Houston CFIDS Association

Effective January 1, 2010 Houston CFIDS Association will become inactive. I will continue to provide individual support and information via

info@houstoncfids.org

junglejane1426@att.net

713.682.2883

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 transferrable.

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

Jane Mostowitz, President

Houston CFIDS Association

1426 Chantilly Lane

Houston, TX 77018-4131

Which CFIDS Sub-Set are you? Jane, President, Houston CFIDS Association is subset – #4,6,7:

Article Entitled: Seven genomic subtypes of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME): A detailed analysis of gene networks and clinical phenotypes – Source: Journal of Clinical Pathology, Dec 5, 2007 by Jonathan R Kerr, MD, PhD, et al. ImmuneSupport.com

12-07-2007

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) is a multi-system disease, the pathogenesis of which remains undetermined. We have recently reported a study of gene expression, which identified differential expression of 88 human genes in patients with CFS/ME.

Clustering of QPCR data from CFS/ME patients revealed 7 distinct subtypes with distinct differences in SF-36 scores, clinical phenotypes, and severity.

In this study, for each CFS/ME subtype, we determined those genes whose expression differed significantly from that of normal blood donors, and then determined gene interactions, disease associations, and molecular and cellular functions of those gene sets. Genomic analysis was then related to clinical data for each CFS/ME subtype.

Genomic analysis revealed some common (neurological, cancer, immunological, inflammatory, hematological) and some distinct (metabolic, endocrine, dermatological, cardiovascular, connective tissue) disease associations among the subtypes.

Subtypes 1, 2 and 7 were the most severe, and subtype 3 was the mildest.

Clinical features of each subtype were as follows:

· Subtype 1 (cognitive, musculoskeletal, sleep, anxiety / depression);

· Subtype 2 (musculoskeletal, pain, anxiety / depression);

· Subtype 3 (mild);

· Subtype 4 (cognitive);

· Subtype 5 (musculoskeletal, gastrointestinal);

· Subtype 6 (post-exertional);

· Subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, Neuro-cognitive, anxiety / depression).

It is particularly interesting that in these genomically derived subtypes, there were distinct clinical syndromes and that those which were most severe were also those with anxiety / depression, as would be expected in a disease with a biological basis.

[Note: Dr. Kerr published another article in the same issue titled "Enterovirus infection of the stomach in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)"]

Source: Journal of Clinical Pathology. Dec 5, 2007. [E-pub ahead of print]. PMID: 18057078, by Kerr J, Burke B, Petty R, Gough J, Fear D, David M, Axford J, Dalgleish A, Nutt D. St George’s University of London; King’s College London; Sheffield Rheumatology Centre; University of Bristol, UK. [E-mail: jkerr@sgul.ac.uk]

ImmuneSupport.com
-Your Fibromyalgia & Chronic Fatigue Syndrome & Chronic Pain Specialist-
Treatment & Research
Vitamins & Supplements
News & Support Groups

Article duplicated from the following website:

ProHealth, Inc.
Patient Owned, Dedicated to research.
Phone 805-564-3064
Fax 805-965-0042

“empower people to take control of their health
by providing comprehensive health resources,
current treatment information, quality health products
and advocating for the rights of the patient.”

In today’s edition of CFIDSLink, the Association announces the hiring of a new Scientific Director to advance CFS research. This news has also been released to the national media through PRNewswire and has already been picked up by several online news sources.

CFIDS Association of America Names New Scientific Director To Advance Chronic Fatigue Syndrome Research

Charlotte, North Carolina-November 7, 2007. The CFIDS Association of America announced today that Suzanne Vernon, PhD, has been named scientific director and will lead the Association’s research program for chronic fatigue syndrome (CFS). She will oversee Association-funded research grants, foster opportunities for data sharing and collaboration among CFS researchers worldwide, and help build a framework for accelerating the pace of research through multidisciplinary, translational research.

To support these research initiatives, the CFIDS Association is announcing a new campaign to raise a million dollars over a one-year period to fuel the program. This is the largest research campaign for CFS to date in the United States.

The post of scientific director was created to enable the CFIDS Association to focus on facilitating new networks of communication and collaboration-and strengthening existing networks-among researchers doing basic science and clinicians on the front line of patient care.

Dr. Vernon has 17 years of experience as a microbiologist at the Centers for Disease Control and Prevention (CDC), where she helped identify viral markers that predict cervical cancer before moving into the CFS research group at the agency in 1996. She led the CDC’s chronic fatigue syndrome Molecular Epidemiology Program for the past decade, and her team was one of the first research teams in the world to apply human genomics and genetics to identify biologic and diagnostic correlates of CFS.

“Dr. Vernon’s CFS research background and broad skill set makes her the ideal choice for this new position,” said Kimberly McCleary, president and CEO of the CFIDS Association. “Dr. Vernon helped pioneer the application of proteomics and genomics to chronic fatigue syndrome at the CDC, and now she will help our organization pioneer a new model for speeding the progress of CFS research and translating the science for health care professionals and patients to move clinical care forward and ultimately lead to more effective treatments.”

Dr. Vernon says it’s not uncommon for there to be a huge gap between science and medicine, and that CFS is no exception. “There has been tremendous progress made by CFS researchers around the world in the last decade,” she said. “We now understand an enormous amount about the pathophysiology of CFS, and about the body systems that are broken or altered by this disease. Now it’s time to move the entire field forward by encouraging the kind of collaboration and communication among scientists that propels research to the next stage and to spearhead empiric diagnostic efforts and new treatment interventions.”

Benjamin Luft, MD, a professor and infectious disease specialist at SUNY at Stony Brook, said today, “The appointment of Suzanne Vernon as the scientific director of the CFIDS Association is a coup for both the Association and all who care about understanding and treating this elusive condition. Over the years, Dr. Vernon has been an important part of the leadership of a multidisciplinary systems biology effort at the CDC to understand the intricate dysregulation that occurs with chronic fatigue syndrome. In bringing together various disciplines from computational biology and genomics to epidemiology and clinical medicine, this work serves as a paradigm for understanding diseases that are caused by a multiplicity of factors. Ultimately, this knowledge is our best hope for effective therapy.”

Nancy Klimas, MD, an internationally recognized CFS researcher and clinician based at the University of Miami, believes this new research vision “is the next imperative step for the CFS field to help move the body of science forward into pathophysiologic and subgroup-based clinical intervention studies.” She added, “Dr. Vernon has shown a unique ability to bring experts from divergent fields together. She has tremendous enthusiasm for this work, and her compassion for patients afflicted with this illness is obvious. She is deeply respected by the scientific community, and I can think of no better choice for this important position.”

Specific priorities that Dr. Vernon will address for the CFIDS Association include:
• Leading the Association’s own research grants program, which has funded $4.8 million in research so far, to expedite progress in the search for biomarkers, treatments and a cure
• Building strong collaborations with CFS researchers across the world to identify synergies, gaps and opportunities that warrant higher priority
• Developing new opportunities for scientists to share ideas, knowledge and data to advance the field
• Surveying other fields of research for findings and scientific approaches of potential relevance to CFS
• Assisting in efforts to secure a new infusion of federal research funding for CFS
• Attracting new investigators from a number of disciplines to the field of CFS research.

Dr. David Bell is a well recognized expert in Chronic Fatigue Syndrome. He began his study of the condition following an outbreak in 1985 in Lyndonville, NY and has written numerous medical articles and books. He has served on the board of directors of the International Association of Chronic Fatigue syndrome and was chairman of the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee.Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities, Myalgic Encephalomyelitis, Orthostatic Intolerance, Chronic Lyme Disease, Transformed Migraine make up a spectrum of illnesses characterized by reduction in daily activity, severe fatigue, widespread pain, and numerous other symptoms. Despite severe and sometimes disabling symptoms, the affected patient looks relatively well. In this book a mechanism is presented arguing that these illnesses are characterized and defined by decreased cellular energy production, or cellular hypoxia. The term Neuro-Immune Fatigue is suggested for this spectrum of conditions. This is not a book that describes the signs and symptoms of the illnesses in this spectrum; it is a book that explores mechanisms that lie beneath the complex patterns of symptoms.

www.immunesupport.com/shop/product.cfm?PRODUCT__CODE=BK88&LN=2

A friend saw this on CNN:

LOMITA, Calif., Sept. 14 — Enterovirus, a common pathogen that can cause acute respiratory or gastrointestinal infections, may be a factor in Chronic Fatigue Syndrome, according to researchers [at MedPage Today].

Action Points

• Explain to interested patients that this study suggested a link between a common viral infection and chronic fatigue syndrome but the finding requires confirmation.
• Explain to patients that no microbiologic cause of chronic fatigue syndrome has been established definitively.

Click here for the full article.

A  member of our group (moving to Houston from out of state) had the following article published in an animal magazine. The article mentions CFIDS and is a wonderful.

angels_with_fur_8-2007_cats-dogs_magazine.pdf

Our first meeting was amazing!

Over 25 PWCs, Caregivers (Spouses and Children from ages 10 – 60ish) and scheduled Speakers, MaryMargaret Lytle, Mike Petersmith and John Kern, were present.  The meeting lasted until 2:30 due to the fact that my presentation took too too long for which I apologize.  It amazed us that Central Market didn’t evict us. To all who attended, I am sorry my passion about CFIDS and our 5-year plan took hold. I promise to time my presentation for the next meeting.  Although we were all exhausted we were elated at the knowledge and new acquaintances (soon to be more) we all met.

We all gave our “Profiles” and none of us wanted to leave until all had spoken. The stories were all too similar of driven, passionate about life individuals and the life-altering nature of CFIDS/CFS/ME. We discussed an amazing array of symptomology, coping skills. and knowledge.

We now have a Secretary, Carol Edwards and Treasurer/Auditor, John Bagzis, both (Non-PWC). Our deepest thanks to both for stepping up to the plate. We still need a Vice-President. Officer positions will not be load intensive. Board meetings will be held via email (due to the nature of the illness) or for 15-30 minutes before a scheduled Houston CFIDS Association meeting.

If you are interested in leading (monitoring) a “chat” group on Yahoo or Meet-up, please contact Jane at houstoncfids@wt.net * (We have had numerous requests for people to talk via online chat or by phone especially at 2 a.m. when no one is available).

Our next meeting will have Dr. Salvato speaking with a Q & A afterwards.

Please note:

NO MEETING September (Labor Day) 2007,  November, 2007 or April, 2008 (due to room unavailablity). Check our website often for interesting information or questions.

Remember if you email the association with a question for posting with the group, we will consider it permission to give your email address for direct reply. This permission only applies to the group and will not be shared with other entities.  I was getting overwhelmed with emails and this was the best way to solve the issue but as always, feel free to email me any questions or comments.

Thank you to all the out-going officers and other supporters regarding re-forming the association.

Jane Mostowitz, President
Houston CFIDS Association