FIBROMYALGIA SUPPORT GROUP (MEDWAY)



[pic]

16 Barberry Avenue, Chatham Kent ME5 9TE

Telephone: 01634 865925 E-mail: fibromedway@yahoo.co.uk

Website: fibrosupportmedway.

October 2010 ISSUE 49

Next Meeting: Thursday 25th November, at St Stephen’s Church Hall, Maidstone Road,

Chatham ME4 6JE. 1.00pm to 3.00pm

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MEETING DATES FOR 2010

Thursday 25th November – Living With Fibromyalgia, a talk given by Margaret Robson at a Conference for Doctors in Ashford in October.

All at the above address and time.

SEPTEMBER MEETING

Atos Healthcare unfortunately withdrew the speaker they had promised for our September meetings. However, the large attendance at the meeting was not disappointed as we were able to put together a comprehensive talk about Atos Healthcare and the procedures that the Drs have to follow when they come out to assess claimants for benefits.

Peter followed this with a talk about Employment Support Allowance, and he shared with us an interesting piece from the Times about how the cuts would impact on people, and how in all probability it would affect the wrong people.

There will be more information on both talks in the next newsletter.

Also, Caroline gave an excellent presentation about the disability shop, Medway Mobility, that she manages at 286 Chatham High Street.

Tel: 01634 409114 for more details.

AWARENESS FUNDING SUCCESS

Grassroots Grants has awarded the Fibromyalgia Support Group (Medway) £1300 for an awareness event and providing information during 2011.  The Grant will cover hall hire, and 100 of our own Information Packs.  It will also be used for refreshments at the event, as well as stationery and postage. Grassroots Grants is a Government funding source for small charities and voluntary organisations that have been in existence for over 12 months, and is administered by the Community Development Foundation.

TELEPHONE ENQUIRIES

Please note that telephone calls to the group should be made on weekdays between 10am and 5pm. For those who are at work and unable to make telephone calls during those times, it would be appreciated if calls could be made during weekday evenings before 7.00pm.

SUPPORTERS’ HELPLINE

Ron Robson is available on 01634 865925 to take calls from supporters of those with Fibromyalgia, who just need to talk about their concerns.

FUNDING UPDATE

The balance in our Bank Account at the end of July 2010, was £3246.68.

Expenditure since then has been, £135.93 for photocopying, £270.76 for Postage, £14.74 for Library, and £39.80 for Sundries.

This leaves a total of £2785.45.

At the September meeting and during the past two months, we raised, £44 on the raffle, £9.20 for books, £18 for pens, £25.41 for refreshments, £88 in donations, £178 for sale of 024 Fibromyalgia, £15 for plugmates, £4 for CDs, £21 for Car Stickers and £197.50 for Gift Aid.

This gives a total of £600.11 to be deposited in our bank account.

This gives us total of funds of £3385.56.

DONATIONS

I would like to acknowledge all donations sent in during the last two months. All donations help ensure the service remains at the present level. I am not able to respond to each one personally but please accept our thanks to you all. Thanks also for the lovely letters I receive. They are much appreciated

NEW IN OUR LIBRARY

We now have two copies of Preventing Falls – Strength and Balance Exercises, in our Library. An A4 ring-bound table-top flip-chart that contains a mixture of standing and chair-based exercises.

CAR WINDOW STICKERS

We sell Awareness Car Window

Stickers. Send an SAE and £1 for

each one to 16 Barberry Avenue,

Chatham, Kent ME5 9TE, or buy

one at the meeting.

NORTH KENT GROUP

This Group is not only for those living in Dartford but also those living in the surrounding areas of Gravesend, Bexley, Sidcup, Erith, Eltham, and Swanley. Meetings are held at The Church Hall, Christchurch Road, Dartford DA1 3DH (near Dartford Grammar Schools), (ample car parking facilities available)

Contact: Philomena (Phyl) on 01322 528108 or e-mail: fibromyalgia.nkent@yahoo.co.uk

MAIDSTONE GROUP MEETINGS

Maidstone & Weald Support Group meet at the Maidstone Community Support Centre, Marsham Street, Maidstone.

Contact: Heather Hammond on 01580 715503 or heather.hammond@mypostoffice.co.uk

SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS

St Peter’s Church Hall, St Peter’s Close, Sheerness.

Meet on the 2nd Friday in February, April, June, August, October & December at 12.15-2.15pm.

Contact Maria on 01795 873379.

IF YOU CAN’T ATTEND MEETINGS

If you can’t attend meetings but you live in any of these areas and wish to join any of those groups (those already signed up to the Medway Group can still stay with this Group as well for as long as they wish), please let the relevant Co-ordinator know.

GROUP PENS NOW FOR SALE

We now have our own group pens for sale for £1 each. Please send a stamped addressed envelope with your money to obtain these easy to hold pens.

TRADITIONAL CHINESE MEDICINE

from a talk at our July meeting By Dianne Stewart MA PhD MBAcC MRCHM

Chinese medicine views the body as a small part of the universe, and subject to universal laws and principles of harmony and balance. Chinese medicine does not draw a sharp line, as Western medicine does, between mind and body. The Chinese system believes that emotions and mental states are every bit as influential on disease as purely physical mechanisms, and considers factors like work, environment, lifestyle and relationships as fundamental to the overall picture of a patient's health.

Chinese medicine also uses very different symbols and ideas to discuss the body and health. While Western medicine typically describes health in terms of measurable physical processes made up of chemical reactions, the Chinese use ideas like yin and yang, chi, the organ system, and the five elements to describe health and the body. To understand the ideas behind acupuncture, it is worthwhile to introduce some of these basic terms.

YIN AND YANG.

According to Chinese philosophy, the universe and the body can be described by two separate but complementary principles, that of yin and yang. For example, in temperature, yin is cold and yang is hot. In gender, yin is female and yang is male. In activity, yin is passive and yang is active. In light, yin is dark and yang is bright; in direction yin is inward and downward and yang is outward and up, and so on. Nothing is ever completely yin or yang, but a combination of the two. These two principles are always interacting, opposing, and influencing each other. The goal of Chinese medicine is not to eliminate either yin or yang, but to allow the two to balance each other and exist harmoniously together. For instance, if a person suffers from symptoms of high blood pressure, the Chinese system would say that the heart organ might have too much yang, and would recommend methods either to reduce the yang or to increase the yin of the heart, depending on the other symptoms and organs in the body. Thus, acupuncture therapies seek to either increase or reduce yang, or increase or reduce yin in particular regions of the body.

CHI.

Another fundamental concept of Chinese medicine is that of chi (pronounced chee, also spelled qi). Chi is the fundamental life energy of the universe. It is invisible and is found in the environment in the air, water, food and sunlight. In the body, it is the invisible vital force that creates and animates life. We are all born with inherited amounts of chi, and we also get acquired chi from the food we eat and the air we breathe. The level and quality of a person's chi also depends on the state of physical, mental and emotional balance. Chi travels through the body along channels called meridians.

THE ORGAN SYSTEM.

In the Chinese system, there are twelve main organs: the lung, large intestine, stomach, spleen, heart, small intestine, urinary bladder, kidney, liver, gallbladder, pericardium, and the "triple warmer," which represents the entire torso region. Each organ has chi energy associated with it, and each organ interacts with particular emotions on the mental level. As there are twelve organs, there are twelve types of chi which can move through the body, and these move through twelve main channels or meridians. Chinese doctors connect symptoms to organs. That is, symptoms are caused by yin/yang imbalances in one or more organs, or by an unhealthy flow of chi to or from one organ to another. Each organ has a different profile of symptoms it can manifest.

THE FIVE ELEMENTS.

Another basis of Chinese theory is that the world and body are made up of five main elements: wood, fire, earth, metal, and water. These elements are all interconnected, and each element either generates or controls another element. For instance, water controls fire and earth generates metal. Each organ is associated with one of the five elements. The Chinese system uses elements and organs to describe and treat conditions. For instance, the kidney is associated with water and the heart is associated with fire, and the two organs are related as water and fire are related. If the kidney is weak, then there might be a corresponding fire problem in the heart, so treatment might be made by acupuncture or herbs to cool the heart system and/or increase energy in the kidney system.

The Chinese have developed an intricate system of how organs and elements are related to physical and mental symptoms, and the above example is a very simple one. Although this system sounds suspect to Western scientists, some interesting parallels have been observed. For instance, Western medicine has observed that with severe heart problems, kidney failure often follows, but it still does not know exactly why. In Chinese medicine, this connection between the two organs has long been established.

MEDICAL PROBLEMS AND

ACUPUNCTURE.

In Chinese medicine, disease is seen as imbalances in the organ system or chi meridians, and the goal of any remedy or treatment is to assist the body in re-establishing its innate harmony. Disease can be caused by internal factors like emotions, external factors like the environment and weather, and other factors like injuries, trauma, diet, and germs. However, infection is seen not as primarily a problem with germs and viruses, but as a weakness in the energy of the body which is allowing a sickness to occur. In Chinese medicine, no two illnesses are ever the same, as each body has its own characteristics of symptoms and balance. Acupuncture is used to open or adjust the flow of chi throughout the organ system, which will strengthen the body and prompt it to heal itself.

HERBS

Herbs are one of the oldest forms of medicine in most cultures. Chinese herbs differ to most others in that it is deeply enshrined in the notion of harmony of the body’s lifeforce. Adverse reactions to Chinese herbs are extremely rare.

Herbs are prescribed in the form of tablets, capsules, powders or as loose herbs. In most cases the herbs will come in the form of a powder which dissolves in water and is extremely convenient to take. Only in the case of a few stubborn illnesses will the more labour intensive form of loose herbs be prescribed – and then only after discussion with the patient. The herbs have an unusual taste and most people get used to them very quickly.

SCENAR

Scenar is a very exciting new technique developed in Russia. It uses electronic technology in combination with Traditional Chinese Medicine knowledge. The scenar device acts through the skin working via the meridian network. The device has a bio-feedback process – reading and stimulating the meridian system in order to encourage the body’s own natural healing mechanisms. There are no contraindications, but it cannot be used on people with a pacemaker.

ACUPUNCTURE, HERBS OR SCENAR

Some illnesses lend themselves to being treated better with either Acupuncture, Herbs or Senar, or a combination. Some people have a preference for one or the other. Options are always discussed and any preferences respected.

The benefits of Acupuncture, Scenar as well as Chinese Herbs, include more than just relief from a particular condition. Many people find that it can also lead to increased energy levels, better appetite and sleep as well as an enhanced sense of overall well-being.

For more details contact Dianne Stewart on 01227 452596

or

email: tcm@diannestewart.co.uk

diannestewart.co.uk

(Editor’s Note: Always discuss any proposed changes in your treatment with your medical professional)

EFFECTS OF LIFESTYLE PHYSICAL ACTIVITY ON PERCEIVED SYMPTOMS AND PHYSICAL FUNCTION IN ADULTS WITH FIBROMYALGIA: RESULTS OF A RANDOMIZED TRIAL

Kevin R Fontaine; Lora Conn; Daniel J Clauw

Introduction Although exercise is therapeutic for adults with fibromyalgia (FM), its symptoms often create obstacles that discourage exercise. We evaluated the effects of accumulating at least 30 minutes of self-selected lifestyle physical activity (LPA) on perceived physical function, pain, fatigue, body mass index, depression, tenderness, and the six-minute walk test in adults with FM.

Methods Eighty-four minimally active adults with FM were randomized to either LPA or a FM education control (FME) group. LPA participants worked toward accumulating 30 minutes of self-selected moderate-intensity LPA, five to seven days per week, while the FME participants received information and support.

Results Seventy-three of the 84 participants (87%) completed the 12-week trial. The LPA group increased their average daily steps by 54%. Compared to FME, the LPA group reported significantly less perceived functional deficits (P = .032) and less pain (P = .006). There were no differences between the groups on the six-minute walk test (P = .067), fatigue, depression, body mass index, or tenderness.

Conclusions Accumulating 30 minutes of LPA throughout the day produces clinically relevant changes in perceived physical function and pain in previously minimally active adults with FM.

BOOKS & DVDs FROM AGE UK

Your rights to Money Benefits 2010/11

£5.99

Feeling Good! Easy Steps to Staying Healthy by Dr Alan Maryon Davis £9.99

Preventing Falls – Strength and Balance Exercises. A4 ring-bound table-top flip-chart that contains a mixture of standing and chair-based exercises. £6

Step to the Future – Aerobic and Strength Exercises (DVD) £12

Be Strong Be Steady – Strength and Balance exercises (DVD) £12

For more information and ordering:

.uk/bookshop

Tel: 0870 4422120

Email: acil.orders@.uk

Or write to:

Age UK Bookshop, Linhay House, Linhay Business Park, Ashburton, TQ13 7UP

FIBROMYALGIA RESEARCH

The Stanford School of Medicine’s department of Anaesthesia in conjunction with the Pain Management Centre has recently released some information regarding a follow-up study being carried out in America. The study involves the role of low doses of Naltrexone to treat patients with Fibromyalgia.

At normal doses (50mg – 100mg) Naltrexone is used to block the effects of opioids. At low doses (not exceeding 5mg) it appears that the drug may have the reverse effect and actually strengthen analgesia. Whilst the exact mechanisms are unknown it is possible that low doses of Naltrexone block the receptors on glial cells that are thought to be responsible for Fibromyalgia.

In America this product has been used off-label for many years in the treatment of Fibromyalgia. This is the first clinical study to evaluate its efficacy.

The same school of Medicine is investigating the role of the thyroid hormone T3. and the treatment of Fibromyalgia. It appears there is a significant overlap between the symptoms of hypothyroidism (low thyroid hormone production), depression. Chronic fatigue, and Fibromyalgia. Patients with low thyroid hormone production who have been treated with T3 have previously been shown to have some improvement in their symptoms.

It is interesting to note that new research and clinical trials are being carried out in order to assist those with Fibromyalgia in the US. This does not mean that the results will flow through to the UK as we have seen with other treatments that are approved in the US but rejected by either the European Union or NICE.

TENDER POINTS TRIGGER POINTS AND PRESSURE POINTS

Tender points, Trigger points and Pressure points (usually called acupressure points) are all different, but they are often mixed up, even by doctors.

Tender points (TPs)

Tender points, not trigger points, are part of the American College of Rheumatology's criteria for the diagnosis of Fibromyalgia Syndrome (Fibro).

The anatomic and physiological mechanisms accounting for the presence of

Tender points have received great attention, but nothing special about Tender points has been found in research.

Many experts now agree that they are just points on the body where everyone is more sensitive and so where it is easier to note and in some way quantify the hypersensitivity to pain of Fibro patients.

Tender Points occur in pairs on various parts of the body [1]. Tender points hurt where pressed, but do not refer pain elsewhere and they are not hard knots (unlike Trigger Points)[2] - in fact there is nothing to be found at a Tender point site other than tenderness.

The American College of Rheumatology's guidelines for the diagnosis of Fibromyalgia [3] is that the patient should have widespread pain in all four quadrants of the body for a minimum duration of three months and tenderness or pain in at least 11 of the 18 specified tender points when a specific amount of pressure is applied (see figure below). Most healthy individuals experience pain in only a small number of tender points in response to this test. [4]

However, the criteria of “11 of 18" specific Fibro tender points were originally meant to screen patients for clinical study and not as diagnosis [1]. A range of things affect Tender points including illness progression, injuries [2] and also gender - men with Fibro tend to "score" lower than women with Fibro, which is one factor behind the under-diagnosis of Fibro in men. For the tender point examination to have any meaning, you need a doctor who really knows what they are doing. A key part of this is knowing the difference between Tender Points and Trigger Points and being able to differentiate between them in the examination.

(Myofascial) Trigger points (TrPs or MTPs)

Trigger points are hard points in the myofascia that hurt to the touch and refer pain and/or other symptoms elsewhere. There is no such thing as a Fibromyalgia Syndrome trigger point.[2]

Fascia is the semiflexible fibrous membrane of connective tissue that binds together the various components of the body. [5] The Myofascia is the fascia relating to the muscles - it covers individual muscle fibers, bundles them together and covers the whole muscles [5].

A substance within the myofascia is involved with the transfer of nutrients and removal of waste products in the muscles, and also keeps the muscle supple, preventing microadhesions from forming.

If the myofascia is subjected to biochemical or mechanical trauma, then the fluids in it can thicken, even becoming hard, making the myofascia tighten. Microadhesions then form between the muscle fibres, which is what the tight bands or knots of the TrPs are. [2][6] This fibrous myofascial adhesion affects the nerves around the muscle, disrupting their normal function, which is how the TrPs trigger symptoms away from themselves. [6]

TrPs seem to form as a response to things happening to our bodies, such as overuse, repetitive motion trauma, bruises, strains, joint problems, surgery, or stress. Pain creates a neuromuscular response, and the muscle around the pain site tightens, "guarding" the hurt area. Stress can cause you to tense muscles for no reason other than a stilled form of the fight or flight instinct. [6]

When muscles are in a state of sustained tension, they are working, even if you're not. A working muscle needs more nutrition and oxygen, and produces more waste, than a muscle at rest. And unlike when you exercise and work muscles that way, increased blood flow isn't supplied to deal with the demands. This creates an area in the myofascia starved for food and oxygen and loaded with toxic waste — a TrP. [6]

An active TrP not only hurts when it is pressed, but it "triggers" a referred pain pattern or other symptoms locally or elsewhere in the body. This pattern from specific TrPs is usually similar from patient to patient and charts are available depicting pain referral patterns from TrPs.

An active TrP hurts whenever you use the involved muscle and if a TrP becomes very active, symptoms occur even when the muscle is at rest.[6]

TrPs can cause a wide range of symptoms including:

Stabbing pains.

Burning pain.

Stuffy sinuses.

Headaches & migraine.

Nausea.

Reduced mobility.

Acupressure points

Acupressure (a combination of "acupuncture" and "pressure") is a traditional Chinese medicine technique based on the same ideas as acupuncture. Acupressure involves placing physical pressure by hand, elbow, or with the aid of various devices on different acupuncture points on the surface of the body. Acupressure points can do a variety of things including relieve pain.

References:

1. Starlanyl DJ, 2003. Fibromyalgia and Chronic Myofascial Pain: Keys to Diagnosis and Treatment [website]. Available: [Nov 2008]

2. Starlanyl DJ, 2004. Trigger Points and Tender Points: Why the Difference Is Important to You [online paper]. Available: [Nov 2008]

3. Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombardier C, Goldenberg DL, et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of the multicenter criteria committee. Arthritis Rheum 1990;33:160---72.

4. National Fibromyalgia Association. Glossary of Research and Other Fibromyalgia Terms and Definitions [website].

Available: [Nov 2008]

5. Clark GA. Fascia & Myofascia [website].

Available: [Nov 2008]

6. Starlanyl DJ, Copeland ME, 2007. Fibromyalgia and Chronic Myofascial Pain: Patient Information [website]. Available: [Nov 2008]

This article is reproduced with permission from FibroAction.

Copyright FibroAction. All rights reserved.

DISCOVERY OF CHRONIC PAIN GENE SUGGESTS ‘PREVIOUSLY UNTHOUGHT OF’ THERAPEUTIC APPROACHES

August 5, 2010

Individuals who carry this gene are more susceptible to chronic pain following nerve injury.

Researchers at the Hebrew University of Jerusalem and elsewhere have succeeded in identifying for the first time a gene associated with susceptibility to chronic pain caused by nerve injury in humans - signaling a significant step toward better understanding and treating the condition.

Their findings were published online Aug 5 by Genome Research

Human Susceptibility to Chronic Pain Varies Greatly

Chronic pain is a serious medical problem, afflicting approximately 20% of adults. Some individuals are more susceptible than others, and the degree of pain experienced after injury or surgery is known to be highly variable between patients, even under nearly identical circumstances. The basis for this has remained largely unknown, prompting researchers to search for the contribution of genetics to chronic pain susceptibility. To accelerate research in this field, animal models are proving to be critical to understanding the underlying biology of chronic pain in human patients.

First, the international research team - led by Profs. Ariel Darvasi and Marshall Devor at The Hebrew University of Jerusalem and including scientists in Canada and Europe - identified a region of mouse chromosome 15 that likely contained a genetic variant or variants contributing to pain. However, this region contains many genes, and the responsible variant remained unknown.

Next, they undertook two fine-mapping approaches to narrow down the chromosomal locus to an interval of 155 genes. By applying bioinformatics approaches and whole genome microarray analysis, they then were able to confidently identify a single gene, CACNG2, as the likely candidate.

Tests Proved the Link to Chronic Pain in Animals

To further test the potential role for CACNG2 in chronic pain, the authors utilized a mouse strain harbouring a mutant version of the gene that had previously been used in epilepsy research. In testing the mice for behavioural and electrophysiological characteristics of chronic pain, they found that the observations were consistent with a functional role for CACNG2 in pain, even though it might be modest.

Significant Association with Chronic Pain in Humans

However, the question still remained as to whether the human version of the gene also is important for chronic pain. Analyzing a cohort of breast cancer patients who experienced chronic pain half a year or more after they had undergone removal or partial removal of a breast, they found that genetic variants of CACNG2 were significantly associated with this chronic pain.

The authors cautioned that although this association will need to be analyzed further, the result is encouraging in pointing to this gene as a significant factor in experiencing pain. “The immediate significance is the mere awareness that differences in pain perception may have a genetic predisposition,” Darvasi explained.

“Our discovery may provide insights for treating chronic pain through previously unthought-of mechanisms.”

In addition to the scientists from The Hebrew University, other contributors to the study were from the University of Toronto; Sanofi-Aventis, Germany; and the Karolinska Institute Center for Oral Biology, Sweden.

The work was supported by the Israel Science Foundation, the Hebrew University Center for Research on Pain, the Canada Research Chair Program, and the European Community’s 6th Framework Program

Source: The Hebrew University of Jerusalem, news release, Aug 5, 2010 (with modification)

Taken from newsletter

MY SCOOTER

I suffer with extreme exhaustion and pain when walking and my Doctor recommended that I use a wheelchair from the hospital. I was 52 years old (I’m now 65 years), a mother who worked part-time, a grandmother who was always positive, outgoing, and loved to be out meeting people.

I was then confined to my house nearly every day, for when I did go out I paid the penalty and was bedridden for many days, sometimes even months, until the pain and exhaustion got down to a level where I was able to go out again.

The wheelchair enabled my husband to take me out to the shops and parks, and even on a holiday. What joy this gave me, when on good days I could go out and enjoy other people’s company and beautiful scenery.

After seven years of enjoying my wheelchair I suddenly noticed men and women on scooters of all different shapes and sizes, going around the shops and superstores, all having their own baskets that were fixed to the front of their scooters. Yes, people enjoying themselves, filling up their own shopping baskets, and when they needed help to reach some item high up on a shelf, there was always a kind person or shop assistant to help. I thought, here was independence, and I wanted some of it.

Now, after seven years of having ‘my scooter’, I have had independence that I recommend to everyone. I have experienced that shops, stations, airports, and car parks, cater for people using a scooter. There are so many kind people, shop assistants, restaurateurs, always ready to help.

On good days I can go to my local shops, restaurant, meet people and have lunch with my friends. When my husband and I go to town shopping, once he has assembled my scooter (some cars allow you to keep your scooter fully assembled) (Editor’s Note: You can also buy a hoist to have fitted in your car and this does the work for you), I can go off and look in shops that my husband may not be interested in.

‘My Scooter’. What would I do without it? It folds up easy to fit in any car boot. My husband, instead of pushing me in the wheelchair can now walk beside me, at the seaside, at the park, and when just going for a walk to pick wild blackberries.

Yes, we can laugh, talk, and enjoy each others company, and even, at times, he holds my hand. These are priceless treasures I can enjoy with ‘my scooter’.

I thoroughly recommend, if your circumstances allow, to see how good independence is, by having a scooter, like my scooter.

Marian Burrage

Editor’s Note: Marian contacted me to tell me of the excellent service she had received when she bought her new scooter, from Caroline at Medway Mobility, 286 High Street, Chatham. Tel: 01634 409114.

Caroline also came to our September meeting to tell us about the items that the shop can provide.

A CLUE TO FIBRO PAIN?

A small American Study reported in the Journal ‘Arthritis and Rheumatism’ (August 2010) had 18 women with Fibromyalgia undergo six minute MRI scans and compared the results to women without the condition.

Participants were asked to rate pain intensity at the time of the test. Brain scans showed the neural activity between certain brain networks and the insular cortex. The level of pain processing was found to be heightened in women with Fibromyalgia compared to the group without Fibromyalgia.

This study will add to the body of knowledge that is accumulating about the differences in MRI scans for those with Fibromyalgia. The studies from America are often small but many are being replicated on a larger scale to build up the body of knowledge that will allow practitioners to better understand both the causes and treatment of Fibromyalgia.

GOVERNMENT RESPONSE TO PETITION

The following petition details were sent in by a member.

Petition

We the undersigned petition the Prime Minister to recognise specifically that chronic pain and chronic fatigue cause incapacity for work

Sufferers of chronic fatigue syndrome, fibromyalgia, hypermobility syndrome, and other such chronic conditions can go through periods when their ability to function is severely impaired. The current rules for claiming ESA do not recognise the validity of myalgia, arthralgia, malaise or severe sleep disruption. This causes distress and humiliation for sufferers who are often forced to appeal decisions, or to work when unfit thereby causing themselves further health problems. We ask that this family of incapacities be correctly recognised so that people who experience chronic pain and chronic fatigue can claim ESA when they need it.

Government response

We recognise that fatigue and pain can severely limit someone's capability for work, and this is reflected in the Work Capability Assessment.  Because it is important to take account of fluctuating symptoms when assessing capability for work, the Work Capability Assessment is not a snapshot view of a customer’s ability to undertake day-to-day activities at any single point in time, but rather an assessment of their ability most of the time. If a customer is unable to complete an activity repeatedly, reliably and safely, then they are considered unable to complete it at all. 

 

The healthcare professionals conducting Work Capability Assessments are trained in disability analysis and are given particular training in assessing fluctuating conditions. They are expected to be mindful of the fact that many illnesses produce symptoms that vary in intensity over time from mild to severe, and are instructed not to base their opinion solely on the situation as observed at the medical assessment

TAI CHI MAY HELP EASE FIBROMYALGIA

Participants reported less pain, a happier mood and overall better quality of life

Fibromyalgia sufferers may find relief from the chronic pain condition by doing tai chi, new research finds.

Researchers divided 66 people with fibromyalgia into two groups: one group did hour-long sessions of tai chi twice a week for 12 weeks; the other had a twice-weekly wellness education class followed by gentle stretching.

At the end of 12 weeks, the tai chi group reported improvements in their scores on questionnaires regarding both physical and mental fibromyalgia symptoms. That included decreased pain and increased ability to do daily tasks without pain; less fatigue, depression and anxiety; and an overall better quality of life.

Patients also reported better sleep quality and improved physical conditioning.

The improvements were still evident at 24 weeks, according to the research reported in the Aug. 19 issue of the New England Journal of Medicine.

Although said to look promising, it was agreed that a larger study was needed.

WOMEN EXPERIENCE MORE CHRONIC PAIN THAN MEN, RESEARCH FINDS

Also more likely to have multiple painful conditions at the same time

Jennifer Kelly, a pain expert, of the Atlanta Centre for Behavioural Medicine has said that Chronic pain occurs more often, is more intense and lasts longer in women than in men. She goes on to say that women are also more likely to experience multiple painful conditions at the same time, which can lead to greater mental stress and increased risk of disability.

She also said that hormones may be a factor in these gender differences. For example, it's known that oestrogen plays a role in migraines, and that rates of pain conditions increase among girls as they pass through puberty. Among adolescent boys, rates of pain conditions are stable or rise less dramatically.

Some research suggests that women and men may respond differently to pain medications.

In her report, she said that genetic and hormonal differences may be the main reason for any differences, but it's becoming increasingly clear that social and psychological factors are also important.

Women tend to focus on the emotional aspects of pain whereas men tend to focus on the physical sensations they experience. Women who concentrate on the emotional aspects of their pain may actually experience more pain as a result, possibly because the emotions associated with pain are negative.

Among other things, Kelly encouraged practitioners to allow patients, especially women, to take an active role in their treatment, to provide psychological support and to offer relaxation techniques and biofeedback.

100% DISCOUNT ON LONDON CONGESTION CHARGE FOR BLUE BADGE HOLDERS

Any individual or institution in the European Economic Area that holds a valid Blue Badge is eligible to register for a 100 per cent discount, even if they don't own a vehicle or drive.

You can register up to two vehicles that you would normally use to travel within the charging zone. This could be your own vehicle, or one you travel in.

Fill in and post the registration form available from the link below, or telephone the number below for a form.

Once they have sent you an approval letter, you can drive or be driven in the zone free. Until then, you must pay the charge.

You have to pay a one-off payment £10 for this discount.

A renewal letter should be sent to you each year but no further payment is required unless you fail to renew on or before the renewal date. In that case you will be required to pay the £10 again.

For more details visit:



or

contact the Congestion Charging Office on:

0845 900 1234

THE MEDWAY HEALTH DEBATE

NHS Medway and the Medway Local Involvement Network are holding a joint event on Tuesday 26 October, for people interested in health and healthcare in Medway.

There will be information about what local people have told us over the last few months about their priorities, and discussion of plans for the future.

To attend the event which runs from 9.30am to 4pm at the Corn Exchange in Rochester, please email itsyournhsmedway@ or phone Fiona Gaylor, engagement co-ordinator, on 01634 335173.

You can also still complete the online questionnaire at:

medwayhealthdebate

Contact: Fiona.Gaylor@medwaypct.nhs.uk

PERSONAL HEALTH BUDGETS

It is hoped that the first payments to patients on the personal health budgets pilot will be made next month.

Ten people are taking part in the first wave of the pilot. NHS Medway has applied to the Department of Health for permission to make direct payments to patients and once that is approved, expects to be able to start making payments.

Preliminary discussions suggest that patients intend to purchase:

• Specialised equipment, in particular a tailored mask to assist breathing/reduce discomfort and other equipment that is subject to a waiting list

• Additional NHS services, such as a physiotherapist every day for the first week of a new regimen to increase motivation

• Alternative services, such as massage or membership to a swimming pool to increase

mobility

• Respite services

• Carer support

Contact:

Victoria.Nystrom-Marshall@medwaypct.nhs.uk

HYDROTHERAPY IN MEDWAY

New arrangements are in place for people in Medway who need hydrotherapy, after a decision not to reopen the hydrotherapy pool at Medway Maritime Hospital.

This comes after a review led by NHS Medway found that it would cost at least £100,000 to reopen the pool (which closed for safety reasons in 2008) and that it is needed for only an estimated two hours a week.

Staffing and maintenance costs would increase the bill this year to potentially £255,000 with ongoing costs estimated at £130,000 every year.

Patients who would benefit from doing physiotherapy exercises in water can use Strood Leisure Centre’s hydrotherapy pool. Arrangements are being made for sessions to be funded by the NHS, where patients are assessed by their NHS physiotherapist as having a clinical need for hydrotherapy.

Arrangements are also in place for supervised sessions for patients who need to be accompanied by a physiotherapist in the pool.

The review involved patients, consultants, physiotherapists, GPs, NHS staff, councillors, community groups, and others in looking at the need for hydrotherapy in Medway and how it could best be met.

Contact: Alan.Dixon@medwaypct.nhs.uk

Editor’s Note: A response has been sent by this support group regarding the article on Hydrotherapy in which it states that the Pool is only needed for two hours a week. We had always been informed that it was in full use prior to the closure. However, since sending our response, we attended the Medway NHS AGM in September and managed to speak to Helen Buckingham the new Acting Chief Executive, who explained that the two hours use of the pool was only referring to in-patient use. She also explained that re-opening the pool was not cost-effective. We will be receiving a written response and we will inform you of this.

CHANGES AT THE TOP IN THE NHS IN KENT AND MEDWAY

There are set to be some changes at the top in two of Kent and Medway’s Primary Care Trusts, as part of the transition to a proposed new structure for the NHS in the Government’s White Paper. 

NHS Medway's Chief Executive Marion Dinwoodie will take over the reins at NHS West Kent while its Chief Executive Steve Phoenix takes up a post with the region's Strategic Health Authority. Steve will take up the role of Director of Provider Development at NHS South East Coast.

Helen Buckingham, Deputy Chief Executive/Director of Commissioning and Performance at NHS Medway will take over as NHS Medway's Acting Chief Executive. All the changes come into effect from 1 October 2010.

Editor’s Note: Those of you who attended our March meeting will remember that Helen Buckingham came to give us a talk.

NHS MEDWAY’S AGM

Margaret and Ron attended NHS Medway Annual General Meeting on 20th September on behalf of Fibromyalgia Support Group (Medway). The AGM was very interesting and included a number of presentations by different Departmental Heads.

Overall the AGM was very positive with reporting on many of the achievements during the previous 12 months. There was also a note of caution with regard to future funding and a general acceptance that all of those involved in the NHS were going to have to find innovative ways of making the same pot of money go further. There were some examples of how this could be achieved along with an excellent joint presentation by Karen Morgan, Head of unscheduled care, and Chris Stamp, Senior Operations Manager SECamb (Ambulance service).

This pilot project attempted to divert people away from A&E unless they really required it. The ambulance service working with MEDDOC made decisions based on what the ambulance crews found at the scene.

In the 6 month pilot:

460 call were received

40 (9%) were offered appointments

178 (39%) received visits from a medical practitioner at home

25 (5%) were referred to community teams

The remainder (nearly half) were managed by telephone advice

Outcome analysis:

53 (11.%) – referred to hospital

25 (5%) – referred into community teams

Remainder (84%) required no follow up

58% of the calls were for over 65s

Top 3 categories – Falls, Gastric and Respiratory

The benefits:

Patients receiving safe and efficient care with conveyance to hospital

Frees up A&E capacity

Frees up SECAMB crews for emergencies

Not a new activity for MEDDOC, therefore no additional costs

460 patients avoided minimal A&E Attendance- potential cost savings

It just goes to show what can be achieved when different parts of the NHS link up and think outside the box.

The AGM was another chance for Fibromyalgia to be noticed and assist in providing Senior staff and Practitioners with an insight into the condition.

As a result of attending, the AGM, and after discussion with Chris Stamp from the ambulance service, we may have the opportunity to make a presentation about Fibromyalgia to Ambulance crews throughout the region. Watch this space for further news!!!

BRINGING PAIN MANAGEMENT CLOSER TO HOME

The British Pain Society Patient Liaison Committee Voluntary Sector Seminar 2010

Tuesday 12th October 2010, 10am – 4pm

Free registration (includes refreshments and lunch)

Each year the Patient Liaison Committee hosts a seminar for the voluntary sector. This year the seminar will be about delivering pain management services in the local community.

You will hear about the policy framework and of successful initiatives to run community pain management programmes. Then, in interactive workshops, you will have the opportunity to tell us what pain services in the community should look like and how we can support the planning of new services.

Place:

Churchill House, 35 Red Lion Square, London WC1R 4SG

For whom:

All with an interest in pain management in the local community including: voluntary sector organisations; individuals living with pain or caring for someone with persistent pain; health professionals working with people with pain; professional associations and statutory bodies.

Programme outline:

10:00 – 10:30 Registration & refreshments

10:30 – 10:40 Welcome and feedback from last year,Ms Nia Taylor

10:40 – 10:55 Setting the scene, Dr Martin Johnson

10:55 – 11:10 Models of pain management in the community, Mr Pete Moore

11:10 – 11:25 Models of pain management in the community, Val Conway

11:25 – 11:45 Refreshment break

11.45 – 13.00 Workshop session A - What

aspects of pain management should be delivered in the community?

13:00 – 13:45 Lunch

13:45 – 15:00 Workshop session B - How does a community pain service fit within the health economy?

15:00 – 15:15 Refreshment break

15:15 – 16:00 Final session: summary and feedback, chaired by Dr Martin Johnson andMs Nia Taylor

16:00 Ends

For More Information & Booking Contact:

The British Pain Society

3rd Floor, Churchill House

35 Red Lion Square

London

WC1R 4SG

Tel: 020 7269 7840

Fax: 020 7831 0859

Email: newsletter@

PERSONAL STORIES

It is good to see members sharing their personal stories, and I would like to encourage more of you to send in your own stories. It is always good for members to read about others and particularly if it is about a positive experience.

You never know when something you have felt, or tried, that has helped you, will help someone else. Don’t be discouraged if you have difficulty putting things into words, just give the bare bones and I will do the rest.

NEWSLETTER ITEMS

Items for inclusion in this newsletter are very welcome, but please note that the newsletter is about Fibromyalgia and related information, for those with Fibromyalgia, and their supporters. It would be helpful, if you are able, if you can send it via email.

The inclusion of articles and features in this newsletter does not necessarily infer endorsement by the group/Association. Any advice or recommendation of a medical nature, given in this newsletter, should always be discussed with a medical professional. The group/Association cannot be held responsible for omission and /or errors.

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NEWSLETTER

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