Friday, March 6, 2009

How far would you go for a cure?

Soure:  Los Angeles Chronicle
Date:   March 6, 2009
Author: Lourdes Salvador
URL:    http://www.losangeleschronicle.com/articles/view/92840


How far would you go to find a cure
-----------------------------------

How far would you go to find a cure for your child´s chronic fatigue
syndrome (CFS)? Annette Whittemore went $5,000,000 far. Expert medical
care for chronic fatigue syndrome has been virtually nonexistent. Often,
patients are left desperate for relief and frustrated at the lack of
answers.

Whittemore, a special education teacher the wife of a Nevada developer and
lawyer, Harvey Whittemore, decided to take matters into her own hands when
it came to her 31-year-old daughter, Andrea, who has had CFS for 19 years.

Chronic Fatigue Syndrome (CFS) is an illness primarily characterized by
profound, debilitating fatigue which has been ongoing for at least 6
months and is not relieved by rest. Other symptoms include:

* Cognitive difficulties, impaired memory, and poor concentration.
* Postexertional malaise (exhaustion and increased symptoms) lasting more
  than 24 hours following physical or mental exercise.
* Unrefreshing sleep.
* Joint pain (without redness or swelling).
* Persistent muscle pain.
* Headaches of a new type or severity.
* Tender cervical or axillary lymph nodes.
* Sore throat.

The dramatic decline in activity level and stamina is often severe enough
to result in substantial occupational, educational, and social limitations
that lead to defining CFS as a major functional impairment. At least one
quarter of those afflicted are either unemployed or on disability.

Whittemore hopes to provide care to CFS patients at the Center for Molecular
Medicine at the Whittemore Peterson Institute, which she partially funded
with $5 million.

The $86 million Center will be located at the University of Nevada, Reno
and is scheduled to open next year. Not only will it serve CFS patients, but it will also serve other patients with various neuroimmune and
inflammatory diseases, such as myalgic encephalomyelitis, fibromyalgia, atypical multiple sclerosis, autism, and other related illnesses.
The past
challenge with obtaining care for CFS was that doctors had no test to
confirm whether someone has CFS.

Now, Judy Mikovits and her colleagues at the Center have developed a diagnostic blood test which measures five cytokines and chemokines that can be used to confirm a diagnose CFS. Research projects also uncovered the fact that treating CFS patients with anti-viral drugs has greatly reduced symptoms.

Patients are calling the center from around the world to inquire. Despite
their suffering, the prior lack of a clinical test meant that many have
been mistreated by the medical community and in some cases disbelieved
that anything was wrong at all.

It is extremely frustrating to be living with a chronic disease and have a
doctor dismiss symptoms
as "normal" or "all in your head" simply because
the medical community has not yet figured out what causes the illness or
found a way to confirm it.

It´s humiliating and degrading for patients. Even worse, lack of early
treatment frequently leads to disability, financial ruin.
But the Center
hopes to change all that. In addition to diagnosis, the Center will offer
counseling, nutritional advice, supplements and physical therapy.

--------
This article originally appeared in the MCS America News, March 2009
Issue. http://mcs-america.org/March2009.pdf . For more articles on this
topic, see: MCSA News.

--------
(c) 2009 Lourdes Salvador & MCS America
(c) 2009 Los Angeles Chronicle





 

Thursday, March 5, 2009

Multi-tasking is a challenge for People with CFS

I had noticed that I have a problem with it, but, as always, it's good to have research to back up my own observations, since many doctors think it's "just an excuse to avoid returning to work" or "just your imagination" when a patient reports something like this.
 
Several years ago, someone postulated that the CFS brain awake looks like the normal brain asleep, and just needed to be retrained.  I saw my grandfather retrain his brain after a stroke, and some CFS researchers have found brain damage, so this made sense to me.  The researcher was charging thousands of dollars to bring you to the lab and have you play video games; I decided I could do it much cheaper at home by playing Tetris.  (You can use the computer game of your choice, but it has to be something that dictates the speed to you, not something like Solitaire, where you can move as slowly as you want.)  After a few months of playing multiple games of Tetris every day, I saw a definite difference in how well my brain functioned.
 
I have since tried re-training my brain to multi-task.  At the moment, in addition to blogging, I am listening to music and watching TV.  Granted, it's not quite the same as working and talking on the phone at the same time, but it's a start! 
 
 
"Very often the findings are consistent with decreased information processing speed and poor working memory while overall intellectual function is usually intact.  These results are not uncommon in CFS and are supported by increasing research evidence"
 
"I become anxious, upset, and frustrated"

"While many papers have been published about cognitive dysfunction in CFS, the issue of difficulties with multi-tasking has not been taken explicitly under consideration in CFS yet and is an area for future research consideration.  While many cognitive studies have developed paradigms to address task switching and performing dual task, a laboratory paradigm based on the real life perception of patients that they "have lost their edge" or "cannot do even routine tasks at the same time" has been difficult to translate into a quantifiable paradigm"
 
"I hope I have addressed how poor processing speed and working memory can manifest in daily life and what the hypothetical reason is for this to happen.  But the question that remains to be answered is possibly the more important one for CFS patients who have to deal with these problems: "What can I do about it?" Following are some tips I usually advise my patients to consider:
  1. Do not continue to try and complete 'everyday' tasks, such as food shopping, the same way you did before you became ill.  A paradigm shift is in order.
  2. Unlike the perpetuated myth that multi-tasking saves time, it does not for patients with CFS; instead unsuccessful multi-tasking takes more time, adds anxiety and frustration, thus compounding the problem." 




 


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IACFS/ME Spring Bulletin 2009

Bulletin of the IACFS/ME
A Quarterly Publication of the International Association for CFS/ME
Volume 17, Issue 1 • 2009
 

Editor
Gudrun Lange, PhD

Editorial Advisory Board
Leonard A. Jason, PhD

Fred Friedberg, PhD

Rosamund Vallings, MNZM, MB, BS

Patricia A. Findley, DrPH, MSW, LCSW

Helena K. Chandler, PhD

Dane B. Cook, PhD

Managing Editor
Greg Fillmore

 

Table of Contents

Letter from the Editor
Gudrun Lange, PhD
Is there an association between exposure to chemicals and chronic fatigue syndrome? Review of the evidence.
Luis Carlos Nacul, MD, MSc, PhD,

Eliana Mattos Lacerda, MD, MSc, PhD,
London School of Hygiene and Tropical Medicine;
Dikaios Sakellariou, MSc, Doctoral candidate,
Cardiff University, Cardiff
How do adolescents with chronic fatigue syndrome perceive their social environment? A quantitative study.
Elke L. S. Van Hoof
, PhD, Open University, The Netherlands, Vrije Universiteit Brussel (VUB), Belgium;
Pascale J. De Becker, PhD, Open University, The Netherlands;
Charles Lapp, MD, Hunter-Hopkins Center, PA, Charlotte, North Carolina, USA;
Kenny L. De Meirleir, MD, PhD, Open University, The Netherlands
Multi-tasking: A challenge for patients with CFS
Gudrun Lange, PhD, UMDNJ-New Jersey Medical School
Instructions for Authors

IACFS/ME Biennial 2009 Conference



 


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CFS hits the National Airwaves (and podcast, too!)

 

CFS HITS THE NATIONAL AIRWAVES

If it's chilly where you are, curl up next to your radio or computer this week to hear about CFS!

On Thursday, March 5, from 12 -- 1 p.m. (Eastern), Association President and CEO Kimberly McCleary and Dr. Suzanne Vernon, Association scientific director, will be guests on nationally broadcast radio program "Ask Dr. DeSilva."  CFS will be the topic of the hour-long show hosted by practicing internist and media personality Dr. Derrick DeSilva.  Check your local radio listings for the station nearest you to offer the show, or listen live online at www.HealthRadio.net.  This edition of "Ask Dr. DeSilva" will also be available as a podcast -- check the public awareness campaign Web site's media pages (www.cfids.org/sparkcfs/radio-media.asp) for a link to it on Friday, March 6. 

You can check out all the media coverage of CFS on the Spark! campaign web site at www.cfids.org/sparkcfs/media-coverage.asp.
 




 


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Wednesday, March 4, 2009

Happy 21st Birthday to my Diagnosis!

And 21 years later, there's still no effective treatment, no cure, only symptomatic relief.
 
 







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