chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids


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chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids


The Empty Chair© Project

THE EMPTY CHAIR© PROJECT CONTINUES IN

FULL MOTION!

October, 2008 Chronic Fatigue Syndrome 

Advisory Meeting, Washington D.C.

Remarks, written & reprinted with the permission of Loetta Vann

Contact Loetta: loettavann@starpower.net

My name is Loetta Vann.  Last July 3 at 9:30 am marked my twenty-third year of living with Myalgic Encephalomyelitis. I brought today the receipt of that memorable visit to a Hong Kong Hospital.  I, along with more than a dozen of my college classmates, filled two taxis as we staggered away from the buffet line at the Holiday Inn seeking medical attention.  It was the most sudden and worst flu-like experience I had undergone up to that point of my life.  Although most of my classmates recovered in a few days, I was profoundly and permanently changed that week. As the respiratory infection and fever subsided, I was weak and my thought processes and senses were noticeably muted. 

In the weeks just before this 1985 onset we had been traveling through remote areas in China that had only recently opened to foreign visitors. Dr. F.M. O’Tremba of Hong Kong told us after reviewing our itinerary that we had gone through an area (Guilin of Guangxi Zhuang Province) of a known outbreak of a disease not well understood, something with a specific incubation period and something most similar to a neuro-virus.  He also told us it was affecting primarily western travelers.  It had a scary name -- Myalgic Encephalomyelitis, but most would be better in a couple of weeks, he assured us.  If it persisted, we would go to our own doctors and tell them what had happened. I did not save the packaging of the medicines received. 

Once home my primary care doctor could not find anything physically wrong and told me I was most likely experiencing what used to be called a nervous breakdown.  He found a good physiatrist who I visited for nearly two years.  Finally in 1993, after the urging of a former professor who noticed profound changes in me, I visited a mutual friend in California (193 miles from Incline Village).  My old professor told me J. had just benefited from seeing a doctor in San Francisco and though he did not know the name of the illness or the treatment she had received, our problems seemed similar.  He also did not know that J., her husband, and I had traveled to China together seven years prior.  When J. opened her front door without being told why I was visiting, she threw her arms around me and said, you have it too -- no one else can see it – but we can see it in each other’s eyes.  She gave me a string of alternative names, a stack of Time and Newsweek articles and sent me home to Maryland where the diagnosis of Chronic Fatigue Syndrome found its way into my medical chart.

You would think with 23 years of CFS under my belt I would have a handle on medical care and appropriate doctors.  I have the best insurance Maryland state employees can buy. However, my original CFIDS doctor lost his license, another retired, others did not take insurance, or help with the insurance billing.  Eventually I found a respected doctor who did take our insurance but within a year she joined a boutique group that charged and annual subsidy of $1,500 on top of insurance, deductible, and the $40,000 we paid a few years before for test and aggressive treatments. I could not afford to remain her patient.

The search continued to find a new doctor.  I learned that if the doctors believed what we were learning they did not have time in their practice to manage complex chronic illnesses, or they would be sympathetic and acknowledge that my often changing symptoms were just part of having CFS.  Changes in symptoms did not usually trigger new investigations, such as when it took three visits to the emergency room before I was admitted with acute disseminated Lyme disease with multiple eryema migraines, bilateral facial palsy, residual neuritis, and lymphocytic meningitis in June 1998.

I resumed an almost normal life post-Lyme treatment until 2002 when old cognitive symptoms sometimes returned with stress or weariness and then I had a strong reaction to mold spores that were dislodged at work. Within minutes I was sick and within the hour banned from that section of the building. My contract was not renewed.  I thought if I took off for a couple of months that I could ease my way back to work but my deepest fear was coming true; I was sliding downhill.  By 2005 my chronic cough was getting worse, non-specific COPD was diagnosed - the treatment helped and the coughing stopped. 

Perhaps it was that medication (asmanex to reduce the inflammation in my lungs) or medications to treat other symptoms (antibiotics for anti-inflammatory properties; flexeral to help the pain and sleep problems) – to which I reacted.  Bloodwork for a routine follow-up at NIH showed increased calcium, increased ALT and AST, and a CPK at nearly 7000, there was also a nonspecific intraventricular conduction delay.  The roller coaster ride is continuing, as I am attempting to co-ordinate doctors and recommended surgery for the recently diagnosed parathyroid adenoma.  This month also brought a torn deltoid muscle, intermittent dizziness, numbness, and mini-seizures.  There is also the weekly visit to the psychologist to keep all this in perspective.

I am submitting this document to ask the panel for three actions that would undoubtedly benefit many in the CFS/ME community.

1) Please adopt a criterion that has the flexibility to recognize differences between acute onset presentations and long-term disease process.  I am having difficulty re-instating my disability benefits with the existing definition.  The Social Security Administration does not believe I have CFS or ME, or even post-Lyme.

2) Please support the creation of centers of excellence that can continue to provide support, oversight and coordination of care.

3) Please support the establishment of a mentorship program that can assist persons suffering from these debilitating conditions to participate more fully in civic, social, and work opportunities.  Mentors could:

  • Suggest possible accommodations
  • Help find programs for sustainable-skill assessment and retraining for new careers, and job placement
  • Coaching on return to work and interpersonal relations. 

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March 28, 2008

The Empty Chair© Project is gearing up for the next CFS Advisory Committee Meeting to be held on Ma 5-6, 2008 at the Department of Health and Human Services in Washington DC. In collaboration with many other organizations in the U.S. and abroad, we are sending out the following call to action:

The Empty Chair© Project initiated by P.A.N.D.O.R.A. in collaboration with The Vermont CFIDS Association, The New Jersey CFS Association, The Wisconsin CFS Association, CFCCC (Chronic Fatigue Syndrome, Fibromyalgia, Chemical Sensitivity Chicago Coalition, Inc.), AFFTER (Advocates for Fibromyalgia Funding, Treatment, Education and Research), H.O. P.E. (Helping our Pain and Exhaustion, Inc), Fibromyalgia Coalition International, and with support from hard core advocates, empowerment and online support groups in the U.S., as well as with the support of other CFS-ME organizations from abroad: The Irish ME-CFS Association , is truly making  a difference.

In the last  2 meetings of the CFS Advisory Committee in 2007, advocates from South Florida representing the CFS-ME community, placed pictures of individuals suffering with CFS-ME who are unable to attend the meetings because of the health and financial challenges that the illness brings to them and their families.

The Empty Chair© Project has raised great awareness to the invisibility of CFS-ME patients, but in order to make it even more successful we need to continue to show support for the CFS Advisory Committee. Click here to read the minutes of the meeting held on November 27-28, 2007.

Their next meeting will be held on May 5-6, 2008 and P.A.N.D.O.R.A. will be there. We ask you to participate in the Empty Chair  Projec by taking the following steps:  

·         If you live in the U.S. write to your congressman asking to increase funding for this important committee and go to their link at  http://www.hhs.gov/advcomcfs/pastmeetings.html and click on the files that are broken down by meeting into the following four categories: Agenda, Minutes, Presentations,  Recommendations.

·         If you live outside of the U.S., please click on their link at http://www.hhs.gov/advcomcfs/pastmeetings.html and click on the files that are broken down by meeting into the following four categories: Agenda, Minutes, Presentations, Recommendations.

If you would like us to place your picture with your name and city, state location at one of the empty chairs during the May 5-6, 2008 meeting, please click on our contact page, write in Empty Chair Project in the subject line, and we will reply to you as soon as we can.

We will continue to update names of other organizations which are collaborating with us in this important project and will post additional pictures on our web site after the meeting.

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The Empty Chair© Project was once again highlighted during the last CFS Advisory Committee meeting on November 28-29, 2007 in Washington DC.

Marly Silverman attended the meeting on behalf of P.A.N.D.O.R.A. The CAA released their report about the meeting. There will be changes in the membership and we need to ask Congress to increase the budget for the committee so a podcast and "real time access" could allow patient testimony from a remote location either by phone or with computer and microphone cameras and would open the meetings to the stakeholders who are the intended, targeted, most concerned and deserving audience.

In order to continue with the spirit of the Empty Chair© Project, our grass roots initiative, we placed once again large pictures or CFS-ME patients who wanted to attend the CFS Advisory Committee meeting, but due to the challenges of CFS/ME could not be there in person.

I am pleased to say that we are getting the DHHS's attention. According to the information P.A.N.D.O.R.A. has received, a request for funding to be applied towards broadcasting of the CFSAC meetings is being processed within DHHS to get this accomplished! We will continue to display the Empty Chair Project Display until our community gets what it needs!

Look at the new pictures below!

Pandora      

Sheila Stevens, who was noted in 2007 as one of the most prolific advocates involved in letter writing campaigns and honored by the CFIDS Association of America, Inc.

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Pandora

Rebecca Artman, the sole patient advocate member of the CFS Advisory Committee and P.A.N.D.O.R.A.'s Public Policy and Community Advisor. Please note in the background NIH officials: Drs. Eleanor Hanna, Cheryl Kitt and her assistant

 

Pandora

You can see the pictures from left to righ first row bottom of Advocates Extraordinaire Bonnie Mayer, Bonnie Meyers (one of our founding board members, now retired) and second row members of the The Vermont CFIDS Association and Advocate Extraordinaire Barbara Soliday

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THE EMPTY CHAIR© PROJECT

A P.A.N.D.O.R.A. grass roots project calling attention to the fact that the majority of CFS/ME patient advocates cannot attend the CFSAC meetings in Washington DC due to disability, logistics and financial challenges. P.A.N.D.O.R.A. for the past 2 years, and in partnership with other sister organizations, has asked the Dept of Health and Human Services (DHHS) to use current and existing technology to provide access "in real time" to CFSAC public meetings.

Budget and privacy issues have been raised among the reasons why this is not possible. However, no one has really provided a definite "official response" to our request on this issue, only possible concerns have been raised in a government response to P.A.N.D.O.R.A.

"Real time access" could allow patient testimony from a remote location either by phone or with computer and microphone cameras and would open the meetings to the stakeholders who are the intended, targeted, most concerned and deserving audience.

And here is how the Empty Chair© Project came about! We placed large pictures or CFS patients who wanted to attend the CFS Advisory Committee meeting, but due to the challenges of CFS/ME could not be there in person.

Sister organizations who participated in this project were the Wisconsin CFS Association, the Vermont CFIDS Association, the Massachusetts CFS Association, F.A.C.E.S and the CFCC (Chicago), AFFTER and with the support of other individuals within our nationwide community.

Pandora

International 2007 Advocate Extraordinaire and our board member Dra. Lina Garcia at the CFS Advisory Committee Meeting at the Department of Health and Human Services in Washington DC

Pandora

From left to right - CFS Advisory Committee member Rebecca Artman and CFSAC Chair Dr. James M. Oleske, Marly Silverman and a patient who testified at the CFSAC meeting with her father at her side.

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P.A.N.D.O.R.A.'s participation in the CFIDS Lobby Day was enhanced by the opportunity to also attend the 2-day CFS Advisory Committee meeting at the Department of Health and Human Services. It was extremely rewarding for our delegation to watch Rebecca Artman, the sole patient advocate in this distinguished committee representing our patient community so well!

 

Pandora

Left to right - 2007 Advocate Extraordinaire and PANDORA Board Member, Dra. Lina Garcia, Dr. Nancy Klimas, CFSAC member and member of PANDORA's Medical Advisory Board and 2007 Advocate Extraordinaire Barbara Soliday

 

Pandora

We hope to engage our Florida U.S. Senators as well! Please send them a e-mail supporting P.A.N.D.O.R.A.'s efforts. We need to effectively create awareness and educate our Senators about the quality of life issues of our community. 

 

 

 

 

 

 

 

 

 

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