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CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
asleep, I think a petition like this is a great idea, butI suspect this petition is way way too long, and lacks focus. All of the points are good, but I think that we should be aiming at a short sharp petition of a maximum of three paragraphs. All the additional material is supporting material for the petition, which could be placed on sites after or before the petition, so that people can read it and understand why the petition is so important. By including all these points in the petition itself you may put some people off signing it, as there are so many things that they have to agree with. If they are uncertain or disagree with any of the additional points they may not sign.
 
Ember

Ember

Senior Member
Messages
2,115
SIGN THIS PETITION

Created by Patricia C. United States of America
To be delivered to: Kathleen Sebelius, Secretary of Health and Human Services, United States of America
Posted October 7, 2013
We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts supporting the adoption of the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.

Why this is important

Millions of people worldwide suffer from Myalgic Encephalomyelitis (M.E.). For decades, sufferers have been left with no real biomedical research and no effective treatments. Now the HHS is attempting to prolong this time by contracting with the Institute of Medicine (IOM) to redefine the illness. This is unnecessary because experts in the illness, researchers and clinicians alike, have reached a consensus that the Canadian Consensus Criteria (CCC) should be used for both research and clinical purposes. They have sent an Open Letter to Secretary Sebelius expressing their support for the CCC. (See: http://www.mecfsforums.com/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013 ). This HHS contract with IOM would simply be a waste of precious resources.
Click to expand...

http://www.mecfsforums.com/index.php/topic,17919.0.html
 
R

readyforlife

Senior Member
Messages
137
OK I've written a letter....LIE. I copied and pasted from others who have written letters to come up with a short letter to send to other organizations to get their support to sign our petition.

I have a list of people that i'm going to send the letter to. I just need feed back from you all to see what you think of the letter and any suggestions on changes. I decided to go with the Petition that was posted here on PR because I don't have any other ideas.

So here's the letter.

To whom it may concern:

We are the sufferers, supporters, friends, and family of the many millions throughout America and many more throughout the world whose lives have been devastated by various “medically unexplained” diseases.

Our community of CFS/ME patients are under attack and need your support.

On August 27, the US Department of Health & Human Services (DHHS) announced their intent to award a sole-source contract with the Institute of Medicine to develop new clinical diagnostic criteria for "ME/CFS".

If the IOM contract isn’t stopped it could set us back another 20 years.

Millions of people worldwide suffer from CFS/ME. For decades, sufferers have been left with no real biomedical research and no effective treatments. Now the HHS is attempting to prolong this time by contracting with the Institute of Medicine (IOM) to redefine the illness.
　

Please help us by signing our petition.

https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/?copy
 
Ember

Ember

Senior Member
Messages
2,115
Stop the IOM; Team Up with Gulf War Veterans

By Mindy Kitei
Tuesday, October 8, 2013
Patient advocate Wildaisy has started a petition to stop the Institute of Medicine (IOM) contract to redefine ME. If the IOM contract goes forward, chances are good that ME will go the way of Gulf War Syndrome, which was pathetically redefined at the beginning of the year as chronic multisymptom illness (CMI). The recommended treatments included cognitive behavioral therapy, graded exercise and antidepressants--the same recommendations CDC gives ME patients now....

Link to petition.

Many Gulf War veterans have been enraged by the IOM's redefinition of their disease. If ME patients could team up with Gulf War veterans, perhaps their combined voices will be heard.
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alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I just posted this on Mindy's site, though it awaits moderation:

http://www.cfscentral.com/2013/10/stop-iom-team-up-with-gulf-war-veterans.html


Thank you Mindy and WildaisyFL. I and others have been discussing this issue of coalition groups for some time, but only recently have we realized the urgency - ever since the fiasco involving HHS and IOM went public. Something can be done with war veterans, who have already been targeted, but other groups may be next in line, including Lyme, fibromyalgia, and possibly even MS or Lupus. If we can create some way of coordinating this somewhere, so advocates can work with focus not randomly, this would be good. Ecoclimber, who is involved in ME research funding, has commented on this a lot on Phoenix Rising.
 
Nielk

Nielk

Senior Member
Messages
6,970
I think that many of you might think that how is this contract with IOM going to affect me? If it follows the course of GWI, it will find that ME/CFS fits under the same umbrella as GWI and should be renamed Chronic Multisymptom Illness too or something like it. They will explain that most likely it is the same or similar to PTSD and will advise for clinicians to treat it the same way. They will recommend CBT/GET and/or antidepressants.

Part of the contract calls for disseminating this information to clinicians all over the country. Every doctor in this country will have an official stamp of approval to treat us as psychiatric patients.

In addition, research funding going forwards will only be given to studies with that in mind.

This is already happening; it will only reinforce it and make it much worse.

Why it is that Ian Lipkin’s grant proposal for further studies has been denied? He basically told us at the CDC call that he does not have the funds to continue his research. He (with CDC’s Unger on the line) called for patient demonstration like the act-up of aids patients in the 80’s.


Are we willing to just sit by and let this go on?
 
R

readyforlife

Senior Member
Messages
137
I spent the morning sending out my letter to get signatures for the petition. It's the only thing I can think to do right now. I would like to next write a letter and send it to news agencies.
 
A

acer2000

Senior Member
Messages
818
We had a good article/post on the front page of PR regarding the letter send by all ME/CFS experts against the IOM contract. How about a follow up post highlighting the petition and talking about how the patient community is rallying behind the ME/CFS docs in support of their letter and the CCC?

Other media attention would be awesome as well. I was happy to see the cfscentral article. Does anyone know any media? This is a pretty interesting topic, even for someone who doesn't know about ME/CFS. An action by HHS which is universally opposed by all experts in the field it applies to and the patients... Sounds ridiculous to pretty much anyone.

https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/?copy
 
R

readyforlife

Senior Member
Messages
137
acer2000 said:
We had a good article/post on the front page of PR regarding the letter send by all ME/CFS experts against the IOM contract. How about a follow up post highlighting the petition and talking about how the patient community is rallying behind the ME/CFS docs in support of their letter and the CCC?

Other media attention would be awesome as well. I was happy to see the cfscentral article. Does anyone know any media? This is a pretty interesting topic, even for someone who doesn't know about ME/CFS. An action by HHS which is universally opposed by all experts in the field it applies to and the patients... Sounds ridiculous to pretty much anyone.

[URL='https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/?copy[/quote']https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/?copy[/URL][/quote]

Where on the front page do you see this post regarding the letter? All I see on the front page is (In brief autoimmunity and ME)
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Ecoclimber

Ecoclimber

Senior Member
Messages
1,011
There are indications that HSS and CAA are moving very quickly before any significant opposition can be effectively mounted against them. There is indication that they are selecting members for the IOM through Pandora.http://www.mecfsforums.com/index.php/topic,17936.0.html.

Patients need to post on Pandora Facebook asking if this is correct and stating your opposition to the IOM based on the outcome of VA IOM categorizing GWI as CMI as a psycho-somatic disorder offering only psychiatric modalities as treatment options.

This means that if ME/CFS is labeled CMI it will be disseminated to medical clinicians across the country.

1.Contact Pandora and protest that the CAA and IOM do not represent your viewpoints or the viewpoints of ME/CFS researchers.
I could not contact Pandora's Facebook https://www.facebook.com/PANDORAORG
Call them and voice your opposition http://www.pandoraorg.net/Contact.html

2. It appears this push for IOM participation has received approval within the White House.
Contact or email the White House state the following http://www.whitehouse.gov/contact/write-or-call#call
A. The CAA represents a small minority of patients. They are only one patient advocacy group. They do not represent your viewpoint nor the viewpoints of the majority of ME/CFS patients nor the viewpoints of ME/CFS researchers and clinicians.
B.. That you are opposed to the HSS ME/CFS IOM contract and want it rescinded based on cost and the fact that criteria has been already adopted by researchers and clinicians
C. If you are sending an email, link to the sites where the petitions opposing IOM contract are located.
https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/
http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

3. Alert the ME/CFS researchers/clinicians concerning this latest push by HSS and CAA on nominating members to IOM board.
 
Ecoclimber

Ecoclimber

Senior Member
Messages
1,011
I believe that one of the people who can help us now is Bob Miller who was given assurances by President Obama to raise the level of ME/CFS within HHS. He has contacts within the White House and also contacts within the media to make them aware of our plight. Does anyone have direct contact with Bob Miller? This is his twitter account. https://twitter.com/bobmiller42

He needs to take this to the media.
 
R

readyforlife

Senior Member
Messages
137
Ecoclimber said:
There are indications that HSS and CAA are moving very quickly before any significant opposition can be effectively mounted against them. There is indication that they are selecting members for the IOM through Pandora.http://www.mecfsforums.com/index.php/topic,17936.0.html.

Patients need to post on Pandora Facebook asking if this is correct and stating your opposition to the IOM based on the outcome of VA IOM categorizing GWI as CMI as a psycho-somatic disorder offering only psychiatric modalities as treatment options.

This means that if ME/CFS is labeled CMI it will be disseminated to medical clinicians across the country.

1.Contact Pandora and protest that the CAA and IOM do not represent your viewpoints or the viewpoints of ME/CFS researchers.
I could not contact Pandora's Facebook https://www.facebook.com/PANDORAORG
Call them and voice your opposition http://www.pandoraorg.net/Contact.html

2. It appears this push for IOM participation has received approval within the White House.
Contact or email the White House state the following http://www.whitehouse.gov/contact/write-or-call#call
A. The CAA represents a small minority of patients. They are only one patient advocacy group. They do not represent your viewpoint nor the viewpoints of the majority of ME/CFS patients nor the viewpoints of ME/CFS researchers and clinicians.
B.. That you are opposed to the HSS ME/CFS IOM contract and want it rescinded based on cost and the fact that criteria has been already adopted by researchers and clinicians
C. If you are sending an email, link to the sites where the petitions opposing IOM contract are located.
https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/
http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

3. Alert the ME/CFS researchers/clinicians concerning this latest push by HSS and CAA on nominating members to IOM board.
Click to expand...

I just posted on PANDORA'S facebook page asking if they are recruiting for the IOM contract. I also emailed them on their website page. I will work on the rest of your suggestions above.

I wasn't aware that PANDORA also with the CAA endorsed the IOM contract.
 
R

readyforlife

Senior Member
Messages
137
I just read the long letter on PANDORAS position statement. The way I read it they sound like they are against the IOM contract. Am I missing something? If they are against the IOM why would they be recruiting for IOM?
 
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