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Thoughts About ME: Federal Lawsuit Filed Against HHS and NIH Relating to IOM “Study”

J

JohnnyD

Senior Member
Messages
206
http://thoughtsaboutme.com/2014/01/...ed-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.
 
Sing

Sing

Senior Member
Messages
1,782
Location
New England
Just in the past few days, I started to feel that only by lawsuits would we be able to change the course of how we as a patient group have been treated by our federal government. Being nice, patient and going along with whatever is handed to us has never worked. It is intolerable and dangerous that we be subject to this denial of research and treatment any longer, very much including the establishment of an accurate case definition.

So, your action is of great value to me and I hope it will signal a change in course for our patient group.

Thank you for your courage, clarity and initiative. Only power is going to impress these shameless, dishonest people for whom science, reason and ethics all seem so useless. If that is an ad hominem attack, I think it is richly deserved.
 
Ecoclimber

Ecoclimber

Senior Member
Messages
1,011
I believe it would be a good idea for those who blog or have web sites to post this information from all over the world. It might get picked up by a news media organization if your headline is catchy enough. I believe everyone now should take to social media, FB, tweeter, Reddit, Google Plus,Pinterest, Blogger etc and starting shouting from the rooftops about contents of the lawsuit of David vs. Goliath, patient community and advocates against the bureaucracy of HHS!!

We are fighting for our lives here and this is one way each of us can play a small but significant role!!! It will put pressure on HHS and validate our patient advocates!!

Let this be the first of a string of lawsuits against HHS and the IOM!! Enought is enough of this obfuscation and secrecy on the part of HHS!! I believe that all those who also filed under the FOIA act and have not received a response or if they did and it was not germane to the request, should file within their own jurisdiction for a cause of action against the Federal HHS. Multiple lawsuits would pressure the Feds and would be picked up by news media. The lawsuit that Jeannette filed is a fine template to use in your action as well.

There is also a possibility of certain unname political action group willing to lend funding and attornies to file a lawsuit against HHS in this situation The elections are not too far away. But the consideration would be using the words 'Death Panel', 'Death Contract' 'Genocide' as terms in press and media news briefings.

"My administration is committed to creating an unprecedented level of openness in government. We will work together to ensure the public trust and establish a system of transparency, public participation, and collaboration. Openness will strengthen our democracy and promote efficiency and effectiveness in Government."
— President Barack Obama
 
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J

JohnnyD

Senior Member
Messages
206
Sing said:
Just in the past few days, I started to feel that only by lawsuits would we be able to change the course of how we as a patient group have been treated by our federal government. Being nice, patient and going along with whatever is handed to us has never worked. It is intolerable and dangerous that we be subject to this denial of research and treatment any longer, very much including the establishment of an accurate case definition.

So, your action is of great value to me and I hope it will signal a change in course for our patient group.

Thank you for your courage, clarity and initiative. Only power is going to impress these shameless, dishonest people for whom science, reason and ethics all seem so useless. If that is an ad hominem attack, I think it is richly deserved.
Click to expand...

Sing, I think you should visit Jeanette's blog and post the above to her comment section. She needs everyone's support. She's very sick and she (and her husband) are taking on the federal government. Very courageous! Make sure she gets your sentiment!
 
*GG*

*GG*

senior member
Messages
6,389
Location
Concord, NH
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.
cont'd

http://thoughtsaboutme.com/2014/01/...ed-against-hhs-and-nih-relating-to-iom-study/
 
RustyJ

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Ecoclimber said:
I believe it would be a good idea for those who blog or have web sites to post this information from all over the world. It might get picked up by a news media organization if your headline is catchy enough. I believe everyone now should take to social media, FB, tweeter, Reddit, Google Plus,Pinterest, Blogger etc and starting shouting from the rooftops about contents of the lawsuit of David vs. Goliath, patient community and advocates against the bureaucracy of HHS!!
Click to expand...

Yep, done so: http://www.mecfsportal.com/index.php
 
H

hikinglo

Messages
41
This is what we've needed since 1988. Jeannette's name will go down in the M.E. history books!

I hope those few who have chosen to cooperate with HHS & IOM find the courage to change their positions, and side with the experts who have worked with us for a generation when many of their peers abandoned and even ridiculed us, and the very govt bureaucracy that buried us in hidden recesses of society is back at it, trying to quash another uprising, repeating history. These experts know us better than anyone, and have the authority, right, scientific evidence AND consensus to tell US govt to "Follow our lead...".

Remember or learn what happened in 1988, 1994 and 2003 when government selected non-experts devised definitions to keep us from receiving disability, research funding and even minimal health care all these years. Too many have forgotten that the govt works for US. If you told your employee to stop doing something you did not hire them to do and they did not stop, and worse, they brushed you aside and tried to take over your business, you would immediately kick them to the curb.

Too many have forgotten we have power as taxpaying, voting constituents of govt agencies whose job it is to represent and protect us. We have POWER. To cooperate with this bullying is weakness. It does not support our experts. It does not help those of us with this disease - on the contrary.

The red flags of secrecy surrounding this whole "thing" since its surprise and rapid inception shout, "STOP". Our experts shout "STOP". There should be no input other than, "STOP, we did not ask for this. We do not recognize this endeavor as legitimate, and we demand you stop doing this in our name. Our experts have stated their consensus loud and clear. If this 'study' continues against our will, we will turn our backs to it. We will face and support our experts, provide input to our proven experts, no non-expert groups foisted on us behind our backs. We will bury whatever results unauthorized groups have been paid to come up with, the same way we've been buried by govt bureaucrats for three decades."

(Anyone notice there have been no press releases by HHS or IOM glorifying this supposedly 'wonderful opportunity' for ME and CFS patients?)

BTW, we've been calling for class action for decades too. (One of the late Tom Hennessy's regular requests.) Any takers are still welcome:)
 
Ember

Ember

Senior Member
Messages
2,115
Federal Lawsuit Filed Against HHS and NIH Over IOM “Study”

[ 25 votes] [ Post a Comment ]

By Jeannette Burmeister • www.ProHealth.com • January 9, 2014

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Reprinted with the kind permission of Jeannette Burmeister and Thoughts About ME
 
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