Vol. V, Issue #51
Bergen CFS-FM Support Group Newsletter
The meeting was held in our new home – the Ridgewood YMCA. Everyone was pleased with the new location. It is nice to be so warmly welcomed by this organization. Since there were several new members, everyone was given an opportunity to briefly share their story and coping techniques.
REMINDER – The June meeting will be held on Sunday June 8th. This is the second Sunday instead of the third. This is to avoid conflicting with Father’s Day.
Report on the Fair Name Campaign
This article is from the following link.
Fair Name Campaign Update - Exciting New Direction
By Rich Carson
A number of you have asked about the status of the Fair Name Campaign, so I thought this first newsletter following Awareness Day would be a good time to give you an update. First, and most importantly, the patient community has jumped on board. Your feedback has been positive and encouraging.
Not surprisingly, the vast majority of patients favor adopting a new, fair name, as 'Chronic Fatigue Syndrome' is universally perceived as trivializing, dismissive, and thoroughly inaccurate. And, while there are a few people who have other preferences, most of you strongly support adopting the acronym ME/CFS.
Second, and equally as exciting, patient organizations and several in the medical community have also picked up the banner. As a result, we're already starting to see ME/CFS appear more often. Some examples:
In January 2007 the IACFS voted to change its name to IACFS/ME.
The big conference being held in London on May 23 is called the International ME/CFS Conference.
Researcher and clinician Dr. Charles Lapp has announced that all of their forthcoming research papers will use ME/CFS rather than Chronic Fatigue Syndrome.
When we began the Fair Name Campaign, our intention was to have a vote on whether or not to accept the Name Change Advisory Board's recommendation of ME/CFS. However, since that time, the campaign has taken on a life of its own, as the use of ME/CFS in both the medical and patient communities is growing steadily. Therefore, we are shifting our focus, from a vote to implementation of the name that is increasingly being recognized and accepted - ME/CFS - and moving forward with the guidance of respected patient leaders.
A New Direction
Since the formation of the Name Change Advisory Board was first announced in January 2007, I have tried to make it clear that this effort has to be driven by patients, patient organizations and the medical community. Now several patient leaders have stepped up, are taking charge, and are pushing the campaign forward. Some of those leaders include:
Karen Lee Richards – co-founder of the NFA and patient expert on ChronicPainConnection.com;
Cort Johnson – founder and editor of the Web site Phoenix Rising, which serves the ME/CFS and FM communities;
Marly Silverman – founder of P.A.N.D.O.R.A, an organization supporting patients with neuroendocrineimmune disorders; and
Dorothy Wall – author of Encounters with the Invisible: Unseen Illness, Controversy and Chronic Fatigue Syndrome.
Just a few of the exciting new things you can look forward to include:
A completely redesigned Website (to be launched in September) that will give you more in-depth information about the Fair Name Campaign, answers to your questions about the name change, and information about what you can do to help. The site will also be updated regularly, keeping you informed on all the latest news about the progress of the name-change effort.
An accelerated pace, with a more comprehensive strategy for publicizing the importance of a fair name for patients.
Celebrity endorsements featuring celebrities who are diagnosed with ME/CFS or who have family members suffering with ME/CFS.
The several hundred patients who have volunteered to help with the campaign will be contacted over the summer with suggestions of things you can do to move the campaign forward.
Clearing Up the Confusion
The sole intent and purpose of the Fair Name Campaign is to give patients a respectable name for their illness. Studies have proven that patients diagnosed with Chronic Fatigue Syndrome are not taken as seriously as patients with the same symptoms but a different name for their diagnosis. The CFS name not only affects the quality of treatment patients receive, but it also affects the amount of money committed to research. It’s hard to convince those funding research to spend their money on people they think are just tired all the time. Patients deserve to be taken seriously, to have a name for their illness that preserves their dignity, and to receive appropriate medical care.
With this in mind, the committee of patient leaders has spent several months researching and considering each and every concern addressed to and about the Fair Name Campaign. The biggest debate regarding the name change seems to be whether the ME should stand for Myalgic Encephalopathy or Myalgic Encephalomyelitis.
To give you a little background, the Name Change Advisory Board - which was composed of eight leading ME/CFS researchers and clinicians - originally recommended ME/CFS, with the ME standing for Myalgic Encephalopathy. When a few patients strongly vocalized their objections to using encephalopathy, we attempted to compromise, saying the ME could stand for either Myalgic Encephalopathy or Myalgic Encephalomyelitis. In retrospect, that was not a good solution.
There are good, valid arguments on both sides of this issue. Each name has its pros and cons. But in the end, it was felt that we should abide by the recommendation of the Advisory Board – to use Myalgic Encephalopathy as the ME in the acronym ME/CFS. The board members felt strongly that Myalgic Encephalomyelitis should not be used because not every patient diagnosed with CFS had evidence of brain or spinal cord inflammation, which is a key component for a diagnosis of Myalgic Encephalomyelitis. Dr. Nancy Klimas, president of the IACFS/ME, stated that inflammation of the central nervous system is identifiable in 80% of patients, and therefore excludes 20% of patients who also have classic CFS symptoms.
Myalgic Encephalopathy, on the other hand, is a broader, more comprehensive term, and simply means a disorder of the brain. This includes the patients with inflammation, as well as the 20% of patients in whom inflammation cannot be identified. In a word, Myalgic Encephalopathy includes all bonafide CFS patients, whereas Myalgic Encephalomyelitis excludes 20% of these patients. Which category do you think you would fall into?
We want to emphasize the fact that we are in no way trying to minimize or change the name of Myalgic Encephalomyelitis. If anything, we hope this will demonstrate the severity of Myalgic Encephalomyelitis and allow it to stand on its own. If you have evidence of brain or spinal cord inflammation and have been diagnosed with Myalgic Encephalomyelitis, you still have Myalgic Encephalomyelitis. We don’t expect you to change the name of your illness to ME/CFS.
There is one other concern some have expressed about using Myalgic Encephalopathy that we would like to clear up. They are afraid ME/CFS patients will be lumped in with people who have mental disorders. We talked with several medical experts and they all assured us that Myalgic Encephalopathy refers to an organic brain disorder and in no way includes mental disorders. (For a more complete description of encephalopathy, please see the footnoted definitions below.)
I’m excited about the new energy and enthusiasm that has been injected into the Fair Name Campaign and hope you will be, too. If you’d like to sign the petition or volunteer to help, or submit a comment or question, you can do so now on the Fair Name Campaign Web site (http://www.afairname.org/volunteer.cfm). Don't forget to watch for the announcement of our improved Campaign Website in September.
Whatever you do, don't allow yourself to be dismissed as someone who has "chronic fatigue." We can right this wrong for ourselves, for our families, and for a medical community still in need of a fair, accurate name for a disease that causes immeasurable suffering.
Keep the faith,
Your supporter and advocate,
Info: Please call us at (973) 972-4800 or contact us by e-mail .
Trial of Sodium Oxybate. People with CFS often have disturbed sleep with frequent arousals and the sense of not having slept upon awakening. Sodium Oxybate (also known as Xyrem) is known to improve deep sleep and to improve symptoms in Fibromyalgia, an illness which is often seen with CFS. The purpose of this study is to determine if Sodium Oxybate reduces fatigue and other symptoms of CFS including muscle and joint achiness, unrefreshing sleep and cognitive complaints.
Subjects in this study are randomly assigned to one of two groups, Sodium Oxybate or Placebo. Subjects in the Sodium Oxybate group will receive the actual medication while those in the placebo group will receive a drug that looks identical to the real medicine but with no active ingredients. The two groups will allow the researcher to determine the effectiveness of the drug. Subjects will then be contacted weekly for a series of six weeks at which time they will be asked questions about their fatigue, sleepiness, difficulty with attention or concentration, achiness, and overall wellness. The dosage will also be increased weekly until the subject achieves good sleep or the maximum dose is reached.
Computerized EMA Study. CFS patients have the major complaint that symptoms get worse following exertion and little objective evidence to help them understand why these symptoms exist. A major tactic for evaluating these symptoms has been the use of paper-and-pencil diaries to evaluate the daily pattern of CFS symptoms. However, problems exist using these vehicles because people often forget to record their symptoms throughout the day, and try to "catch up" later by recording symptoms at times other than those scheduled. This can lead to inaccurate and even false results. Recently, computerized electronic diaries were developed for ecological momentary assessment (EMA). Using EMA, we can ask a patient how he/she feels in real time, periodically throughout the day. The patient can answer our questions by responding on a small computer device that is worn like a watch. This device can collect and log data on subjective symptoms, cognitive function, and activity. We use the device to track symptoms before and after CFS patients perform an exercise test. How to get involved
FM – Clinical Trial
This study is located in Utah, but we share the announcement for your information.
FIBROMYALGIA TREATMENT PROGRAM
Researchers in the Department of Anesthesiology at The University of Utah are seeking individuals interested in participating in a clinical study to evaluate rehabilitation programs for treating Fibromyalgia in Women
· Have been diagnosed with Fibromyalgia Syndrome
· Are between 21 and 65 years of age
· Do not exercise regularly (less than 30 minutes per week)
You may be eligible for this study. This study includes evaluations and 10 consecutive, weekly, 2 ½ hour treatment sessions. All evaluations and treatments are at no cost to you.
If you are interested, please call The Pain Research Center at 801-585-7697 or visit our website at: www.painresearch.utah.edu/clinical
A second FM Study – also in Utah
A New Study for Fibromyalgia Patients
Dr. Lucinda Bateman is actively seeking Fibromyalgia patients, ages 18-70, to participate in clinical research studies of three investigational drugs for the treatment of Fibromyalgia. If you are interested, call Dr. Bateman’s office (801-359-7400) and talk to Ali Allen, RN, research coordinator, or others on the research team, to learn more about the drug studies currently underway. Qualified participants receive study-related physician visits, lab evaluations, and the investigational medication at no cost.
Social Director, Frank Kawa, has set a date for a gathering
Wednesday June 4th
The Seville Diner
The group will be there from 1:30 PM until about 3 PM.
Just show up.
If you have any questions or wish to let Frank know you are coming, you can call him at 201-768-4111. You do not need to contact Frank to attend.
NJCFSA May Awareness and Fund Raising Events
· Marissa’s Annual Gift Auction raised over $4,600. Marissa is a youth trustee of the NJCFSA and has been conducting this auction annually for several years. Thank you to Marissa and her family for their dedication and hard work.
· The Inaugural NJCFSA Gala to raise funds and increase CFS/ME Awareness honored Pioneers of the NJCFSA - Jon Sterling (of Bergen County), Betty McConnell, and Attorney Barbara Comerford. Our meetings, this newsletter, access to disability information and so much more are because these people cared. They used their experienced for the positive good of others living with CFS. The event was coordinated by trustee, Dominique Soeldner with the help of her mother, grandfather and friend. It was a huge undertaking that was also a huge awareness and financial success. Figures are still being tallied at this time, but the preliminary number is very impressive. Bravo to Dominique for chairing this event.
In the Journals
A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression – Source: Primary Care Companion to the Journal of Clinical Psychiatry, #2, 2008
by James P Griffith, MD, FACP and Fahd A
ImmuneSupport.com 05-08-2008 [Note: the full text of this article is available free at http://psychiatrist.com/pcc/pccpdf/v10n02/v10n0206.pdf]
Objective: Chronic fatigue syndrome (CFS) is characterized by profound, debilitating fatigue and a combination of several other symptoms resulting in substantial reduction in occupational, personal, social, and educational status.
CFS is often misdiagnosed as depression.
The objective of this study was to evaluate and discuss different etiologies, approaches, and management strategies of CFS and to present ways to differentiate it from the fatigue symptom of depression.
Data Sources: A MEDLINE search was conducted to identify existing information about CFS and depression using the headings chronic fatigue syndrome AND depression. The alternative terms major depressive disorder and mood disorder were also searched in conjunction with the term chronic fatigue syndrome.
Additionally, MEDLINE was searched using the term chronic fatigue. All searches were limited to articles published within the last 10 years, in English. A total of 302 articles were identified by these searches. Also, the term chronic fatigue syndrome was searched by itself. This search was limited to articles published within the last 5 years, in English, and resulted in an additional 460 articles.
Additional publications were identified by manually searching the reference lists of the articles from both searches.Study Selection and Data Extraction: CFS definitions, etiologies, differential diagnoses (especially depression) and management strategies were extracted, reviewed, and summarized to meet the objectives of this article.
· CFS is underdiagnosed in more than 80% of the people who have it;
· At the same time, it is often misdiagnosed as depression.
· Genetic, immunologic, infectious, metabolic, and neurologic etiologies were suggested to explain CFS.
· A biopsychosocial model was suggested for evaluating, managing, and differentiating CFS from depression.
· Evaluating and managing chronic fatigue is a challenging situation for physicians, as it is a challenging and difficult condition for patients.
· A biopsychosocial approach in the evaluation and management is recommended. More studies about CFS manifestations, evaluation, and management are needed.
Source: Primary Care Companion to the Journal of Clinical Psychiatry, 2008. 10(2):120-8. PMID: 18458765, by Griffith JP, Zarrouf FA. Internal Medicine/Psychiatry Residency Program, West Virginia University, Charleston. [E-mail: firstname.lastname@example.org]
©2008 ProHealth, Inc. Copyright Policy By: http://www.ImmuneSupport.com
In the Journals – Part II
by Society for General Microbiology
Lyme disease is the blight of countryside users but it may be prevented with a single injection, according to research published in the April issue of the Journal of Medical Microbiology.
The U.S. saw nearly 20,000 cases of Lyme disease in 2006 and there are up to 2,000 cases a year in the UK, a figure that is increasing steadily. Now scientists at the Centers for Disease Control and Prevention in Fort Collins, Colorado, USA, have developed an injection that protects against two severe diseases transmitted by tick bites: Lyme disease and Anaplasmosis.
“Along the North-eastern seaboard of the US, ticks are often co-infected with the bacteria that cause Lyme disease and Anaplasmosis,” says Dr. Nordin Zeidner. “Currently there is no vaccine to protect against either organism. We have shown that a single injection of sustained-release antibiotics can prevent both diseases in mice.”
A single dose of doxycycline given orally is only 20% to 30% effective at preventing these diseases in mice. The researchers found that a new formulation of doxycycline hyclate that is programmed to release the drug over a 20-day period is 100% effective.
“The underlying copolymer formulation has been in use for over 20 years. It has no adverse effect on humans and it can be programmed to release a drug over several weeks to several months,” says Dr Zeidner.
Next Target: Slow-Release Patches
“We plan to test the doxycycline formulation to develop different release kinetics and delivery methods. For example, a slow-release patch could be used in conjunction with current recommended protection against ticks, such as repellents and personal tick checks.”
The next meeting will be Sunday June 8th from 2-4 PM at the Ridgewood YMCA. Please note the date of the meeting. In June we meet one week earlier to avoid conflicting with Father’s Day
This newsletter is intended for CFS patients in the area of this support group. The purpose is to share information and support. If you have questions about meetings please contact: Pat LaRosa at email@example.com, Nancy Visocki at firstname.lastname@example.org, Judy Machacek at email@example.com or Frank Kawa at 201-768-4111.