A LETTER TO ‘NORMALS’

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

How many times do you feel guilty when you watch your family do jobs which you used to do without thinking about it? What is your reaction to that barbed comment, “No, you sit still. You said you don’t feel well!”

Yes me too – I want so much to do what I have always done but these days I am forced to look at the jobs and think maybe tomorrow I will feel better. In fact (tomorrow) Mother Mañana has become my middle name

I read an article about one fibromites who made the front page of her local newspaper because she told them she was dying to do her own washing up? Certainly a good angle for a story and it raised quite a bit of awareness, but that nevertheless does not stop you feeling isolated with your invisible disability.

Come to think of it, this could be a wonderful story for the local paper for International Fibromyalgia Awareness Day on May 12. Just imagine if all the local newspapers carried the story and talked about raising awareness, it is such a silly story we would even make television.

But I do try to look on the bright side of any situation and must admit I have met such pointed remarks with the comment, “Well, you know I had to drop out of the London Marathon and was very disappointed I could not do the skydive.” This usually brings a smile and clears the air. It helps if no offence was intended.

But recently someone sent me a copy of a letter written by Ronald J. Waller on behalf of his wife, for the website, www.fibrohugs.com, where it has been viewed almost 29,000 times.

It is a poignant letter that supports the need for understanding for fibromites and leaves the reader in no doubt that the writer is certainly suffering and under pressure.

The composer of this letter is Ronald J. Waller, who is a published writer and has his own website http://rjswritingloft.com.

He told me, “After watching my best friend, my wife, suffer from fibromyalgia I felt compelled to write, inform and continue to learn more about this demon that not only invades Carolyn’s life but also has affected all who are close to her.”

My thanks to Ronald for sharing this with us and thanks to Fibrohugs for allowing us to publish this.

LETTER TO NORMALS

Hello Family, friends and anyone wishing to know me,

Allow me to begin by thanking you for taking the time out of your day to spend time with me and to get to know me better. A person’s time is their most valuable asset and yours is appreciated.

I want to talk to you about Fibromyalgia Syndrome (FMS) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are mis-informed. Because of this judgements are made that may be incorrect…….So I ask you to keep an open mind as I try to explain who I am and how FMS/MPS has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see – a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I. You will not see my scars as you would a person who had suffered a car crash. You will not see my pain in the way you would a person undergoing chemo for cancer. However, my pain is just as real and just as debilitating. In many ways my pain may be more destructive because people cannot see it and do not understand……..Please do not get angry at my seemingly lack of interest in doing things. I punish myself enough I assure you. My tears are shed many times when no-one is around. My embarrassment is covered by a joke or laughter, but inside I want to die……..

Most of my ‘friends’ are gone, even members of my own family do not understand. I have been accused of ‘playing games’ for sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute. This is because the burning and pain in my legs or arms or both is so intense I cannot put my clothes on. I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

I feel like a child at times……just the other day I put the sour cream I had bought in the pantry instead of in the fridge. By the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to ‘lose’ the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the demon assaults me at every turn.. Please try to understand…………

Sleep, when I do get some, is restless. I wake often because the pain of the sheets on my legs is unbearable or because I twitch uncontrollably. I walk through many of my days in a daze with the fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that does not mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening. The next day or even in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say ’but you did that yesterday!’ ’What is your problem today?’ The hurt I experience at those words scars me so deeply that I have let my family down again, and still they do not understand……………..

On the brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandkids and shine when they give me a hug or ask me to fix their favourite toy. I am fun to be with if you will spend time with me in my own playing field. Is this too much to ask? I love you and want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do research for your latest project. Many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honoured I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals…..and this demon….Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that. I will be there in ways that I can. I will give all I can as I can. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatment, at least right now anyway…….Please understand……..

Thank you for spending your time with me today. I hope we can work through this thing, you and I…..I just need you to just try to understand that I am just like you……………………

For a small insight into the constant pain of a fibromyalgic lift your arm and squeeze the muscle just below your neck on the top of your shoulder, hard enough until it is uncomfortable. Then squeeze a little more and hold it for a few minutes if you can stand it. That is the pain we feel from the roots of our hair to the tips of our toes……………………..

Thank you for taking the time to read this, sorry if the pain experiment hurt’s, it does!! xxxxxxxx

Copyright of Ronald J. Waller and www.fibrohugs.com

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Chinese suffer aches and pains too

We like to complain about our aches and pains, but rheumatism is not only the preserve of western society. A comprehensive survey of rheumatic diseases in China, published in the open access journal Arthritis Research & Therapy, reveals that rheumatic complaints are also common in China. The survey suggests that the incidence of certain rheumatic diseases in the Chinese population is now becoming more like that of Western countries.

This latest survey is the first of its kind, using data compiled from 38 previously published studies covering over 240,000 adults from 25 provinces and cities. It shows that the prevalence of osteoarthritis (OA) in China is similar to other Asian Pacific and western countries. However, rheumatic diseases in the Chinese appear to affect different sites than that of Caucasian populations. The sites of complaint tended to be the lumbar spine, knee joint and cervical spine, whereas Caucasian populations tend to suffer OA more in the hips and hands. The prevalence of ankylosing spondylitis in China was also similar to Caucasians and similarly linked to certain genetic markers.

The study also shows that elderly people in the north of China suffer the most from these painful and chronic joint complaints including osteoarthritis and rheumatoid arthritis. The prevalence of rheumatoid arthritis (RA) in mainland China ranged from 0.2% to 0.37%, a prevalence similar to most Asian and South American countries, but lower than that in Caucasians. “Interestingly, we found that the prevalence of rheumatoid arthritis in urban and suburban parts of Taiwan was closer to the Caucasians rate,” says Dr Qing Yu Zeng who led the study. “These areas are more developed than mainland China. Apart from genetic factors, it looks as if environmental and socio-economic factors might be important risk factors for RA. That’s something we’d certainly like to investigate further.”

The survey also looked into a number of rarer rheumatic conditions and found evidence that certain ethnic groups might be more susceptible than others.

###

Notes to Editors:

1. Rheumatic diseases in China Qing Yu Zeng, Ren Chen, John Darmarwan, Zheng Yu Xiao, Su Biao Chen, Richard Wigley, Shun Le Chen and Nai Zheng Zhang Arthritis Research & Therapy (in press)

During embargo, article available at: http://arthritis-research.com/imedia/5849884441440783_article.pdf?random=465221

After the embargo, article available at journal website: http://arthritis-research.com/
Please name the journal in any story you write. If you are writing for the web, please link to the article. All articles are available free of charge, according to BioMed Central’s open access policy.

Article citation and URL available on request at press@biomedcentral.com on the day of publication

2. Arthritis Research & Therapy is an international, peer-reviewed online and print journal, publishing original research, reviews, commentaries and reports. Studies relate to the rationale and treatment of arthritis, autoimmune disease and diseases of bone and cartilage. The journal is edited by Prof Peter E Lipsky (USA) and Prof Sir Ravinder N Maini (UK) and has an Impact Factor of 3.8.

3. BioMed Central (www.biomedcentral) is an independent online publishing house committed to providing immediate access without charge to the peer-reviewed biological and medical research it publishes. This commitment is based on the view that open access to research is essential to the rapid and efficient communication of science.

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Help for young people misdiagnosed, isolated and forgotten

PRESS RELEASE: 23 JANUARY 2008

Help for young people misdiagnosed, isolated and forgotten

For the first time two charities are coming together to reach out to young people of
Sussex suffering from a very painful and distressing illness.

The Association of Young People with ME, AYME in partnership with the
Fibromyalgia Support Group for Surrey and Sussex are presenting a day of
information and support for young people and their parents and professionals at
Jury´s Inn in Brighton on Saturday Feburary 2nd.

Jo Fisher from the Fibromyalgia Support Group for Surrey and Sussex said Fibromyalgia
Syndrome (FMS) is a complex chronic condition that can cause widespread pain and body
stiffness, insomnia, chronic fatigue, cognitive problems and many other unpleasant
symptoms. Sadly many sufferers with Fibromyalgia can go undiagnosed or are
misdiagnosed for years due to a lack of knowledge and understanding within the
health care profession. ”

Natalie Arney, aged 25 from Lewes, East Sussex, said: “I work full time but have
periods of serious fatigue and other symptoms. I also suffer from Fibromyalgia so
am in constant pain.”

Katie James, project worker at AYME said: “Young people with these illnesses are
often isolated and forgotten. The day will give them a chance to meet new friends,
to talk about issues that are affecting them and share their experiences of living with
Fibromyalgia and M.E/CFS.”

If you know any young person with Fibromyalgia or ME/CFS who might be
interested in attending please let them know about the young people´s gathering
and contact the Fibromyalgia Support Group for Surrey and Sussex on 01403
255450. Email jo…@hotmail.co.uk. For more information go to:
http://www.fibromyalgia-south.com

Note to the Editor:
Interviews with young people with Fibromyalgia in your area are available. Please
contact Katie James on 0781 6989 067.

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Antidepressants and painkillers – a dangerous combination

Contact: Simon Dunford
s.dunford@uea.ac.uk
44-016-035-92203
University of East Anglia

Taking antidepressants together with painkillers can substantially increase the risk of bleeding from the stomach, according to new research by the University of East Anglia.

The antidepressant drugs, selective serotonin reuptake inhibitors known as SSRIs, are recommended by the National Institute of Clinical Excellence (NICE). SSRIs are very widely used in the UK, with more than 18 million prescriptions issued last year, probably to about 1.5 million patients.

Painkillers such as ibuprofen are widely used by the public and can be purchased from supermarkets and pharmacies without prescription.

The new research was undertaken by Dr Yoon Loke, a clinical pharmacologist at UEA’s School of Medicine, Health Policy and Practice, working with colleagues at Wake Forest University in the US. The results are published in the journal Alimentary Pharmacology & Therapeutics.

There have been existing concerns over SSRIs harming the stomach, but the threat from combined SSRI and painkiller use had not previously been established. The new UEA research confirms that SSRIs double the risk of bleeding from the stomach, but when taken together with painkillers, the risk increases by six times.

The findings are based on a meta-analysis of 4 studies covering more than 153,000 patients, which estimates that over a period of one year, one in every 106 patients taking SSRIs together with painkillers will require hospital admission due to bleeding in the stomach.

“While the SSRIs on their own carry only a small risk of harm, this risk becomes much more serious when they are taken in combination with painkillers,” said Dr Loke.

The researchers also looked in detail at more than 100 cases of patients who suffered bleeding in the stomach related to SSRIs and found that two-thirds of the patients were taking painkillers at the same time.

“If you have a history of stomach ulcers or indigestion then SSRIs may not be the best choice for treating your depression,” said Dr Loke. “There are other antidepressants which seem to be less harmful.”

He also advised patients on SSRIs: “If you do need to take a painkiller, drugs such as paracetamol may be a safer choice, rather than the non-steroidal anti-inflammatory drugs like ibuprofen.”

Dr Loke’s co-researchers were Dr Sonal Singh and Dr Apurva Trivedi, both of Wake Forest University School of Medicine in the US.

###
Notes to Editors:

For further information or to arrange pictures or interviews, please contact Simon Dunford at the UEA press Office on 01603 592203/s.dunford@uea.ac.uk.

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Treatment blocks pain without disrupting other functions

Contact: Natalie Frazin
301-496-5924
NIH/National Institute of Neurological Disorders and Stroke

A combination of two drugs can selectively block pain-sensing neurons in rats without impairing movement or other sensations such as touch, according to a new study by National Institutes of Health (NIH)-supported investigators. The finding suggests an improved way to treat pain from childbirth and surgical procedures. It may also lead to new treatments to help the millions of Americans who suffer from chronic pain.

The study used a combination of capsaicin — the substance that makes chili peppers hot — and a drug called QX-314. This combination exploits a characteristic unique to pain-sensing neurons, also called nociceptors, in order to block their activity without impairing signals from other cells. In contrast, most pain relievers used for surgical procedures block activity in all types of neurons. This can cause numbness, paralysis and other nervous system disturbances.

“The Holy Grail in pain science is to eliminate pathologic pain without impairing thinking, alertness, coordination, or other vital functions of the nervous system. This finding shows that a specific combination of two molecules can block only pain-related neurons. It holds the promise of major future breakthroughs for the millions of persons who suffer with disabling pain,” says Story C. Landis, Ph.D., director of the National Institute of Neurological Disorders and Stroke (NINDS) at the NIH, which funds the investigators’ research along with the National Institute of Dental and Craniofacial Research (NIDCR) and the National Institute of General Medical Sciences (NIGMS). NINDS and NIDCR are co-chairs of the NIH Pain Consortium. The study appears in the October 4, 2007, issue of Nature.*

Lidocaine, the most commonly used local anesthetic, relieves pain by blocking electric currents in all nerve cells. Although it is a lidocaine derivative, QX-314 alone cannot get through cell membranes to block their electrical activity.

That’s where capsaicin comes in. It opens large pores called TRPV1 channels — found only within the cell membrane of pain-sensing neurons. With these channels propped open by capsaicin, QX-314 can pass through and selectively block the cells’ activity.

The research team, led by Clifford J. Woolf, M.D., Ph.D., of Massachusetts General Hospital and Harvard Medical School and Bruce Bean, Ph.D., at Harvard Medical School, tested the combination of capsaicin and QX-314 in neurons isolated in Petri dishes and found that it blocked pain-sensing neurons without affecting other nerve cells. They then injected the drugs into the paws of rats and found that the treated animals could tolerate much more heat than usual. They also injected the two drugs near the sciatic nerve that runs down the hind leg. The treated rats did not show any signs of pain, and five of the six animals continued to move and behave normally. This showed that the drugs could block pain without impairing motor neurons that control movement.

The drug combination took half an hour to fully block pain in the rats. However, once it began, the pain relief lasted for several hours.

“Current nerve blocks cause paralysis and total numbness,” Dr. Woolf says. “This new strategy could profoundly change pain treatment in the perioperative setting.”

The treatment tested in this study is unique in that it uses a type of ion channel (TRPV1 channels) as an avenue to deliver medication. Ion channels are pores in the cell membrane that control the flow of electrically charged ions in and out of cells. “I’m not aware of any other strategy that uses a channel within cells to deliver a drug to a select set of cells,” Dr. Woolf says. The strategy builds on research done since the 1970′s, largely supported by NIH, that shows how electrical signaling in the nervous system results from expression of dozens of different types of ion channels. Some of these ion channels are found only in specific types of neurons.

“This project is a nice illustration of how research trying to understand very basic biological principles can have practical applications,” says Dr. Bean. This type of treatment has great potential to improve pain treatment during childbirth, dental procedures, and surgery, the researchers say. “Surgical pain is the obvious first application for this type of treatment,” Dr. Woolf says. However, similar therapies might eventually be useful for treating chronic pain, he adds. Chronic pain continues for weeks, months, or even years and can cause severe problems, and is often resistant to standard medical treatments.

While the researchers focused on finding a treatment for pain, this strategy might also be useful for treating itch from eczema, poison ivy rashes, and other conditions, Dr. Woolf says. Like pain sensations, itch signals come from nociceptors. One problem with the combination treatment is that the capsaicin can cause unpleasant burning sensations until the QX-314 takes effect, Dr. Woolf says. Administering the QX-314 ten minutes before the capsaicin minimized this problem in rats. The investigators are now looking for ways to open the TRPV1 channels without the burning sensations, perhaps by finding an alternative to capsaicin. They also hope to find ways of prolonging the pain relief. Eventually, they might be able to develop pills that will stop pain signals without requiring injections, Dr. Woolf adds.

###
The NINDS is the nation’s primary funder of research on the brain and nervous system. More information about pain and other neurological disorders can be found on the NINDS web site, http://www.ninds.nih.gov/. The NIDCR (http://www.nidcr.nih.gov/) is the nation’s leading funder of research on oral, dental, and craniofacial health. The NIGMS (http://www.nigms.nih.gov) supports basic biomedical research that is the foundation for advances in disease diagnosis, treatment, and prevention. The NINDS, NIDCR, and NIGMS are components of the National Institutes of Health (NIH). The NIH Pain Consortium, co-chaired by the NIDCR, the National Institute of Nursing Research, and the NINDS, strives to enhance pain research and promote collaboration among researchers across the many NIH Institutes and Centers that have programs and activities addressing pain.

The NIH – The Nation’s Medical Research Agency – includes 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary Federal agency for conducting and supporting basic, clinical, and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov.

*Binshtok AM, Bean BP, Woolf CJ. “Inhibition of nociceptors by TRPV1-mediated entry of impermeant sodium channel blockers.” Nature, October 4, 2007, Vol. 449, No. 7162, pp. 607-610.

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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]

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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]

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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.

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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]

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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]

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