in our case–this DISTORTED behaviour ‘against’ becomes ‘the norm’ and ‘can be’ ‘accepted’ as the norm. YET, this type of UNjust behaviour ‘against’ is, in fact, FAR FROM the norm and is COMPLETELY UNACCEPTABLE–particularly with THIS disease of ME/CFS, for example. This DYSfunctional pattern of UNtoward behaviour by the government is not only INappropriate–it is TOTALLY NEGLIGENT, IRRESPONSIBLE and EXTREMELY HARMFUL as you have laid out above.

    It takes MUCH courage and EFFORT, particularly in SERIOUS ILLNESS, to STAND UP to this HORRIFIC MIStreatment and BULLYING towards us, and, therefore, it is/can be much easier to ‘choose’ to stick with the ‘status quo’ and stay STUCK in MALtreatment–also there can be the fear of ‘what if IT gets WORSE’–along with the hopeful DELUSION that ‘maybe’ ‘just maybe’ the outcome will be different ‘this time/next time.’

    NOOOO, it WON’T!!! THERE IS AN ORCHESTRATED PLAN AND A MOVEMENT AGAINST THE SCIENTIFIC RESEARCH AND ANSWERS FOR ME/CFS. AND — with MUCH EVIDENCE we can CLEARLY see that this MOVEMENT AGAINST pw ME/CFS has gotten BLATANTLY WORSE; decade after decade—with JEANNETTE now filing a LAWSUIT AGAINST HHS and NIH.

    WHY does this UNtoward MISSION PLOT AGAINST us pw ME/CFS perpetuate?? It seems that there is waaaay too much @ stake here in this SCANDAL, this COVER-UP–and if I may, offer this link of previous criminal charge against the CDC regarding ME/CFS–the SCANDAL was exposed by the efforts of a CDC scientist, a journalist and a U.S. Congressman–CDC charged with conspiracy, fraud and lying to Congress in regards to ME/CFS.

    http://bealightcfsawareness.blogspot.ca/p/politics-of-cfs.html

    If one ‘chooses’ to succumb to the BULLY and be MANIPULATED into PLAYING THEIR GAME–that seals one’s fate to be STUCK with ‘the status quo AND WORSE.’

    As with life with a SOCIOPATH–we must choose to FACE REALITY and seek our long OVERDUE JUSTICE. There is NO reasoning with a SOCIOPATH/this Government; cooperation does NOT work–because they do NOT want the TRUTH and the JUSTICE that WE pw ME/CFS want–for there is a HIDDEN DECEITFUL AGENDA–altho we are DEFINITELY on to that!!

    Isn’t there also something about ‘accommodation’ for patients with illness/serious illness that must be legally considered–as in accommodation with giving ‘more than adequate’ lead time for meetings, to book flights, etc. Taking advantage of a seriously ill population is, indeed, DISGUSTING!!

    Once again, APPLAUSE and sincere thanks for Jeannette’s advocacy and actions to help the ME/CFS community!!

  23. Mindy Kitei says:

    Never negotiate with terrorists. Sue them instead. Frigging fantastic, Jeannette.

  24. cheryl says:

    Fantastic ! Thank you . Can you use a small donation to help off-set the cost ?

  25. susanna says:

    Jeanette,
    You are fabulous! This is what we need!
    Watching with great interest from Australia.

  26. Thanks for all your efforts Jeannette, you’re doing the right thing. This is happening worldwide, therefore we should create a global task force of patients and healthy people, that are now scattered around the world, to fight injustice and demand a streamlining of medical research.

    Eddy (Belgium)

  27. Penelope says:

    US government agencies have been playing fast and loose with their administrative decisions, in ways that are locking ME patients and their treating physicians out of so-called public consultation.
    Thank you so much for yet again calling an agency to account for their actions.

  28. Caledonia says:

    Amen, Hallelujah! You go girl!

  29. Kathryn Stephens says:

    I have been waiting 25 years for this, Jeannette. There are not enough words to say thank you, but I do. I only hope this is in time for my granddaughter to have a life ahead of her. Mine is being taken by this DD, all because the CDC decided we patients were too much trouble. The NIH has a lot to account for, and the DHHS will be made the scapegoat. Blessings on you.

  30. RustyJ says:

    Best wishes. Wrote an article on my site: http://www.mecfsportal.com/index.php

  31. elsvh says:

    Jeanette, i,m sick as hell at the moment but smiling from ear to ear!
    My soul is dancing, my heart is cheering, my brain is happy.
    The ‘iron fist’, the rock that can shift the river of negligence, utter denial of our rights.
    The person we were waiting for and dreaming of. The one that DOES something, not just talks of doing something.
    You have support from all over the world.
    Your name will be forever in my heart and mind.
    Thank you à thousand times!

  32. Noreen Murphy says:

    Jeannette, thank you so much for doing this.
    Having M.E. for 27 years (half of my life) and seeing the damage that is being done (and allowed to be done!!!) to patients, including children with M.E., this gives us hope. Governments have treated us appallingly and inhumanly. Their neglect has caused so much suffering (and death), not to mention the lack of research that could have been done throughout this time!!

    Yet, we have M.E. experts in lots of countries, including here in Ireland.

    What has been done to M.E. patients will go down in history alongside the other abuses perpetrated against people by governments and their agencies.

    Will be watching from the Republic of Ireland and wish you the very best.

    Thank you, thank you, thank you.
    Noreen.

  33. Nina says:

    I applaud you and thank you. Things must change. Best wishes x

  34. Thank you, 23 years living with ME. My daughter is in her 6th year of ME. We feel alone most the time, thank you for being our voice.

  35. m mitchell says:

    Jeanette, this is the best darn complaint i ever witnessed! You go girl!
    Why the ME/ CFS charities never picked up on this & took action i’ll never know.
    Sending you HUGE amounts of love & support from little Britain across the great Pond. Ps i’d just love to see your bill landing in the lap of mr government!
    Jeannette, THANK YOU!

  36. Janet Smart says:

    There can be no other group of vulnerable people treated with such appalling neglect. People with ME are dismissed by the medical proffession, often ignored by family and friends, we live in the shadows, some of us bed bound, tube fed and catheterised, many of us die through lack of care. We have been stigmatised to such an extent that surely it will be reflected upon as one of the greatest scandals of modern times. There is a growing global movement which is intent on ending the abuse, too many families are tormented by Psychiatrists who threaten to remove children, too many lives have been lost when they have succeeded in doing so. Jeannette we bless you for giving us what has been denied for too long, hope!

  37. Rosie says:

    Thankyou thankyou! What you are doing is so immensely important. I hope you succeed in your goal now, but if you don’t you will have created the most damning paper trail…one with no ‘wriggle-room’ and that will be equally important in time too xx

  38. Anonymous says:

    well done, supporting you from Ireland

  39. Babs says:

    Fantastic. Thank you so much and good luck xx

  40. Anonymous says:

    Jeannette,

    I am dancing from my bed right now!!! :) :) :)
    Seventeen million people – 34 million eyes and ears, we have your back 24/7.
    Sending you a pair of special pants, so you can do a little dance and get down tonight. :) http://youtu.be/otCpCn0l4Wo and http://youtu.be/8ZdRPT0mL9I

    Wally

  41. Sally says:

    Thank you Jeannette – you are amazing!

  42. Bill Sswift says:

    You’re a star Jeanette. It’s great to know that there are people like you on our side, thank you so very much.

  43. Kelsey teale says:

    I commend you. I hope you get your answers.My thoughts are with you and your family, and that you are supported in this mammoth challenge

  44. Pam A. says:

    Thank you from the bottom of my heart, Jeanette!

  45. Deborah Waroff says:

    Three cheers and thank you much!!!

  46. Anonymous says:

    Best wishes from my daughter and myself in Australia …. will be interesting. Good luck :)

  47. Jackie Harrington says:

    Good luck from my daughter and myself in Australia… it will be extremely interesting…

  48. Donna Richburg says:

    You rock! Thank you for fighting the battle that so many of us cannot fight! Thank you from my precious 5 1/2 year old son who is convinced the doctors will find a way to make me well again. I wish these government jerks could look into his eyes or see him holding my hand while I cannot move.
    Again, thank you.

    • I can’t write too much today. Too depleted. Please forgive me everybody. Your support means a lot and I am extremely touched.

      But Donna, I wanted to reply to you because I have a 3.5-year old and reading your note resonated with me so much. We are fighting for the kids. And the severely ill. This is why we’ll never be bullied into giving up.

  49. Libby Boone says:

    Words cannot express my gratitude, admiration, and enthusiasm!
    I feel that our ship may finally be coming in.

  50. Merry Chase says:

    I am in awe. Having lost the capacity for the type of analytical thought it takes to even understand a fragment of M.E.- related law, politics or science, I’m in awe of your ability not only to comprehend but to take action. I know since you’re a fellow patient this has got to be costing you. You can get your court costs but they can never repay you for the pain and exhaustion. I hope you’ve got a great support team in place and can rest and recover from this mighty effort. Thank you!

  51. steve hawkins says:

    Well done Jeanette. We are lucky to have someone with this degree of legal expertise on our side!

    (y)

  52. The Walking Dead says:

    Thank you Jeanette, im in agreement with everyone here. Jeanette, your a true testament to Ampligens efficacy, try not to run yourself into the ground though. Jeanette I have talked to you before about the importance of the two day stress test, I think a second lawsuit against the CDC/Dr. Unger for denying the 2 day CPET is somthing to be considered, as a Registered Nurse I never had a Physician NOT order a test that would diagnose a illness. In fact they usually ordered many test to Rule Out illness, some Physicians would order many test before they even saw the patient. The 2 day stress test shows metabolic failure on the second day, THIS IS STRONG PROOF OF A MAJOR ILLNESS, and a primary diagnostic tool for the ME/CFS Community. The CDC/Dr. Unger are negligent for not ordering this test, and more importantly using this information to educate physicians on this as a diagnostic tool. If a physician knowingly denied a test that would diagnose a illness, a medical malpractice suit would be appropriate. Dr. Unger is the physician not ordering this test. Why? Because this test will take mental illnesses off the table completely, and the TRUE number of people with this illness would be revealed, which is probably staggering. I think she’s not wanting to budge on the CBT/GET, and this test would take those mostly off the table as treatment.

  53. Rebecca says:

    So many of us who suffer from this disease are lawyers! I really appreciate what you have done, Jeannette. I also think, having watched what’s going on over the past many years, that it’s time to ramp up to file a class action suit against the government for its many failures to deal with this illness properly. While I no longer have the mental wherewithal to engage in lawyering myself, I wonder if we couldn’t find enough money and/or legal help to allow us to proceed in this way. I’ve concluded that the government has clearly demonstrated its unwillingness to help us, and that there’s little fruit in continuing to play by their rules.

    • I am a lawyer, too. Or was before getting so sick. Last night I could not read a Dr. Seuss book to my kindergartener.
      Maybe class action is the way to go.

      • Social media has given us a way of connecting and more importantly, organizing. There are many legal issues that should be investigated. E.g.: it would appear to me that there have been actions by licensed medical practitioners that if nothing else, go against the Hippocratic Oath. These actions should be cataloged and the AMA should be officially notified.

        There are also many documented instances of “scientists” knowingly employing improper scientific methods. I don’t know who would oversee this sort of activity, but from my time working at Bolt, Beranek and Newman, I do know that in terms of worth, a researcher’s integrity is 2nd to nothing.

        I am not a lawyer, but I’ll do what I can to help.

        We need to be focused and organized if we are to have any chance of finally being heard and recognized. E pluribus unum: out of many, one.

  54. Pat says:

    Thank you Jeanette. The general public does not know or understand the injustices suffered by individuals with ME. Our prayers are with you in this endeavor.

  55. r says:

    Thank goodness you are doing this, we need more to stand up for our human rights. I appreciate all your hard work and will be following this closely. Thank you, thank you! Any help I can give is yours.

  56. Clarissa Shepherd says:

    Thank you so very much for a fight that concerns so many of us who are surviving and illness with a trivial name. I’ve had ME/CFS for over 21 years and have been dismissed and that I’m not sick far too many times. May you find a new found strength in this battle and may you have a win. My heart and thoughts are with you, my fellow survivor.

  57. Anonymous says:

    Thank you so much for your courage in doing this!

  58. Leigh Prim says:

    Thank you so much for doing this and for your courage! (I don’t think my other comments posted, but if you get two, . . . . )

  59. Leigh Prim says:

    I believe that a lot of patients do NOT find acceptable what we have experienced and our government’s health agencies who are supposed to charged with public health matters.
    The problem, as I see it, is that we are so ill, and because of governmental neglect and implied ridicule that we are nuts, many of us are too sick to write posts let alone file a lawsuit. Many people have family members look at us and wonder why the heck we don’t get off our butts–we look fine! Of course there are wonderful people out there helping their family members with this illness also.
    I commend you for your guts as I know many have just given up after many years and decades of hitting a brick wall. I am far from nuts, and personally couldn’t even believe I could be so sick and not find one doctor who could help me for years, and the one I did find was ridiculed and eventually out of practice. I even began to doubt my sanity.
    Many of us have had to resort to experiment with alternative resources in the medical community.

  60. CC says:

    Whoot! You rock!!! From my home I’ve only been able to offer support, sign petitions, ask for info regarding the P2P, contact representatives, etc. But you have the knowledge to get things done! It seems like everything we do falls on deaf ears. I bet they’re listening now! Thank you for being our voice. Rest up and be gentle with yourself so you can crack their noggins! We have your back! The world of ME/CFS is watching! Thank you!

  61. gg says:

    Re: Federal Lawsuit Filed Against HHS and NIH Relating to IOM “Study”

    What kind of support do you need?

    GG

    “Cooperation clearly hasn’t worked for us because doing the right thing is not a variable that factors into the equation for the government. Remember, the best predictor of future behavior is past behavior, especially when there is a clear indication, as there is here, that somebody, the government, is doubling down on their prior infractions.”

    Not sure why this is a surprise either, look at the top “man”, he’s not accountable for anything that he does, he’s always finding things out in the news. Give me a break! Nevermind, just stay the hello out of my way!

  62. Akrasia says:

    Major props to you Jeannette.

    It’s about time someone turned up the heat on the government and challenged the illusion of their benevolence by using the courts.

  63. Anthony says:

    Thank you from the husband of a long-term ME patient

  64. James Hall says:

    Kickin ass and taking names, I love it. You go girl!!!!

  65. Ess says:

    Sooo, to the story of–THE LAND of OZ and the IoM CONTRACT.

    Dorothy and her dog Totto, along with a Scarecrow who needs a brain, a Tin Man who wants a heart, and a Cowardly Lion who needs courage travel to Emerald City for they have heard tales of a great and powerful wizard in Oz who can help them, and so ‘trusting’ this–off they go!! They all ‘desperately hope’ that ‘once they have gained audience’ with the great and powerful Wizard of Oz that he will help them with their struggles and grant them their needs. But–wait–what’s this–there is NO help and NO granting of their needs from the Wizard. NOT happening :(

    WHY NOT ?? After all, they were promised by the Wizard of Oz that he would help them??!! Welllll, turns out that the Wizard of Oz was EXposed as a trumped up fake, a phony, a fraud, a LIAR, and a deceitful coward—who had nobody’s best interests in mind but his own and was NOT trustworthy at all.

    Yes, when they opened the curtain and EXposed the reality of what the great and powerful Wizard of OZ really was, perhaps we can see certain ‘players’ in the IoM contract debacle along there with OZ.

    And THAT is the story of the trip to THE LAND OF OZ and the IoM CONTRACT. ‘Off to see the Wizard, the Wonderful Wizard of OZ.’

  66. Liz Willow says:

    Well-done, Jeannette! Keep fighting those that are trying to make us disappear in ways they don’t expect. We’ve certainly ben pummeled enough by them!

  67. Alpa says:

    Jeanette, you are incredible, courageous, brave and determined. Thank you more than words can say, for what you are doing for us. Today, I have hope.

    Will be watching closely from London. Hope you are taking care of yourself as much as possible and are being well supported.

  68. Ren says:

    Thank you, Jeannette. For what it’s worth I’m going to copy my state representatives on your work. I also wanted to add that, to my knowledge, the current IOM-VA contract to define chronic multisymptom illness is also “MIA”, despite FOIA requests. (http://www8.nationalacademies.org/cp/projectview.aspx?key=49546)

    And a final thought – the IOM GW&H reports (and perhaps other IOM reports also) all contain a quote from Goethe, “Knowing is not enough; we must apply. Willing is not enough; we must do.” – so I think your German heritage provides a nice flair of poetic justice as well in this battle. Thank you for “applying”, thank you for “doing”.

  69. Kathy D. says:

    Thank you so much for fighting for us. It’s not only those of us living limited lives, but the children. The comments by parents here are among the most moving.

  70. Appreciative says:

    Dear Jeannette,
    Thank you for all you do on behalf of all of us. Please take care of yourself.

  71. Jeanette, you’re a hero. Thank you so much for using your talents, skills, experience, as well as your precious health reserves, to act on our behalf in this way. I have no doubt that we who have commented here speak for many who are unable to do so or would do if they were more aware.

  72. Polly says:

    Thanks for all you’ve done and continue to do. You are indeed a champion for the sick and weary population of ME/CFS patients.

  73. VB says:

    Thank you Jeannette for initiating a new era: the ME/Cfs ACTIVISM era!!!!
    We have to join forces and FIGHT, it’s US vs. THEM.
    You are our CHAMPION and LEADER, tell us what we can do to put pressure on the governamental agencies and gain even more momentum.
    THE FIGHT IS ON, for US and for the generations to come!

  74. Ess says:

    Thanks for the update, Jeannette–WOW–talk about a ZIG and a ZAG, passing the buck and NON-compliance of the law re the FOIA on this. Perhaps they are hoping to avoid another lawsuit filed against them–and thought this would be an appropriate STOP-GAP measure/answer. NOT AT ALL!!
    Be well!!!!

  75. Thank you for using your talent and time to speak for millions of Americans and humans across the world that suffer unnecessary anguish because of ignorance. Until we have diagnostic criteria that experts agree on (not the IOM in my opinion), we are at a stalemate for valid research and a teaching curriculum. When I was in charge of hospital education, I was a member of the American Society for Hospital Education and Training. All those years ago, we were each concerned about the roll out of “managed care” and “capitation” in the health insurance market, a healthcare system brainchild of Hilary Clinton. Not ONE person from the medical field sat on that panel, not a physician, a nurse a physical therapist, no one, nada! We all know how that turned out.

    In healing and hope

  76. Pingback: Does the IOM Task Order Comply with Requirements of NIH/NAS Umbrella Contract? | Thoughts About M.E.

  77. joy says:

    Jeannette: You are an amazing person. And a star. That all your talent, intelligence, grace, humor are all wrapped up into one being doesn’t seem possible, but it is…,. Thank You. I would have loved to see the look on the Assistant AG’s face as s/he encountered you in Court.
    You have a nice rest. Peacefulness. .. oQ zz z z z

  78. Cheryl White says:

    Thank you so much for the time and energy it took to speak on behalf of all of us with this illnesses.

  79. sunshinebright says:

    There isn’t much to add after reading all the comments above. I watched the public committee “meeting” yesterday, and feel so much appreciation for all the efforts of the people who commented. There clearly was GREAT EFFORT by several who are suffering. They will probably be bedridden for who knows? how many days, or weeks. My daughter’s ME/CFS/FM is quickly becoming more debilitating, especially in the last year, and just this past month, she is suffering even more. She is expending a great amount of energy (which she is having so much less of) to go to work. She has a responsible, stressful financial position in her company, and doesn’t know how much longer she is going to be able to continue. Her position is getting more tenuous. She needs to job to continue paying her bills, her mortgage, etc. She also has a 23-year-old daughter, who suffers from Autism, and who is now (finally) on Social Security disability. I don’t know what is going to happen with them, if my daughter can no longer work. I live on a fixed income (retired), and have no room in my home for them. And the cost on my autistic granddaughter, emotionally, is impossible to think of. I am constantly worried, and stressed out, and I worry about my own health, also. More power to you and all of the people so involved in trying to make sure that all sufferers are treated quickly and fairly by our government.

  80. Pingback: CFSAC Meeting December 2013: Webinar from Hell | Thoughts About M.E.

  81. Pingback: Legal win for ME patient in the US - Shout Out About ME

  82. Pingback: Legal win for ME patient in the US - Shout Out About ME

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