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Sign petition to HHS stating CAA/SMCI does not represent "our voice".

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Im very grateful for this petition though as if I hadn't seen this.. I still would not have known who SolveME/CFS was (which has turned out to be a group I don't like at all due to things they've done over the years. They certainly are not my spokesgroup!!!!, before this I'd thought it was some new ME patient group put together).
 
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Sean

Senior Member
Messages
7,378
With today's technology, the vast patient population can be interacted with directly. We ask that you do so.
I agree that is a good point.

Though it has to be done carefully. Among other reasons, patients are not perfect sources of insight into their disease. We make our fair share of mistakes, as individuals, and as a group; we are no less subject to our own fads, foolishness, and groupthink than anybody else; and that must be factored in.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I agree that is a good point.

Though it has to be done carefully. Among other reasons, patients are not perfect sources of insight into their disease. We make our fair share of mistakes, as individuals, and as a group; we are no less subject to our own fads, foolishness, and groupthink than anybody else; and that must be factored in.
Which is why we have input as stakeholders, but are not the only people who have a say. Excluding us is bad, leaving it all to us would be bad too.
 

Kati

Patient in training
Messages
5,497
I do not like the language of the petition.

It's really sad.

What is much needed here is a united voice and patients getting together asking the government to fund research. There is no need to demolish Solve CFS in the meantime.
 
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Kati

Patient in training
Messages
5,497
I agree that is a good point.

Though it has to be done carefully. Among other reasons, patients are not perfect sources of insight into their disease. We make our fair share of mistakes, as individuals, and as a group; we are no less subject to our own fads, foolishness, and groupthink than anybody else; and that must be factored in.
Well said. @Sean, I would add that patients who are engaging here are the tip of the iceberg. There are many, many who have been diagnosed with depression, somatization or have not been diagnosed all.
 

Kati

Patient in training
Messages
5,497
There are many more who do not engage at all. "Advocacy? Why? Our docs and government will deal with it! I don't have the energy to cope with another issue. Please don't discuss negative things with me."

It is certainly a very hostile environment to engage in any kind of advocacy. Hostility not only from the governments, but hostility from other patients.
 

Ember

Senior Member
Messages
2,115
Since the unveiling of the IOM report, the community has had highly diverse opinions of the result. Some were vocal with their approval and welcomed the changes that were recommended. Some agreed with most of the report but felt that it would need some changes before it was something that they could endorse. Some rejected this as a flawed government-controlled redefinition and rebranding effort. This split in the community has caused a lot of contention and confusion.

I couldn't endorse the IOM report unless it were to remove ME-ICC patients from its diagnostic criteria.
 
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CBS

Senior Member
Messages
1,522
I couldn't endorse the IOM report unless it were to remove ME-ICC patients from its diagnostic criteria.

Could not agree more. I get that people feel strongly and that some feel threatened they will always be stuck with the CFS label but real change is never going to happen until we are funded and have a biomarker.
 
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CBS

Senior Member
Messages
1,522
I don't give a shit if a doctor refuses to see the truth and needs to cast me as depressed or anxious in order to deal with their own discomfort at being clueless/impotent. That same idiot is not going to change his mind because of a name change and "re-branding." What will get people like that to reconsider their prejudices is science, not a PR campaign.

The IOM missed the boat entirely by not asking for at least $100 million and insisting that a new name was needed but recognizing that it needed to be based on more that a few weeks discussion and a new set of Dx criteria that they are simply hoping won't harm all of us.. The IOM was given cover to go down this rabbit hole by the CAA/SCMI and they're continuing on the same ridiculous path.
 
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Gingergrrl

Senior Member
Messages
16,171
@CBS Thank you for explaining what some of those acronyms mean although I still have no idea who the people are behind the petition!

In any case, my position is not political and want to explain it. I will just do it here once and see what people think as maybe I am naive politically but this is my gut instinct.

Right now the top leaders and scientists at OMF are having high levels meetings with the govt to try to get funding for the severely ill patient study (which IMO is the best chance we have ever had to find the bio-marker.) We need govt funding to do this and we need it soon. We have a window of opportunity while this issue is fresh on their minds and we need to focus on getting funding for real, biomedical research such as this.

If the govt views patients as ungrateful and sending in negative petitions that we will only accept "ME" or "Ramsay's Disease" (or other names?) to me this is a negative distraction from the true issue which is funding this OMF study. We want them on our side and alienating people with these petitions seems the wrong way to go about it.

While I would personally be very happy to adopt the name ME or Ramsay's Disease here in the US, it does not seem that this is a reality. But it could be a reality that the govt helps to fund the Severely Ill Patient Study at OMF. Behind the scenes, they are fighting very hard for us and we need the govt on our side. It seems illogical to turn against the best chance we have of getting help.

Where am I going wrong here? Getting these studies funded will help ME/CFS patients world-wide and not just in the U.S. I mean no disrespect to anyone, I just want to see our limited energy go in the right direction toward something productive to help our entire community. I have no loyalty to any group or acronym except to us as patients and to the researchers who are working tirelessly to help us. Thank you for reading.
 

CBS

Senior Member
Messages
1,522
@CBS Thank you for explaining what some of those acronyms mean although I still have no idea who the people are behind the petition!

I would suggest that it is in your interest to learn a little bit about the political history of CFS and other diseases (AIDS, breast cancer, etc.). It's as good a prediction of the future as we have.

In any case, my position is not political and want to explain it. I will just do it here once and see what people think as maybe I am naive politically but this is my gut instinct.

Like it or not, ALL Government funding allocation CHOICES are political. And bureaucrats are better at covering their own asses than anyone with whom I have had the displeasure of working.

Right now the top leaders and scientists at OMF are having high levels meetings with the govt to try to get funding for the severely ill patient study (which IMO is the best chance we have ever had to find the bio-marker.) We need govt funding to do this and we need it soon. We have a window of opportunity while this issue is fresh on their minds and we need to focus on getting funding for real, biomedical research such as this.

Not sure I have any idea of how you see the IOM leading to a biomarker. See Jenny Spoltilla's blog (a former CAA/SCMI employee(?)) on the funding picture for this upcoming year (Occupy CFS - Expired Opportunities)

If the govt views patients as ungrateful ...

And this is where my brain exploded.
 
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Gingergrrl

Senior Member
Messages
16,171
I probably didn't explain it well and that is okay! It was my very best effort and I tried. Am really not feeling well today myself and no energy to debate, just wanted to offer my view and didn't mean to make your brain explode!
 

Iquitos

Senior Member
Messages
513
Location
Colorado
So much for the CAA's "laser focus on research." The CAA and the CDC, vigorously leading from behind and always eager to take the spotlight/credit to further their organizational ends (self-promotiom).
Yes, It's no accident that their "scientific advisor" is Suzanne Vernon who used to be the CDC's Bill Reeves' sidekick and has her name on many of his "scientific" "research" papers, such as those supporting the psychosocial "causation" such as child sexual abuse and women's gynecology. Some of those papers came out after she joined CAA. The CAA, no matter how they rename themselves, have never been in it for patients. Their officers have enriched themselves to an incredible amount and have never done anything useful to anyone but themselves.

Yes, they have always been running to get to the front of the parade so they can claim they are leading it. They certainly do not and have never been the voice of patients.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
Im very grateful for this petition though as if I hadn't seen this.. I still would not have known who SolveME/CFS was (which has turned out to be a group I don't like at all due to things they've done over the years. They certainly are not my spokesgroup!!!!, before this I'd thought it was some new ME patient group put together).
Yes, they periodically adopt another persona so that they can fool those who don't know the history.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
I am not a part of any group. I object to CAA claiming to be my "voice" when in fact it's a Trojan Horse.

There are already other petitions calling for more research funding. I've signed.

If you don't know the harm that CAA has caused us, and continues to cause us, that is really sad. Don't like this petition, just move on.
 
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