ABOUT US
Houston Chronic Fatigue and Immune Dysfunction Syndrome Support Group developed in the 1980’s. The group was a 501c3 entity for many years and run by a large group of volunteers. Ninety-five per cent (95%) of the volunteers had CFIDS. After over 20 years they became exhausted running the support group it went inactive about four (4) years ago (2005).
Approximately two years (2007) I contacted CFIDS Association of America to get their conference and traveling CFIDS Exhibit to Houston. The association put me in touch other people attempting the same thing. We concentrated on the project bringing both the traveling Face of CFS Exhibit and conference to Houston. At the conference, I put a sign-up sheet out for anyone interested in the group reforming. Over 50 people signed up which gave me encouragement. I discussed reorganizing the group with Dr. Larry Pollock, Neuro-Psychologist, and Michael Petersmith, SSD Attorney at Law. We all had a variety of concerns regarding how this would affect the CFIDS in my life but I barreled ahead and Houston CFIDS Association is the result. I seriously offended and pushed overbearingly CFS volunteers to the point of exhaustion and anger to get the website, checking accounts, meetings, etc arranged feel it has been worth it. Apologies and thank you for all the support of our participants.
After contacting former support groups officers and convincing them I was serious, we held a board meeting. They agreed to transfer the bank account (of which they donated $2,000.00 to CFIDS Assoc. of America and approximately $1,000.00 to Houston CFIDS Association) which was used for start up fees, supplies, website, etc. They were also kind enough to provide me with all prior tax, meeting, newsletter, backup CD’s, and other items related to the group. I then obtained a renewal of the assumed name, contacted former members, doctors, attorneys, press, etc regarding the group, contacted the IRS, located a free meeting space, arranged speakers, transferred the bank account, etc. With the knowledge base of Lisa Browning we created the website in about 8 hours but I estranged her in the process. Apologies and kudos to Lisa.
Our only source of funding is contributions. The businesses 501c3 charity status went inactive. I have not reinstated 501c3 status due to a lack of volunteer officers, board members, or attorney assistance.
I renewed our DBA as Houston CFIDS Association under the DBA of Houston Chronic Fatigue and Immune Dysfunction Syndrome Support Group. I chose the name for simplicity, possible growth, and positive nature. Our bank account is in the name Houston CFIDS Association, as is our website. CFIDS Association of America has kept its name also but now uses the federal standard of CFS in its literature and public service announcements. It gets confusing with the name change from ME to CFIDS to CFS. Many activists, patients, and physicians feel the name Chronic Fatigue Syndrome (CFS) trivializes the illness however all government agencies have listed guidelines under that moniker. This sounds amazing but clusters of CFS date back to the 1930′s labeled as “mass hysteria”, flu-like, Yuppie Flu, depression, etc. Most scientific progress and acknowledgment has been made in the past 10 years or so.
While it does get exhausting for me I felt it was necessary to have a group of this sort to provide information, inspiration, and support for individuals with this illness. There was a time no one knew I was ill. I never spoke of the illness until I lost friends and family to lack of information. I now discuss the illness ad-nauseum letting PWC’s know to choose a life out of bed, inform the public, and medical community about our illness. It is my opinion that until a PWC accepts the illness for what it is, learns their personal symptomology, mourns their past life and moves past it to a new normal they will not be well. I have never believed in denial. We are ill! We can move past it! I live life with no regrets and want others to do the same. I also provide scheduled speaking engagements of an Q & A informative nature regarding CFIDS. There are volunteer opportunities to assist in various ways but the ultimate responsibility is mine.
We are an independent group composed of diagnosed CFIDS/CFS/ME patients (PWC’s) as a syndrome or as a symptom. PWC’s with related disorders such as Fibromyalgia or Lyme Disease. Physicians, attorneys, non-patients such as family members, care-providers or friends of patients are always welcome.
The purpose of the Houston CFIDS Association is to:
- Acquire research and other information pertaining to CFIDS and related disorders for presentation via meetings and our website
- Form an emotionally supportive network for CFIDS sufferers, their care-providers, family and friends
- Actively pursue research funding
- Educate the medical community and general public about the debilitating often life-altering nature of CFIDS
Your input helps make this site great – send questions or posting articles for posting and offers to write articles are welcome. I offer a variety of information to assist participants at info@houstoncfids.org or 713.682.2883
December, 2009 update: There will no longer be monthly meetings due to the nature of CFIDS causing a lack of attendance (as it did in the old association). Our last meeting had two members, the speaker, and me.
Funds from the original group and minimal donations are long gone due to operating expenses (website, domain name, speaker fees, etc) not personal use as some have suggested. I will continue my original plan of providing information to the medical community and patients about CFIDS.
For the time being, I will continue to email information and provide phone support. The website will expire in approximately eight more months without donations to Houston CFIDS Association Chase bank account.
This decision has been extremely hard after operating the association alone for over 2 ½ years. The wear and tear on my personal belongings and me has taken its toll both physically and emotionally.
I will forever be grateful to Dr. Larry Pollock, Michael Petersmith SSD Attorney, Dr. Patricia Salvato, and the handful of members continually offering encouragement and support in this endeavor. Its time once again to create a new normal!
Effective January 1, 2010 Houston CFIDS Association will become inactive. I will continue providing individual support and information. Thank you all for the support shown me the last 2 ½ years. I regret not completing my original mission. If you would like to run the association, everything is easily transferable. The website and domain name active until expiration in July Bank account will remain open (transferred if group reforms – current balance $42); There will be no more emails; Records will be packed; etc.
My home phone is the associations’ info-line so feel free to continue contacting me for individual support or questions. Information provided via HCFIDS emails in the past are from about thirty newsletters I subscribe to online. You can sign-up for them if you review old email but these will get you started www.about.com www.davidsbell.com www.cfids.org
Wishes for a wonderful new year with final inspirations:
We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us. Joseph Campbell (or as I say create a new normal)
Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them – every day begin the task anew. Saint Francis de Sales (or as I say love yourself, defend yourself, and fight the bad guys)
CFIDS/CFS teaches patience and perseverance
713.682.2883