March 2006

 Vol. III, Issue #27

Meeting Report

The meeting was held on Sunday March 19^th.  We had planned to show the Q & A segment of the Fall 2005 NJCFSA conference. However, due to equipment problems, we had to postpone the showing.  The team members discussed some of the upcoming events for the CFS community. It also allowed the group to discuss issues of concern.  Two new members were able to express their questions and concerns.

For those who might be interested in viewing the fall video, it is available at the NJCFSA website (www.njcfsa.org).  Members can borrow it for a small shipping fee.  Purchase information is available at that site.  For those who do not have internet access please contact the NJCFSA Hotline at 888-835-3677 (during business hours) for more information.

Just For Fun

Our social director, Frank Kawa, continues to organize luncheons.  Announcement of the most recent one, held last week, was sent in a separate mailing since this letter was not yet completed.  Watch your inbox for information about future gatherings as they become available.  The luncheons are held at the Westwood Diner and Pancake House on Old Hook Rd, in Westwood, just east of Pascack Valley Hospital.  Those who attend have a great time.

Our Newsletter – a note to our US postal recipients - (not electronic recipients)

There are factors to be considered regarding this newsletter.  One is the fatigue factor for the person who prints and mails the copies to US mail recipients.  The second is financial.  Due to the rising cost of printing and mailing the monthly newsletter via the US Postal Service, it has been necessary to re-evaluate this option.  If you have an email address and are currently receiving the paper version, we would appreciate your emailing info so we can send it to you by way of the yahoogroups account.   If you don't have email or a computer, many libraries have computers for public use and there are a variety of free mail websites available at libraries.  For the few that may not have access to any email possibility, we are asking that you send stamps to cover the mailings for the 2006-2007 season.  Newsletters are sent from August through June.  We will continue mailings through June 06.  The new policy takes effect with the August mailing.  Stamps (11 $.39 stamps) can be sent to Anne Gilmartin 211 Bedford Road Dumont, NJ 07628.  If you have any questions or financial concerns, please call Anne at 201-244-5188.  You may also contact me at pat@larosas.net.   We want to continue reaching out to you as a support system.  Please consider making the change.  Please note: if we do not receive a response, it will be assumed that you no longer wish to receive the monthly mailing.  We do hope to hear from you.

Research

 
Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members.

Friedberg F, Leung DW, Quick J.

Department of Psychiatry, Stony Brook University, Stony Brook, New York 11794-8790, USA. fred.friedberg@stonybrook.edu

OBJECTIVE: To examine the benefits and problems of a chronic fatigue syndrome (CFS) and fibromyalgia (FM) support organization as reported by its participants. METHODS: Active members (n = 32) and inactive members or dropouts (n = 135) of a regional support organization for people with CFS and FM completed a 26 item questionnaire by telephone interview or by self-completion and postal return. RESULTS: The most frequently endorsed benefits of membership were illness legitimization (67.8%), finding out helpful new information (66.4%), and feeling understood by others (62.2%). Lower frequency endorsements were given to: helped to find (35.0%) or deal with (38.5%) doctors, and helped to improve my illness (36.4%). The most frequently reported reasons for dropping out were inconvenient location (37.8%) or time (37.0%), too much negative talk or complaining (33.3%), too sick to attend (28.8%), and illness or coping improvement (29.6% each). The active-member group showed significantly higher (p < 0.04) symptom severity scores and less illness improvement (p < 0.01) in comparison to the inactive/dropout group. CONCLUSION: This cross-sectional study suggests that support groups for CFS are viewed as helpful by participants on a number of illness related issues. On the other hand, active members reported greater symptom severity and less illness improvement than inactive members or dropouts.

PMID: 16331774 [PubMed - indexed for MEDLINE]

Response to a Publication  

This is offered for your information.  The Bergen CFS Support Group does not necessarily agree or disagree with the author's opinions.

From Mary M. Schweitzer, Ph.D from http://www.co-cure.org/unsub.htm

I recently received the CFIDS Association of America's new research issue.  While it is commendable to see so much information compiled in a single place, there is a serious error that requires correction.

In an article titled "The Faces of CFS", the authors mentioned that historically, the name for this condition has included "epidemic neuromyesthenia, myalgic encephalomyelitis (ME), atypical poliomyelitis, post-polio syndrome, chronic encephalomyelitis and ... chronic Epstein-Barr virus syndrome."  They continue, "the CDC named the illness chronic fatigue syndrome (CFS) and created a U.S. case definition in 1988.  That case definition was
refined in 1994 by an international consensus group, and it is this definition, commonly called the Fukuda definition, that forms the basis for most current research in the U.S."  "However," they write, "there are other case definitions, including the Ramsay definition, the first true case definition, which was developed in England in 1981; the London criteria of 1992; the Australian case definition; and the 2004 Canadian consensus definition."

While I commend the authors for including the problem of varying definitions, I am somewhat shocked at the implication that the Ramsay and Canadian definitions referred to  "CFS".  They did not.  Ramsay defined "M.E.", the Canadian consensus document defined "ME-CFS."  Perhaps the authors had intended to link Dr. Ramsay with the term "M.E.",
and an editor clipped the connection.  Whether accidental or intentional, however, the omission of the name "M.E." when referring to Ramsay is significant.

Ramsay died in 1988, but not before he had a chance to publish a letter to the Lancet in July 1988, responding to a letter by Andrew Lloyd to the Lancet in June 1988.  The Lloyd letter had suggested alternatives to the name "M.E.", namely "post viral fatigue syndrome" and "the chronic fatigue syndrome."  Ramsay stated that these were not acceptable substitutes, writing that thirty years of working with M.E. had left him convinced that "the clinical features derive from either the myalgic or the encephalitic component" - that is, either muscle pain or encephalitis-like symptoms.  In other words, Melvin Ramsay not only never HAD a definition for CFS - he actively disapproved of the sudden appearance of the phrase  "Chronic Fatigue Syndrome".

While the term "M.E." is actively discouraged in the United States, it remains in common usage in Great Britain, after fifty years.  Other nations use it as well.  It was the stated intent of the authors of the Canadian consensus document to use both M.E. and CFS in defining a clinical diagnostic criteria, as both terms are in use today in Canada.  Hence, they used ME-CFS:  They strove for "consensus."  The Canadian government has adopted both the name
"ME-CFS," and the 100-page consensus document for the purpose of clinical diagnosis.

The Chronicle issue contained another essay called "Across the Pond," by a board member of the newly renamed International Association for CFS (formerly the American Association for CFS).  Once again, research from the UK is mentioned as if it was research into "CFS".  Either the author intended to exclude all research using the term "M.E." or M.E. research has
been inappropriately renamed.  While I am somewhat relieved that the latter seems to be the case, I cannot condone the pretense that research is not currently being conducted in the UK under the name "M.E."  Why is this important?

As long as Americans (and others) perceive the term "M.E." to be lost in history, research conducted under that name is lost to patients, researchers, medical practitioners, and the public in general.  Furthermore, the term "CFS" as used in the UK resembles most closely the
definition for "chronic fatigue" as used by the U.S. CDC, not the CDC's definitions for Chronic Fatigue SYNDROME."

Finally, the same Chronicle research issue dedicated a large sidebar to Peter White of the UK, who uses the term "CFS".  He wrote approvingly of "graded exercise therapy."  On the same page, as part of another article on treatment, no fewer than four American doctors noted that the British version of "CBT" is unhelpful at best, harmful at worst.  The resulting confusion could have been avoided had readers been informed of the differences between White's perception of "CFS" and the current U.S. CDC usage of "CFS".  Bluntly speaking, though using the same name, the researchers were referring to different medical conditions.

To have included a British researcher who uses the term "CFS" (under a different definition than that used by the U.S. CDC), while excluding those who use the term "M.E.", distorts the picture of current research overseas.  It seems a pity that researchers such as Hooper, Vance, and Hyde were omitted, while White was included.  Psychiatrist Simon Wessely, the chief proponent of the British version of "CFS" as a "somaticization disorder," is currently under investigation in Parliament (the Gibson Inquiry) for unethical behavior.   British Parliament, one might note, still recognizes the term "M.E."  Whatever a patient organization believes about the viability of a name in the long run, accuracy requires that the name be included when discussing research.  Furthermore, accuracy also requires including the name when
discussing research internationally.

One would think it goes without saying that if Ramsay used the term "M.E." when defining the disease, any definition of the disease using his name should refer to the term "M.E."  It may be necessary to explain the connections - and disconnections - between different names, but the added information cannot possibly be harmful.  The intentional EXCLUSION of information, on the other hand, is always harmful.  Some may hold the personal belief that the name "M.E." will one day die out.  Some may believe that the use of "M.E." at all invites acrimony deriving from past disagreement over the appropriate name to be used in the United States.  Neither of those considerations matter in this instance.  The only considerations to be taken into account when describing research are accuracy and inclusivity.

I would hope that the CFIDS Association would act to correct the misperception that they support the use of the term "CFS" in the UK, but not the use of the term "M.E."  I would also hope that they would include "M.E." researchers in further discussions of international research, and when doing so would explain what "M.E." is. 

Mary M. Schweitzer, Ph.D., and M.E. patient.

Lobby Day 2006

www.cfids.org

We want YOU to join us in Washington, D.C. on May 8-9 for the CFIDS Association of America's 14th Lobby Day on Capitol Hill. This year's event is extra-special because we'll be introducing members of Congress and their staff to the CFS awareness campaign http://www.cfids.org/cfidslink/2006/pac.asp, in addition to talking with lawmakers about funding for research and treatment centers, disability and education issues.

May 8: Training Session

On the afternoon of Monday, May 8, a mandatory training session will prepare all lobby day advocates for meetings on the Hill. Tom Sheridan, the Association's Washington, D.C., government relations advisor since 1992, will lead the session. He'll provide background on current federal priorities and up-to-the-minute issues that may affect discussions with members of Congress and actions they commit to take. Tom's associate, Michelle Nawar, will brief participants on the legislation we'll be trying to impact and how Capitol Hill staffers might use the information advocates present during these meetings. Kim McCleary, the Association's president & CEO, will describe how advocacy drives other initiatives important to the CFIDS community and will review talking points and congressional requests. You'll also hear from veteran lobby day participants about what to expect and will practice new skills with the people you'll be grouped with for appointments the next day.

First-time advocates will be matched with veteran lobby day participants or Association staff for their meetings on the hill. By the end of the session all advocates will feel confident with their messages, comfortable with Capitol Hill and secure in their right to be heard.

May 9: Lobby Day

When registering, advocates choose whether they prefer morning or/and afternoon appointments and whether they wish to do a heavy schedule or one that's light. The Sheridan Group and the Association schedule all Hill meetings, targeting members of Congress who serve on committees that determine medical research funding and set health policy. We also reach out to newer members of Congress and those who represent lobby day advocates. In recent years advocates have met with a total of 70-85 key legislators on this single day – a major achievement for the CFIDS community and personally rewarding to the individuals who take part. We celebrate the victories large and small with a reception that evening, also a chance for advocates to share experiences and form or renew friendships with others committed to the cause.

Please consider joining us for this year's event. We recognize that for many people affected by CFIDS, limitations imposed by health, strained finances and other responsibilities make it impossible to consider traveling to Washington, D.C., so we are extremely grateful for the efforts and sacrifice that participants make to take part in this experience. As the date approaches, we'll have a "virtual lobby day" through CFIDS Link and our Grassroots Action Center http://capwiz.com/cfids/home, enabling those who can't be with us in Washington to augment the impact of what advocates are able to accomplish in person on Capitol Hill.

For further details or to register, visit http://www.cfids.org/advocacy/Lobby_Day_2006_Info.pdf our lobby day packet, send a message to LobbyDay@cfids.org or call the Association's Resource Line at 704-365-2343. The deadline for registration is Monday, April 17.

Walkathon

At the meeting members were encouraged to watch for information about the Walkathon.  At this time, it appears that this event may not be held this year due to health issues in the family of the organizer.  If the event is re-scheduled, we will send information as it becomes available.

For Friends and Family

http://www.cfids.org/resources/for-those-who-care.asp#Symptoms

Living and coping with CFS can be a challenge for both patients and their families.  The CFIDS Association of America has a wealth of information on their website.  At the link above can be found a document “Family and Friends: For those who Care”.  It is hoped that it will be a helpful tool…”for those who care”.

Exciting Info  http://www.cfids.org/cfidslink/2006/pac.asp

National CFS Public Awareness Campaign to Launch This Summer

We have some very exciting and important news to share with you. The CFIDS Association will be launching a $4 million public awareness campaign on Chronic Fatigue Syndrome this summer. The campaign is so exciting because we finally have the chance to mount a national, concerted, multifaceted campaign to educate both the general public and health care professionals about CFS. The public awareness campaign will extend for more than a year, starting with a launch event at the National Press Club in Washington, D.C., in June that will include a satellite media tour accessible not only to the media, but to the patient community and general public.

Primary funding for the campaign has been provided by the Centers for Disease Control and Prevention (CDC). The funding came from the health marketing arm of the CDC, leaving their CFS research budget intact. The CFIDS Association was selected as the contractor to implement the campaign. To help with the campaign, the Association hired two of the country's top PR firms, Fleishman Hillard and GMMB, which both have considerable experience with national health marketing campaigns. Both agencies are involved with research, strategic planning and creative development of campaign components.

This is an integrated marketing campaign that includes a broad array of components, including:

• a launch event at the National Press Club in Washington, D.C.
• full-page color print ads in selected national magazines
• online banner ads targeted both to consumers and medical professionals
• TV, radio and print public service announcements
• traveling CFS photography exhibit of the “faces of CFS” taken by fashion and celebrity photographer George Lange
• stories about CFS in national and local print, broadcast and online media
• partnerships with medical organizations to educate health care professionals about the illness
• an educational website
• printed and downloadable materials for CFS patients, the public and medical professionals
• partnerships with other organizations and support groups dedicated to the fight against CFS

This campaign has the potential to ignite renewed interest in CFS and spark increased understanding about the illness among the general public, health care professionals, legislators and the media. The campaign also has the potential to increase research funding for CFS from federal, biotech and pharmaceutical sources over the next decade.

For that potential to be fully realized, it will take the combined efforts of the CFIDS Association, individual patients, support groups and other organizations dedicated to the fight to conquer this illness. 

We invite you to join us in this historic campaign. Please respond to our Action Alert and thank CDC's leadership for funding this campaign. Look for more campaign details and ideas on how you can become involved in the April CFIDSLink and the spring issue of the CFIDS Chronicle . Every single member of the CFS community has a role to play. You can help us illuminate how devastating CFS really is and help ensure the success of this much-needed public awareness campaign.     

NJCFSA Conference
Each year the NJCFSA (our parent organization) has presented conferences in the spring and fall of each year.  Much to the disappointment of the Board of Trustees, the spring conference did not occur.  The singular reason was the lack of a committee to organize the event.  The fall conference is now in the planning phase.  The date has tentatively been set for Sunday October 22^th.  Judy Machacek has compiled the following committee list in an effort to share the work.  If you might be able to help in any way, Please contact Judy (judymachacek@msn.com  or 201-836-7391).  We all know that we manage our illness best when we share the load.

Conference Project for Sunday October 22, 2006.

Registration: of Attendees

Coordinator: to work with Hospital and Hotel, re: room and food arrangements

Brochure: creation/design and distribution

Equipment :coordination of equipment needs for speakers, etc.

Video capture: find inexpensive service or student to DVD record and edit conference

Advertising:  Obtain advertisers, and notify newspapers, etc.

Mailing and Distribution: Attach labels and stamps, hand out to other prospective attendees

Exhibitors: Find exhibitors to pay to be at Conference for a fee

CFS Exhibit Support:  Work with Pres. Peg Walk to hand out CFS brochures, etc.

Printed Materials: Work with speakers to prepare handouts: and agenda for meeting

Day of Conference Coordinators:  help with speakers, registration, etc.

There will be several people on each committee and no one will be asked to work alone or without assistance from me. Thanks to all in advance.   Judy

Next Meeting

The next scheduled meeting will be on Sunday May 21st .  THERE WILL BE NO APRIL MEETING since the meeting coincides with Easter and Passover.  See you in May.

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 Group Leader Anne at annielaurie617@yahoo.com.  Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.