The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Severe Patients’ Letter to the IOM

Discussion in 'Institute of Medicine (IOM) Government Contract' started by rebecca1995, Jan 16, 2015.

  1. rebecca1995

    rebecca1995 Apple, anyone?

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    This letter to the IOM committee, about the needs of severely ill ME patients, was signed by nine severe patients.

    We understand and respect people's reasons for boycotting comments to the IOM, but we felt we had to protect ourselves from the CDC's harmful, pro-exercise guidelines, which were supported by a patient group in a letter to the IOM last year.

    https://www.dropbox.com/s/qqdmemsa5e3bu75/Severe Patients' Letter to IOM.pdf?dl=0

    Edit: Because some people have been unable to read the PDF on dropbox, I am posting the text of the letter below. (The formatting is not quite right, but I don't have enough energy to fix it.)

    ***

    Severe ME Patients’ Letter to the IOM



    December 16, 2014


    To the Institute of Medicine Committee on Diagnostic Criteria for ME/CFS:


    We are nine patients from three countries who have severe or very severe myalgic encephalomyelitis (ME). The world doesn’t hear from us very often because our extreme disabilities make it difficult for us to communicate. All of us are homebound, bedbound, or largely bedbound and need help with basic activities of daily living (ADLs) such as bathing, dressing, and feeding ourselves.


    We live in nursing homes, our childhood bedrooms, and subsidized housing. At least two of us can’t walk at all. Some of us have not been able to leave our homes for many years. Most of us can almost never leave our beds. We all score 10 or below on the Bell Disability Scale.[1]



    We are writing to protest the harmful pro-exercise treatment guidelines for the severely ill written by the Centers for Disease Control (CDC). We strongly disagree with the two patient groups that support these guidelines.


    We Oppose CDC Guidelines


    The CDC seems to think that we, the severely ill patients, can magically increase our activity level--without any improvement in underlying pathologies--just by trying harder. The CDC website says:


    Modifying Exercises for Severely Ill Patients


    A subset of people with CFS are so severely ill that they're largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point patients can handle essential activities of daily living — getting up, personal hygiene and dressing — is the next step.


    A realistic goal with severely ill patients is focusing on improving flexibility and minimizing the impact of deconditioning so they can increase function enough to manage basic activities.[2]


    While this advice might sound reasonable to healthy people and to mildly or moderately ill patients, it has the potential to cause great harm to those of us who are severely ill. Any form of externally imposed graded activity, however mild, can have devastating effects on us, the sickest patients, if the activity is beyond our energy envelope. Such exertion can lead to disease progression. Many of us experienced a dramatic worsening of our health from forced exercise programs, plummeting from mild/moderate ME to severe.


    If it were possible to gradually increase our activity to the point where we “can handle essential activities of daily living,” we would have done so already.


    While all ME patients should approach graded exercise with extreme caution, such “therapy” can be especially harmful to severe patients. This point was emphasized by Dr. Kenneth J. Friedman, a former professor of pharmacology and physiology at the New Jersey Medical School. He said in an interview with Medscape Medical News: “If you're lying in bed and you can't move your head and you have to speak in whispers, graded exercise therapy is not going to help you, and were you to attempt it, it would most likely kill you.”[3]


    CDC Guidelines Are Unsupported and Unsafe


    It is a mystery why the CDC has issued this pro-exercise recommendation for the severest patients. The advice is not based on studies of severe patients. We are usually excluded from research of any kind, especially studies that require patients to travel to a center, sit upright for hours, fill out paperwork and perhaps even exercise.


    Indeed, Dr. Neil C. Abbot, Research and Operations Director for ME Research UK, wrote: “…Severely affected people with ME are doubly disadvantaged: not only is this illness under-researched compared with other chronic conditions, but the most severely ill group of patients is under-represented in what little research is done."[4]

    It’s unclear if the CDC will ever study the severest patients. To do so, it would have to send phlebotomists and other medical personnel into our bedrooms because travel is extraordinarily difficult or impossible for us. In a public conference call on September 10, 2013, Dr. Elizabeth Unger of the CDC claimed that for the first time, the CDC would study the sickest patients via home phlebotomy.[5] However, to our knowledge, the CDC has done nothing to follow up on her promise.


    The CDC advice cannot be based on clinical observations, since most doctors are not willing to make house calls and have never personally examined a severe ME patient. The few doctors who do make house calls for the severely ill know that forced activity programs can cause decline. And the CDC advice is certainly not based on reality. We--the severe patients--have found that deliberate movement as part of an activity program siphons energy away from necessary ADLs such as brushing our teeth and lifting a fork to our mouths.


    Unfortunately, the CDC guidelines, which are not evidence-based, were quoted at length in a “continuing medical education” course for professionals co-sponsored by the CDC and CFIDS Association of America (CAA)[6] in the mid-2000s. Who knows how many doctors were influenced by this wrong and potentially harmful information, and how many patients suffered as a result?


    More recently, the patient group Pandora quoted and apparently endorsed these CDC guidelines for the severely ill under the subhead “Treatment Recommendations” in a letter to you dated January 22, 2014.[7] In addition to quoting the CDC verbatim, the letter says, “A way to identify those in different levels will ensure they are given the correct activity recommendation for their case.” We strongly disagree with the notion that the CDC’s pro-exercise advice constitutes “the correct activity recommendation” for us. Furthermore, we think it’s presumptuous and dangerous for Pandora to talk about "how much and what activity a person should do" (our bold). Externally imposed activity can cause permanent physical damage to the severely ill.


    It is disheartening that the president of Pandora declined to amend its document to reflect reality, though many severe patients asked her to do so. Pandora does not speak for us on this matter. We ask you to disregard that section of Pandora’s letter.


    Better Treatment Guidelines for Severe Patients


    Activity

    Severe ME patients absolutely must remain within our energy envelope, to prevent further worsening. We should increase our activity level only when our energy envelope expands; we must not push out of the envelope to meet some deadline imposed by a graded exercise or activity program. Some of us are using every available drop of energy just to survive the day--to chew the food that is spoon-fed to us and to use the toilet, commode, or bedpan, with assistance. If we have additional strength, it must go to other basic ADLs, such as bathing and brushing our teeth, not to programs of deliberate exercise. Such exercise programs divert our energy away from necessary ADLs and make us even more dependent on others.


    The International Consensus Primer for Medical Practitioners, written by dozens of distinguished experts, supports the primacy of ADLs:

    “…[T]he more limited the patient's energy, the more important it is to prioritize energy needs and budget its use…First priority is to conserve energy for the essential activities of daily living.”[8]


    We also agree with the following statement, aimed at less sick patients, from the 2014 guidelines of the International Association for CFS/ME (IACFSME): “Any exercise program should not take priority over activities of daily living.”[9]


    We, the patients--not doctors, not the CDC--must determine how much energy we have, and how much of it we have spent in a given activity. As the International Consensus Primer says, “Patients must always be in control of the pacing and duration of any activity.”[10] The Overview of Canadian Consensus Document echoes this sentiment: “Externally paced ‘Graded Exercise Programs’ or programs based on the premise that patients are misperceiving their activity limits or illness must be avoided.”[11] At no time should we have graded activity imposed on us.


    Treatments

    Because we lack even a single FDA-approved treatment, we must have access to existing therapies such as antivirals, antimicrobials, immunomodulators, mitochondrial treatments, intravenous saline infusions, nutritional therapies, and treatments for orthostatic intolerance. At the same time, physicians should respect our right to reject treatment, because many of us have experienced iatrogenic worsening.


    We must have adequate management of sleep and pain. Some of us are in excruciating pain on a constant basis and/or go days at a time without sleeping at all.


    Role of the physician

    We need physicians who are able and willing to make house calls. By definition, the severely ill have extreme difficulty traveling to local doctors’ offices, let alone to distant ME specialists. Many of us have lacked rudimentary medical care for years because we cannot find a physician willing to sometimes come into our homes and provide medical care. Please take into account our frequent hypersensitivity to sound, light, color, movement, touch and chemicals/fragrances.


    We need physicians who are able and willing to fight for sufficient home aide services for us, so that we can live in our own homes in the community instead of in nursing homes. This entails challenging Medicaid and private insurance companies on our behalf. Some of us need an aide for at least 16 hours per day or even around the clock. In addition, we need physicians who will support our requests for subsidized housing and other services.


    We need physicians who are able and willing to order assistive technology for us, such as wheelchairs (manual and electric), electric beds, stair lifts, wheelchair ramps or lifts, walkers, canes, bath lifts, reclining shower chairs and other devices to help us survive and perhaps improve.


    Other medical professionals

    We also need phlebotomists, optometrists, nurses, dentists, dental hygienists, and other healthcare professionals who are able and willing to make house calls. Some of us have lost our teeth at a young age because we have been unable to get to a dentist’s office for basic care.


    Our Requests


    We ask for respect from the medical profession, many of whom have belittled or even mocked the impact severe ME has had on our lives. Doctors take their cues from government agencies like NIH and HHS, whose employees have expressed extreme disrespect and contempt for ME patients in documents obtained through FOIA requests.[12]


    We ask for recognition from our advocacy groups. We are appalled that the CAA refused to acknowledge Severe ME Awareness Day on August 8, despite many requests from patients.


    We ask for basic civil rights, such as freedom from forced commitment to psychiatric institutions. The sickest patients are at the highest risk of having our rights violated in this way. For example, Karina Hansen, a young Danish woman with severe ME, has been held against her will for nearly two years in a psychiatric hospital.


    We ask to receive medical care and caregiving services in our own homes, rather than institutions. This is our right under laws such as the Americans With Disabilities Act, upheld by the Supreme Court’s Olmstead decision.


    Finally, we ask to be included in research studies. The discriminatory practice of designing studies to exclude the sickest patients must stop! Researchers need opportunities to focus on the more severe patients, who have the most developed phenotype/pathology.


    Thank you.


    Sincerely,




    Rebecca B.

    Sick since 1994

    United States


    Laurel B.

    Sick since 1996

    United States


    Ricky B.

    Sick since 1994

    Australia


    Linda C.

    Sick since 1994

    England



    Peggy M.

    Sick since 1992

    United States


    Roger P.

    Sick since 1987

    United Kingdom


    Jim S.

    Sick since 1984

    United States


    Katrina T.

    Sick since 1999

    United States


    Daniel Z.

    Sick since 1992

    United States


    cc:

    Sylvia Burwell, Secretary of Health and Human Services

    Dr. Francis Collins, Director of NIH

    Dr. Thomas Frieden, Director of CDC

    Dr. Elizabeth Unger, Chief of Chronic Viral Diseases Branch, CDC



    ____________

    [1] Bell, David S. The Doctor's Guide to Chronic Fatigue Syndrome: Understanding, Treating, and Living with CFIDS. Reading, MA: Addison-Wesley Pub. Co., pp. 122–123. An online copy of the Bell Disability Scale is here:

    http://users.snowcrest.net/soza/DrBell.htm




    [2] U.S. Centers for Disease Control and Prevention. Chronic Fatigue Syndrome (CFS). Modifying Exercises for Severely Ill Patients.

    http://www.cdc.gov/cfs/management/managing-activities.html


    [3] Tucker, Miriam E. “Chronic Fatigue: NIH Literature Review Faulted,” Medscape Multispecialty, 17 Oct. 2014.

    http://www.medscape.com/viewarticle/833428#vp_4


    [4] Abbot, Neil C., ME Research UK, “Severely overlooked by science – an overview of research on severely-ill people with ME”

    http://www.meresearch.org.uk/information/publications/severely-overlooked-by-science/


    [5] Unger, Elizabeth. Centers for Disease Control and Prevention. Conference call, 10 Sept. 2013.

    http://www.cdc.gov/cfs/meetings/cfspcoca-09-2013.html


    [6] The CFIDS Association of America (CAA) recently changed its name to Solve ME/CFS Initiative.

    http://solvecfs.org/


    [7] Chapo-Kroger, Lori. Letter to Institute of Medicine Committee on Diagnostic Criteria for ME/CFS. “Needs of Severely Ill in Creating a Diagnostic Criteria for ME/CFS.” 22 Jan. 2014

    http://www.pandoraorg.net/uploads/Severely_ill.pdf


    [8] Carruthers, B.M. and van de Sande, M.I. et al, 2012, p. 15. “Myalgic Encephalomyelitis - Adult & Paediatric: International Consensus Primer for Medical Practitioners,” p. 15. http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf


    [9] Friedburg, Fred and members of the IACFS/ME Primer Writing Committee. “ME/CFS: A Primer for Clinical Practitioners.” 2014 Edition, p. 21.

    http://www.iacfsme.org/LinkClick.aspx?fileticket=zYEzLn11Ej0%3d&tabid=509


    [10] Carruthers, B.M. and van de Sande, M.I. et al, 2012, p. 15. http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf


    [11] Carruthers, B.M. et al. “Overview of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Guidelines, A Consensus Document,” p. 12. Journal of Chronic Fatigue Syndrome 11(12):7-115.

    http://www.ahmf.org/me_cfs_overview.pdf



    [12] Burmeister, Jeannette. Thoughts About M.E. “P2P FOIA Documents – Part I,” 19 Oct. 2014. (Also see Part II, Part III, etc.)

    http://thoughtsaboutme.com/2014/10/19/p2p-foia-documents-part-1/
     
    Last edited: Jan 21, 2015
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  2. Gingergrrl

    Gingergrrl Senior Member

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    @rebecca1995 Excellent letter, thank you for posting the link and thank you to the severe ME sufferers for taking the time and energy to write it.
     
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  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    That was one awesome letter. Everyone should read it, even if you're not at the severe level.

    My heart goes out to those individuals who took what little energy they had, to craft such a complete and well-structured letter.
     
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  4. CBS

    CBS Senior Member

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    @rebecca1995 - Thank you for an excellent letter. I agree strongly with those who recommended this letter be read by ALL patients with ME.

    If you can't imagine that your ME could get any worse and you can still sit up to eat (assuming you have the energy to digest a diet of solid food), you're wrong but I hope you never have to learn that first hand.

    The only suggestion I might make for any future recommendations is that patients' must be allowed to allocate their resources to metabolic functions (digestion, respiration, circulation, CNS activity and thermal regulation) as the top priority.

    If your body struggles to meet these demands you likely ought to be hospitalized but given the pathetic state of care for ME patients at this time, you may be safer at home. Only when a person is well enough to need no assistance with these functions should energy then be allocated to ADL's etc.

    My heart goes out to all severe/bed-bound ME patients. Thanks again for your sobering letter.
     
    Last edited: Jan 16, 2015
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @CBS That was so well said, I wish I could triple like your post. It made me feel so many different emotions, I really am speechless. Thank you again to all the patients who wrote that letter and I do hope that everyone reads it.
     
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  6. CBS

    CBS Senior Member

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  7. Gingergrrl

    Gingergrrl Senior Member

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    @CBS

    You deserved it and I am so happy when someone feels so passionate about advocating for the most severely affected patients.

    I totally agree with everything you said. One thing that brings me hope is that the Open Medicine Foundation is about to start raising funds for a Severely Ill Patient Study which they will be announcing soon in their next newsletter (I think next week?) They are planning to study this group of severely affected patients although I do not know the details or how it will be done. But they really need help to raise more funding for this project and it is certainly not coming from the government.
     
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  8. Advocate

    Advocate Senior Member

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    @CBS, what you wrote is music to my ears: “The sad irony is that these are the very patients from whom medicine, governmental agencies, and patient advocates have the most to learn and to whom we ought to be allocating the largest share of resources. “

    You, too, @Gingergrrl: “One thing that brings me hope is that the Open Medicine Foundation is about to start raising funds for a Severely Ill Patient Study…”

    And @CFS_for_19_years , I love what you wrote: “That was one awesome letter. Everyone should read it, even if you're not at the severe level.”


    I had to leave this forum a few (?) years ago because I could not bear the hostility toward the severely ill. This hostility was forcefully expressed by the person who owned the forum at that time. I am glad to see that there are now at least a handful of people on this forum who support the point-of-view expressed in the letter. The nine people who signed it are too sick to participate here, so they need you.

    “We are nine patients from three countries who have severe or very severe myalgic encephalomyelitis (ME). The world doesn’t hear from us very often because our extreme disabilities make it difficult for us to communicate. All of us are homebound, bedbound, or largely bedbound and need help with basic activities of daily living (ADLs) such as bathing, dressing, and feeding ourselves.

    “We live in nursing homes, our childhood bedrooms, and subsidized housing. At least two of us canʼt walk at all. Some of us have not been able to leave our homes for many years. Most of us can almost never leave our beds. We all score 10 or below on the Bell Disability Scale.”​


    Perhaps extreme severity is something that has to be experienced to be believed. I do believe that Ron Davis is one researcher who will be able to accurately identify people who are actually severely ill. I am so happy that he is involved!
     
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  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    @Rebecca 1995
    good job! Thank you all for doing that.

    It would help me and maybe others if it could be posted here in plain text because it is much easier to read.

    I don't think it can be said too often that severe patients are the ones that need the most help; and it is just plain good advocacy to keep trying to educate people that severe patients exist.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @Advocate

    Thanks and if/when I learn more about this, I will post the details.

    I am so sorry to hear that you had to leave the forum b/c of hostility toward the severely ill. I have only been on PR since June 2014 and really do not know about the history. I don't think you will find it that way now and can't imagine the people here having hostility toward the most severely ill.

    Absolutely and Ron Davis is the perfect person and scientist for this role. I couldn't agree with you more and we just have to figure out a way to help them raise the funds that they need. Although I do think (or at least hope) that people with ME/CFS do believe in the most extreme severe cases without experiencing them, or at least I know that I do. I know the outside world does not, but at least I believe that we do here.
     
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  11. taniaaust1

    taniaaust1

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    Unfortunately hospitals are the worst places when one is in a severe crash due to ME. I know that very well as I end up in hospital quite often with this illness. Most severe ME people have MCS so just that alone rules hospitals out. I have a terrible time with nurses perfumes and deodourants. Usually you dont get a room alone and even if the other patients are told not to spray their deordourants, they forget!

    Noise intollerance (something I think most severe ME people get) is a nightmare in hospitals too with all the beeping equipment. A ME person cant get rest in hospital and I always come home very drained and needing to recouporate from hospital.

    Hospitals do not understand at all severe ME patients health needs and can make a severe ME patient end up even worst
     
  12. Min

    Min Guest

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    What a wonderful letter, thank you to all who used precious energy writing it.
     
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  13. taniaaust1

    taniaaust1

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    I cant seem to get the letter to download so I can read it. Would the writers of it mind if its cut and pasted here?
     
  14. taniaaust1

    taniaaust1

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    Can someone pretty please do me a favour. Im wanting to send a letter but my email hardly ever works and I just spent 20 mins trying to get it to do so but it wont (its my computer issues). Im wondering if anyone would mind sending the following letter for me to the HHS secretary with cc to the various other addresses on this.


    To:

    Sylvia.Burwell@hhs.gov (HHS Secretary)

    cc:

    Francis.Collins@nih.hhs.gov (NIH Director)
    Tomfrieden@cdc.gov (CDC Director)
    Other key government employees involved with the P2P:
    Susan.Maier@nih.hhs.gov (Chair, Trans-NIH ME/CFS Research Working Group)
    David.Murray2@nih.hhs.gov (Director, Office of Disease Prevention)
    Wanda.Jones@hhs.gov (Deputy Assistant Secretary for Health
    tania.aust@outlook.com

    January 17, 2015
    * *
    Dear Secretary Burwell,
    * *
    My name is Tanya Selth and I first got Myalgic Encephalomyelitis (M.E.) over 17 years ago when I was 26 or 27 years old which leaves me housebound (I was bedbound for 9mths with this in the past, not even being able to walk to a toilet). Im currently unable to leave my house without someone pushing me in a wheelchair and sometimes Im even too ill to get taken out shopping like that.
    * *
    I often end up in hospital due to this illness cause I collapse if I do too much and then need a saline IV at hospital to recover due to the complications of ME. ME has also prolapsed my bowel due to the IBS-C it gave me. Im now at risk of other serious issues due to it eg blood tests recently showed my kidneys struggling to work properly due to the low blood volume often found in ME patients, on top of that the ME has caused dysregulation of my BP causing it to go so extremely high at times my sight is now at risk too (scan showed swollen optic discs).
    * *
    ME isnt FATIGUE, ME isnt CFS... ME is a very serious illness!! It is one actually putting my life at risk due to severe complications Im getting due to it. ME thou is getting hardly no funding and is being ignored due to poor definations and having people without ME put together with ME people like myself.
    * *
    Thou I are not American, Im in Australia, what happens in America wiht IOM and P2P as far as ME/CFS goes IS very important to me too. I believe they are different things! I dont have CFS I have ME as known happening in "outbreaks" around the world in the past (as happened in the Lake Tahoe outbreak in the 1980s), a illness which is a neurological illness and seems to be possibly contagious. Note: others have become sick themselves after saliva contact with me eg via kissing me or drinking out of my glass.
    * *
    Ive had doctors look up the American CDC website for CFS info on seeing me for first time, so Im deeply concerned what is going on in your country as it will impact even on the other side of the world if bad decisions there are made.
    * *
    I believe using non experts on panel was a very bad idea as this is a very complex illness and some of us are disabled to a serious degree with this illness and unfortunately those of us are rarely studied...instead a group with little more then just fatigue often is put into studies called CFS ones and then those findings have very little revelence to the severe ME people like myself who cant do at all the normal "CFS" recommendations such as GET (it would put me into hospital! I get major symptoms with any exertion) and CBT doesnt at all stop me from collapsing if I tried to shop without being in a wheelchair.
    * *
    I join multitudes of M.E. advocates, patients, caregivers, researchers and clinicians, and other stakeholders, in total opposition to the IOM and P2P initiatives.
    Together we are united in stating the following:
    *
    We do not need HHS bureaucrats who are not M.E. experts to redefine this disease.

    We do not need more Government-sponsored clinical and/or research definitions for "ME/CFS"
    We do not need more Government waste of taxpayer dollars on corrupt initiatives to redefine a disease that has been correctly defined.
    We do not need more Government misinformation about "ME/CFS" disseminated to physicians, health insurance carriers, the public, and the press.

    Here is what we DO need :
    1) Adopt the

    CCC now, with an open mind toward the ICC
    2) Widely Distribute the
    2012 ME IC Primer to Doctors
    3) Increase funding for biomedical M.E. research to match diseases of similar cost and disability burdens


    Please adopt the CCC or the International ME criteria as ME patients all over the world and the top ME experts around the world are already in consensus of this definition. As things stand now, if I go to a "CFS" specialist, Im usually told that many of my symptoms are not found in "CFS" eg myclonus, tremors, seizures etc, it's true that the CFS specialists do not see many "CFS" people with many of the symptoms I have often.. thing is I do have ME symptoms if one reads of the historic descriptions of ME (I also do fit the CCC and the International ME criteria)... comparing my illness with many who currently have a CFS diagnoses due to some of the definations out there is like comparing chalk and cheese. We do not have the same illness!!!

    The ME patient group will never agree with any "so called" consensus definition which in truth isnt as the consensus has already been made, that being we want the CCC defination. This will help to separate us from the chronically fatigue patient group who do not have ME but have other illnesses often missed which is causing our illness to be watered down as there is more in the other group so that influences the research and what recommendations which end being given to those who have ME too which are often highly unsuitable for us.

    HHS/NIH should listen to the more than 50 M.E. expert researchers and clinicians who sent an open letter on Sept. 23, 2013 to then U.S. Health Secretary Kathleen Sebelius, stating in part:
    "adopt the 2003 Canadian Consensus Criteria (CCC) as the case definition for this disease.
    We strongly urge the Department of Health and Human Services (HHS) to follow our lead by using the CCC as the sole case definition for ME/CFS in all of the Department’s activities related to this disease.
    Yours Sincerely

    Tanya Selth
    A severe ME patient

    ps This is a letter for the public record to say I think a big mistake is currently being done re P2P and IOM which will affect ME patients worldwide.
     
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  15. rebecca1995

    rebecca1995 Apple, anyone?

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    Thank you for your support, everyone! :)

    Because some people have been unable to read the PDF on dropbox, I pasted the entire text of the letter into the first post of this thread.
     
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  16. Revel

    Revel Senior Member

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    Thank you so much, @rebecca1995, for adding the letter to your post (struggling on the technology front today and couldn't access it).
     
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  17. NK17

    NK17 Senior Member

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    Thank you from the bottom of my heart and my aching body @rebecca1995 and all other severe PWME.

    A quadruple like to all the others who have commented and posted on this thread, you know who you are ;).

    The severe and very severe ME patients are the most mistreated and invisible of all the suffering people in the world; our society at large is so misinformed about ME, the chronicity, gravity and spectrum of it and so much needs to be done to break the wall and chains who have been built over and around us for decades.

    I too am a supporter of Dr. Davis and OMF research projects, we couldn't ask for a better scientific champion nor a more wonderful human being. Ron Davis is even more invested in finding all the important answers to all the questions who have been ignored because his dear son Whitney has one of the most severe cases of ME.
     
    Gingergrrl and rebecca1995 like this.
  18. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    @rebecca1995
    thanks for posting that here in plain text.
    You're the apple of my eyes. :)
     
    rebecca1995 likes this.
  19. rebecca1995

    rebecca1995 Apple, anyone?

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    Northeastern US

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