• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME Advocacy Action: Urgent - Ask Congress to Cancel IOM Contract and Adopt CCC!

Nielk

Senior Member
Messages
6,970
Patient advocates are advising us to keep fighting this IOM contract. We need to show support for our 35 experts who signed a letter against the contract. To understand why this is so important the advocates have written a letter clarifying misconceptions regarding the HHS/IOM contract. Please read this important Q&A here http://bit.ly/1hIz4ej

We need to continue pressing our case with congress to tell HHS to cancel the IOM contract and adopt the CCC. The alert can be found here http://bit.ly/GPzfcr

Even though the government is shut down, the messages sent through the web forms are still being logged and will be there when congressional staffers return.
 

Ember

Senior Member
Messages
2,115
Don't Let Petition Fatigue Set In:
Contact Congress to Stop the IOM Contract and Adopt CCC

By Mindy Kitei
Saturday, October 12, 2013
Patient advocates, including Mary Dimmock and Patricia Carter, sent this call to petition Congress to stop the IOM contract and adopt the Canadian Consensus Criteria. Patients no doubt are experiencing petition fatigue, but the signatures of 34 key ME researchers and clinicians on the petition to HHS Secretary Kathleen Sebelius to stop the IOM contract have been one of the most important advocacy moves of the past 30 years. Congress, unlike HHS and CDC, is much more likely to listen to the patients and these experts--and that's why advocates have drafted this petition to Congress.

Given the situation, despair is understandable, but despair won't change anything. This is usually the time that patients fold and let the government have its way--and patients get shafted yet again. This is usually the time when patients say maybe it will be different this time and try to work within the system, but so far that hasn't worked. This is usually the time when patients let the CFIDS Association, HHS, CDC and their minions say soothing things--but walk all over them. But this time can and should be different: This time patients have 34 experts supporting their cause, and that should make Congress take notice....
 

caledonia

Senior Member
I sent letters to my reps, but all this cutting and pasting is ridiculous. There is technology to make this easier - where you put in your name and address one time, and it looks up who your reps are. Then the letter is already pre-filled. Basically, you hit one button to send the letter to all your reps. It takes less than a minute. The current process took me 10 or 15 minutes.

I belong to a couple of groups who have this set up for their advocacy. The Center for Food Safety is one example. You sign up for their email list. They send out advocacy alerts it seems like at least once a week. You press one button, and boom, you're done.

And they are making a difference. Between the emails and working with a rep, they were able to get the Monsanto Protection Act repealed.

We need to get as organized as these folks are!!! I think this is something we can duplicate, even with our limited abiltiies.
 

Nielk

Senior Member
Messages
6,970
Why is this contract so dangerous? Look at the two parties involved and look at the contract.

HHS: Since day one of this illness, HHS has fought the reality of the illness. Their agenda? Make ME/CFS disappear. Dilute it out with 'mental disorders'.

IOM: Their only experience defining disease is with GWI. They have basically done what HHS has been dreaming to do to ME/CFS.

hence-

The contract: The contract was processed with deception, in secret with lies. It gives IOM the free hand to do exactly what they have done to GWI.

Please take the time to write to your congressional representatives.
 

JohnnyD

Senior Member
Messages
206
Where is the sense of urgency from Phoenix Rising?? Why isn't this topic permanently at the header of this forum --- instead we have --- "join or team of writers and editors!"??

Who would want to write about the IOM process of turning back the clock 25 years on ME/CFS!?
 

Nielk

Senior Member
Messages
6,970
Where is the sense of urgency from Phoenix Rising?? Why isn't this topic permanently at the header of this forum --- instead we have --- "join or team of writers and editors!"??

Who would want to write about the IOM process of turning back the clock 25 years on ME/CFS!?


I'm in middle of writing an article about that. Do you have one mind?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Where is the sense of urgency from Phoenix Rising?? Why isn't this topic permanently at the header of this forum --- instead we have --- "join or team of writers and editors!"??

Who would want to write about the IOM process of turning back the clock 25 years on ME/CFS!?

Why don't you (and/or others) submit an article? Instead of waiting for others to do something for you that meets your approval?

If you are asking for Phoenix Rising to take a position. Well that's not my call. But if you or anyone else wants us to publish another article on this subject you are so passionate about - I suggest you work together with others who share your stance and submit something.
 

JohnnyD

Senior Member
Messages
206
I think there are a number of articles already written that explain the urgency - articulate, with history and back ground links that explain exactly what the situation is --- in fact, group them all together and keep the best one at the head of the forum!
 

JohnnyD

Senior Member
Messages
206
I mean, something happened in August - Did Lipkin told Sebellius and Fauci something different than his public statement - his public statement is strong, especially concerning Lyme. What happened that created such a shift away from the existing experts and CCC, ICC? Why are they trying to bury CFS/ME again? I think it is best if articles come from patients -- I'm here trying to help my sister.
 

caledonia

Senior Member
I sent letters to my reps, but all this cutting and pasting is ridiculous. There is technology to make this easier - where you put in your name and address one time, and it looks up who your reps are. Then the letter is already pre-filled. Basically, you hit one button to send the letter to all your reps. It takes less than a minute. The current process took me 10 or 15 minutes.

I belong to a couple of groups who have this set up for their advocacy. The Center for Food Safety is one example. You sign up for their email list. They send out advocacy alerts it seems like at least once a week. You press one button, and boom, you're done.

And they are making a difference. Between the emails and working with a rep, they were able to get the Monsanto Protection Act repealed.

We need to get as organized as these folks are!!! I think this is something we can duplicate, even with our limited abiltiies.

I'm replying to myself, lol. I spent some hours today looking at and testing various Wordpress plugins, CRM software and so forth.

The type of system that the Center for Food Safety is using is probably something like Capwiz. It's pretty expensive, something like $2000 to set up and then $3000 per year.

ActionKit looks really cool, but is also expensive - it's $2200 per month if you have 100,000 people on your list. This is an offshoot of the MoveOn software used for presidential campaigns.

Another good looking option is Nationbuilder, which starts out at $19 per month, then would increase as you got more members. http://nationbuilder.com/pricing

I believe Capwiz and ActionKit could integrate with Wordpress (what Phoenix Rising is using).

Nationbuilder would be more appropriate if you were starting from scratch with a new website dedicated to just advocacy. I could see where something like this could pull in people from various orgs to work together. I believe it has a function whereby people could vote on issues and then you could figure out what the majority wanted. That way you could have a consensus about what the patients wanted, and hopefully not have various factions fighting with each other.

CiviCRM is free and could integrate with Wordpress or Drupal, but it's open source, which means you have to be a technical wizard to set it up and maintain it. The other ones I mentioned above are turnkey.

This is a big issue - if you want to email your representatives with one button click, over the past few years, they've mostly switched to webforms instead of email addresses. The software you pick has to know how to fill out the webforms. Only the more expensive softwares have this capability. For example, CivicCRM will not do this.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I mean, something happened in August - Did Lipkin told Sebellius and Fauci something different than his public statement - his public statement is strong, especially concerning Lyme. What happened that created such a shift away from the existing experts and CCC, ICC? Why are they trying to bury CFS/ME again? I think it is best if articles come from patients -- I'm here trying to help my sister.


Good question, hope it's not due to Obamacares?

GG
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I'm replying to myself, lol. I spent some hours today looking at and testing various Wordpress plugins, CRM software and so forth.

The type of system that the Center for Food Safety is using is probably something like Capwiz. It's pretty expensive, something like $2000 to set up and then $3000 per year.

ActionKit looks really cool, but is also expensive - it's $2200 per month if you have 100,000 people on your list. This is an offshoot of the MoveOn software used for presidential campaigns.

Another good looking option is Nationbuilder, which starts out at $19 per month, then would increase as you got more members. http://nationbuilder.com/pricing

I believe Capwiz and ActionKit could integrate with Wordpress (what Phoenix Rising is using).

Nationbuilder would be more appropriate if you were starting from scratch with a new website dedicated to just advocacy. I could see where something like this could pull in people from various orgs to work together. I believe it has a function whereby people could vote on issues and then you could figure out what the majority wanted. That way you could have a consensus about what the patients wanted, and hopefully not have various factions fighting with each other.

CiviCRM is free and could integrate with Wordpress or Drupal, but it's open source, which means you have to be a technical wizard to set it up and maintain it. The other ones I mentioned above are turnkey.

This is a big issue - if you want to email your representatives with one button click, over the past few years, they've mostly switched to webforms instead of email addresses. The software you pick has to know how to fill out the webforms. Only the more expensive softwares have this capability. For example, CivicCRM will not do this.

Well done for not only raising the issue but for taking it a step further and looking at solutions. Without that, things aren't likely to move forward. A lot of people on this forum raise ideas but expect someone else to make it happen. Do well done for standing behind your conviction and being the one to do the doing.
As you know, PR already uses WordPress but the cost will likely be an issue for those better options. Sometimes you can get it free if its for non-profit use so it might be worth asking.
 

caledonia

Senior Member
Well done for not only raising the issue but for taking it a step further and looking at solutions. Without that, things aren't likely to move forward. A lot of people on this forum raise ideas but expect someone else to make it happen. Do well done for standing behind your conviction and being the one to do the doing.
As you know, PR already uses WordPress but the cost will likely be an issue for those better options. Sometimes you can get it free if its for non-profit use so it might be worth asking.

I'm ready to put my money where my mouth is, to the extent that I'm able. I just started volunteering for PR with some content editing, and that may extend to other areas eventually.

I was hoping that some of the developer/programmer types on this forum would know about this stuff, but I guess not. My background is more in graphic design, but I've learned Drupal, Joomla and Wordpress and have built several websites on each platform, so I'm somewhat familiar with this stuff.

I don't know about free, but I did see where one of the softwares had a cheaper rate for non-profits.

We can always do some fundraising if we feel it's that important and necessary. I don't know what the budget is like around here, but I would think that Capwiz, for example, at $2000-3000 per year, would be attainable. That's 300 people giving $10, once a year.

Ironically, these type of softwares often have fundraising features built in.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
I'd pitch in that much. I think it's time for us to gather together and get more organized and act.
Otherwise we will always be represented by groups that do not truly represent us.
 

Nielk

Senior Member
Messages
6,970
There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.
 

Ember

Senior Member
Messages
2,115
Please write to your representatives in congress HERE.
On October 12, Wildaisy posted, “I don't know about everyone else, but I am not able to speak on the phone long enough to say the whole message above, so I will use an abbreviated message.” Today she added to her abbreviated message this two step (U.S. only) action:
If you are not happy about what HHS is trying to do to M.E. patients with the IOM contract, you can easily take action.

1. First, sign the petition:

https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/

2. Second, write to your congressional representatives (USA):
Get contact info for your two senators and your Congressman here:

http://www.congressmerge.com/onlinedb/index.htm

Then copy this sample letter into their email contact forms (or write your own or use one of the other sample letters found here: http://www.mecfsforums.com/index.php/topic,17973.0.html )

Sample:

Quote

Greetings:​
I am your constituent and I need your help. Please call or email Secretary Sebelius at Health and Human Services and ask her to cancel the contract with the Institute of Medicine (IOM) to redefine ME/CFS. This is the illness from which I have suffered for 27 years. This contract would be an enormous waste of taxpayer money and would serve no legitimate purpose, since the illness has already been defined by consensus of experts in the disease. You can see the Open Letter from these experts to Sec'y Sebelius here: http://www.mecfsforums.com/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013
In just a few days this petition has been signed by more than 1500 patients who suffer from Myalgic Encephalomyelitis, along with carers, families and friends, and the number of signatures is growing rapidly.​
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.​
Please ask Secretary Sebelius to reconsider her position on redefining ME/CFS. A group of experts have agreed that the Canadian Consensus Criteria should be used for both research and clinical purposes, and spending taxpayer money for the Institute of Medicine to create another definition is simply a waste of money. These experts have many years experience with the illness and they have a deep understanding of the illness, its history and needed treatment.​
If you can make this one phone call or write this one email, I would be grateful.​
(Your name)​
(Your email address)​
(Your postal address)​

That's it! You will have helped STOP the IOM contract!
 

Delia

Senior Member
Messages
139
Location
Iowa
I'm ready to put my money where my mouth is, to the extent that I'm able. I just started volunteering for PR with some content editing, and that may extend to other areas eventually.

I was hoping that some of the developer/programmer types on this forum would know about this stuff, but I guess not. My background is more in graphic design, but I've learned Drupal, Joomla and Wordpress and have built several websites on each platform, so I'm somewhat familiar with this stuff.

I don't know about free, but I did see where one of the softwares had a cheaper rate for non-profits.

We can always do some fundraising if we feel it's that important and necessary. I don't know what the budget is like around here, but I would think that Capwiz, for example, at $2000-3000 per year, would be attainable. That's 300 people giving $10, once a year.

Ironically, these type of softwares often have fundraising features built in.

I'm in. I'll do whatever you want.

I just got frustrated and started a Facebook page for now, just to get something going for the immediate now. :( and I bare,y know how to do Facebook.