FIBROMYALGIA SUPPORT GROUP (MEDWAY)



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16 Barberry Avenue, Chatham Kent ME5 9TE

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

Website: fibrosupportmedway.btck.co.uk

February 2011 ISSUE 51

Next Meeting: Thursday 24th March, at St Stephen’s Church Hall, Maidstone Road,

Chatham ME4 6JE. 1.00pm to 3.00pm

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MEETING DATES FOR 2011

Thursday 24th March – Dr Nick Read, Medical Adviser to the Gut Trust speaking about Irritable Bowel Syndrome

Thursday 26th May – Disability Benefits Centre (to be confirmed)

Thursday 28th July

Thursday 22nd September – Vanda Wright - Homeopath

Thursday 24th November

All at the above address and time.

JANUARY MEETING

We heard from Steve Porter about a new technology, and also from Bobbie Walkem-Smith about PALS (Patient Advice & Liaison Service). Reports on these will be in the next newsletter

FUNDING SUCCESS

We have, once again, been granted funding of £150 by UKFibromyalgia, for photocopying our helpful and informative articles for use at our Awareness Day in May.

Our thanks go to Martin Westby for allowing us this Grant from UKFibromyalgia (). The Grant will be received at the beginning of April in time for the event.

RENEWAL OF MEMBERSHIP

Don’t forget to renew your membership if you haven’t already done so.

AWARENESS DAY

Saturday 7th May

Don’t forget to put this date in your diaries and bring along your friends, relatives, and anyone interested in finding out more about Fibromyalgia – even your GP, if interested. As for the last two year’s events, there will be tea/coffee, biscuits, and cakes all available free. The event will be held, once again, at Thomas Aveling School, Warren Wood, Rochester. More details to follow.

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 November 2010, was £2636.28.

Expenditure since then has been, £250 00 for DVDs, £9.60 for Collection Boxes, £221.25 for 024 Fibromyalgia, and £11.96 for stationery.

This leaves a total of £2143.47.

At the January meeting and during the past two months, we raised, £41 on the raffle, £53.95 for books, £29 for pens, £16.42 for refreshments, £663 in donations, £190 for sale of 024 Fibromyalgia, £1.50 for plugmates, £4 for CDs, £158 for DVDs, £4 for Notepads and £4 for Car Stickers.

This gives a total of £1164.87 to be deposited in our bank account.

This gives us total of funds of £3308.34.

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

CHRISTMAS THANKS

Ron and I would like to thank all those who very kindly sent us Christmas cards and good wishes. It is very much appreciated.

FUNDRAISING AT ST STEPHEN’S CHURCH CHRISTMAS FAYRE

We were invited, for the second year running, to have a stall at the St Stephen’s Church Christmas Fayre. This is the church where we hold our meetings. We decided to take along the books that we sell to raise funds. It was an extremely well-attended event and we were able to sell a lot of books raising £41. As we had our display board there as well, we were able to do some awareness raising at the same time as raising funds. Our thanks go to St Stephen’s Church for allowing us to do this.

WEBSITE CHANGE

The new website is now up and running thanks to Peter and Scott. The address is fibrosupportmedway.btck.co.uk

DROP-IN COFFEE MORNING

In December we held a Drop-In Coffee Morning at the Parochial Church Hall in Ingram Road, Gillingham. Unfortunately it was not very well attended. We were pleased to be able to speak to those who came, on a one-to-one basis. The last of these events is planned for later this year.

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

Contact: Philomena (Phyl): 0844 887 2348

or e-mail: fibromyalgia.nkent@yahoo.co.uk

MAIDSTONE GROUP MEETINGS

Contact: Heather Hammond: 0845 458 3762

or heather.hammond@mypostoffice.co.uk

SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS

Contact Maria: 0845 458 3780

Email: sandsfibrosupport@

ALPHA STIM

Linda, who spoke at our November meeting about the Alpha Stim, has written the letter below:

Do you have pain, fatigue, unrefreshed sleep and fibro-fog? The Alpha-Stim can help without side-effects such as from medication.

I wanted to share with you the improvement I have gained from using the Alpha-Stim and because of this I have become state-registered again and set up a clinic to help fellow sufferers have the chance to try the micro-current devices. The Alpha-Stim is a mini computer that gives a very tiny current to help reduce pain and help cells heal. It is far more gentle and sophisticated than TENS. The Alpha-Stim is FDA approved for the relief of pain, anxiety, insomnia and depression and there have been many randomized studies done. 16 out of 18 members of the South Bucks FM support group found the Alpha-Stim helped.

After 21 years of being too disabled to work I am now working full time. My fibromyalgia has improved 40% through diet, pacing and exercise The Alpha-Stim has doubled this to 80% improvement from when I was on the point of buying an electric wheelchair 4 years ago.

If you purchase the device with my discount code you will get it cheaper than on the web site. This will also mean you get my help at the end of the phone or email for aftercare advice.

There are 3 Alpha-Stim devises. All have a 5 year warranty:

• The PPM, only AS-trodes (sticky patches), this will only deal with pain, and is not recommended on it's own for fibromyalgia.

• The SCS, only ear-clips. This helps improve sleep quality, reduce stress and depression and only mild pain relief. The ear-clips are very easy to use. It costs £240 out-right, with VAT relief.

• The Alpha-Stim 100. This is a 3 in 1 device with ear-clips, probes and AS-trodes. It helps improve sleep quality, reduce stress and depression and helps with more severe pain. The price for the Alpha-Stim 100 out-right is £350 with VAT relief. The price with the 60 day money back (conditions apply) trial is £380. There is also an option to spread payments over 6 months. 

 

I feel it is worth every penny as it has given my life back. It's not a cure and I still have to use it most days because of the perpetuating factors of fibromyalgia. The Alpha-Stim has given me more energy to deal with these.  Larger micro-current devices cost £25,000 and you need to see a therapist for treatment. The Alpha-Stim is similar to the cost of 10 osteopath treatments and you can use it easily wherever you go. I even use the Alpha-Stim on the underground and whilst working.

The appointment at my clinic for a 1 and half to 2 hour teaching session costs £50. Many find this is the easiest way to learn how to use the Alpha-Stim. You may know straight away if the Alpha-Stim will work for you. At this session you could hire a device for 4 weeks which costs £10 a week, I do have a waiting list for my devices).

To contact me for advice call 077 191 800 98. My clinic is near junction 2 on M40.

For more information look at themicrocurrentsite.co.uk

 

Linda Horncastle

State-registered Occupational Therapist and Co-ordinator South Bucks Fibromyalgia Support Group

Disclaimer:  Any views or opinions given in this letter are those solely of the author and do not necessarily infer endorsement by the South Bucks Fibromyalgia Support Group. The Group cannot be held responsible for omissions and/or errors. My advice is not intended to be a substitute for individualized medical advice, diagnosis or treatment by a qualified professional who is aware of your medical history and has had an opportunity to examine you.

PROOF THAT A GUT-WRENCHING COMPLAINT - IRRITABLE BOWEL SYNDROME - IS NOT IN YOUR HEAD

20th August 2010

Irritable bowel syndrome makes life miserable for those affected - an estimated ten percent or more of the population. And what irritates many of them even more is that they often are labeled as hypochondriacs, since physical causes for irritable bowel syndrome have never been identified. Now, biologists at the Technische Universitaet Muenchen (TUM) have shed new light on the matter: They have discovered mini-inflammations in the mucosa of the gut, which upset the sensitive balance of the bowel and are accompanied by sensitisation of the enteric nervous system.

Flatulence, constipation and diarrhoea, nausea and stomach cramps: Irritable bowel syndrome (IBS) can turn digestion into a nightmare. Frequent visits to the bathroom are often accompanied by sleep disturbances, headaches, and backaches. In Germany alone, some seven million people are affected by the disorder - and by the fact that their irritable bowel syndrome is often deemed psychosomatic. This is because the organic trigger of the disease has never been discovered, and consequently the various therapeutic interventions are disappointing for both the patients and their doctors. That may soon change, however, because now, for the first time, biologists in Munich have nailed down hidden physical causes of this bowel disorder.

Professor Michael Schemann's research team at the TUM Department for Human Biology has managed to demonstrate that micro-inflammations of the mucosa cause sensitisation of the enteric nervous system, thereby causing irritable bowel syndrome. Using ultrafast optical measuring methods, the researchers were able to demonstrate that mediators from mast cells and enterochromaffin cells directly activate the nerve cells in the bowel. This hypersensitivity of the enteric nervous system upsets communication between the gut's mucosa and its nervous system, as project leader Prof. Schemann explains: 'The irritated mucosa releases increased amounts of neuroactive substances such as serotonin, histamine and protease. This cocktail produced by the body could be the real cause of the unpleasant IBS complaints.'

The TUM researchers in human biology are blazing a trail as they follow this lead. Their current focus is to what extent nerve sensitisation correlates with the severity of symptoms. Working with colleagues from Amsterdam, they have already substantiated the clinical relevance of their results: Irritable bowel symptoms improved after treatment with an antihistamine known for its immune-stabilising effect in the treatment of allergic reactions such as hay fever. Thanks to funding from the German Research Foundation (DFG), the scientists are now investigating whether the improved symptoms are accompanied by a normalisation of nerve activity.

Successful identification of the active components could enable the development of effective drugs to treat irritable bowel syndrome. Even now, though, the TUM team have made life easier for many IBS patients, in that they have shown that the chronic disorder does have physical causes and is not merely 'in their heads.'

Source: Technische Universitaet Muenchen

CHOOSE WELL

Feeling unwell?

When you or someone close to you becomes unwell, you want to get the right help quickly.

There is a range of NHS services in Medway to help you, including at night and weekends.

Self-help

– keep plasters, paracetamol, a thermometer and over-the-counter cough and cold remedies in your medicine cabinet (out of the reach of children)

– remember to renew prescriptions in plenty of time

– cover your mouth and nose with a tissue when you cough or sneeze, throw it away and wash your hands

If you get a cold, flu or winter vomiting disease

– stay away from other people

– drink plenty of water

– take great care with hand hygiene

Ask a pharmacist (chemist)

Pharmacists give free, expert advice on medicines and minor ailments and you don’t need an appointment.

Some pharmacies in Medway are open till 11pm and on Sundays: see medwaypct.nhs.uk/choosewell for details

GP (family doctor)

Visit your GP for medical advice, treatment and prescriptions – but remember antibiotics have no effect on viral infections so they won’t be prescribed for colds, flu and other illnesses caused by viruses.

If you need to see a GP urgently:

– your practice will try to fit you in

– they will be able to refer you to MedOCC

– or you can go to the walk-in centre, at 547-553 Canterbury Street, ME7 5LF, 01634 575232

If you need to see a GP urgently at night or weekends

– phone Medway On Call Care (MedOCC) on 01634 891855

Minor injuries

For injuries which may need cleaning, stitching or dressing, you can visit:

Sheppey Community Hospital, Plover Road, Minster-on-Sea ME12 3LT or

Sittingbourne Memorial Hospital, Bell Road, Sittingbourne, ME10 4DT

For advice and information

– If you are not sure what to do, call NHS Direct on 0845 4647 or visit nhs.uk

For confidential, emotional support and advice

– In the evenings and at weekends, contact the Mental Health Matters helpline on 0800 107 0160

Emergency

In an emergency, dial 999 or go to the emergency department at Medway Maritime Hospital, Windmill Road, ME7 5NY.

These services are for people who are seriously or badly injured – please use them only if you really need them.

For further information, visit medwaypct.nhs.uk/choosewell or phone NHS Direct on 0845 4647

For health-related queries or concerns, contact NHS Medway Patient Advice and Liaison Service on 0800 014 1641

HANDLING GLOOMY DAYS

(Editor’s Note: The following three articles were sent in by another Regional Co-ordinator working with FMA UK)

One patient wrote to us asking: "How are we supposed to deal with the cold winter days ahead when the sun doesn't shine?" Good question. It's hard to keep an upbeat attitude if it looks gloomy outside, especially when your chronic symptoms are already negatively impacting your mood.

If you find yourself struggling to maintain a positive outlook at any time of the year, consider using some of the self-help tips provided below to stay entertained and help keep your mind off your Fibromyalgia symptoms.

• Call friends

• Get on the Internet and chat with other patients through Facebook and other social networks.

• Write to people you miss seeing ... maybe they'll write back to you too.

• Plan ahead for a simple weekend activity that involves other people (many support groups meet on the weekends).

• Go out for Saturday lunch or Sunday brunch - meals you don't have to prepare.

• Pick an interesting topic that you want to know more about and read up on it. If you don't find yourself looking forward to learning more about it each night, the topic isn't right or this idea isn't for you.

• Learn a new art, craft, or hobby on the weekends that you can do indoors at night. You will lose track of time and end up with a sense of gratification at the completion of each project. Make up for the dreary outside by having plenty of light in your home for these activities (e.g., 100 watt bulbs or halogens for that ball-field effect).

HURDLING PAINFUL FLARE-UPS

How do you stay calm when the pain is so great that it is just about ready to push you over the edge of sanity? The moment that you sense your pain is starting to intensify, here are a few suggestions that might help you hurdle your next flare-up and, hopefully, ease its impact.

Schedule more sleeping time. Either go to bed earlier or arrange to sleep in. If you are having increased difficulties sleeping, you might call your physician's office for advice about medications that your doctor can prescribe to help in the short-term.

Increase the number and length of relaxation breaks you take. In other words, treat your body with as much TLC as you can.

Avoid confrontations and stress (both physically and emotionally). If possible, put family and work problems on the back burner. You can solve them, along with the world's woes, at some later date when you are feeling better. However, if a problem is beginning to fester inside of you, let it out. Talk to a spouse or friend whom you can trust. Some people find that venting their problems on paper helps them rationalize the situation and gain a better perspective on what is eating away at them.

Ease up a bit on your weekly exercise routine (if you have one), but don’t totally abandon it because it will be too difficult to crank up the old routine again when you are feeling better.

If you or a close friend/neighbour has a hot tub, try to spend some time relaxing in it each day. Otherwise, take frequent, long hot showers. Warm water can be soothing to painful muscles. Depending on your past experience, massages and other types of hands-on therapies may bring you relief as well.

Try to engage in activities that help take your mind off the pain. Also try doing things that give you a sense of gratification; this type of positive reinforcement will help you be more optimistic about your future.

Some people put things aside to do for rainy days; you might want to consider putting things aside for your painful days!

FEELING NEGATIVE ABOUT YOUR ILLNESS OUTLOOK?

"Do you know what my Fibromyalgia is?" one mother inquisitively asked her young daughter. "Yes, mommy, it's what makes you grumpy!"

An optimistic person might say that there's a silver lining to everything in life; you just have to look for it. But searching for life's fulfilment isn't easy, and it can be especially difficult if you have a chronic illness that interferes with your daily activities. Yet, keeping a positive outlook may be your best survival tactic for learning to live with your illness.

Sure, you have ample cause to feel angry, frustrated, and grumpy about your Fibromyalgia or chronic fatigue syndrome. For many, Fibromyalgia is like a bad dream that has come true. But do you think your family, friends or co-workers like to see you gloomy? No! They would prefer to be around someone who is happy, someone who exudes cheerfulness. Friends may not tell you to get a better attitude ... that would be insensitive and rude. Instead, they may simply choose to keep their distance and leave you alone!

But you don't want to be left alone. You need your family and friends to help cheer you up and get through the bad times—whether they be the financial strain of medical bills or the Fibromyalgia symptoms themselves. So appearing down and out (regardless of how you feel), isn't to your advantage.

Here are just a few tips on how to keep a positive outlook:

• Refuse to worry about any negative elements in your life that are beyond your control. Too many negative thoughts can land you in the dumps emotionally, but it takes continuous effort on your part to prevent unpleasantries from crowding your outlook on life.

• Do not take on other people's problems. You have all you can handle keeping your own focus positive.

• Save a few minutes each day to visualize the world around you, and try to think of at least one way to make your outlook brighter.

• When anticipating what lies ahead in a day, think about the good things that can happen. Beginning each day with an optimistic thought can actually help you make it through the day.

• When replaying the events of a day, think about your accomplishments. Sure, you could have done more, but don't think about that! Even healthy people wish they could get more done in a day, so don't get caught up in that line of thinking.

• Share what you are learning about attitude with the person you care most about.

Maybe you can help them adjust their attitude and you both will be a lot happier!

Changing your outlook and building a positive attitude with a chronic illness is no easy task, but it can greatly improve your life. You can keep your old friends (if you want) and make new ones as well. You can change the way people view you, and they certainly won't associate your Fibromyalgia with grumpiness!

US SURVEY OF WOMEN WITH FIBROMYALGIA HIGHLIGHTS ITS PROFOUND IMPACT & THEIR STRUGGLE FOR ACKNOWLEDGMENT

December 5, 2010

"It is estimated that there could be as many American women living with fibromyalgia as there are living with diabetes,” and for 79% of them a top issue is finding a doctor who takes their condition seriously.

Results released November 22 from a national survey of U.S. women with Fibromyalgia illustrate the private and prolonged physical and emotional struggles patients with this condition face, underscored by delays in diagnosis, which a majority of respondents report as being one year or longer.

As a result of Fibromyalgia:

• Two thirds (67%) of respondents say they are unable to keep up with household chores,

• Nearly half (47%) report that their work life or career has been negatively affected,

• And two in five (42%) spend less quality time with their friends.

• Nearly one third (31%) say Fibromyalgia has negatively affected their ability to experience intimacy.

Fibromyalgia is a condition marked by chronic, widespread pain and tenderness, and decreased physical function. It affects six to 12 million Americans, mostly women, three-quarters of whom are estimated to be undiagnosed.

Results of the 48-state, 508-person survey were released by HealthyWomen (), the nation's leading independent source of health information for women. The survey was sponsored by Forest Laboratories, Inc.

"Fibromyalgia is a common medical condition affecting women," says Elizabeth Battaglino Cahill, Executive Director of and a registered nurse. "It is estimated that there could be as many American women living with Fibromyalgia as there are living with diabetes. And while increased awareness has dramatically improved care for patients with this condition, we still have a lot of work to do to ensure patients have the support they need to live their lives fully."

Remarkably:

• One in four (23%) respondents report having suffered for at least five years before receiving a diagnosis for their condition.

• Most respondents (71%) say they waited until they could no longer tolerate their symptoms before seeking a diagnosis.

Examples of perceived barriers to a proper diagnosis include patients' own lack of knowledge about the condition and physicians not recognizing symptoms.

Although Fibromyalgia is a chronic disorder:

• A majority of respondents say they fear scepticism about their condition,

• With 64% expressing concern about being taken seriously,

• And 79% indicating the top quality they seek in a healthcare professional is assurance that their condition is being taken seriously.

"This survey quantifies what patients and their supporters have known and experienced – that stigma, scepticism, lack of knowledge about Fibromyalgia, and delays in diagnosis contribute negatively to patient outcomes," adds Battaglino Cahill.

"However, with more knowledge, patients are overcoming these barriers to improving their lives, and that is an important lesson we can take away from this survey."

Early diagnosis is Important 

Respondents whose diagnosis was delayed were more likely to report severe symptoms (68%) at the time of diagnosis, compared to those who were diagnosed within a year (42%).

Patients diagnosed within a year are also significantly less likely to experience daily challenges in management of their households, relationships and careers.

"An earlier diagnosis is important," says David Edelberg, MD, founder of WholeHealth Chicago and a physician specializing in Fibromyalgia treatment. "The sooner patients are diagnosed, the sooner they can begin an effective management plan and get back to their daily activities. This is why it's critical for both doctors and patients to communicate effectively and for patients to not wait until they can no longer bear their symptoms before seeking help."

Effective treatment and support from loved ones are critical.

Since being treated, 51% of patients believe that their overall day-to-day life has improved.

In addition, a greater number of patients who received more support from their spouse report that their day-to-day life has improved due to treatment (56%), compared to those who received the same amount of or less support (47%) since being treated.

Respondents say the following types of treatment have improved their symptoms:

• Prescription drug therapy (58%)

• Exercise (46%)

• Alternative therapies (43%), such as massage, meditation, acupuncture and chiropractic care

Unfortunately, many patients do not receive the support from friends and loved ones that they need:

• Of the 43% of respondents who say they rely most often on their spouse or significant other for support, only about a quarter (27%) say this person fully understands how Fibromyalgia affects them

• After learning about their diagnosis, less than half of respondents say their friends (28%), children (33%) and spouses (43%) offered more support.

"Arriving at an earlier and accurate diagnosis is only the first step for patients with Fibromyalgia," says Battaglino Cahill. "Women need to work closely with their physicians to find an effective treatment plan, and friends and loved ones must do their part to provide the ongoing encouragement that is critical to a patient's improvement."

About the Survey

The survey, known as WE FEEL (Women Expressing Fibromyalgia's Effects on their Everyday Lives), was designed to gather data and better understand perspectives on diagnosis and treatment, the relationship between Fibromyalgia patients and their physicians, the impact of the condition on patients' daily activities, and the types of support patients need and receive.

Research for WE FEEL was conducted by Edelman StrategyOne, using the field services of Harris Interactive Service Bureau. The 20-minute survey was fielded between May 5 and May 11, 2010. The findings are nationally representative of diagnosed, female Fibromyalgia sufferers in the US.

The total sample of 508 yields a margin of error of ±4.4% at the 95% confidence level, which means that 95 out of 100 times that a sample of this size is drawn, the results will not vary by more than 4.4 percentage points in either direction. The statistical significance is reported at the 95% level.

Source: news release, Nov 22, 2010

PRESS RELEASE FROM JEANNE HAMBLETON ABOUT HER FORTHCOMING CONFERENCE

Fibromyalgia Conference & Pamper Weekend in April 2011.

The first South East conference in April 2010 was a  ‘win, win’ success with 12 leading speakers presenting new information back to back over two days and sharing new research, educational sources, hints, tips about various aspects of this invisible disability. Delegates from all over the UK, Ireland and even the Continent were spoilt for choice with presentations, workshops, Sunday shopping, arts and craft and exhibition.

At the next conference fibromites will hear news from the United States, following our invitation to two American doctors at the cutting edge of research – Dr Andrew Holman and Dr Patrick Wood.

We also have some other exciting speakers with some to be confirmed including a  consultant rheumatologist who specialises in CFS and CBT; another similar consultant who speciality is lupus (auto immune system); a nutritionist who has the answers about vitamins and supplements; pain management specialist who is a chartered physiotherapist. We have a qualified nutritionist who will talk about vitamin, supplements as well as IBS and Cystitus.  Dr Nick Avery is back with his CAM remedies. An international author, healer and broadcaster as seen on TV  will share her motivational story, and  our pharmacist with the low down on new drugs.

Friday night will be fun at the races with the Fibro Fillies and a surprise race. Saturday evening entertainment is another surprise (even to us - as we have not booked anything yet) and Sunday is Mind, Body and  Soul day with a  psychic evening.  All this plus cabarets and dance band will offer lots to choose from. There are outside activities for partners/carers too.

As requested we will again be doing computers for beginners thanks to Stella who is a web mistress. Also there was a demand for the hygienist and dentistry workshop again and Jane has been swotting up to bring new information to the workshop. We will have a new stress gadget. One fibromite is giving us her own version of ‘Who do you think you are’ to get you going with your family tree.  Another member will tell us how she shed her wheelchair and sticks within weeks of a drastic change to her diet taking natural remedies. We are hoping to have Pilate's, tai chi and a yoga laughter workshop to keep you in trim. Our workshops include inspired coaching to help get you back to work if this is your aim, a benefits forum we hope, dealing with stress and sound therapy,

We will again be able to offer a limited numbers of one to one therapies. To date we have organised Iridology, Bach Flower Remedies, Reiki, Mediumship, Tarot, Astrology, Acupuncture, Colour Analysis, (clothes, make up and wardrobe), Reflexology, and Alexander Technique.

In addition you will be able to choose beauty treatments including Mini Reviving Facial, Swedish massage and Aromatherapy massage of back, neck and shoulders, Hot Stone Therapy massage, Indian Head Massage, Signature mini manicure, File and paint nails, Signature Mini pedicure, and St Tropez spray tan.

We will be giving you the telephone number to book your own appointment once this is all finalized and we have a skeleton programme. There will also be other therapies available on the Sunday in the ballroom as pamper tasters at a modest cost.

We have no single rooms left – only twin singles, or 1 double bed or a two room chalet for 3 people in 1 double bed and 1 single bed. The cost for the long weekend includes, full board, accommodation, conference, workshops, exhibition, Sunday sales. All chalets have heating if required, colour TV and tea making facilities we cannot guarantee what the en suite facility will be but we will try to help with your preference. 

The fee is £140 per person from April 8/11 2011. At this late stage 50% deposit is requested - £70 - but to help we will accept 3 cheques totalling £50, £45 and £45 dated December 8, January 8 and February 8. The closing date is Feb. 8 and if full payment is not paid by that date we cannot guarantee your booking will be secure.

Contact Jeanne on 0845 3455942 or email: jeannehambleton@

After meeting the costs of the conference, funds will be passed to the Folly Pogs FM Philanthropist UK Research Fund, which is not operated by FMA UK.

INTRODUCTORY SELF-HELP COURSE FOR CFS/ME & FIBROMYALGIA

This six-week online class is solution-oriented and teaches practical skills for managing CFS and Fibromyalgia. The course explains how to manage symptoms such as fatigue, pain and poor sleep. It also discusses pacing, stress management, relationships, emotions and loss.

Offered quarterly and conducted via email list server, the class is a structured discussion group. It is led by trained volunteer moderators, all of whom are course graduates and CFS or FM patients. As a discussion group, it offers the opportunity to meet and share support with fellow patients. Graduates of this class can join a free alumni discussion group and/or take two advanced courses on self-management plans: Creating Your Plan and Living Your Plan.

Cost & Registration

The course fee is $30 for people in the United States and Canada (slightly higher elsewhere). This fee includes a copy of Managing Chronic Fatigue Syndrome and Fibromyalgia: A Seven-Part Plan.

A limited number of partial scholarships are available for low-income students. Register online or by mail.

Schedule

The course is offered four times a year: January, March, June, and September.

Topics include

• Managing fatigue, pain and sleep

• Pacing

• Achieving short-term goals

• Managing stress

• Managing feelings such as worry, frustration, depression and loss

• Improving relationships and building support

Course details

• 6 weeks long

• Groups consist of about 15 people each

• Led by trained peer volunteers (people with CFS or Fibromyalgia)

• Taught via list server (email). All you need is an email address to participate

• After course, can join free alumni discussion group and/or take Creating Your Plan and Living Your Plan courses.

For more information, visit:



DVD of FIBROMYALGIA CONFERENCE PRESENTATIONS

BY PROFESSOR ERNEST CHOY & MARGARET ROBSON

In October 2010, the ICATS team from Eastern & Coastal NHS ran a Conference for Doctors and Healthcare Professionals at the Ashford International Hotel in Kent on “The Advances in Chronic Pain Management”.

The main speaker of the day was Professor Choy who gave an excellent presentation on the “Recent advances in the understanding and treatment of Fibromyalgia”.

This was followed by a presentation by Margaret Robson, the Co-ordinator of the Fibromyalgia Support Group (Medway) and Regional Co-ordinator for Kent for FMA UK, about the “Effects of Fibromyalgia - a Patients’ Perspective”.

A DVD of these presentations has been compiled and is now available to purchase.

Those with Fibromyalgia and their carers/supporters, who have previewed the talks, have found that it is an excellent tool for explaining, to people around them, the symptoms, and the way in which they impact on the sufferers’ life and lifestyle. The talk by Margaret Robson is particularly helpful as Margaret has Fibromyalgia and is able to ‘tell it as it is’. If you have difficulty explaining to family and friends how you feel, then this DVD is for you.

For copies of this DVD, please send a cheque for £4 for each DVD, made payable to Fibromyalgia Support Group (Medway), together with your name and address to:

Margaret Robson, Fibromyalgia Support Group (Medway), 16, Barberry Avenue, Chatham, Kent, ME5 9TE

MEDWAY MOBILITY SHOP AWARENESS DAY

Medway Mobility at 286 High Street, Chatham are holding an Awareness Day at the premises on Monday 14th February. It starts at 10am with a welcome and tea/coffee, then there will be talks by the Managing Directors, Mr Wombell and Mr Cotter. This will be followed by Caroline showing the products available. Following this will be a time for questions, then the results of the raffle at 11.30am.

Caroline gave an excellent talk at our meeting in September and a number of members have had very good service at the shop.

LIVING WITH CHRONIC PAIN CD

For a copy of this excellent CD, please send a cheque, payable to Fibromyalgia Support Group (Medway), for £5 (includes £1 p&p), to the address on the front of this newsletter.

PREPARING IN MEDWAY FOR NHS CHANGES

Preparations are underway in Medway to ensure that the NHS is ready for future changes.

The government’s Health and Social Care Bill, to be laid before Parliament, sets out a vision for an NHS where, by 2013, groups of GPs (consortia) will control most of the spending on healthcare.

They will decide what health services are needed locally to meet local people’s needs – ranging from services for everyone to the most specialist kinds of care.

Meanwhile, local authorities will take over planning and paying for services to improve health in their areas, such as Stop Smoking or healthy weight programmes.

In Medway, 12 GPs have been elected by their colleagues to look at options for consortia and make a recommendation to be considered by all GPs in Medway.

Peter Green, Medical Director of NHS Medway and one of the 12 GPs elected by their colleagues, said: “We are examining options carefully and consulting health and social care partners in Medway so we recommend the one that provides most benefit to people in Medway.

“We want to make use of the good local knowledge and close local ties that we have, while at the same time being large enough to be effective and manage the financial requirements that will be placed on consortia.”

As a result of the transition of primary care trust (PCT) functions to the GP commissioning consortia and local authorities, PCTs will no longer be needed. It is planned for them to cease at the end of March 2013.

Helen Buckingham, Acting Chief Executive of NHS Medway, the primary care trust for Medway, said: “We are working with GPs and Medway Council to ensure a smooth and seamless handover which will enable the future NHS to commission even more effectively, resulting in better services for people in Medway.”

Information provided by Council for Voluntary Service (Medway)

FUNDRAISING ITEMS FOR SALE

Don’t forget that we have the following items for sale:

Car Window Stickers at £1 each

Plugmates at 50p each

Pens at £1 each

024 Fibromyalgia at £12 each

Notepads at £1 each

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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