Living with Fibromyalgia, DVD prepares for debut in U.K.

Josephine Fisher reports to FMS Global News that the DVD, “Living with Fibromyalgia” is preparing to make it’s debut in the U.K. this week. The Fibromyalgia Surrey-Sussex support group previewed the new DVD on Monday, February 26th. “As a group we will be previewing the DVD at our 26th February meeting and then launching it officially down in Sussex and Surrey for World Fibromyalgia Day on 11th May the day before 12th May the official world fibromyalgia awareness day.

We will be screening it at other venues throughout May. We are also encouraging our members to do their bit too, by purchasing a dvd and showing it to friends, family and their health care professionals. It would be amazing to see screenings going on all through the U.K. of this DVD by groups and also by individuals showing it at coffee morning, etc, etc. I am sure we could get a lot of media coverage from this.”

If you would like a copy please can you send a cheque payable to FMS-SAS for £10-99 which includes postage and packing.

To : Mrs Jo Fisher 14 Singleton Road Broadbridge Heath Horsham West Sussex RH12 3NP

If you require multiple copies please can you ring the helpline at
01403 255450 from 10am to 4pm Monday to Friday.

Orphanet, a consortium of European partners, currently defines a condition as rare if it affects 1 in 2,000 persons. While Orphanet has in the past, shown fibromyalgia to affect 1 in 73, or 1.36% of the population, current research conducted by the University of Michigan, under the supervision of Dr. Daniel J. Clauw, shows that fibromyalgia is prevalent in as many as 2-4% of the world’s population. Fibromyalgia should no longer be considered a rare condition as it can affect as many as 1 in 25 people.

May 12th. is “International Fibromyalgia Awareness Day”, and this year promises to be extraordinary. Projects like “Fibrohugs” worldwide awareness quilt and the DVD, “Living with Fibromyalgia” are attracting the attention of a global audience. Both of these projects are raising funds for clinical research while promoting awareness on a global scale.

FMS Global News

Tenderpoints

Disclaimer
The information contained in this article does not necessarily infer endorsement by Fibromyalgia Support Group for Surrey and Sussex, Registered Charity No. 1108454. Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The Fibromyalgia Surrey and Sussex Support Group and other contributors shall not be held responsible for omissions and/or errors.

Global Fibromyalgia Awareness Quilt

The members of Fibrohugs have been very busy lately. Fibrohugs is a global support and awareness website for people with fibromyalgia and chronic fatigue syndrome and has something for the entire family.

This week Fibrohugs announced a “Global Fibromyalgia Awareness Quilt.” Some squares for the quilt have already arrived from Australia, as well as the US and Canada. Soon they will start coming in from the UK and all around the world. We are asking for people with fibromyalgia and groups to get involved with this project.

From Tenderpoints

Worldwide Fibromyalgia Awareness Quilt Project

This is a Worldwide action call for squares needed to create a Fibromyalgia Awareness Quilt. What an awesome Awareness tool for the Fibromyalgia Community to use. This quilt will be advertised throughout the World as a recognized Fibromyalgia project where the patients refuse to sit back idle and accept a life of silent pain.

This quilt will have the personality of Fibromyalgia patients around the globe and have a massive impact on the spectrum of the disease. Please participate wherever you are. They have already received participation from as far away as Australia, awesome. Get yourself on this quilt as soon as you can, don’t miss out. Details of your participation are found below.

Your squares need to arrive by May 15th, 2007. If too many squares are received there will likely be more than one quilt created. The quilts are sewn as the squares come in so if you want to be included do it quick as they’re on a first come basis.

About your participation:

You will need a 13 inch x 13 inch square material of cotton/poly fabric, any color.  Make sure you leave a one inch border all the way around the fabric. This outside border is needed for sewing the pieces together. So when making your masterpiece remember to just use the inside 12 inch square because the outside 1 inch border will be sewn under and unseen.  Because this is a Worldwide project, and we want to express how wide spread the disease is, preference would be given to squares that have to do with where you are from. If you’re active on a certain Fibromyalgia web site, or sites, the name of that site and your Username would be good to have on there as well. Also, the year you were diagnosed with Fibromyalgia would be a good addition.

Embroidered or appliquéd would be the preference, but fabric paint is also ok.  (It just doesn’t hold up as well in the long run)  You can use any color, maybe your States/Prov color? Or the State/Prov colleges colors?  Just an idea!

As an example, one could take a silver fabric and put the outline of the state of Nevada on it, with a star where they are at, their Username and 1992 as the date they were officially diagnosed.  But this is not what you have to do. Variety and originality to make this a very unique and special quilt is what has everyone excited.

When completed the quilt will auctioned on the Fibromyalgia Awareness eBay page or raffled off at the Fibromyalgia Conference in May, 2008. 100% of the profits go toward Fibromyalgia Research with the Receipt posted on the Fibrohugs web site at http://www.fibrohugs.com to assure legitimacy.

Become part of History, get your square sent NOW!!

Thanks to everyone that is helping with this fundraising and awareness project!!

All squares are sent to:

Becky Schluter
P O Box 9022
Moscow, Idaho  83843

If you have any questions, please e-mail fibroebay@fibrohugs.com.  Becky will get back to you as soon as she can.  Also, if you have any other fundraising ideas, or questions, please let her know.
–
Regards,
Ken Euteneier
Fibrohugs Fibromyalgia Support
webmaster@fibrohugs.com
http://www.fibrohugs.com

FMS Global News

Doctor, do I have fibromyalgia?

There was a time when not much was known about fibromyalgia or chronic fatigue syndrome. At first it was dismissed as either the yuppie flu, or the “illness of the 90′s”, or simply treated as arthritis or fibrositis, myalgia or a small number of conditions, however, over the last several years some advanced clinical research into these illnesses have yielded some incredible results.
Medical science has determined that genetic factors are involved, and much of this research has lead to the patent office to get specific new drugs available as approved for use in these conditions.

In the past, doctors didn’t know how to treat these illnesses, or even what was causing the patients symptoms. The patient looked fine, there were no diagnostics tests that revealed any underlying cause of their symptoms. These were trying times for both physician and patient alike.

Today, existing research has made available not only a much greater understanding of these conditions, but has lead to new drugs specifically for these illnesses that will be available in the near future.

Dr. Daniel Clauw, at University of Michigan Medical Center tells FMS Global News that “it is likely that in the next few years that there will be 3 – 4 drugs specifically approved for fibromyalgia – now there are none.

With some modest training, most health care providers can easily diagnose fibromyalgia.  It’s treating it that they often struggle with, and the new drugs as well as education campaigns that will accompany the drugs, will be very helpful in this regard.”

Dr. Clauw is Professor of Rheumatology at University of Michigan, and a well known pioneer in fibromyalgia clinical research. Additional research is being done in Canada, and the UK.

Looking to the future, diagnosing and treating these life changing, and life altaring illnesses, may be more managable for both the patient and the physician.

FMS Global News is prepared to interview these drug companies and bring you a special report on our findings.

FMS Global News

Tenderpoints

Fibromylagia, chronic fatigue, and adult attention deficit hyperactivity disorder in the adult: a case study.

This afternoon FMS Global News conducted an interview with Dr. Joel L. Young, M. D. Dr. Young and his staff at the Rochester Center for Behavioral Medicine, in Rochester Hills, Michigan, are involved in some pioneering new clinical studies that are helping the medical community further understand the relationship between chronic pain and the role the brain plays in processing pain information.

“In an outpatient psychiatric clinic, a number of adult patients who presented primarily with symptoms of ADHD, predominately inattentive type, also reported unexplained fatigue, widespread musculoskeletal pain or a pre-existing diagnosis of CFS or FMS, said Dr. Young.

As expected, ADHD pharmacotherapy usually attenuated the core ADHD symptoms of inattention, distractibility, hyperactivity, and impulsivity. Less expected was the observation that some patients also reported amelioration of pain and fatigue symptoms.

The utility of ADHD medications in FMS and CFS states may be their innate arousal and enhanced filtering properties. This model supposes that FMS and CFS are central processing problems rather than peripheral disorders of muscles and joints.”

Dr. Young tells FMS Global News that in the past, a patient with fibromyalgia or chronic fatigue syndrome might be reluctant to consult with the psychiatric community. It is very clear today say’s Dr. Young, that these chronic conditions are very real, and the symptoms are often overwhelming and life altering for the patients. One of our goals is to help restore the quality of life for these patients. Research results show that a multi-disciplinary approach can often be the patients best option for treating these illnesses.

One area of research Dr. Young would like to see develop, is a better understanding of the role the central nervous system plays in these illnesses.  A number of clinical research studies indicate that fibromyalgia for instance, may be a disorder that involves the way pain is processed in the brain, rather than a disorder involving the muscles and joints where the patient feels the pain. Understanding how the brain and central nervous system work together in this process may provide new answers and methods of treatment.

Reference: PMID: 17285103

Rochester Center for Behavioral Medicine

441 South Livernois Suite 205

Rochester Hills, MI 48307

General Phone: (248) 608-8800

Clinical Trials Program: (248) 608-8800 ext 64

If you are interested in learning more about our current research trials, please contact Karen Azar, MSW at (248) 608-8800 ext. 64 or Kathy Tessmar, LLMSW at (248) 608-8800 ext. 61.

-The 2007 Michael Golds Conference will be held at OCC’s

Orchard Ridge campus on October 5, 2007. Dr Young will

focus his lecture on adults with ADHD. Using case studies

of real patients, Dr. Young will describe core ADHD symptoms,

common comorbid ADHD conditions such as anxiety, depression,

substance use, chronic fatigue and pain, and explore the

impact of the syndrome as it relates to work, family

relationships and physical health.

FMS Global News

Fibromyalgia, The Silent Epidemic

Two weeks ago, FMS Global News interviewed Dr. Daniel J. Clauw, Professor, Department of Internal Medicine, University of Michigan Health System.

During the interview with Dr. Clauw we asked about the prevalence of fibromyalgia on a global scale. Dr. Clauw responded that ” the prevalence of fibromyalgia is remarkably consistent at 2 – 4% of the population, in different countries, cultures, and socioeconomic situations.”

What this means is that fibromyalgia can affect as many as 1 in 25 people on a worldwide basis.

We also learned during the interview with Dr. Clauw, that fibromyalgia and related disorders can be inherited. Dr. Clauw stated “there is overwhelming evidence that the tendency to develop fibromyalgia and related disorders is inherited. People with fibromyalgia are 8X more likely to have a close relative with fibromyalgia than people without fibromyalgia.”

We learned that once a person develops fibromyalgia they rarely recover from it. Dr. Clauw reporting that “once people develop full-blown fibromyalgia, this is usually something that they’ll have forever.  This is actually no different than most chronic medical conditions.”

John Ernst, media representative for FM-CFS Canada tells FMS Global News that the recent report by Stastics Canada stating 393,000 Canadians have fibromyalgia is short by at least half. John stated that the Statistics Canada numbers recorded how many doctors had diagnosed the illness. The problem said Ernst, is that many doctors deny the illness is real, while most haven’t yet learned how to diagnose or treat the illness.

Dr. Clauw agrees that education campaigns for health care providers would be of great benefit in future diagnosis and treatment, telling FMS Global News that, “with some modest training, most health care providers can easily diagnose fibromyalgia.  It’s treating it that they often struggle with, and the new drugs as well as education campaigns that will accompany the drugs, will be very helpful in this regard.”

Dr. Clauw Interview

John Ernst Report

FMS Global News

 

FIBROMYALGIA SUPPORT GROUP FOR SURREY AND SUSSEX

THE FIBROMYALGIA SUPPORT GROUP FOR SURREY AND SUSSEX &
THE SUSSEX & KENT ME/CFS GROUP INVITE YOU TO ATTEND

On Monday the 26th February the Fibromyalgia Support group and the Sussex & Kent ME/CFS group welcome sufferers and families to a coffee morning where there will be speakers and a DVD shown for their interest.  We would also like to invite health care professionals or any other interested parties who feel they would like to attend.  This meeting is open to people in all areas of Surrey, Sussex, Kent and beyond.
One of our special guest speakers is from Israel; she is the spokesperson for an  Israeli non profit organization and she will be discussing the programme they follow for ME/CFS and Fibromyalgia and how she herself has improved her
own quality of life.
The DVD showing at this event will be “Miracles, Medicine and ME: A Practical Guide to Living with ME, CFS, PVS and FM”.  (see below for full titles)
This is a 38-minute film, written, directed and filmed by a doctor who has lived with ME for over 40 years and now has it under a high degree of control. The event is being held at the The Millenium Hall Crawley Road Roffey Nr Horsham West Sussex RH12 4DT.  It will start at 11.00 am and finishes at 3.00 pm.  Refreshments will be available.
This should be an interesting event and one where you can meet others and discuss things and to also find out information about your condition and the two support groups who have organised the event on your behalf.
Please support this event as this will encourage us to do more in the future for all ME/CFS & Fibromyalgia sufferers.
The audience will include committee of both support groups and hopefully some specially invited guests.

Acronyms:
ME = Myalgic Encephalomyelitis
CFS = Chronic Fatigue Syndrome
FM = Fibromyalgia
PVS = Post Viral Syndrome

 Jo Fisher

Website  www.fibromyalgia-south.com

Interview with Dr. Daniel J. Clauw, University of Michigan Health System. Professor, Department of Internal Medicine. Rheumatology.

FMS Global News: Dr Clauw, thank you for taking the time to
participate in this interview.  Could the recent genetic findings
involving fibromyalgia and chronic fatigue syndrome be inherited?

Dr. Clauw:  Yes, there is overwhelming evidence that the tendency to develop fibromyalgia and related disorders is inherited. People with fibromyalgia are 8X more likely to have a close relative with fibromyalgia than people without fibromyalgia.

FMS Global News:  What percentage of people afflicted with fibromyalgia actually recover from the illness?

Dr. Clauw:  We don’t have a good figure.  We know that about half
of people in the community who develop chronic widespread pain have this go away, but once people develop full-blown fibromyalgia, this is usually something that they’ll have forever.  This is actually no different than most chronic medical conditions.

FMS Global News:  Has your research lead to any data that can be used to create new medications, and if so, when would you expect those medications to become available to the public?

Dr. Clauw:  Our research has not directly led to
any new medications, but we have helped work with many companies that are developing new drugs for fibromyalgia.  It is likely that in the next few years that there will be 3 – 4 drugs specifically approved for fibromyalgia – now there are none.

FMS Global News:  Are there any plans for developing a simple
diagnostic procedure?

Dr. Clauw:  No, but with some modest training, most health care
providers can easily diagnose fibromyalgia.  It’s treating it that
they often struggle with, and the new drugs as well as education
campaigns that will accompany the drugs, will be very helpful in this regard.

FMS Global News:  Your last press release stated that 2-4% of
americans are afflicted with  fibromyalgia, would you expect similar
findings on a global basis?

Dr. Clauw:  Yes, the prevalence of fibromyalgia is remarkably
consistent at 2 – 4% of the population, in different countries,
cultures, and socioeconomic situations.

FMS Global News:  What can fibromyalgia and chronic fatigue sufferer’s look forward to in the area of future research?

Dr. Clauw:  I think the future is very bright, though there is
significantly more work ongoing in fibromyalgia than CFS.

FMS Global News:  Once again Dr. Clauw, thank you for taking the time to participate in this interview, and a special thanks to Katie Gazella at the University of Michigan public relations department for setting up this interview.

Dr. Clauw oversees a multidisciplinary group that performs both
mechanistic studies and clinical trials in overlapping conditions
characterized by chronic pain and fatigue, including fibromyalgia,
chronic fatigue syndrome, and Gulf War Illnesses. Dr. Clauw has been the P.I. of NIH and Department of Defense grants studying this spectrum of illness continuously since 1994.

The Center currently has several million dollars per year in federal funding to study these disorders. Dr. Clauw and his group have been instrumental in establishing that the systemic conditions noted above, and regional pain syndromes such as interstitital cystitis, low back pain, and irritable bowel syndrome all have common pathogenic and clinical features. One of the primary areas of interest of his group has been in studying sensory processing in these conditions, and in demonstrating that many patients with these conditions have a widespread disturbance in pain processing. Current work is establishing the nature of the central pain processing abnormality in these conditions, using a variety of approaches, including functional MRI. Dr. Clauw also directs the Center for the Advancement of Clinical Research (CACR) at the University of Michigan. The CACR provides infrastructure and support for clinical and translational research for the Medical School from protocol development through subject recruitment, performance, and monitoring of study conduct, to data management and analysis.

Degree:  M.D., 1985, University of Michigan
Residency:  1988, Georgetown University Medical School
Fellowship:  Rheumatology, 1990, Georgetown University Medical Center

Certifications: 
1988, Internal Medicine
1990, Rheumatology

Faculty Appointment Date:  4/8/2003

Academic office address Domino’s Farms
24 Frank Lloyd Wright Drive
Room Lobby M
Ann Arbor, MI 48106-385
Academic office telephone:  (734)936-5561
Academic office FAX:  (734)615-5308

Information supplied by the University of Michigan Department of
Internal Medicine.