A Question for CAA

[Andrew]

I have a question for the CAA. You say you are no longer in the patient advocacy business, and are strictly a scientific research organization. In light of this, I want to know if you are willing to refrain from involving yourself in patient advocacy issues. For example, if you are asked to comment on a policy issue that affects patients, are you willing to tell them that you don't speak for patients rights or any political, social, or legal issues relating to patients, and because of his you won't comment? And are you willing to refuse invitations to any conference or meeting that deals specifically with these types of issues?

I ask for a specific reason. I was thinking of contacting congress people about a name change, but past history tells me that they will probably double check with you (because you are so visible) and you will tell them not to change the name. And then all my efforts will be pointless.

If you really are refraining from involving yourself in the political and social issues, can I trust you to keep your word? Will you stay out of our way when we try to make what we see as positive changes for patients?

 

[kurt]

I think contacting the US congress is a good idea, and ask them to put pressure on the NIH/CDC to come up with a more medically accurate name and also take them to task for their negligence in their handling of CFS. Congress should demand an overhaul of the NIH/CDC leadership if they do not immediately rectify the situation, for crying out loud, they have ignored an epidemic larger than AIDS for over 20 years now!!!

But I don't think you need to worry about the CAA in that, we need a congressional investigation, they should be able to survey the entire ME/CFS advocacy and research community. CAA would have no role in a congressional investigation, other than maybe answering a few questions, which they have the right to do.

To start a congressional investigation you only need to persuade a single congressperson of the validity of your cause. But I think it is important to pick a congressperson who can be a powerful and persuasive advocate, one capable of building the congressional support needed for a serious investigation that can lead to change. I think that would also have to be a congressperson who cares about equity in social spending on medical research.

We are at the start of a Presidential election cycle in the US, maybe there is also a presidential candidate who would become interested in CFS as a neglected social issue. Probably they would love to talk about something other than the economy.

 

[Andrew]

CAA would have no role in a congressional investigation, other than maybe answering a few questions, which they have the right to do.

Not if they represent themselves as speaking for patients, or in any way imply that they are the voice of patients. They have given us a clear message that they are out of the patient issues business, and I want to know if they plan to behave that way. Otherwise I have no choice but to see this as a move to deflect criticism.

 

[kurt]

Not if they represent themselves as speaking for patients, or in any way imply that they are the voice of patients. They have given us a clear message that they are out of the patient issues business, and I want to know if they plan to behave that way. Otherwise I have no choice but to see this as a move to deflect criticism.

Then it seems you are attempting to place boundaries on CAA, rather than work to solve some political problems we have. In my opinion little is to be gained by criticizing CAA, this just continues the long history of CFS patients battling each other and battling various CFS organizations and research groups. They said their new focus is only on research and I think they deserve a chance to prove this themselves.

However, I think we have a lot to gain by drawing congressional attention to the NIH/CDC mis-handling of CFS. I like that part of your post. Maybe we need a new patient-centered organization to speak for patients, that would require some way of patients voting or entering their views, then a method of collecting that and presenting it to elected officials. Sounds like a thankless task though, and how do you deal with patients who disagree over what view of CFS to present?

 

[insearchof]

Then it seems you are attempting to place boundaries on CAA,

I would say that any boundaries place on CAA were self imposed when they announced they were no longer an advocacy operation.

Andrew has a valid point.

I guess all you can do Andrew, is if CAA make public statements on areas that are outside their domain, is to publicly point this out each time they do so and make it clear to your political representatives right off the bat, what the CAA represents and what it does not. Handled this way, it is not an obstacle.

 

[Hope123]

However, I think we have a lot to gain by drawing congressional attention to the NIH/CDC mis-handling of CFS. I like that part of your post. Maybe we need a new patient-centered organization to speak for patients, that would require some way of patients voting or entering their views, then a method of collecting that and presenting it to elected officials. Sounds like a thankless task though, and how do you deal with patients who disagree over what view of CFS to present?

You're right -- it's a tough task but if people look around, they will see many groups trying to do this, including the Coalition4ME, which PR is part of and consists of several state groups, and PANDORA and others I am not aware of yet. I really hope that that individuals and different groups will consider joining the Coalition4ME/ other existing groups or supporting their activities. You don't need to agree with 100% of a groups' views but if you agree with the overall direction, that is what is important.

IMO, we don't need MORE new small groups, we need to work coordinate among existing groups and use whatever resources are out there already. I hate re-inventing the wheel.

 

[*GG*]

I would say that any boundaries place on CAA were self imposed when they announced they were no longer an advocacy operation.

Andrew has a valid point.

I guess all you can do Andrew, is if CAA make public statements on areas that are outside their domain, is to publicly point this out each time they do so and make it clear to your political representatives right off the bat, what the CAA represents and what it does not. Handled this way, it is not an obstacle.

I agree, if the CAA is not advocacy business, then they should stay out of that arena and leave it to other groups/professionals/patients etc..

GG

PS We don't need any more of their statements muddying the waters! And they better listen up, or I am going to tell my family to quit donating to them!!