The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

"Thirty Years of Disdain: How HHS Buried ME"

Discussion in 'Information and Resources' started by Denise, May 6, 2015.

  1. Denise

    Denise Senior Member

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    Mary Dimmock and her son have produced a valuable resource for us.
    Mary has talked about the need for a full-scale policy reboot
    regarding this disease and this resource provides the details to back up this need.

    Mary explains its origins and significance:

    “Five years ago, I was working in the pharmaceutical industry when my son fell victim to myalgic encephalomyelitis (ME). Overnight, everything I understood about medical care and about how diseases are researched and treatments developed was suddenly turned on its head. This wasn’t medicine or science as I knew them but rather medical disbelief and disdain and a quagmire of conflicting and irreconcilable disease labels, definitions, theories and research findings. My son’s life and his entire future was and is being held hostage by a parade of biases, disinterest, personal agendas, politics and sloppy science that had been going on since before he was even born.


    The bald fact is that in the last thirty years, HHS has not only failed to produce a single meaningful outcome for patients but has turned ME into a pariah. We need a sweeping reboot of every single facet of HHS’s public policy toward this disease. But HHS has been unwilling to make any meaningful changes, let alone the magnitude of changes needed in the timescale needed to address the damage that has been done.


    To change the future of ME patients, we have to change the politics and the public perception of this disease. We need to break down the walls of confusion and misinformation that have buried ME. We need to find new ways to tell the shameful story of what has been done to ME patients.


    With the intent of providing a tool to help with such efforts, my son and I compiled a detailed, referenced document titled Thirty Years of Disdain: How HHS Buried ME. This document is intended to bring together in one place key events in the story of HHS’s failed public policy toward this disease.


    The resulting document is long, making it more suitable as a deep background reference. We are creating shorter, targeted pieces to focus on congressional leaders and the media. The community is welcome to use it if it's of benefit in their advocacy efforts. The document can be accessed at http://bit.ly/The_Burial_of_ME.


    Comments are welcome and can be sent to medimmock@gmail.com. I will do my best to respond.”
     
    Aroa, Johannawj, Justin30 and 34 others like this.
  2. Sasha

    Sasha Fine, thank you

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  3. Nielk

    Nielk

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    RustyJ and Izola like this.
  4. Rrrr

    Rrrr Senior Member

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    this will, i'm sure, be a very important and influential document!
     
    oceiv likes this.
  5. SDSue

    SDSue Southeast

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    I'm just getting started reading this document, and am already in tears. What a powerful writer - she gets to the heart of every ME patient.

    I'd love to post more quotes, as there are some fabulous ones, but my cut/paste is making a mess.
     
    sarah darwins, Izola, oceiv and 3 others like this.
  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This story came to me courtesy of the Open Medicine Foundation's Facebook page:

    Excerpt from "Thirty Years Of Disdain, How HHS Buried M.E."
    READ THIS POWERFUL STORY http://ow.ly/OeNe3
    (283-page PDF)
     
    Izola, Mary, Countrygirl and 2 others like this.
  7. caledonia

    caledonia

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  8. Chris from Tampa

    Chris from Tampa

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    As someone new to this whole thing, it's becoming how mild my version of this experience is. I'm only a few pages in, but it's clear this is a labor of love, necessity, and disgust. It's quite an undertaking and a gift for us experiencing it.
     
    Izola, Sasha, Jennifer J and 2 others like this.
  9. Hutan

    Hutan Senior Member

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    I've read about half of this. I'm impressed.

    I finally fully get the issue of the naming this illness. From now on, I will tell people what I have is ME, not CFS or even a compromise ME/CFS.
     
    jadam914, Izola, TiredSam and 4 others like this.
  10. Valentijn

    Valentijn Senior Member

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    I never use CFS either. Generally I use "ME", though "SEID" or "Systemic EID (Exertion Intolerance Disease)" is luring me with its siren song as well. I'd almost certainly go with Systemic EID if talking to a medical practitioner or therapist in the US.

    But "ME" is well-enough known (and respected by the general public, if not by doctors) in the Netherlands for me to use that here.
     
  11. TiredSam

    TiredSam The wise nematode hibernates

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    Me too. What a magnificent piece of work this is.
     
    sarah darwins and Hutan like this.
  12. medfeb

    medfeb Senior Member

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    To all

    Thank you for your kind words. I really appreciate it. I also appreciate that this is a tremendously long piece and difficult for patients to read, which makes me appreciate your feedback all the more.

    I am working on a few shorter pieces - a summary that will probably end up being 16 pages (I intended 5 but couldnt do it) and a few 2-3 page versions. I will post here when ready.

    I'm sorry about the cut and paste problems. I am also trying to find a way to fix that and also fix the inactive links to footnotes.

    Please dont hesitate to send comments to medimmock@gmail.com if you see anything that I got wrong or missed.

    Thank you.

    Mary Dimmock
     
    Aroa, BurnA, Roy S and 16 others like this.
  13. Denise

    Denise Senior Member

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    I look forward to also reading (and sharing) the additional pieces. Thanks for developing them.
     
  14. MEMum

    MEMum Senior Member

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    I have only skimmed about half of this, but it is brilliant. My daughter has been ill for nearly 5 years, but not as debilitated as your son. She is now 21 and seeing many of her friends graduating. It is a heart wrenching disease. Thankyou for putting together all this info so eloquently.
     
    Izola and medfeb like this.
  15. Snowdrop

    Snowdrop Rebel without a biscuit

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    It's a very long document so I had to skim some of the sections but I also read some of it.
    What an excellent piece of work. I hope that it get's used and referenced when dealing with politicians.

    There was so much that could be quoted but I'll just refer to this bit here:

    What ME patients need now is HHS leaders and congressional leaders to exert political will, driven by a deep-‐seated sense of moral
    responsibility and justice. To correct the decades-‐long injustice, HHS must act with the vigor that characterized the fight against
    HIV/AIDS and implement sweeping changes in its policies, actions, leadership, and commitment to this disease. The medical
    community must learn about this disease and provide the kind of medical care that ME patients need. Our congressional leaders
    must implement the oversight needed to ensure that HHS makes forward progress. And all of us—HHS, families, the medical and research communities, the media, and the public at large—must start anew and rebuild this story so that ME patients can regain their rightful place among us.

    Something to work toward.
    And I look forward to that day.
    I hope it's soon because having ME is getting really old.

    And on that thought I'm off to bed.
    I might even sleep. :sleep:

    :hug:
     
    Aroa, PennyIA, Izola and 7 others like this.
  16. Snow Leopard

    Snow Leopard Hibernating

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    Interesting to read this with knowledge of recent 'changes' at the NIH...
     
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  17. Izola

    Izola Senior Member

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    Mary: Read almost all night. Amazing! I started skimming to see how it ended Did we finally get research, money and the right to keep our name? Just kidding.

    I predict that your expose' will push things ahead hard. Let's send "CFS" back to the DHHS and tell them we don't need it. We have our own name, dating back to the 60's.

    The CDC fully intended to disappear ME. It was no mistake.

    Anyway, the intent of the communication between Reeves (or was it Straus) and Fakuda was pretty clear to me, propped up by all their intrigue. (I read "Osler's Web" about 6-8 times.)


    You are truly a star :star: and a great writer :rocket:. :) iz
     
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  18. medfeb

    medfeb Senior Member

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    Thank for you kind words, Iz, MEMum, and Snowdrop. I really appreciate it.
    Mary
     
    Izola and MEMum like this.
  19. jimells

    jimells Senior Member

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    Here's the letter from Straus to Fukuda:

    (Craig Maupin's website has lots of really interesting articles. It is definitely worth a visit)

    [​IMG]

    [​IMG]
     
  20. Izola

    Izola Senior Member

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    Jimells: Thanks! iz :):)
     
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