Category Archives: Boston

Exciting news for Fibromyalgia Research!

MAKING MUSIC THE FIBROMYALGIA WAY

By Jeanne Hambleton © 2008

They say fibromyalgia runs in families, but my latest news shows that in one family both music and fibromyalgia research are excited about ‘Hard Times’.
Spanning three generations, a granddad (a very young one), two of his grandchildren and a nephew, are all involved in writing, playing and selling their music for their first CD ‘Hard Times’ to raise funds for research. They hope to find a cure for fibromyalgia for granddad and millions of other fibromyalgia sufferers through research at the University of Michigan, in Ann Arbor. Michigan.
Richard Lee (aka Rick Usher of FMS Global News), Justin (16), Autumn (10) and nephew Tim (29) have been busy in the studio laying down some tracks for their first CD that is dedicated to fibromyalgia and Gulf War Syndrome veterans.
Richard told me, “I am a musician with fibromyalgia and fibromyalgia research is one of the most important things I can think of to use the gift of music for. Where it will go from here I have no idea, but I am ready for whatever develops. These songs are free to download ahead of the CD release that will be in the very near future.
Richard said he had written most of the songs with the exception of Summer Time (a George Gershwin Tribute) and Tobacco Road (a tribute to John Laudermilk the author of the song, and “Simple Man” which is Tim’s contribution as well as a song he wrote called “Believe”.) – both great favourites of his.
“However these are my renditions of these songs and they are different from the originals by a significant degree. The rest are songs I have written and these will be available for fibromyalgia research funding soon on CD or by download,” said Richard.
The band is set up with Rick (Richard Lee) Usher, Lead and Bass Guitar, Vocals, Harmonica, Keyboards: Justin Usher, Keyboards, Guitar: Tim Upton, Guitar, Vocals. The newest member of the group is Rick’s granddaughter, Autumn (10) who is playing piano/keyboards.
Rick said, “After only one lesson she can pick out the melody of all my songs. I am 52, so we have a broad age range (107 years) and we are all related.
“The youngsters are thrilled to be helping me with my fibromyalgia and the research. It gives me a big kick to watch their enthusiasm and their support. They are great kids and I love them to bits for helping me. Their grandmother and their mother, who has FMS, are pretty proud of them too.”

For more information log on to
http://www.myspace.com/richardleeandhardtimes

FM FRESEARCH ACROSS THE POND
Conscious that fibromyalgia is reported to be reaching world wide epidemic proportions, Richard, hopes to introduce the first UK Fibro What CD for downloading when his own Cd is launched. Written and played by Dom Collins, an award winning comedy singer. Dom donated the music with three very funny backing tracks, to help fund UK research. Now the Fibro What CD is being sold ‘across the pond’ to support research funding in the UK. Log on to http://www.domcollins.co.uk/MYSPACE for more details.

PERSONAL HARD TIMES
I asked Richard to tell me something about his fibromyalgia and his driving force.
He said, “My fibro first began to be a major problem when I was about 24, so I have had fibromyalgia most of my life. I was an electronics engineer and finally in my 30′s had to give up my career. I had just bought a home to raise my family and had a new mortgage and I suddenly could not work anymore.
“Somehow with my wife’s support we managed to survive. Staying together and being close as a family is very important when you have fibromyalgia. My oldest daughter also has fibromyalgia, and her son Justin is part of the band.

OUR MUSIC
“The music we play is a bit of everything. Some is blues and jazz and folk and some good old rock n’ roll. I write songs about real life – what I have lived and learned.
“One song that is about my experience with fibro is called “Learning to dance in the rain”. I encourage anyone that has fibro and a MY SPACE website, to add this song to their profile. I’ll have a better version of the song up soon.

RESEARCH SUFFERS IN HARD TIMES
“I truly believe that research into fibromyalgia is at a stage where new discoveries are within our grasp. Sadly with the economic troubles we are all facing today, research funding is not keeping pace with the science we badly need to develop.
“I have met Dr. Daniel Clauw at the University of Michigan and want to support his fibromyalgia research. You may recall that Dr. Clauw was the one that proved fibromyalgia is not “all in our head” and his contributions to fibromyalgia research are well known worldwide.
“We originally planned a benefit concert at Hill Auditorium for Sept 21 of this year but with the economy the way it is corporate sponsors are a bit more difficult to find so the date will most likely be moved back unless we get a miracle. In my world miracles happen often.
“We will soon be producing a CD which will further help raise funds for research and will have a dozen or so songs on iTunes soon that will also benefit research.”
Since another artist already used my last name I go by my first and middle name with the band. Hard Times is the name of the band because everybody knows hard times.”

Congratulations on your achievements Rick, given you have fibromyalgia and a passion to find a cure. Well done to you and your young team. I hope lots of people like your music and help you build up a good fund for research. .
The group hope’s to add other venues and will consider fund raising for cancer research funding in the future’

Dear Editor,

This year we are helping to support the mission of the Arthritis Foundation by raising money and participating in the Arthritis Walk.

Our team Looking Good is walking in honor of Nancy Clay, BSN RN. She has taught us through experience and expertise. In addition Nancy has brought resources and speakers to us to help us learn how to help ourselves positively while living with our illnesses. We will be walking together at Freedom Park in Morganton, NC on September 22, 2007. Registration at 9:00am and walk at 10:00am. We’d love to have you join us!

Did you know that arthritis is the nation’s leading cause of disability and affects 66 million people? One in three adults and 300,000 children have arthritis or chronic joint pain, costing the U.S. economy more than $86.2 billion annually.

We have decided to make a difference. We are committed to raising $_ 1000_ to help prevent, control and cure arthritis. You can also make a difference by joining our team and walking with us or by donating funds to help us reach our goal. If you’d like to donate, please make your check out to the Arthritis Foundation and mail it to me at 118 Torrence Cir. NW, Lenoir, NC. Please note Looking Good Team on the for line. Thank you in advance for your support! Please call Lindy 828 754 2064 or Nancy for information.

Sincerely,

Looking Good Team Captain

Lindy Wilcox

“Love bears all things.” ICor.13:7
“God is good! All the time!”

Music Video Of the Day

FMS Global News

Tenderpoints

Fibromyalgia Support

Team Up to Fight Arthritis

FOR IMMEDIATE PRESS RELEASE

August 6, 2007 through September 22, 2007

Unifour Arthritis Walk¾ The Arthritis Foundation is seeking walkers of all ages to form individual or group teams for the Arthritis Walk. The Arthritis Foundation’s annual nationwide event that raises awareness and funds to fight arthritis, the nation’s number one cause of disability. Did you know that arthritis is the nation’s leading cause of disability and affects 66 million people? One in three adults and 300,000 children have arthritis or chronic joint pain, costing the U.S. economy more than $86.2 billion annually.

2007 Unifour Arthritis Walk – Morganton, NC
Alvin Daughtridge, Honorary Chair
of Fairfield Chair, Lenoir, NC
Saturday, September 22, 2007
Freedom Park (Independence Blvd. near Freedom High School, Morganton, NC
Registration: 9:00 a.m.
Walk Begins at 10:00 a.m.
Choice of 3-Mile or 1-Mile Walk Route.
Contact Davy Crockett at crockett@kicksradio.com or call 1-800-883-8806, ext. 106 for more information.

You may register online by visiting

http://www.unifourarthritiswalk.kintera.org or http://www.arthritis.org.

“Love bears all things.” ICor.13:7
“God is good! All the time!”

Music Video Of The Day

FMS Global News

Tenderpoints

Opioids for managing chronic non-malignant pain: safe and effective prescribing.

Kahan M, Srivastava A, Wilson L, Mailis-Gagnon A, Midmer D.
Addiction Medical Service, St Joseph’s Health Centre, Toronto, Ontario, Canada. kahanm@stjoe.on.ca

OBJECTIVE: To review the evidence on safe and effective prescribing of opioids for chronic non-malignant pain.

QUALITY OF EVIDENCE: MEDLINE was searched using the terms “opioid effectiveness” and “adverse effects.” There is strong evidence that opioids are effective for both nociceptive and neuropathic pain, but limited evidence that they are effective for pain disorder. There is little information on their effectiveness at high doses or on the adverse effects of high doses.

MAIN MESSAGE: Opioids should be initiated after an adequate trial of acetaminophen or nonsteroidal anti-inflammatory drugs for nociceptive pain and of tricyclic antidepressants or anticonvulsants for neuropathic pain. Patients should be asked to sign treatment agreements and to give informed consent to treatment. Patients should experience a graded analgesic response with each dose increase. Titrate doses of immediate-release opioids slowly upward until pain reduction is achieved, and then switch patients to controlled-release opioids. Most patients with chronic non-malignant pain can be managed with<300 mg/d of morphine (or equivalent).

CONCLUSION: Opioids are safe and effective for managing chronic pain.

PMID: 17279219 [PubMed - indexed for MEDLINE]

FMS Global News

Global Health Vision

Source

Tenderpoints

Prevalence of Interpersonal Abuse in Primary Care Patients Prescribed Opioids for Chronic Pain.

Balousek S, Plane MB, Fleming M.

Department of Family Medicine, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.

BACKGROUND: Interpersonal abuse is associated with clinical problems including chronic pain disorders. OBJECTIVES: The objective of this study is to describe 30-day and lifetime prevalence of emotional, physical, and sexual abuse found in men and women prescribed opioids for chronic pain.

DESIGN: Cross-sectional interview is the design of this study.

PARTICIPANTS: Patients, 1,009, currently prescribed opioids for chronic noncancer pain. They were recruited from the practices of 235 Family Physicians and Internists in Wisconsin. The most common pain diagnoses were arthritis, low back pain, headache, and fibromyalgia/myofascial pain.

MEASUREMENT: Data for this secondary analysis on rates of interpersonal abuse were based on 3 questions from the Addiction Severity Index (ASI) regarding 30-day and lifetime emotional, physical, and sexual abuse.

RESULTS: Forty-seven percent of women and 22% of men reported a history of lifetime physical abuse. Thirty -five percent of women and 10% of men reported lifetime sexual abuse. Binary logistic regression identified the following variables associated with lifetime physical abuse: female gender (RR 2.81, CI 2.01-3.94), age 31-50 (RR1.77, CI 1.30-2.41), Caucasian (RR1.67, CI 1.19-2.35), increased psychiatric symptoms as measured by the ASI (RR 2.14, CI 1.56-2.94), and lifetime suicide attempts (RR 3.98, CI 2.76-5.74).
CONCLUSIONS: This study reports prevalence of abuse in both men and women prescribed opioids for chronic pain in primary care settings. Subjects who report experiencing interpersonal abuse also report significantly higher rates of suicide attempts and score higher on the ASI psychiatric scale. Screening patients taking opioids for chronic pain for interpersonal abuse may lead to a better understanding of contributors to their physical and mental health.

PMID: 17641933 [PubMed - as supplied by publisher]

FMS Global News

Global Health Vision

Tenderpoints

SOUNDING OFF ABOUT FIBROMYALGIA AWARENESS WEEK

By Jeanne Hambleton© UK Fibromite

I know I am always going on about raising awareness and fibromyalgia and this is especially important as far as the UK Government is concerned. Although we have E Petitions allegedly for the eyes of the Prime Minister, asking for support for various aspects of fibromyalgia, I have my doubts as to whether these will actually achieved any funding for research or recognition for FM – oh me of little faith.

Two of the 4 E Petitions about fibromyalgia on the No.10 Downing Street website will end this month (August) and as a supporter I am hoping to receive comments from the No.10 Downing Street web team (almost certainly not the Prime Minister). I feel sure the Prime Minister does not have time to read all the E Petitions – too busy with his politics. I almost have the impression the E Petitions were designed to save the postman delivering hundred and hundreds of letters which someone has to open and read, although rumour has it the idea of E Petitions was thought to be a bad idea.

As a matter of interest my new E Petition is to help replace those that are about to expire and can be found at the following website. It only takes a minute to do and you will feel go you have supported us. PLEASE would you please sign? I need 1000 signatures before it will be considered – 2000 would be nice. Tell your friends and family PLEASE. I am not on commission!

http://petitions.pm.gov.uk/FIBROFUNDING/

But my reason for writing is other ways to raising awareness during Fibromyalgia Awareness Week.

For us here in the UK and possibly the world over, the 8th to 15th September is Fibromyalgia Awareness Week. We do still of course have another annual event on 12th May – World Fibromyalgia Awareness Day. If you did nothing on that day to further the cause, now is your big chance.

Yes you have guessed it. I am going to talk about doing your bit for this FM Week. Raising funds would be a plus but raising awareness is far more important. Not sure about you, but I am pig sick of people looking at me and saying, “Fibro what?” If you listen carefully you can hear them thinking, “Poor girl – I wonder how long she has to live?”

If you are going to dismiss that thought be sure to tell them, we may not die from FM but as sure as eggs are eggs we will live with the pain for the rest of our lives or until someone finds a cure. (That is why you are signing the E Petition!)

What can you do? I have made several suggestions below with varying amounts of effort, so no excuses please.

NOT TOO HARD WITH FAMILY HELP
Find everything you have in your home that refers to fibromyalgia and invite your friends and neighbours to a need-to-know coffee morning, or afternoon tea and cake (if you don’t do mornings!) You can talk about each item connected with FM, or ask how the last 10 years has been for each of your visitors. When it is your turn you can recall what you used to do and how disabled you are now. Remind them it is an invisible disability and although you look so well you feel so awful.
Keep it bright and light with a few funny fibro stories. This event could even provide you with a few fit helpers for the future if you stage a fund raising event for FM to help your local Support Group.

ARMCHAIR EFFORT
If life is a struggle and a coffee morning is all too much, you could start your own letter writing campaign. Here in the UK you could write to your MP or in the States try your Senator? The MP’s address will be in your local telephone book. If you cannot find it ring the local paper. If you are feeling inspired you could write to the Prime Minister himself – Gordon Brown PM, 10, Downing Street, London, SW1A2AA, or email his assistant james.bowler@hm-treasury.gsi.gov.uk. David Cameron can be reached at camerond@parliament.uk. I am guessing here but I would think that Sir Menzies Campbell could be reached using campbellm@parliament.uk

The mail address of most MPs is their surname followed by the initial and the address – for example the Health Minister Alan Johnson MP – his address is johnsona@parliament.uk.

If you are using snail mail send your letter to your MP at House of Commons, London, SW1A 0AA

For information about websites, biographies and email addresses search for your MP in alphabetical order at http://www.parliament.uk/directories/directories.cfm

If you do not know who your MP is try http://www.theyworkforyou.com/ and type on your postcode. This will produce a message box, so have our message ready to cut and pate into the box.

If you think you have written a good letter to the PM, the Health Minister and your MP about your FM appealing for Government support for research to find a cure, and speed up diagnosis, including details of your life as a person with an invisible disability – the symptoms – pain 24/7, chronic fatigue, sleeplessness, cognitive problems, IBS, RLS and all the other nasties – send a copy to the Editor of your local paper. Ask him to print it with the readers’ letters, adding your own comments about what you hope the PM will agree. It is a good idea to use bullet points for the symptoms (easier to read).

Now you are on roll! Why not send a copy to your local radio station and the regional TV station? You never know they just might wonder – like everyone else – exactly what fibromyalgia means.

GOING OUT TO THE PUBLIC
If you access to lots of fibromyalgia literature you could ask your local superstore manager if you can stand near the entrance one busy afternoon and hand out literature. If you have friends you could have a table and chairs with fibromites who can talk about the syndrome and maybe encourage anyone interested to join the Group.

EDUCATING STUDENT DOCTORS
By now you should be full of confidence and really ready to go anywhere to tell your story. Contact you local PCT – Primary Care Trust (details in your local telephone book) – who are responsible for the hospitals and doctors in your area. Ask if you could talk to a class of student doctors about fibromyalgia from a patient’s perspective? You could answer their questions and help them become more knowledgeable about diagnosing FM for future patients. You would indeed be raising awareness by doing this, as so many GPs believe it is all in our head. The Fibromyalgia Association of the UK, http://www.fibromyalgia-associationuk.org, has prepared literature for the medical profession. I believe the American NFA – http://www.fmaware.org – also had medical literature for doctors.

Yes we now believe it is all in our head – but not as the GP suggests. Does your GP think it is in your imagination and that you are a mad malingerer? If so tell him it is now said that FM is due to a chemical imbalance in the brain.

My final thought would be to festoon your house or garden with balloons with a sign in the window saying “Happy Anniversary Fibromyalgia”. Someone is bound to ask you who is Fibromyalgia. Take a photograph and send it to the local paper with a caption saying you are celebration Fibromyalgia Awareness Week. I feel sure you will find this an uplifting experience and enjoy the fun. At the end of all this raising awareness you will feel you have achieved something by spreading the word – which as we know is FIBROMYALGIA.

Do write and tell me about your achievements – we can then have another go at more publicity for FM.

FMS Global News

Tenderpoints

Global Health Vision

The classification of fibromyalgia syndrome.

Müller W, Schneider EM, Stratz T.
Rheumatologische Forschungsabteilung, Weihermatten 1, 79713, Bad Säckingen, Germany.

As has been shown by a number of working groups, primary fibromyalgia syndrome does not represent a single clinical entity. It is possible to distinguish between a subgroup with high pain sensitivity and no associated psychiatric condition, a second and a third subgroup characterized by depression associated with fibromyalgia syndrome, and a fourth group with somatoform pain disorder of the fibromyalgia type. Mild inflammatory processes must be considered as the cause in the first group, while depression is combined with fibromyalgia in the second and the third group. In the fourth group, serious previous or still existing psychological problems or also insufficient coping with illness symptoms must be regarded as the reason for pain chronification. Group 1 benefits from a blocking of the 5-HT3 receptors by means of tropisetron, for example. This does not only affect pain chronification but also the inflammatory process itself. Group 2 and 3 needs antidepressant treatment, whereas the focus should be on psychotherapy in group 4. Groups 1, 2 and 3 will also profit from multimodal physical treatment programs, to a certain extent this applies to group 4 as well. So-called mixed types require a combination of therapeutic measures.

PMID: 17653720 [PubMed - as supplied by publisher]

FMS Global News

Tenderpoints

Source

Publication trends in chronic fatigue syndrome: Comparisons with fibromyalgia and fatigue: 1995-2004.

Friedberg F, Sohl S, Schmeizer B.
Department of Psychiatry and Behavioral Medicine, Stony Brook University, NY, USA.

OBJECTIVE: In order to identify publishing patterns in chronic fatigue syndrome (CFS), we compared the annual number of peer review articles for CFS, fibromyalgia (FM), and non-CFS fatigue over a recent decade (1995-2004).

METHOD: Citations were drawn from Ovid/Medline, PsychInfo, and the Journal of Chronic Fatigue Syndrome for peer review articles focusing on CFS, FM, and fatigue for each year of the decade ending in 2004. Statistics included chi-square, tests for differences in proportions, and regression-based curve estimation.

RESULTS: The frequency of CFS peer review articles did not significantly change from the first half to the second half of the decade (1995-2004). By comparison, the output of both FM and fatigue articles significantly increased (P<.0001). A quadratic model (inverted U shape; P<.02) best fit the data for CFS annual publication frequency. By comparison, exponential models best fit the data for both FM (P<.0001) and fatigue (P<.0001) citations. The highest percentage of citations (15-16%) for both CFS and FM fell within the domains of diagnosis, physiopathology, and psychology. For fatigue, almost one third (31.4%) of the citations were focused on etiology, while psychology (11.5%) and physiopathology (10.4%) articles were the next most cited. Based on first-author affiliation, CFS articles were most likely to originate in the United States (37.7%), England (31.4%), and the Netherlands (4.9%).

CONCLUSION: The output of CFS peer review articles has not increased over the past decade, while the number of FM and fatigue articles has increased substantially.

PMID: 17662750 [PubMed - in process]

FMS Global News

Tenderpoints

Source

Characteristics and healthcare costs of patients with fibromyalgia syndrome.

Berger A, Dukes E, Martin S, Edelsberg J, Oster G.
Policy Analysis, Inc. (PAI), Brookline, MA, USA.

Purpose: To examine the characteristics and healthcare costs of fibromyalgia syndrome (FMS) patients in clinical practice. Materials and methods: Using a US health-insurance database, we identified all patients, aged >/= 18 years, with any healthcare encounters for FMS (ICD-9-CM diagnosis code 729.1) in each year of the 3-year period, 1 July 2002 to 30 June 2005. A comparison group was then constituted, consisting of randomly selected patients without any healthcare encounters for FMS during this 3-year period. Comparison group patients were matched to FMS patients based on age and sex. Characteristics and healthcare costs of FMS patients and comparison group patients were then examined over the 1-year period, 1 July 2004 to 30 June 2005 (the most recent year for which data were available at the time of the study). Results: The study sample consisted of 33,176 FMS patients and an identical number in the comparison group. Mean age was 46 years, and 75% were women. FMS patients were more likely to have various comorbidities, including painful neuropathies (23% vs. 3% for comparison group), anxiety (5% vs. 1%), and depression (12% vs. 3%) (all p < 0.001); they also were more likely to have used pain-related pharmacotherapy (65% vs. 34% for comparison group; p < 0.001). Mean (SD) total healthcare costs over 12 months were about three times higher among FMS patients [$9573 ($20,135) vs. $3291 ($13,643); p < 0.001]; median costs were fivefold higher ($4247 vs. $822; p < 0.001). Conclusions: Patients with FMS have comparatively high levels of comorbidities and high levels of healthcare utilization and cost.

PMID: 17655684 [PubMed - as supplied by publisher]

FMS Global News

Source

Biology and therapy of fibromyalgia. Stress, the stress response system, and fibromyalgia.

Martinez-Lavin M.

National Institute of Cardiology, Juan Badiano 1, 14080 Mexico City, Mexico. mmlavin@infosel.net.mx.

ABSTRACT: Stress is a state of disharmony, or threatened homeostasis. A stressor could have a psychological origin or a biological origin. Societies have become more intricate with industrialization, and modern individuals try to adapt to the new defiance by forcing their stress response system. The main component of the stress response network is the autonomic nervous system. The present article reviews current knowledge on autonomic dysfunction in fibromyalgia. Sympathetic hyperactivity has been consistently described by diverse groups of investigators. Fibromyalgia is proposed to be a sympathetically maintained neuropathic pain syndrome, and genomic data support this contention. Autonomic dysfunction may also explain other fibromyalgia features not related to pain.

PMID: 17626613 [PubMed - as supplied by publisher]

1: Arthritis Res Ther. 2007 Jul 6;9(4):216 [Epub ahead of print]

FMS Global News

Tenderpoints

Source

Follow

Get every new post delivered to your Inbox.