Kim McCleary: Open letter to CFS community

K

_Kim_

Guest
December 11, 2009
Open Letter to the CFS Community

In 1987, the CFIDS Association of America began as a local support group in Charlotte, N.C. Two years later, a part-time administrative assistant was hired, and in early 1991, I joined a staff of four young professionals. Each of us was drawn to the cause by a genuine desire to make a difference in the lives of people we knew with CFS. Nearly two decades later, two of those four people are still motivated every day by that same desire - CFO Kris Hopkins and me - as are the other seven members of the Association's staff.

My passion for the work of the CFIDS Association has grown more intense with each person I've met who has shared her or his story about how CFS has devastated a life. Six years ago, I married a man whose mother and sister have CFS, adding a very personal dimension to the fight I've made my life's work. But from the beginning, being part of the CFIDS Association has been about conquering CFS - making it widely understood, diagnosable, curable and preventable. This is the mission we have sustained together for 22 years, under the leadership of a dedicated volunteer Board of Directors of individuals personally affected by CFS and with the support of generous donors at all levels. This is the mission that will guide us until CFS has been conquered.

While our mission remains unchanged, the organization has evolved over the past 22 years. We've used collaboration whenever possible and confrontation when necessary. We've formed alliances and partnerships when helpful, but refused to dilute our focus or compromise our integrity. We've seized opportunities to expand high-quality research, educate medical providers, influence public opinion and change public policy, all with the goal of improving the everyday lives of CFS patients. At times of uncertainty, tension and dissension, we've tried to hold a steady course, a pledge that has taken on renewed importance since the announcement of the XMRV discovery two months ago.

As a family member of two people affected by CFS, I know first-hand the range of emotions generated by this and other research announcements. "Finally," patients say and their loved ones echo, "a potential cause has been identified, a discovery that brings us closer to an effective treatment or even a cure." The link between CFS and XMRV is the most recent promising news of this kind, and I hope and pray it will take us farther than we have been before.

Upon the October 8, 2009 publication of the XMRV study, the CFIDS Association congratulated Dr. Judy Mikovits and her colleagues at the Whittemore Peterson Institute, Cleveland Clinic and the National Institutes of Health. Since then, we have advocated vigorously for research to explore these findings more deeply and we have provided regular updates in an effort to meet the unprecedented interest in new developments. We are expanding our efforts; in the coming weeks and months, the CFIDS Association will:


* continue to share news and frequent updates about XMRV and other high-interest topics through our website (www.cfids.org), our Facebook page (www.facebook.com/cfidsassn), our electronic newsletter (CFIDSLink) and our print publication, SolveCFS;
* announce new opportunities for patients and loved ones to participate directly in innovative research projects;
* participate directly in the new Blood XMRV Working Group formed by the U.S. Department of Health and Human Services to address high-priority studies of this retrovirus in human disease and potential risks to the general blood supply;
* educate members of Congress and other health policy makers about the urgent and unique opportunities in CFS research and the need to translate these opportunities to advances in improved diagnostics and care; and,
* launch of series of webinars bringing CFS experts to you through the internet.


Every person whose life has been touched by CFS eagerly awaits research that will produce what we so desperately desire: absolute validation, definitive answers and unbridled hope. As a community, we must mobilize energy and accelerate momentum. We must unite as never before to champion ample rigorous science that dispels all doubt and returns all women, men and children with CFS to healthy, productive lives.

Sincerely,
Kim McCleary
President & CEO
The CFIDS Association of America
 

JustJack

put on yer dancin' shoes
Messages
53
Likes
2
Location
Sacramento CA
Appreciate the letter of support

I do appreciate the letter from Kim M.

I also sit here, 31 years after onset and have to face the reality that our govt helped me stay sick this whole time. I am not really happy about the recent news because it makes me even more angry about the people that have been quieted and closeted away because they were coming close to the truth.

I can't easily brush aside the studies in the 90's that were leading here but never made it to the light of day. I remember Dr John Martin and CCID and Dr Frietas, and, on the other hand, people like Dr Tietelbaum, who for years led us in the wrong direction with his arrogance.

I think of all the research I have done in the last 13 years and how frankly we are right back to where we were then, the same language I have spoken for all these years and been laughed at and ridiculed by doctors.

I think of the life that I have lost, my career, my friends, even my legitamacy
dealing with this DD all this time.

So, I do appreciate the letter Kim, but I cannot accept so easily what has happened. Please do not expect that my anger and dissappointment about my life, which has been cut short, and the fact that I have had to endure such suffering, self doubt and loss all these years, will just go away because finally the govt is being forced to bring this all into the light of day.

Yes, we will come together now, but no one can expect that all these years of hurt and negation will just disappear among those of us who have suspected and have even known the truth. We have been forced to be underground and support ourselves while the world has not listened.

We will recover and we will get well, I pray, but we will be loud and sloppy about it and we will ring the rafters with our voices so that those coming after us will, by God's will, not have to endure what we have.

Thank you for understanding and listening,
JJ
 

Roy S

former DC ME/CFS lobbyist
Messages
728
Likes
1,619
Location
Illinois, USA
I've had CFS since 1970, and I got deeply involved in advocacy with the CFIDS Association starting in the late 1980s. I have one question.

Is Kim McCleary the best possible person to lead the CFIDS Association?
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,060
Location
Arizona in winter & W. North America otherwise
Personally I think she is - I think she's very innovative in what she does. I think shes taken a course over time that has been effective but has obviously lost standing in the patient community. So I want her to continue AND I want the CAA to be more adept in answering patients questions and explaining why they're doing what they're doing. I also want them to take more stands on important issues and be more patient friendly ie - be more of a place for CFS patients to go to by embracing more of the technology on the web.

I completely discard most of the rumors on the CAA;ie that they are 'in bed' with the CDC, that they're in it for themselves, etc.; I think those are completely wrong and after looking at them closely I find they're based on virtually nothing.

I do think the CAA can change, though, and if you look I think you'll find that its in the process of changing.
 

Quilp

Senior Member
Messages
212
Likes
510
I agree wildaisy

Warm words from Kim, but what has she actually achieved ? She talks of making a difference and that was nearly twenty years ago. Have we come any further and if we have, has it been because of people like her or inspite of people like her ? If so where is the evidence ?

Kind regards, Mark
 
K

_Kim_

Guest
I don't understand. I'm asking, Kim of this forum, whether Kim McCleary asked you to post her message here. Did she ask or did you find it on the CFIDS website and bring it here of your own volition?
Oh no, I am just posting news. I signed up for the CFIDS newsletter. This letter came today.

I have only been part of the CFS world for 2 months, I am still learning about the history of the disease, the politics, the research, and advocacy. I have no connection to Kim McCleary

ETA: If you are wondering where my loyalties lie, my money has only gone to this forum and to WPI. I entered their Harley raffle and today is the last day to purchase tickets. If I win, I want to sell it on ebay and donate that money to WPI as well.
 

Lily

*Believe*
Messages
677
Likes
5
The letter

I received it as well this morning from CAA - apparently it went to all current members who signed up to receive the newsletter.
 

jspotila

Senior Member
Messages
1,099
Likes
778
So, I do appreciate the letter Kim, but I cannot accept so easily what has happened. Please do not expect that my anger and dissappointment about my life, which has been cut short, and the fact that I have had to endure such suffering, self doubt and loss all these years, will just go away because finally the govt is being forced to bring this all into the light of day.
No one at the CFIDS Association thinks patients should stop being angry. We are all - patients and non-patients alike - infuriated at the decades of government waste, negligence, inattention and worse. The Board and staff focus on channeling the anger and frustration into work that creates meaningful results and pursues change at NIH, CDC, Congress and DHHS.

Don't stop being angry. Don't lose the passion that brought you here.

Personally, I take that anger and use it because it gives me strength when my body has none.
 
K

_Kim_

Guest
Welcome jspotila

No one at the CFIDS Association thinks patients should stop being angry. We are all - patients and non-patients alike - infuriated at the decades of government waste, negligence, inattention and worse. The Board and staff focus on channeling the anger and frustration into work that creates meaningful results and pursues change at NIH, CDC, Congress and DHHS.
Just curious, do you work for the CFIDS Association?
 
K

_Kim_

Guest
I have served as chairman of the Board of Directors in 2008 and 2009. I am a volunteer, as is every board member. I've been sick for 15 years.
Thanks for being open about your connection to the Association. I hope your presence here can help to increase communication between the patient community and the CAA.

Thank you, too, for your dedication and for the generosity of your time and energy as chairman of the Board.

What are your thoughts on XMRV testing? I'm asking you, the patient, not the chairman.
 

JustJack

put on yer dancin' shoes
Messages
53
Likes
2
Location
Sacramento CA
ok...but I am still angry

No one at the CFIDS Association thinks patients should stop being angry. We are all - patients and non-patients alike - infuriated at the decades of government waste, negligence, inattention and worse. The Board and staff focus on channeling the anger and frustration into work that creates meaningful results and pursues change at NIH, CDC, Congress and DHHS.

Don't stop being angry. Don't lose the passion that brought you here.

Personally, I take that anger and use it because it gives me strength when my body has none.
I certainly support what the CAA has been trying to do for the visibility of this DD. My perspective on this does include two years of lobbying for lobby days, attending many events, 12 years of reading the CAA website, hosting various fundraisers, doing press whenever I could and multiple dedications. I am entitled to by angry.

I have too much pent up frustration, being trapped in my house, because I understand this cover-up and it's just not ok with me. After years and years with no validation, I cannot make this kind of u turn. Like the saying, "it is hard to turn an oceanliner."

The proof will be in the pudding...

JJ
 

Marylib

Senior Member
Messages
470
Likes
87
Location
New Zealand
Hi Jspotila

I want to welcome you too. I think many of us hope that we can have an ongoing exchange with the CAA, and this forum is terrific. Surely our communication will do us all good. :)
 

jspotila

Senior Member
Messages
1,099
Likes
778
Thanks for being open about your connection to the Association. I hope your presence here can help to increase communication between the patient community and the CAA.

Thank you, too, for your dedication and for the generosity of your time and energy as chairman of the Board.

What are your thoughts on XMRV testing? I'm asking you, the patient, not the chairman.
I am watching with caution. We need a validated test, and more importantly, we need clinical trials of medications that show whether any antiretrovirals will help.

The recent Womans Day magazine article on CFS included this statement, However, Dr. Mikovits says you may not want to bother [with testing], since the test cant be used to diagnose CFS and theres no treatment for XMRV right now. Dr. David Bell and Dr. John Coffin have also expressed reservations. http://www.cfids.org/xmrv/testing.asp