Houston CFIDS Association

cfidslisalist-book-list.txtcfidslisalist-book-list.txt

published from Vermont CFIDS Association approval www.monkeyswithwings.com

Question from members: “I am receiving too many emails or two for each notice”

Answer from Administrator: We recently combined the email list for the old group and new group. If you are receiving email notices twice please let us know.

Also, if you only wish to receive meeting notices and no information emails please advise also. Thank you

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-
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Article duplicated from the following website:

ProHealth, Inc.
Patient Owned, Dedicated to research.
Phone 805-564-3064
Fax 805-965-0042
http://www.ProHealth.com
“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.”

SUPPORT THE CAUSE

Please go to the Grassroots Advocacy section of the CFIDS Association of America website:

http://www.cfids.org/advocacy/default.asp

To participate in their amazing Patient Advocacy program sign up and they will notify you of all current advocacy issues. You do not have to be a member to participate.

UNDERSTAND

One of the most difficult aspects of this condition is the lack of understanding experienced by PWCs. People think we’re malingering, or that they, too, experience these symptoms, or otherwise simply “don’t get it” no matter now well-intentioned they may be. By simply getting a basic understanding of what’s happening with your loved one or colleague, you can be a tremendous gift and support. Five minutes is all it takes.

• CFIDS Assn/CDD Spark! Campaign PSA (requires Windows Media Player)
• Sleepydust.net Chronic Fatigue Syndrome Video for Family & Friends

Patients with Chronic Fatigue Syndrome (PWC’s) have a choice to make the moment they are diagnosed. Do I give up and go to bed or do I fight? The choice is yours and yours alone but I say fight! Fight the illness! Fight the misunderstanding! Fight the medical community!

Become an advocate informing everyone you know or meet about the illnesses parameters and how it affects your daily existence. Help others understand the debilitating nature of the illness through access to both CFIDS of America’s and Houston CFIDS Associations websites. Above all, keep faith in yourself and your ability to survive.

Information is your best defense from discrimination in your life and with medical professionals.

Remember our national slogan: Get Informed, Get Diagnosed, Get Help!

MaryMargaret, Houston CFIDS Member and OASIS Consultant (see “Speaker” information), contributed this piece in response to another member’s difficulty at work.

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The criteria for determining disability for the Social Security Disability Insurance (SSDI) is different from that used to determine disability for the purpose of job accommodations under the Americans With Disabilities Act (ADA).

A person may qualify under the ADA for job accommodations but still not receive SSDI. For example, many people in wheelchairs or who are blind or deaf work rather than receive SSDI, and do require job accommodations.

Applying for SSDI

When applying for SSDI, it is imperative to have an attorney’s assistance. There is no charge for the service until the case is won. Law limits how much the attorney can collect from you after the case is won. You will also need a credible doctor(s) and possibly other professionals on your team.

Requesting Job Accommodations Under the ADA

When requesting job accommodations, it is imperative to utilize organizations such as those listed below. You usually need just one of these organizations unless they advise you otherwise. This advocacy organization won’t charge you any money and becomes a part of your team of professionals who assist you in acquiring job accommodations. You will also need a credible doctor(s) and possibly other professionals on your team.

• Advocacy, Inc.
• ILRU
• Houston Center for Independent Living (HCIL)
• Equal Employment Opportunity Commission (EEOC)

A Word of Advice

It is best to bring your boss and coworkers along with you rather than establish an oppositional stance with them. This may seem obvious, but can be more difficult than it sounds, especially with hidden disabilities that they may not understand.

Even within the world of disability advocacy itself, sometimes you may encounter built-in prejudices against people with hidden disabilities on the part of people with visible disabilities. Do your best to keep all these people on your side of the table.

Having advocacy organizations trained in how to present the information to your employer in a non-alienating manner is vital to your ultimate success. You always want to be seen as a valuable employee that people want around who just happens to have a disability.

CFIDS and related conditions can put us in a place where what we show is our frustration or anger. We must work against that. Counseling is very helpful as a place to vent and discuss your frustrations; it may even very likely save you your job.

MaryMargaret Lytle

Houston, Texas
October 2007

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.

CFIDS/CFS/ME is an illness of misnomers. Even the name is undecided. When you state you have an illness called Chronic Fatigue Syndrome its immediately misunderstood.

Here’s an easy way to override the confusing nature of the illness:

“I have an illness called Chronic Fatigue Syndrome. Have you heard of it? Its like having the flu and waking up from anesthesia at the same time, 24/7/365. CFS is a debilitating, life-altering disease. If you would like to know more check out our association website at www.houstoncfids.org”

Until I see you all again remember “life may have its ups and downs with dreams on either side so take each day and live it well and just enjoy the ride”Jane Mostowitz, President