"Thirty Years of Disdain: How HHS Buried ME"

Denise

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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.”
 

SDSue

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Like my son, ME patients live in a world that is the medical equivalent of the most squalid slum in the poorest country on earth.
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.
 

CFS_for_19_years

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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."
The February 2015 Institute of Medicine report on ME/CFS and the draft December 2014 Pathways to Prevention ME/CFS report confirmed what patients have long known. For the last thirty years, the government, academic institutes, and medical societies that drive biomedical research and deliver clinical care in the U.S. have at best ignored myalgic encephalomyelitis (ME) and, at worst, led the charge that turned ME into a pariah.
READ THIS POWERFUL STORY http://ow.ly/OeNe3
(283-page PDF)
 

Valentijn

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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.
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.
 

medfeb

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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
 

Denise

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

MEMum

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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.
 

Snowdrop

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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:
 

Izola

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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
 

jimells

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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.)
Here's the letter from Straus to Fukuda:

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