Charlotte CFS/ME/FM Support Group Newsletter
for November 30, 2009
Hi Everyone,
Our next meeting is our annual Christmas party on December 17th from 7PM to 9PM. We each "try" to bring something but if you can't, come anyway. We always have plenty to eat. If there's something special you need in food or drink, you might want to bring that. The members of the support group board will be bringing the paper goods, utensils, table cloths, etc. and various types of beverages.
Our Santa, Dr. Lapp, always plays the piano and we have a singalong. If you don't sing, you can listen and visit with others there. Its a great time to get acquainted, discuss doctors if you are looking for one, or whatever. We always have a wonderful evening. We don't exchange gifts because we know its very difficult for many because of limited resources.
Here's the info on where we meet if you haven't been to a meeting in a long time:
Sharon Presbyterian Church, 0.8 miles south of South Park Mall; Sharon Presbyterian Church is located 0.8 miles south of SouthPark Mall on Sharon Road. Use the entrance closest to the mall. We meet in the Charles Little Activity Building (or CLAB), which is the brick building at the rear of the parking lot.
As you come into the building, go into the first door on your right. This is the Parlor of that building where we have our meetings.
NOTE: Please do not wear perfumes/scented anything as some of our members are highly sensitive and can become very ill from the fumes.
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How a Little Pocket Money can Help ME/CFS Research
http://www.pocketmoneyfund.org/
By Nancy: Obviously there are those who don't have the $10 in their pocket that Dr. Klimas talks about at this web site. However, they may know someone who does. Every little bit helps. The bottom line is that if we don't help ourselves, it will take longer for us to get what we need for diagnosis and treatment. The true cause may take longer, but what we desperately need is enough knowledge to help people feel better - to get closer to leading a normal life and for those most seriously ill - to get them out of bed and out of their houses for the first time in years.
What Do You Want to Say to the CAA?
Someone involved in a conversation with Brian Smith, board member of the CAA would like to know what we want to say to the CAA. Brian Smith has been aware of our growing dissatisfaction with the organization, and wants to know what he personally can do to help.
He has stated that he is not speaking for the CAA, just for himself.
I suggested that we take a poll on what people are unhappy about and would like to see done differently, and that perhaps he could take the results of that poll to his next board meeting.
So, what do you want to say to him?
http://cfsuntied.com/blog1/2009/11/22/what-do-you-want-to-say-to-the-caa/
Calendar to Benefit ME/CFS
Someone wants to make a calendar with funny cartoons with proceeds going to the WP Institute. If you have an artistic talent for cartoons, check this out.
http://www.cfsuntied.com/calendar
From Co-cure
Date: Mon, 16 Nov 2009 22:47:44 -0600
From: Tate Mitchell <tatemitchell@GMAIL.COM>
Subject: NOT: 'Retroviruses'
book by Coffin, Hughes, Varmus available online
A member of the
DailyStrength forum, judderwocky, posted a link to
this. If you can to read it, from what I can tell it's an online
edition of 'Retroviruses' by Coffin, John M.; Hughes, Stephen H.;
Varmus, Harold E.
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=3Drv
It looks like there's other books as well, although it looks like
different books allow different levels of how much you can read of
them, which kind of makes them commercials and not books-
http://www.ncbi.nlm.nih.gov/sites/entrez?db=3Dbooks
Retroviruses
Subject Area(s): Viruses; Cancer and Oncogenes; Molecular Biology
Edited By John M. Coffin, Tufts University School of Medicine; Stephen
H. Hughes, Frederick Cancer Research Facility, National Cancer
Institute; Harold E. Varmus, National Institutes of Health
Dr. Oz Wants ME/CFS
Patients Willing to Share Their Story on TV
The Dr. Oz
Show web site is asking for persons diagnosed with CFS who would be willing to
share their story on national TV (http://doctoroz.com/plugger?tid=1465).
I sent an e-mail to the show stressing the critical importance of distinguishing
between CFS and Chronic Fatigue. I also suggested Dr. Daniel Peterson and Dr.
David Bell as highly esteemed CFS experts who dealt with CFS outbreaks in their
communities during the 1980's who have continued to follow patients and study
the illness carefully. – F
Note: To see comments on this
subject, visit the message string in the
ME/CFS & FM Message Board.
The above article is from a recent issue of the ProHealth E-Newsletter at http://www.prohealth.com/em/EM111809C/index.cfm
Dr. Friedman's Testimony
If you didn't have the opportunity to view the testimony, here is the published transcript from ProHealth:
November 12, 2009
Following is a transcript of Dr. Kenneth Friedman’s testimony at the CFS
Advisory Committee Meeting Friday, Oct 30. Dr. Friedman is an active supporter
of increased medical education regarding ME/CFS. But, as he notes in this
testimony, his very position as
associate professor of Pharmacology & Physiology
at University of Medicine and Dentistry of New Jersey
is in jeopardy because of these activities.
Chronic Fatigue Syndrome
Education in the United States
Testimony for the Chronic Fatigue Syndrome Advisory Committee, Oct 30, 2009
by Kenneth J. Friedman, PhD
Treasurer of the International Association of CFS/ME
Director of Public Policy for P.A.N.D.O.R.A., Inc.
Scientific Adviser to Lifelyme, Inc.
Board Member & Chair, Medical Student Scholarship Committee, New Jersey
Chronic Fatigue Syndrome Association
Board Member, Vermont CFIDS Association
Good morning!
My name is Kenneth Friedman and I am a medical school professor. I have been
asked by the IACFS/ME to comment upon the status of Chronic Fatigue Syndrome
education in the United States.
Comments on the Academic,
Medical School Environment
The Director of the Office of Ethics and Compliance of my employer has informed
me that my off-campus activities related to CFS which include: testifying before
this Committee, serving on this Committee, providing continuing medical
education courses, establishing medical student scholarships and assisting with
healthcare legislation are not part of my responsibilities as a University
Professor.
I am told that I will be punished with a penalty as severe as termination of my
employment for these activities. I am not a unique target.
• Colleague Ben Natelson has left the same school.
• A different medical school has refused to permit access to their medical
students to discuss CFS or inform them of a medical student scholarship.
• A statewide health care provider, with no physician capable of managing CFS
patients, refuses to permit a CFS training session for their physicians.
The failure of the CDC to convince the medical-academic establishment of the
legitimacy of CFS, and the urgent need for its treatment, has created this
environment.
Comments on Medical Student
Education
High ranking officials of medical education have testified before this Committee
that they are powerless to control the curriculum of medical schools, and cannot
mandate the inclusion of Chronic Fatigue Syndrome in the medical school
curriculum.
• Were the CDC to mandate the reporting of CFS to the Federal Government, as it
does for other illnesses, the National Board of Medical Examiners would have no
choice but to put CFS questions on the National Boards.
• If CFS questions were to appear on National Board licensure examinations,
medical schools would have no choice but to include CFS in their curriculum.
I have appeared before this body on two separate occasions arguing for the use
of existing student programs within both the NIH and the CDC to rotate medical
students through NIH and CDC laboratories. I have pleaded for dialogue and
feedback on any of my proposals. I have heard nothing.
The only mechanism for medical student education for CFS is the medical student
scholarship programs run by patient advocate organizations. We now have programs
running in three states. How many scholarship programs must be mounted by state
patient advocate groups before the CDC mounts a single, national medical student
program?
Comments on Continuing
Medical Education for Physicians
To my knowledge, the CDC's on-line continuing medical education CFS course is
the only involvement of the federal government in healthcare provider education.
Does the CDC honestly believe that sitting in front of a computer screen for a
few hours will make a physician capable of diagnosing and treating CFS?
From the CFS Community's perspective, what is the impact of the on-line course
on diagnosis and treatment of CFS?
• From Vermont CFIDS Association: There is no increase in the number of
physicians who diagnose or treat CFS in this state.
• From New Jersey Chronic Fatigue Syndrome Association: The number of requests
for physician referrals to our helpline has not diminished.
Comments on Chronic Fatigue
Syndrome Educational Materials
In my opinion, all federal and private sector literature concerning Chronic
Fatigue Syndrome is out of date. There is no established mechanism for updating
health care provider literature.
Of the available literature, the most authoritative and accepted source of
information on Chronic Fatigue Syndrome is a physician's diagnosis and treatment
manual not produced by the Centers for Disease Control, not produced by the
National Institutes of Health, but produced by the New Jersey Chronic Fatigue
Syndrome Association -
The Consensus
Manual for the Primary Care and Management of Chronic Fatigue Syndrome.
I ask that this Committee recommend to the U.S. Secretary of Health:
• That a national diagnosis and treatment manual for CFS be created,
• That a panel be formed to write this manual,
• That the Department of Health and Human Services underwrite the expense of
producing and distributing this manual.
With regard to the recent Spark! Awareness Campaign and the accompanying
Physicians Toolkit,
not one patient in the State of Vermont ever saw the patient pamphlet. An
incredible waste of money!
Conclusions
The only on-going educational programs for medical students and physicians that
involve human contact come from patient advocate groups.
• Patient advocate groups are the current source of educational materials for
CFS.
• They rely on the assistance of academicians.
• If academicians are threatened with termination of employment for
participating in Chronic Fatigue Syndrome education, there will be no
educational programs.
I beg you to consider the magnitude of this problem.
I beg you to undertake a course of remedial action.
Thank-you!
_________
Karen Lee Richards - Wednesday, November 18, 2009
As chronic pain
patients, we dream of complete relief from pain. However, the sad fact for most
of us is that total freedom from pain is probably an unrealistic goal. If
that's the case, what then is a realistic goal? Just how much pain relief is it
reasonable to expect? And a perhaps equally important question is, what
outcomes other than a decrease in pain intensity are important to us? Read on:
http://www.healthcentral.com/chronic-pain/c/5949/95355/pain-relief?ic=6042
Finding a Fibro Doctor
I don't know if this doctor was included on the previous doctor list we had, but I was viewing Co-cure's good doctor list and saw his name and remembered him being mentioned at a previous meeting.
Remember.... we need your help in having a doctor list. All previous doctors (M.D.s) are now not taking new patients as far as I know. If your doctor is good, and by that I mean, he/she listens, cares, tries to help, even if not totally knowledgeable of CFS/FM or M.E. or the newly named XAND (XMRV), ask if we can put his/her name on our list for our group. Remember to tell them that the list goes no further than our members - but get their permission. Word of mouth is great, but we need a list because not everyone gets to our meetings.
If someone wants to volunteer to keep track of doctors names (word of mouth but not on a list), that would be wonderful, but I can't handle that responsibility.
Dr. Wheeler
Pain and Neurology
Charlotte Spine Center
Suite 210 Randolph Road
Charlotte NC 28207
Tel: (704) 333-8410
Chronic Pain News from Health Central
http://www.healthcentral.com/utils/newsweb/chronic-pain/news.html
From Co-cure via Karen Campbell
http://consults.blogs.nytimes.com/2009/11/24/expert-answers-on-chronic-fatigue-syndrome/
Southeast Pain Care has made a very generous donation to the American Pain Foundation! Southeast Pain Care, a division of Southeast Anesthesiology Consultants, is sponsoring the Dec. 3 performance of “Grease” at Ovens Auditorium in Charlotte, NC, and is giving $10 for every ticket sold to the American Pain Foundation. With 2,460 seats in Ovens Auditorium, the total donation will equal $24,600. The show starts at 7:30 p.m.
For more
information about the event, and a chance to win two tickets to the show, visit:
http://www.sepaincare.com/press-release/169-concert-event.html.
Southeast Pain Care
became familiar with the American Pain Foundation through the advocacy work of
NC Power Over Pain Action Network leader, Darisse Smith. Since taking on the
volunteer leadership position just one year ago, Darisse has worked tirelessly
to raise awareness of pain issues through September “Conquering Pain Together”
activities and media relations. To learn how you can get involved with pain
awareness and advocacy activities, visit:
www.painfoundation.org.
Thank you Southeast Pain Care for your generosity!
Finding Humor in Foggy Moments with Fibro and CFS
Help for Chronic Illness in Marriage
http://www.focusonthefamily.com/marriage/facing_crisis/chronic_illness.aspx
Happy Birthday Margaret Cannon
Margaret just celebrated her 88th birthday recently so we all got to enjoy it with along with some yummy cake at our October support group meeting. Margaret is Kebbie Cannon's mom. And Kebbie is our support group leader.
And many more Margaret.
Remember to "Click" for Breast Cancer and Other Charities
I hope to send you all a reminder just before the meeting but I'm getting a new computer soon and hopefully it will be up and running and everything working as it needs to.
So just in case....I want to wish you all a Merry Christmas and best wishes for a HAPPY NEW YEAR and better health to all.
God Bless,
Nancy Henson