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

[elbosque]

S/he who pays the piper calls the tune. That not only goes for NGOs like the CAA or Pandora. That also goes for the IOM. Anyone who believes the IOM was truely undependent and unbiased of what the HHS expected is nieve. Government beaurocrats contract out their dirty work to 'expert consultants' and NGOs as means to create the illusion of independence. The consultants and NGOs know the game and know that the next contract depends on giving the beaurocrats what they want. This is why true independence from government and corporations is required to say and act in the interests of patients.

 

[CBS]

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).

 

[Liz Willow]

There is a long history of dissatisfaction with the CAA/SMCI. The recent announcement that SMCI will hold a Congressional briefing caught many off-guard. Given the organization's embracement of the IOM report, those of us who have problems with it are justifiably nervous that SCMI will use its status as a long-established organization and Federal and media connections to imply the briefing represents the wishes of most patients. That is a huge assumption. No one knows what the briefing will ask for, though it appears to be "more research". While that sounds good, research based on cohorts that meet SEID criteria will not help us anymore than research based on the Fukuda definition.

 

[Liz Willow]

By the way, this petition is a follow-up to an earlier one closed four years ago. It's worth reading the comments people left when they signed.

Discomfort with the CAA/SCMI is not new, and it doesn't appear the concerns expressed on this forum at the time nor in this petition have been addressed by the organization. https://www.change.org/p/petition-to-disassociate-from-cfids-association-of-america-as-our-advocacy-representative

 

[Marylib]

I was moved by the resignation letter that Mark Iverson wrote years ago when he stepped down from that organization.

 

[CBS]

I find the re-branding of the CAA as the SCMI and the re-branding of CFS by the IOM to be ironic. They are both weak and misdirected efforts to address a very serious problem.

Here's the comment I submitted with my signature:

The Chronic Fatigue Association of America/Solve CFS/ME Initiative has never represented me or my interests. This “advocacy” agency is, and always has been, focused on their self perpetuation and a seat the Federal table at my expense (In spite of their claim to have a “laser focus on research”).

Fifty ME/CFS experts opposed the creation of the IOM committee as illegitimate and ill-conceived. As patients, we do not need “re-branding,” and we surely do not need an unstudied, freshly minted, set of diagnostic criteria created unscientifically behind closed doors. The CAA/SCMI stood alone in their willingness to support the IOM and to risk my future for their gain.

In the past, the CAA sold out the patient population by advocating CBT and GET. This was done in the face of strong patient protest, a move that led the CAA to “re-brand” itself as the SCMI. The CAA/SCMI’s position allowed the current CDC’s physician tool kit for CFS to remain unchallenged by “my” so called “advocates”.

I see the current actions of the CAA/SCMI as well as the IOM as being more of the same smoke and mirrors without real substance, just using a different name.

I deserve an advocacy org that really does represent my needs and that is not the CAA/SCMI.

 

[CBS]

Here is Mark Iverson's Letter:

Formal Statement of Resignation from

The Board of Directors of

The CFIDS Association of America and

All Association Committees and Positions of Leadership


Marc M. Iverson, Founder

June 22, 2001


Fellow Directors of The CFIDS Association of America, I, Marc M. Iverson, hereby resign from the Board of Directors of The CFIDS Association of America, and all Association committees and positions of leadership, effective 8:00 a.m. EDT, June 22, 2001.


As the founder of The CFIDS Association of America, Chairman of the Board of Directors of the Association for 13 of its 14 years, a major donor and fundraiser for the Association, and the sole permanent member of the Association's Board of Directors, I have reached this decision with great difficulty and extensive contemplation, and only after lengthy discussions with the President and Chief Executive Officer (CEO) of the Association, K. Kimberly Kenney, for whom I continue to have professional respect and admiration.


There are five primary reasons for my resignation.


First, I am overwhelmed with family obligations and the struggle with my own health problems.


Second, I have a different vision for the Association, and different priorities for the allocation of Association resources, than the CEO. I favor aggressive/activist "PWC focused" strategies with the objective of providing the Association's constituency (persons with CFS/CFIDS and related disorders) with what it wants. In contrast, the CEO favors more conservative "mainstreaming" strategies intended to define and communicate CFS/CFIDS issues to the public (including the medical community, the media, and policy-makers) with the objective of making CFS/CFIDS a mainstream disorder.


Third, I hold a different position than the CEO with respect to certain critical Association policies and programs. For example:

1. I favor and the CEO opposes immediately adopting a very aggressive stance opposing the discriminatory and incredibly damaging name CFS/CFIDS (chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome) and I believe efforts to change public attitudes are virtually hopeless and wasted with the present name;
2. I favor and the CEO opposes directly providing a system that permits patients to exchange health care (physician) referrals;
3. I favor and the CEO opposes immediately allocating resources to collect and disseminate far more information on treatment;
4. I favor and the CEO opposes immediately revamping the Chronicle to make it more timely, accurate and informative;
5. I favor and the CEO opposes allocating/raising resources to build a state-of-the-art fully interactive web site that serves as a real time "clearing house for information" thereby enabling PWCs and interested parties to exchange information and ideas in a safe and civil environment;
6. I favor and the CEO opposes immediately developing specific, objectively measurable goals and benchmarks to measure the success or failure of all Association programs and the staff paid to implement them;
7. I favor and the CEO opposes placing a much greater emphasis on raising funds for, initiating, and reporting CFS/CFIDS research; and,
8. I favor and the CEO opposes gradually shifting resources away from programs not financially supported by Association donors, such as the Association's extensive lobbying efforts.

Fourth, I have been caught in a "moral dilemma" of defending major Association policies/actions with which I strongly disagree.


Fifth, I can not fulfill my responsibilities (as defined in the Association Bylaws and further outlined in the 2001 Association Operating Plan).


Fellow Directors, I believe I've made reasonable (if not extraordinary) efforts to state my case, but have been unable to persuade Ms. Kenney that the Association should drastically change. Ms. Kenney is the driving force behind the Association and, although major policies and plans must be approved by the Association's Board of Directors, Ms. Kenney (as CEO) and her professional staff are charged with the responsibilities of both developing and implementing the Association's policies and plans. Without Ms. Kenney's support, it is unrealistic to believe that the positions I advocate will be adopted by the Association's leadership or implemented. Accordingly, it is time for me to step aside.


I'm proud of what the Association has stood for and accomplished in the past. I wish you well individually and as an organization.


Marc Iverson

 

[elbosque]

Fourteen years later and only the facade changes.

 

[Undisclosed]

When I look at petitions, I look at who started them. For me, I will not sign a petition started by Patricia Carter because she defames and denigrates the members of Phoenix Rising on a consistent basis (we are just a 'fatigue forum'), researchers, research, doctors ... . I will not, and can not support her behaviour. Will I ever support somebody who has defamed members of Phoenix Rising and myself -- no I will not.

This petition is not worth fighting over, not worth the personal attacks. Let's not get into fights over this. She has an agenda and it is to bring down the CAA in any manner she can. I don't much like the CAA but there are bigger fish to fry and we can do this as a community.

I do support worthwhile petitions that are not based on personal biases.

 

[snowathlete]

Where do you see disrespect in this petition?

Petitions speak for the undersigned. If you don't agree with what the petition says, do not sign it. If you have questions about it, why not ask them? But you are stating that you have questions yet in the same breath decide that you won't sign it. This makes me think that you are not interested in the details.

There is a lot of history here in the U.S. regarding SMCI. They have taken a lot of actions that many in the community opposed. They used to be an advocacy organization but a couple of years ago changed their direction and they are exclusively a private research organization. Yet, on many occasions, they still act as if they are an advocacy org. that represents patients when it is convenient for them.

They have recently appeared on television programs purporting being the largest advocacy org. and promoting the IOM report, criteria and name.

Currently, they are organizing an event on Capitol Hill arranged in order to further promote the IOM.

Those of us who have signed this petition want to clarify that the SMCI does not represent "our voice". In what way is this "disrespectful".

We do not have the funds that SMCI has, having collected funds for RESEARCH purposes, to organize our own event. We therefore, dissociate ourselves from them.

It's already been highlighted by others and I referred to it. I re-read my post, and I think I was quite clear.

Don't sign it you say? The problem is that it creates a situation where people with other views feel they need to be heard now to ensure people don't take the petitions claims at face value. It's just unnecesarily decisive in its language. It's also totally avoidable, just by using a little bit of care.

I am aware of much of the history you're referring to. The funny thing is that I might well agree with you on the broad concept that SMCI does not represent all patients. I am generally in favour of that view no matter who the organization is, because all I think patients should be expected to do is lend their support on a case by case basis. But organizations often claim continued support, when that's at best a grey area. You might support one effort but not the next.

The thing here is that the petition is too broad, and so whereas I could perhaps agree with the first few paragraphs, by then making statements about the IOM definiton which I don't agree with (and which I dont even consider to be accurate) I can't sign it. The petition covers too many issues, so a person can agree with half of it but not the second half, and so they don't sign. Typically, effective petitions are focused and short and dont cover multiple issues as that restricts who signs up.

 

[Gingergrrl]

I admit I do not understand most of this thread or know the names of the different groups involved. I just do not grasp why time, energy and money is going into fighting for the name "ME" which has never been used or recognized in the United States and represents only negative stigma and mistreatment in Europe.

We have a chance to be rid of the horrible name "CFS" and we have a window of opportunity to advocate for federal funding for the researchers who are our true champions. We should forget the politics and all band together to get the funding for research. SEID is a temporary name and recognizes PEM and orthostatic intolerance/dysautonomia which CFS does not. This seems major to me and the energy going into these petitions could be used to advocate for funding with the name that the US Govt now recognizes instead of fighting for a name that they do not and never will.

 

[Nielk]

The U.S. government has as of yet not recognized or accepted anything about the IOM report. They have simply remained silent.

The IOM report is only a recommendation to HHS. We don't know yet what HHS will decide. Although it is pretty sure that they will adopt it, if has not happened yet.

 

[Nielk]

When I look at petitions, I look at who started them. For me, I will not sign a petition started by Patricia Carter because she defames and denigrates the members of Phoenix Rising on a consistent basis (we are just a 'fatigue forum'), researchers, research, doctors ... . I will not, and can not support her behaviour. Will I ever support somebody who has defamed members of Phoenix Rising and myself -- no I will not.

This petition is not worth fighting over, not worth the personal attacks. Let's not get into fights over this. She has an agenda and it is to bring down the CAA in any manner she can. I don't much like the CAA but there are bigger fish to fry and we can do this as a community.

I do support worthwhile petitions that are not based on personal biases.

You have a right to decide what petition you want to sign and which you don't.

I just want to clarify that even though Patricia Carter started this petition. It has been signed by many known advocates in our community.

 

[CBS]

I admit I do not understand most of this thread or know the names of the different groups involved. I just do not grasp why time, energy and money is going into fighting for the name "ME" which has never been used or recognized in the United States and represents only negative stigma and mistreatment in Europe.

We have a chance to be rid of the horrible name "CFS" and we have a window of opportunity to advocate for federal funding for the researchers who are our true champions. We should forget the politics and all band together to get the funding for research. SEID is a temporary name and recognizes PEM and orthostatic intolerance/dysautonomia which CFS does not. This seems major to me and the energy going into these petitions could be used to advocate for funding with the name that the US Govt now recognizes instead of fighting for a name that they do not and never will.

You may not know the names but I would suggest that many of them have had a direct effect on your present circumstances. The CAA/SCMI has provided cover for the CDC to do nothing for you for over 20 years. Mark Iverson was by far your best and last bet with regards to the CAA. Kim McCleary forced Mark out to remain in league with CDC. Suzanne Vernon, present research director of the CAA/SCMI is a former researcher with the CDC, co-authoring many of the papers that have cost us decades of research/treatment.

In my view, patients without a strong sense of this history (and some with) are selling out in exchange, or at the least settling, for crumbs (a controversial name change) and a wildcard (an untested BUT SIMPLE set of diagnostic criteria).

ETA: Regarding funding - IF changes are made, it will be because of Fluge and Mella (NOT CAA/SCMI) and the real fear at HHS that they about to be embarrassed on the international stage. Dr. Montoya told Beth Unger that he was disappointed that the IOM failed to specify the amount of money needed to deal with this disease ($100 Million).

 

[Gingergrrl]

What does CAA/SCMI mean?

 

[Tired of being sick]

Signed

 

[CBS]

What does CAA/SCMI mean?

CAA/SCMI stands for CFIDS Association of America/Solve CFS/ME Initiative. The CAA "re-branded" itself as the SCMI in March, 2011 when it supposedly refocused its efforts on research. The reason for the shift were a number of significant public blunders by their President, Kim McCleary (since replaced) such as ignoring the sickest 25% of patients - "CFS is a life sentence, not a death sentence," chiding patients for not using their "inside voices" when dealing with the CDC, recommending CBT and GET as effective treatments and senior salaries of $180K/year with what some would consider very poor Guidestar ratings, etc. In the last four years, some, but not much research has come out of CAA/SCMI projects. At the same time, their efforts seem to have drifted back to "advocacy."

 

[alex3619]

The crux of this letter is not about any organization. I think the important part is the last part. We have been excluded from decision making in issues that determine our lives - both quality of life and survival. This continues to happen, and happened when HHS decided to implement an IOM contract and the P2P.

So a letter based on the following I would sign, and it would achieve the goals and get a broader support:

With today's technology, the vast patient population can be interacted with directly. We ask that you do so.

 

[alex3619]

Although it is pretty sure that they will adopt it, if has not happened yet.

They did not adopt something like 7 or 8 GWI reports until the last one. Its not inevitable. In GWI it was probably a fishing exercise. Keep throwing the line in till you get a report you want. We cannot be sure that will not happen with ME, oops, SEID, oops, its still ME for now.

 

[taniaaust1]

They did not adopt something like 7 or 8 GWI reports until the last one. Its not inevitable. In GWI it was probably a fishing exercise. Keep throwing the line in till you get a report you want. We cannot be sure that will not happen with ME, oops, SEID, oops, its still ME for now.

It will still be ME after if they go ahead too as the whole world doesn't accept it, its for America. (this is why people should keep demanding something which has a worldwide consensus or International ME criteria).