"Thirty Years of Disdain: How HHS Buried ME"

[medfeb]

I wanted to let you all know that I finished updating Thirty Years of Disdain to incorporate feedback, for readability, and to update it to include the key events through the fall of 2015.

I also created a more summarized version as promised. Unfortunately, the shorter version is still 66 pages long plus references. I had hoped to keep it to 10-15 pages but was unable to and still effectively tell the story. Hopefully, this version is short enough to be more consumable.

The shorter document can be found at http://bit.ly/The_Burial_of_ME_Summary. The updated, longer document is available at http://bit.ly/The_Burial_of_ME_Background

If you have any questions or feedback, don't hesitate to PM or email me at medimmock@yahoo.com

 

[Snowdrop]

Can other people access this shorter document? I'm having trouble.
And is it possible/a good idea to pin this document somewhere on PR?

Also, if I could hear from @medfeb if there are any caveats to sharing this document?

 

[medfeb]

Hi Snowdrop,
I have not heard that other people have had trouble accessing. Could you try copying the link - http://bit.ly/The_Burial_of_ME_Summary - into the browser and see if that helps?

There are no caveats on sharing the document although I would prefer to have the link shared versus the actual document as I may want to update it in the future. If that's a problem, PM me.

 

[mango]

@medfeb is there any chance you would consider publishing the updated longer document i epub format? pretty please? i can't read this much on my laptop screen, but i'd love to read it on my e-reader.

(i tried converting the pdf myself, but unfortunately the formatting turned out very weird which made it very difficult to read.)

 

[medfeb]

I can try. Can you tell me how you tried converting the document to work on an e-reader? I don't know how to do that.

 

[mango]

I can try. Can you tell me how you tried converting the document to work on an e-reader? I don't know how to do that.

great, thank you so much! i'll keep my fingers crossed

i used Calibre (simply because i had it installed already), the program i use to transfer ebooks from my laptop to my e-reader. it usually works great with many different formats.

 

[Snowdrop]

Thanks @medfeb
Your suggestion worked. I have access.

 

[jadam914]

"We are creating shorter, targeted pieces to focus on congressional leaders and the media.”

I'm 20 pages in and I have to say so far it is well written and informative.

I wonder if clinicians got copies how much influence would it have?

 

[Dolphin]

http://solvecfs.org/%E2%80%9CThirty+Years+of+Disdain%E2%80%9D+Tells+History+of+ME

“Thirty Years of Disdain” Tells History of ME

Patient advocate Mary Dimmock and her son, Matthew Lazell-Fairman, a severe Myalgic Encephalomyelitis patient, have authored a document, “Thirty Years of Disdain: How HHS and a Group of Psychiatrists Buried Myalgic Encephalomyelitis.”
The thoroughly researched and thoughtfully crafted document provides an account of Matthew’s own battle with the disease, as well as a historical account of the litany of factors that have impacted research, prevented the development of effective treatments, degraded clinical care, and promoted the disbelief and disdain that ME/CFS patients endure.
In the document, Dimmock states: “for the last thirty years, political agendas, institutional neglect, and bad science have buried ME under a vague condition of ‘fatigue,’ often associated with mental illness.

The most widely accepted treatments have been cognitive behavioral therapy and graded exercise, used to convince patients they are not really sick, just deconditioned. Medical care is abysmal and too often results in physical harm. ME patients have been so neglected, disbelieved, and stigmatized that some have lost hope and committed suicide.”

Dimmock said that their intent in writing the document was to shine a light on the magnitude of systemic change required of both Health and Human Services and the medical community at large to correct the situation and give ME patients hope in the future. “Ill-defined patient cohorts, band-aids and incremental changes are not enough to jump-start this long-neglected field,” said Dimmock.

Dimmock and her son published their original document in May 2015; they released a summary version in December 2015. This well-researched, comprehensive document is an excellent source for all ME/CFS patients, family members, researchers, clinicians and advocates.

To view the summary version, go here.
https://dl.dropboxusercontent.com/u/89158245/Thirty%20years%20of%20Disdain%20-%20Summary.pdf

To view the full version, go here.
https://dl.dropboxusercontent.com/u/89158245/Thirty%20Years%20of%20Disdain%20How%20HHS%20Buried%20Myalgic%20Encephalomyelitis%20May%202015.pdf

 

[medfeb]

With @mango's help, I was able to create an eBook format. I've been able to open them with iBooks and Calibre. Hope they work for those interested in eBook format. Feel free to PM me if you can't and I will see what I can do.

Summary doc
https://dl.dropboxusercontent.com/u/89158245/Thirty Years of Disdain - Summary.epub
Longer doc
https://dl.dropboxusercontent.com/u/89158245/Thirty Years of Disdain - Background.epub

 

[mango]

The shorter document can be found at http://bit.ly/The_Burial_of_ME_Summary. The updated, longer document is available at http://bit.ly/The_Burial_of_ME_Background

If you have any questions or feedback, don't hesitate to PM or email me at medimmock@yahoo.com

I wanted to recommend these to someone today, but the links seem to be broken? And I'm getting error messages when I try to email the address above.

@medfeb, help please?

 

[moosie]

Is this the shorter version you mean?

"A shorter version (about half the size) of Mary Dimmock's magnum opus." on Health Rising

https://www.healthrising.org/forums...atrists-buried-myalgic-encephalomyelitis.355/

Edit No I don't think it is - it still runs to 161 pages.

Edit 2 - Ah. The original runs at 283 pages. Still not found the updated version.

 

[medfeb]

@moosie and @mango

Not sure what happened to the Bitly links. I will try to figure it out but in the meantime...

Summary - https://www.dropbox.com/s/mreey7q7lb2v0zd/Thirty years of Disdain - Summary.pdf?dl=0

Background - https://www.dropbox.com/s/hjbt3s13k61frda/Thirty Years of Disdain - Background.pdf?dl=0

I started a 20-30 page version but have not had the chance to finish