Discussion in 'Action Alerts and Advocacy' started by Nielk, Feb 14, 2011.
It's better than Chronic Fatigue Syndrome.
It's not just better, it is MUCH better.
Back to the topic of the thread....
I'm happy to support anyone who does anything to contribute to our battle with the CDC.
Though I signed the PANDORA letter as a matter of support, I'm afraid people who write long letters think that our problem with the CDC is a matter of information. It is not; it is a war of political will. And in a war, we attack, not discuss. I don't understand what we could discuss with Unger; she has stated her positions clearly. We can't ask her to retract her publications or positions, so the only thing we want from her is to make her so uncomfortable that she will remove herself from the CFS program, as the letter writing campaign from both the doctors and the patients demanded. The issues have already been discussed.
So I am actively supporting the protest at the CDC. That post is here: http://forums.aboutmecfs.org/showthread.php?10032-Demonstration-at-the-CDC
If we want advocacy with a consequence, the protest would make the people at CDC uncomfortable and embarrassed - that's our goal. The consequence of a discussion with them would lead them to think they are "restoring trust" and make them more comfortable.
I hope PANDORA thinks about making - yes - demands rather than discussions. The patients don't even belong in the loop at all; we demand the CDC do their job and leave us out of it.
I want to make demands and cause change, not make friends. The time for talking is lonnnng past due.
Of course we can ask her to retract publications and positions. If she says no, then we can say, "Then there's no trust to be had. End of story. We would like your letter of resignation. Otherwise, we will see you on the Congress floor standing next to Bill Reeves."
Well, I was trying to be respectful (it never works). You are absolutely right, WillowJ. End of story.
The only way the CDC should hope to regain our trust is throu MAJOR CHANGE.
What would a name change be without also changing the defination to make sure the right patients are being studied. We are talking about things completely necessary for our illness to be taken seriously.
We wouldnt want a rename eg if they agreed to change CFS to something like Ramsey's disease, which included a CDC defination for not much more then fatigue.
Beware of agreements which are done just to pacify us rather then due to really wanting things to change.
The fact they have agreed to discussions, dont mean at all they've really changed their views... only the proper changes willingly done can show us that.
That's what caught my eye, too, taniaaust1. We would be fools to agree to discuss what is killing us.
When she agrees to talk with us, she thinks she will be able to explain her position and reason with us, or at least cool the retoric. We want none of it! We have demands and we don't want to give the impression that we are willing to negotiate. And if she gets wind of this, what do you bet she cancels the meeting?
We can smile when we say that (ask them to retract studies and positions). Act like we believe she wants to do this, in all sincerity. It's possible. Anything is possible.
She did say she would discuss this, and she could only mean one of two things by that. One, she really does intend to make substantial changes and has some upper-level boss besides the usual one backing her, and just in case, we should start off by treating her offer with absolute sincerity and cordiality.
Or two, she's trying to appease us without offering any substantial change in message or meaning, which I expect our representatives to see right through, in which case we can change tacticts and become very firm and blunt (though not rude or mean). No, the kind of change we have seen before ("a real and serious, albeit psychosomatic and stress-linked" ailment) is not going to cut it. Not in the least.
We will not be appeased with bedtime stories and half-measures. We will be taken seriously, all of our demands and all of our needs. This is a human rights issue, for crying out loud!
yes to all of that. definition, the proof is in the pudding, all of it.
And the restoration of the M.E. name and CCC definition is free and can be done immediately. No budget problem.
But I can't believe that she, or the boss who put her there in spite of a barrage of letters from doctors and patients, have any intention of changing their colors. Her testimony at the October CFSAC was astounding, as she sat there saying bluntly that she stood by the psychobabble and the various definitions. Lenny asked her again and she repeated it. So her purpose in this meeting has got to be to defend rather than to suddenly change the very basis of their program. Even her comment that she would construct a committee to consider a new definition fell flat, since she was speaking to members of the international consensus committee who had already re-written the definition.
I went back and watched her October testimony again - and I recommend it to everyone planning advocacy strategy. I don't think there is any way this lady intends to "discuss" any significant aspect of their program. It appeared to me that she might not have even been aware that everyone at the CFSAC meeting disagreed with her, and she seemed unashamed of her stance. If PANDORA does their job, this could be a very short meeting. And let's not talk about "restoring trust".
I wasn't there, was deeply disappointed with the report from that meeting. Psychosomatic is a shockingly ignorant declaration.
Unaware that everyone disagreed with her, incredible. That means the "firm and very BLUNT" part needs to be done as soon as it is clear that there is no change since CFSAC.
PANDORA and other representatives, if it turns out that there is not a wide array of substantial changes like
*definition (something requiring PEM, even Fukuda + PEM) plus a suitable name and research cohorts from experienced trusted physicians,
*ICD-10-CM revision with the listing under vague symptoms stricken and ME/CFS listed under neurological diseases,
*bi-directional dialog with the CDC acting on input from trusted biomedical researchers and the community,
*and biomedical instead of psych research,
we are counting on you to say: "No trust is available under these circumstances. End of story." And to get up and leave.
If she insists on negotiation.. (which is likely).. I was thinking that one way to negotiate would be allow them to keep their name and defination.. but at the same time add an acceptable new name and defination to us (so then two very different patient groups, yeah there would be over lap symptoms but it would be like how FM and CFS are now, viewed as different illnesses). This split could be made public so hence accepted eg put it on their website etc etc, how to diagnose it, have a public education compain of the new definition and name etc eg CC CFS but under new name.
Those then with the CC CFS would then be able to move to the other group and be separated from the CDC definition more so psych defination, the ones who may possible be helped/cured by the psychs and exercise. (its a win win situation for both groups. the CDC and the CFS/ME community so may be far more hope of things being sorted out)
Has pandora sorted out what a suitable new name would be? Would it help to actually have one to put forth which most of community agrees on (i myself like someones suggestion of Ramsey's disease and cant see anyone having a big issue with it.. it recognises the serious illness before CDC messed with things and no matter what is found in the illness, it wouldnt cause a reason to need to change it yet again whether XMRV turned out to be the cause or something else).
Splitting up ME and CFS would not be a concession to us, as this is already done. ICD-10 already has a listing for ME, and this is retained in the US's Clinical Modifications for the first time since 1989 or sometime therabouts.
Leaving Reeves disease intact would also be a disaster. All these people with various diseases would be left with no suitable treatments (even though various treatments exist and some of these conditions are, in fact, curable), and with the same persecution which we now suffer under. Regardless of the fact that some of us might escape, our doctors are not trainded to diagnose ME and many of us, and many others, would be left with the same human rights abuse we now have.
the issue is that CDC has never accepted Ramseys ME hence why no one gets diagnosed with it. They pay lip service to it but nothing more, they dont even have the diagnostic criteria for it on their website, i believe they wanted it to just go away from some reason (out of sight/site out of mind).. so how are doctors meant to know about that illness and diagnose it?
nods yeah i agree it would leave a group stuck where we are now, but i think there is always going to be a stuck group and there is probably other rare illnesses in this group which arent even known yet. Unfortuanately those with or without a diagnoses of CFS, those who cant be found the reason why they are sick will be labeled with having psych issues, faking or whatever. No matter what happens, this group no matter what is done, will have a hard time... I dont really know as a community what can be done about this.
(with the change in defination.. there will be people left out).
nods i can understand how we all so want Reeves stuff all gone. Im just struggling to see how we can move forward in any way at all with the CDC, I cant imagine them completely turning face as much as i really hope they will do it. (I cant see them leaving any group of people, without some kind of label).
Is there a date set yet? Who can participate other than PANDORA plus the signatories? Other orgs? Independent advocates? At least a limited number that we could vote on? Also like to see it webcast.
Thank you for the comments. I read over them.
Some points, PANDORA is invited as a guest and other patient organization reps (those who signed the letter) are invited to a phone conference. However, the agreement was to use the nine action points as topics to discuss. In order to make sure your voice is heard, PANDORA set up a survey where patients can tell what is most important to them. 255 have answered and the results are interesting. Certainly, this message from the patients will be carried to Unger.
If you have not taken it, here is the survey link: http://survey.constantcontact.com/survey/a07e3f2r0fagk8q0b3y/start
This is going to require some smarts and understanding of what they want and what patients want and try to find ways to meet both goals. They want something from us, trust. We want something from them, change. So, understanding the limitations and goals of each party, and the amount of power each party has, will make for more progress. In other words, if patients go in and demand all nine points be changed in next month, or else. Or else what? Yet, they do want something from us. So that must be used effectively, looking for opportunities to leverage that to the patient advantage. And there are other things they may want from us also, that can be used.
And, no date is set yet.
And when I speak of political realities of today, I am speaking of Congress wanting to do away with federal funding of almost everything. How to get what we want when there are these budget pressures must also be part of the consideration. There are options.
Thank you Tina for your tireless fight for all of us. The fact that patient groups will be able to have a reasoned discussed with the CDC is HUGE and I applaud all efforts to make this as productive as possible. It's a tough line to walk, we need change now but we have to be able to understand their position as well if we are to make real progress together. I am also deeply concerned that there will be detrimental budget cuts to our funding.
The nine points that have been laid out by PANDORA is a very good starting point, it allows for on-going discussions in which any and all other issues could be addressed. I am looking to this first meeting as purely a jumping off point, laying down the ground rules, etc. If we could gain true collaboration and mutual trust with the CDC this year, that would be monumental in and of itself.
We have to take baby steps before we can go in and demand the world. I am anxiously awaiting the meeting, and hope for understanding and progress.
Right, what I meant to say was that to get trust, they have to believably and demonstrably commit and follow through with important changes. If it's at all in your power to make them know this (they seem to be resistant to information, although this could possibly signal a change, we aren't assuming anything), they must be brought to this realization. They cannot get trust merely by talking to us. They must change, and change radically, or else there's no trust to be gotten. And I think this is what you're saying, too. I'm not implying that you don't "get" this, just saying the obvious.
They should start with definition/name/cohort, adopting a biomedical view, and regular dialog with researchers and community. In this dialog, CDC most adopt the role of a learner (not their traditional role as teacher). Sorry for their government ego, but that's the honest truth. CDC knows next to nothing about this Disease or the people who live with it.
And, I know this isn't officially listed on the list of 9, but it's closely related to definition and name: the ICD-10-CM. CDC is responsible for this and CDC must change it.
We don't want them getting any funding for research if it continues on current course, and we don't want them doing any physician education if they don't first make changes. We don't want them treating patients for stress-related fatigue or using a primary treatment strategy of CBT/GET and antidepressants. We would be better off without CDC involvement in any of those things if they don't first make believable radical changes.
yes, thank you!
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