Entry: Advocacy and CFS/ME Associations in America Wednesday, July 14, 2004



CFSAC Perspective, Advocacy and the CFIDS Association of America

 

The CFIDS Association of America (CAA) seems to be more and more out oftouch with the patient community. They had most of their staff/board membersin DC for the weekend for their board meeting and also at the CFSAC meetingBut although their membership and patient support is plummeting and we convey this to the committee and the government, this is what they see atthe meeting. (And from the patient perspective it is difficult to reconcile what this must have cost, since it would probably be safe to assume that theCAA paid expenses for those attending.) Since I made my presentation to the committee, I have learned that according to their 2003 tax forms, they arenow down to just over 5000 dues paying members - which dropped by over 1000 members within one year.

From CFSAC Perspective, Advocacy and the CFIDS Association of America

The CFIDS Association of America (CAA) seems to be more and more out of touch with the patient community. They had most of their staff/board members in DC for the weekend for their board meeting and also at the CFSAC meeting. But although their membership and patient support is plummeting and we convey this to the committee and the government, this is what they see at the meeting. (And from the patient perspective it is difficult to reconcile what this must have cost, since it would probably be safe to assume that the CAA paid expenses for those attending.) Since I made my presentation to the committee, I have learned that according to their 2003 tax forms, they are now down to just over 5000 dues paying members - which dropped by over 1000 members within one year.

But from some comments and follow-up reports, it appears they are trying to sway patient positions - there isn't going to be a name change and it really wasn't a good idea anyway so forget about it and move on. So they are trying to convince everyone, it's just the name - yet patients know how damaging the name CFS has been, and saying it doesn't matter is not true: Dr. Jason's attribution study proved that it does matter. Patients do know better.

Yet in spite of the spin, it is difficult to accept as this was their position and statement on their website up until last fall -- when the committee voted against it at the December meeting:

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"Effective name change leadership: An Association update
Our commitment is unequivocal: Leaders of The CFIDS Association of America steadfastly support a name change for CFS. The Association recognizes the stigma associated with the term "chronic fatigue syndrome" and the damage that the name itself does to patients striving for understanding and support from family, friends and health-care providers. More recently the Association has led responsible and responsive efforts to make progress on a name change and has supported others' constructive efforts."
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After years of their professed commitment to a name change -- well now it's not a good idea -- and there isn't going to be one -- ?? perhaps because they refused to actively support it and the expressed demands of the constituents they purport to serve. Patients have been extremely unified in this area and the CAA now seems to be trying to manipulate opinion on this. Their role continues to be dubious and cause for concern.
It seems overall that regarding the name change, despite the committees claims to the contrary, the fix was in anyway, considering how swiftly it was over. And it appears that Kim Kenney McCleary was involved, as she was asked at the September CFSAC meeting by Dr. Bell to help the committee develop a response to the issue. Dr. Fields has been overtly committed to openness and transparency and encouraging open deliberations and seems surprising that he allowed this regardless.
Some say that the CAA has been very effective. Well they have - as a business - not at anything that has significantly helped patients. Patients are a commodity to run the business, while they forge careers, collect large salaries and take paid trips to DC for the weekend. There is the perception that they have power, and they may to some degree, but is more of an illusion than a reality. They know where the power is and are good at attaching themselves to it, but again, power without influence does not accomplish what we need in the patient community.
So the CAA's concern is now to establish CFS as a "serious public health concern." No one would argue to the contrary, but the main focus is on more money - not how it is being utilized (i.e., for the CDC to study fatigue and open fatigue clinics while the other research centers are closing???). But since their patient base is dwindling, they in fact depend on government money, so the more the government - the more they can keep getting from the CDC.
That million dollar CDC/CAA education campaign has hardly been well received by the patient community and indeed again seems much more effective as free advertising for the CAA courtesy of our tax money, which they do need to attract more members, as they still need to have the illusion of being a patient organization. The patient community has asked the CAA and the committee how this award was determined and who is involved and what oversight there is as to content and implementation. It was said to be competitive and collaborative but have seen nothing that would indicate that this is the case. And we do not accept this as CDC's commitment to "educating," especially physicians, about the illness, as this has fallen short of acceptable expectations.
Since these awards are made on a yearly basis, they should be discontinued until there is clarification as to the content and oversight, as this is our tax money. Please contact the CDC and the following and request that this CDC/CAA education contract be terminated until these matters are satisfactorily resolved. If not then we will request Congressional action.
Diana Saba
Retired Nurse
FM CFS/CFIDS/ME and Related Illnesses/Disorders

ME International

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