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66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of Their Experts

slayadragon

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>Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the adoption of the Canadian Consensus Criteria (CCC) as the definition of the disease as well as for the abandoning of the efforts to involve organizations such as the Institute of Medicine (IOM) in any case-definition effort.

Please read the blog (both have the exact same content) for information on signing the update letter (to be sent out soon) and on how you can help out now.

Thoughts About ME blog: http://thoughtsaboutme.com/2013/10/...cretary-sebelius-in-support-of-their-experts/

Paradigm Change blog: http://paradigmchange.me/wp/?p=249

To go directly to the letter, click the following link:

https://www.dropbox.com/s/pz18naeqerpy3g2/Signatures.pdf
 
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justinreilly

Senior Member
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2,498
Location
NYC (& RI)
From thoughtsaboutme.com

http://thoughtsaboutme.com/2013/10/...cretary-sebelius-in-support-of-their-experts/

Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the adoption of the Canadian Consensus Criteria (CCC) as the definition of the disease as well as for the abandoning of the efforts to involve organizations such as the Institute of Medicine (IOM) in any case-definition effort.

The letter can be found here.

https://www.dropbox.com/s/pz18naeqerpy3g2/Signatures.pdf

(Note: If you get a black screen when you go to the link, just press “Download” and you will be able to read the letter.)

The letter is being cc’d to a number of other government officials (listed at the end of the letter) and to the 50 experts who had written to Sebelius.

Many thanks to all the advocates who signed the letter! This was a Herculean joint effort.

It is our goal over the next week or so to use Twitter to tweet Sebelius and some of the cc’d government officials as many times as possible, from as many people as possible, in order to draw attention to the letter.

Please join in and help out (and get all your friends to help out too!).

Here are Tweets to eight influential government officials copied on the letter to paste and send. Please repeat often!

@Sebelius #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@SenatorHarkin #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@JerryMoran #MECFS Patient advocates stand united behind 50 MECFS experts & against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@theIOM #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@BarackObama #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@HHS_DrKoh #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@DrFriedenCDC #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

@NIHDirector #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5

Also, just as the experts updated their letter with more signatures, we will be sending an updated letter with more advocate signatures as well. This initial letter was put together over the course of just a few days, and so many people who have been terrific advocates for the disease were unfortunately and unintentionally left out. We sincerely apologize for that, but we had to move quickly for maximum impact.

If you have been an advocate for the disease, or if you would like to be, please send your signature for the update.

The format is:

Name (First and Last) Degree, School Degree, School Previous Job (year or age disabled) Advocacy Work (or just “Patient Advocate”) Internet Link ? Email Address?

Please send your signatures to the following address:

advocates2sebelius@gmail.com

The signatures will be added to the same letter linked above and sent to the same government officials as well as to the 50 experts.

Thanks much for participating in this community effort!

And a special thanks to Mary Dimmock for helping to reach out to some of the advocates for their signatures.

Lisa Petrison

Jeannette Burmeister
[\quote]
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Good letter. Just to reiterate information posted above, if anyone wants to add their name to the letter, you can do so as follows:
If you have been an advocate for the disease, or if you would like to be, please send your signature for the update.

The format is:

Name (First and Last) Degree, School Degree, School Previous Job (year or age disabled) Advocacy Work (or just “Patient Advocate”) Internet Link ? Email Address?

Please send your signatures to the following address:

advocates2sebelius@gmail.com
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Alright everyone, start tweeting! I've been.

I'd really like to see the signatures of Prof. Judith Richman and Dr. Deckoff-Jones, listed here as patient advocates, added to the list of 50 ME Experts who have signed the letter. No one seems to know who organized that letter. If anyone does, please let me know.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I just sent
my email to sign as well,

but the formatting changed ... its a hodgepodge, it didn't look like that on my screen.

Right, it's an email sent to advocates2sebelius@gmail.com

With this info:

Name (First and Last) Degree (Repeated?, see next words...), School Degree (does this mean Major and Minor?), School (Graduated college from?) Previous Job (year or age disabled) Advocacy Work (or just “Patient Advocate”) Internet Link ? Email Address?

GG

PS I probably should have asked for clarification before sending the email!
 

Ember

Senior Member
Messages
2,115
This letter troubles me for a couple of reasons. First, it defines advocate to include almost everyone: “If you have been an advocate for the disease, or if you would like to be, please send your signature for the update.” And second, it could provide an opportunity to grandstand anyone's change of view. I wouldn't want to see an advocates' letter distract from our experts' stand.

We currently have a petition that's 2,175 strong.
 
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Delia

Senior Member
Messages
139
Location
Iowa
This letter troubles me for a couple of reasons. First, it defines advocate to include almost everyone: “If you have been an advocate for the disease, or if you would like to be, please send your signature for the update.” And second, it could provide an opportunity to grandstand anyone's change of view. I wouldn't want to see an advocates' letter to distract from our experts' stand.

We currently have a petition that's 2,175 strong.
The advantage of the letter as I see it, that can not be gleaned from petitions is the exact information of who we are:

  • The lazies and crazies that the CDC has tarred us with can be easily seen to be false in the resumes of the signers
  • The awful waste of talent and abilities
  • The ongoing length of disability and illness
Part of this is becoming seen! Actually seen and real. So far we've been defined by everyone e,se. We've been in the shadows, sick and largely they've been successful in keeping us hidden and discredited

The letter can't dilute other actions. Multiple actions are needed. Petitions, letters a multi-pronged campaign wins the day :)
 

Ember

Senior Member
Messages
2,115
The letter can't dilute other actions. Multiple actions are needed. Petitions, letters a multi-pronged campaign wins the day :)
I notice that advocates who signed the letter have also counselled a “middle road.” Dr. Bateman's example notwithstanding, I hope that this letter only strengthens the multi-pronged campaign.
 

Delia

Senior Member
Messages
139
Location
Iowa
Just two that I know of Cort Johnson and Bob Miller.

The reality is we must stand behind the experts who say NO to the iOM. They didn't say work something out with the IOM. And they did not say let us work with the IOM.

And not stand behind Cort, Bob (sorry Bob, I like you!)and anyone else who tries to straddle the fence. It's an electric fence and you have to come down on one side or the other fast. But really, they are on the other side now. They take away the power of the experts letter, and the power of PWMEs who are standing tall.

So when I say multiple actions I DO not mean multiple positions. No fence straddling.

It is very rare to have a political issue be clear cut, and not need to hold your nose and try to be at the table.

This is that very rare time.

The only power is to not give any legitimacy to the IOM body as the organization to define the illness.

By playing both sides, advocates give power to those who have too much and use it consistently against us, to our peril.

By standing against the IOM as your only position you take power away from them and give power to yourself and the rest of us.

It really is a stay in your seat at the front if the bus time. Do not budge. Do not let anyone, anyone convince you to give it up in hopes for some better negotiation later. The power will be gone once you leave your seat voluntarily.

People do know there were a few Rosas before Rosa Parks, don't they? They didn't stay the course. :( Rosa did.

The course is hard.

Edit: previous attempts were made to sit up front and stay. People got scared, listened to promises, etc gave up and left their seats. Finally Rosa came. You know she was trained? She was prepared. This was not spontaneous in the way we think of spontaneous. We are preparing ourselves, training ourselves now. We must not let fear or seemingly convincing arguments for straying from the experts request to Sibellius get us out of the seat.


:(
 
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Ember

Senior Member
Messages
2,115
The reality is we must stand behind the experts who say NO to the iOM. They didn't say work something out with the IOM. And they did not say let us work with the IOM.

And not stand behind Cort, Bob (sorry Bob, I like you!)and anyone else who tries to straddle the fence. It's an electric fence and you have to come down on one side or the other fast. But really, they are on the other side now. They take away the power of the experts letter, and the power of PWMEs who are standing tall.
By your analysis, Delia, defection began before this advocates' letter was sent. Hence my concern that this letter not be positioned to jeopardize the multi-pronged campaign.
 

Delia

Senior Member
Messages
139
Location
Iowa
I
By your analysis, Delia, defection began before this advocates' letter was sent. Hence my concern that this letter not be positioned to jeopardize the multi-pronged campaign.
have been thinking about this myself.

Often in advocacy there are important people you need on your side.

Sometimes it's wisest to let them go.

I have been trying all day to try and decide whether to request the letter only include signers who are not also working on trying to work with the IOM contract. Make the fence straddles decide and declare which side they are on,
 

leela

Senior Member
Messages
3,290
I would think that signing a letter implies you are in agreement with the contents stated therein.
 

Ember

Senior Member
Messages
2,115
I would think that signing a letter implies you are in agreement with the contents stated therein.
Apparently, signing the advocates' letter is consistent with this statement:
Ideally, the whole process should be begun again. According to people who know better than me, that’s not going to happen – the contract was too quickly signed – but if it isn’t repealed, the DHHS has the option to redo the contract. ME/CFS experts in collaboration with DHHS officials and IOM representatives should get together and work out a contract that’s is responsive to both the ME/CFS community’s needs to have substantial ME/CFS expert input, and to the DHHS’s desire to have outside input....

Dr. Bateman is right; there’s a real opportunity here; let’s not put aside the possibility that this could end up being a real win. The flip side of all this controversy is getting a good, widely disseminated and publicized definition for the first time.
And with this one:
Having other expert eyes involved from other areas of research is not a bad thing. Now as people read this, this does not need to be an All or Nothing deal. Getting IOM involved could bring money, we have been asking for that. We want a real definition, we have been asking for that, We want clinician education, we have been asking for that. Well, we have the support of many experts, but not all, why?
These statements don't seem to support the stance that Llewellyn King describes:
This has so enraged the top tier of 35 doctors and researchers in the field that they — risking good relations and future research funding — have written to HHS Secretary Kathleen Sibelius, imploring her to halt this folly. The Institute of Medicine doesn’t have expertise in this field, according to the CFS doctors.
 
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