16 Barberry Avenue, Chatham Kent ME5 9TE

Telephone: 01634 865925 E-mail: fibromedway@yahoo.co.ukWebsite: www.fibrosupportmedway.btck.co.uk

December 2010 ISSUE 50

Next Meeting: Thursday 27th January, at St Stephen’s Church Hall, Maidstone Road, Chatham ME4 6JE. 1.00pm to 3.00pm

********************************************

MEETING DATES FOR 2011

Thursday 27th January – Bobbie Walkem-Smith from the Patient Advice & Liaison Service (PALS), Medway Maritime Hospital, & Steve Porter who will be speaking about a new Technology that has helped some with Fibromyalgia.Thursday 24th March – Dr Nick Read, Medical Adviser to the Gut Trust speaking about Irritable Bowel SyndromeThursday 26th MayThursday 28th JulyThursday 22nd SeptemberThursday 24th November

All at the above address and time.

NOVEMBER MEETING

Another excellent and interesting meeting. There will be more details of the Alpha Stim, talked about and demonstrated at the meeting, in the next newsletter.

MARGARET SPEAKS AT DOCTORS CONFERENCE

The conference was held at the Ashford International Hotel in October, for Doctors and Healthcare Professional. A report is on pages 8 and 9.

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.

1

NEWSLETTER

COFFEE & INFORMATION MORNING(Funded through Cllr Andy Stamp’s Ward Improvement Fund

from Medway Council)Come along and join us for a cup of tea or coffee. Bring along your family or friends who are interested in finding out more about Fibromyalgia. We will be available to answer questions and supply information about Fibromyalgia. On Tuesday 14th December 2010 from 10.15am to 11.45am at The Parochial Hall, Ingram Road, (between Portland Road and Grange Road), Gillingham ME7 1YL

FUNDING UPDATE

The balance in our Bank Account at the end of September 2010, was £3385.56.

Expenditure since then has been, £475.74 for photocopying, £688.39 for Postage, £20 for Library, £210.10 for 024 Fibromyalgia, £91 for notepads for sale, £25 for plugmates, £196.39 for stationery, £368.55 for hall hire, £244.81 for Insurance, and £61.60 for Sundries.

This leaves a total of £1003.98.

At the November meeting and during the past two months, we raised, £36 on the raffle, £9.50 for books, £27 for pens, £13.40 for refreshments, £32.40 in donations, £148 for sale of 024 Fibromyalgia, £4 for plugmates, £24 for CDs, £19 for Car Stickers, £19 for notepads, and £1300 from Grassroots Grants.

This gives a total of £1632.30 to be deposited in our bank account.

This gives us total of funds of £2636.28.

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

AGM

Our seventh AGM will be held at the beginning of the January meeting. If there are any committee nominations please let me know.

WEBSITE CHANGE

Our website provider, another charity that has hosted us since we started, has now been taken over by BT. As we were not aware of this until the eleventh hour, it has been a

scramble for Peter, our Website Manager, to make the necessary changes. It has meant that we have to have a new website name (www.fibrosupportmedway.btck.co.uk) – a big problem for us as it is on over 10,000 leaflets as well as our promotional material, and on various other websites and agencies – and the site also has to be reconstructed. So please bear with Peter whilst he does this. We will also do the best we can with changing details in the various places.

Due to this problem, those who have opted for taking the newsletter from the website will be sent the newsletter by post until we have the new website up and running.The good news is that the website will still be provided free of charge.

NORTH KENT GROUP

Contact: Philomena (Phyl): 0844 887 2348or e-mail: fibromyalgia.nkent@yahoo.co.uk

MAIDSTONE GROUP MEETINGS

Contact: Heather Hammond: 0845 458 3762or heather.hammond@mypostoffice.co.uk

SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS

Contact Maria: 0845 458 3780Email: sandsfibrosupport@googlemail.com

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.

CHRISTMAS GREETINGS

We would like to wish all of you, and your families, a very happy Christmas and a happy (and pain-free) New Year. We look forward to seeing you all again in 2011.

2

ATOS HEALTHCAREA talk given by Margaret at the September

meeting

ATOS Healthcare is a large International company that employs 50,000 people throughout the World. In the UK it has over 3000 employees. Of these around two thirds are medical professionals. ATOS engage and employ the largest number of doctors outside of the NHS, across Disability Assessment, Primary Care, and Occupational Health. The staff includes a large number of advisers, counsellors, operational managers, administrators and support roles. They engage in lasting partnerships with public and private bodies to find the perfect balance of skills needed to realise a shared vision of excellence in healthcare. In the UK, they have established relationships with public and private organisations including the Department of Health, Primary Care Trusts, as well as with professional and governing bodies such as the medical Royal Colleges, the General Medical Council and the Nursing and Midwifery Council.

It is a diverse company and amongst other things provides consultancy programmes for different work locations, this includes regular health checks for employees of the companies that it is contracted to. ATOS is also responsible for the ‘choose and book’ system operated in the NHS and through GPs surgeries. ATOS is a company that has its finger in a lot of pies. We, in the Fibromyalgia community, are especially interested in ATOS because they provide the Doctors for the Department of Work & Pensions who examine benefit claimants, on the behalf of the DWP, sometimes at home and sometimes in centres designated for that purpose. They work with the General Medical Council and are very concerned that Doctors should be kept up to date. They employ 410 full-time Doctors, nurses, Psychotherapists, and Occupational Therapists. They train and mentor and monitor, retrain and manage 2,000 Doctors and Managers, 200 of whom are in the South East. The South East region consists of Kent, Sussex, Surrey, South and Central London,

Berkshire, and Hampshire. They have 22 fulltime Doctors for our specific region of Medway.

The Contract Doctors do examinations for one or two days a week. They employ Doctors from all areas of speciality. Before they employ them, they are given a first interview. A quarter of them are eliminated at this stage. Those who pass this stage are then trained. More are eliminated after taking the exams. Those who pass the exams then start work. The amount of training they get depends on how experienced they are. They will first go out with a trained Doctor and their first ten reports are monitored. If these don’t come up to the standard required, they are then retrained. In all cases they are required to attend five days a year on-going training.

ATOS has an Integrated Quality Audit System and they continually randomly pick out reports for a specialist auditor to look at and mark on quality. This includes the way the Doctor describes the symptoms, and whether it fits into the criteria. The reports have to pass a certain number of points. If the report is illegible it is not accepted. They have a grading system with A being good, and C being no good. If the Doctors get a C they are immediately retrained. If a Doctor get more than four or five B quality reports they will have a word with them, but if they carry on getting Cs despite retraining, they will stop using them. This is part of the contract with the DWP, and they could be fined hundreds of thousand pounds. It would not be cost effective to keep employing these Doctors.

As well as looking at a Doctors grade, they also look at the number of complaints received about the Doctor. The complaints are very useful as they tell them something about the Doctor. These are analysed. Their contract with DWP means that they cannot afford to have too many complaints and so they will try to ensure that claimants have no reason to complain. Dealing with complaints is time consuming so they don’t want this to happen. Not a large number do complain. People write to DWP and these are forwarded

3

to ATOS Healthcare. All of these complaints are investigated. 35% of the complaints are about the Doctors manner, 23% are due to the examination (too long, too stressful, too short, or inappropriate), 18% is that the claimant disagreed with the clinical findings.

ATOS Doctors do not decide the claimant’s level of entitlement. They are unable to give individual claimants advice, or provide an opinion, on the success or not of their claim. ATOS job is to perform the medical assessment and write a report. ATOS state that the person who is undergoing the examination will be treated fairly and respectfully at all times during their assessment.

ATOS offer the following advice before, during and after the assessment:

The appointment letter will have ATOS phone number. If you are claiming incapacity benefit or employment and support allowance the number is 0800 288 8777    

You are asked to call ATOS (or ask someone else to call them) before going to the assessment if you:

Want an interpreter Want to see a healthcare professional

who is the same sex as you Have difficulties travelling to the

assessment centre Have special needs relating to a

disabilityYou can come to your assessment with a relative, friend or carer and ATOS will pay your expenses as advised on the appointment letter. Claim forms are available at the assessment centre. As many of you would be aware there have been a number of dissatisfied claimants who have been upset by different aspects of the work undertaken by the Doctors who work for ATOS. For those who have been dissatisfied with ATOS Doctors, you will be pleased to hear that the Nursing Times awarded ATOS 'Most Improved Independent Employer 2008' and were listed as a Nursing Times Top 100 company from 2006 to 2008.

However, they are often mentioned in different reports on TV and were recently (2010) the subject of a programme on Scottish television where concern was raised about a number of aspects of the medical assessment process they were involved in. ATOS, of course, robustly defend claims that their service is biased in any way and always emphasise the fact that they do not make decisions about benefits only about the claimant that they are seeing on the day. They point to a high level of Clinical Governance which overrides all other considerations.

It seems that despite all the systems they have in place there are still instances when people are given reports that do not appear to relate to the assessment that actually took place. The claimants, in some cases, appear to have an entirely different illness to the one that the assessment took place for. In Some parts of the UK as many as 40% of people are winning appeals against decisions of the DWP. Many of these appeals are based on faults in the information that was provided as part of the healthcare assessment by ATOS Healthcare professionals. In some instances the reports delivered actually related to a completely different claimant.

Fibromyalgia Association UK wrote to ATOS in 2010, requesting information regarding the briefing and training that Doctors have on Fibromyalgia before they undertake assessments. They were surprised to find that there is a comprehensive module on Fibromyalgia that all Doctors have to undertake before they are allowed to assess people with the illness.

So why do these mistakes keep taking place? Why do Doctors on the doorstep or in the assessment centre seem to have none, or very limited knowledge, of Fibromyalgia?

Remember that the majority of the Doctors are trying to do the ‘right thing’ but can only act on the information they have and what they see. It’s up to you to give them the information about your situation and your unique problems.

4

There’s no way of knowing when you make a claim for disability living allowance whether you will be asked to have a medical or not. If you are asked and refuse, however, your claim for disability living allowance will automatically be turned down.

The website www.benefitsandwork.co.uk (Cost to become a member £18.95 for a full year) provides handy tactics for DLA medicals.

The Benefits and Work website provides members with:

Details of how to ensure you get proper notice of a medical visit, rather than a phone call the night before;

A copy of the medical report the doctor will complete;

A list of the questions the doctor is likely to ask you;

A highly effective Medical Visit Record Sheet for you and your accompanying person to complete and use as evidence at a tribunal if necessary;

Details of the ‘oral warning’ the doctor may issue you with if you take notes;

Information about some doctors habit of ‘searching’ your home.

If the doctor does write an inaccurate and unhelpful disability living allowance medical report which leads to you not getting the correct award, or any award at all, they can help with that too.

Their guide to the Best Possible Ways to Challenge a DLA or AA medical report is a unique tool, with detailed sections on challenging every stage of the medical report process.

On researching the ATOS website to find out the situation regarding appeals there is a very small section which reads:

‘ATOS Healthcare aims to provide high standards of customer service. If you are unhappy with our service, please contact us or

request a customer care booklet which explains our complaint process.’

Remember this will only be an appeal against the way the Doctor either carried out the examination or the information they provided in the written report. It will not be an appeal against the Tribunal Decision.

The main thing we have been told by ATOS is that if you have a problem with the Drs assessment, please complain. Without any evidence of complaints nothing will change.

Please remember that this support group is not allowed to give any benefits advice. We can provide you with information as we have done here, but to give advice we would need to be insured and this would cost us over £3000 a year. So please remember that when you ask us about Benefits.

COPING WITH FIBROMYALGIA AT HOME

Simple strategies can make fibromyalgia manageable at homeBy Michele BloomquistMedically reviewed by Ed Zimney, MD

In today's go-go-go society, many people say they have a hard time keeping up with the essential tasks of daily life. And for those with a chronic condition like fibromyalgia, everyday jobs — maintaining the house, keeping up the yard, planning meals and cooking, dealing with the laundry — can feel that much more overwhelming.

If you're having trouble balancing it all, consider the following tips from experts at the National Fibromyalgia Association. To make life at home run more smoothly, they suggest that you:

Examine Your Standards. Many people with fibromyalgia also categorize themselves as Type A personalities. If this describes you and you're aiming for perfection, consider aiming for "good enough" — especially days when you're in pain. A perfect home is not worth your health and happiness.

5

Save Your Energy. If your job leaves you with little or no energy by the time the work day is done, consider how you can lessen the impact of your work on your overall life. Could you cut your hours? Telecommute? Delegate more? Make your work area more "fibromyalgia friendly?" Take every step you can to save some of your energy for life outside of work. The same goes for extracurricular commitments, volunteer projects, and even overbearing friends and demanding family members.

Adapt Your World. Many people with fibromyalgia find bending over or reaching above their heads can lead to pain. The good news is there are many ways you can reduce the need for such movements. For instance, try to keep a step stool handy for high shelves in the kitchen or bathroom. Use a gripping tool to pick up items instead of stooping or reaching. Scrub the tub or toilet with a long-handled mop or a sponge on a stick instead of bending over. Store cleaning supplies right where you need them, even if that means keeping duplicate sets around the house. Get creative about modifying your world so that it works better for you.

Set a Schedule. It's easier to keep up with household chores if you do a few each day rather than letting tasks build up and then trying to tackle them all at once. Try creating a schedule of jobs that need to be done daily, weekly, monthly, bi-annually, and annually to help you plan how you can ease your overall household load. If you're having a bad day, don't push it — just move the task to the next rotation or ask someone else to pitch in.

Get Help. If you were undergoing chemotherapy, you wouldn't expect yourself to do it all alone. So why should you with fibromyalgia? Don't be afraid to call on family or friends to help out when you need it. Consider hiring some chores out, like window washing, organizing, lawn care, or deep housecleaning.

Work in Spurts. Many people with fibromyalgia are tempted to overwork themselves on the "good days" to catch up.

This can do more harm than good, however, especially if it leads to a serious pain flare. So try to limit yourself to short spurts of activity, no matter how good you feel. Set a timer so you'll know when it's time to stop, or ask a friend to call you after 15 or 20 minutes if you need to. On larger projects, work for 10 minutes and rest for 10 minutes, again using a timer to remind you when it's time to quit. You'll be amazed at what you can get done in such short periods, without paying for it later.

Roll With It. To avoid unnecessary pain, rather than carrying bulky laundry or other heavy items like shopping bags, use a basket or wagon on wheels to help get the job done.

Switch it Out. If twisting doorknobs or water faucets is difficult, switch them out with S-hook type fixtures, which are easier to operate. The same goes for light switches and the like.

Downsize. When it comes to easily keeping a house tidy, less is more. Knickknacks, extra toiletry items, stacks of magazines or paper, and a huge closet full of clothes equal more upkeep. Donate or sell items you don't need and give yourself the gift of a streamlined world.

Be a Stair Master. If you live in a home with multiple levels, take steps to reduce unnecessary trips up and down the stairs. Keep a supply of everything you need on each floor. Buy laundry baskets for each level to fill with items that need to go up or down, then take everything at once. Toss laundry and other non-breakable items down stairs rather than carrying them. Every step counts!

Plan for Bad Days. Make bad pain days easier to live through by preparing for them in advance. Stock up on frozen or easy-to-prepare meals. Have some throw-away paper plates, cups, and utensils on hand. And arrange in advance for extra help you can call on when you need it.

Make Housekeeping Happier. While few people would say they enjoy cleaning the bathroom or doing the dishes, it can help to

6

make your surroundings more enjoyable if you play music, light a candle, or even just use cleaning products with a scent you enjoy. Treat yourself well by taking whatever small steps you can to make household tasks more pleasant. Remember, if you take steps to put yourself and your needs first, your home can be a haven — even with fibromyalgia

Copyright 2010 Everydayhealth.com and CarePages.com. Reprinted with permission from EverydayHealth (everydayhealth.com).everydayhealth.com/fibromyalgia/coping-physically/fibromyalgia-at-home.aspx

PAIN MANAGEMENTA report on a supplement included with a

September issue of the Times, on Pain Management

A very interesting supplement on Pain Management was in the September 28th issue of the Times newspaper. It asked the question as to why so many people in pain are suffering needlessly. It suggested that quality specialist pain management is available but in short supply. It talked of persistent pain being ‘a human tragedy’, and said that chronic pain can ‘destroy lives’.

The article stated that the new Government’s NHS plans that would devolve commissioning to GPs would not be helpful in having a national co-ordinated pain management service.

Interestingly, it seems from this article, that one in five consultations with a GP relate to pain in one form or another, but they say that only one in six sufferers of pain are able to see a pain specialist. It does say that Pain Specialists in the UK are well trained and give a high quality of service but that provision of service is patchy. In some cases this could be that the patient doesn’t realise that this is available, but in other cases it may be that the GP does not suggest this to them.

The article suggests that the answer must be better pain-management training for nurses and doctors. They say that only 1% of

relevant university syllabuses is devoted to pain.

We must acknowledge, at this point, that we are very fortunate in Medway, and indeed, Kent, in that the Pain Management Service is excellent, both in the Medway Maritime Hospital and the Eastern & Coastal NHS Pain Service. It is often just the difficulty of obtaining a referral that is the sticking point with patients. The team in the Physiotherapy Dept at the Medway Maritime Hospital involved in treating those with Fibromyalgia, have gone to great lengths to find out more about the condition and are sympathetic to our needs. The Rheumatology Dept. has also been very supportive and this has been very helpful to sufferers.

The Times article goes on to tell us that Labour’s Lord Tunnicliffe told the House of Lords in July, “It is no longer acceptable in the modern world to tell people to grin and bear it when it comes to chronic pain. For many, medical and pharmaceutical advances mean remedies are available. Political will on the part of the Government and the management of the NHS is required to deliver effective solutions.”

The article does seem to indicate that pain management training is often inadequate during medical training. In a survey by the British Pain Society in 2009, on average, it was found that the pain content of the courses they surveyed was just 12 hours. They say that Physiotherapy students received the highest amount of training, whilst Vets came in second.

Ann Taylor, reader in pain education and research at Cardiff University School of Medicine, has developed a website www.paincommunitycentre.org that went live in October. It provides pain education free for all people across the UK, including patients and relatives. She believes that pain should be managed by a multi-disciplinary team.

The supplement from the Times was very interesting and thought provoking and was an

7

excellent vehicle to bring pain management to the fore. This report just gives a snippet of the information that it contained, but we hope that the full supplement will help to raise awareness of the situation of sufferers of chronic pain.

CONFERENCE FOR DOCTORS AND HEALTHCARE PROFESSIONALS IN

OCTOBER

I was very pleased to be invited to give a talk at a Conference for Doctors and Healthcare Professionals, in the Ashford International Hotel, that was arranged by Eastern & Coastal Kent NHS Pain Team, in October. The main speaker at this event was Dr Ernest Choy, Clinical Reader in Rheumatology at Kings College Hospital in London, who is one of the UK’s leading experts on Fibromyalgia. Dr Choy spoke on the ‘Recent Advances in the Understanding and Treatment of Fibromyalgia’, and I followed this with a talk on the ‘Effects of Fibromyalgia – a Patient’s Perspective’.

There were a number of other speakers at this conference: Dr Katja Wiech, Post-doctoral Research Fellow in Pain, FMRIB Centre University of Oxford, who spoke on ‘Imaging of Pain’; Dr Thomas Smith, Consultant in Pain Medicine and Anesthesia, Guys and St Thomas’ Hospital, London, who spoke on ‘Neuropathic Pain’; Dr Neil Stanley, Manager, Clinical Research & Trials Unit, University of East Anglia, Norwich, who spoke on ‘Pain and Sleep – a Different Perspective’; Dr Ahmed El Missiry, Consultant Psychiatrist, The Pagoda CMHC, Kent, who spoke on ‘The Aches of the Psyche’; Professor Joanna M. Zakrzewska, Consultant/Honorary Professor, Facial Pain Lead, Eastman Dental Hospital, UCLH NHS Foundation Trust, London, who spoke on ‘Why Does My Face Hurt?’; and Dr Johanna Theron, GPwSI Chronic Pain ICATS, Eastern & Coastal Kent Community Services, Kent, who spoke on ‘e-Learning and Pain – 2010 and Beyond’. Unfortunately, we were not able to stay after my own talk as the whole of the time would have been too tiring but we

were able to hear Dr Katja Wiech and Dr Ernest Choy speak.

We were invited to take our display board along and there were a number of other exhibitors, including pharmaceutical companies. One of these, Grunenthal, has developed an on-line interactive resource to help establish best practice in the management of pain, for healthcare providers at www.CHANGE-PAIN.co.uk. It was very interesting to speak to them and to discover that they appear to be having difficulties accessing some GP surgeries and amongst these, they mentioned some in Medway.

We met some delegates from the Medway area, including Carol and Colin Waldock, Physiotherapists from NHS Medway. Carol is the Lead on Fibromyalgia in Physiotherapy and is always keen to keep abreast of new developments in Fibromyalgia. Also there, was a Nurse from our very own Doctor’s surgery. There was one GP from Medway from the Walderslade Village Surgery, an Orthopaedic Physician from the Medway Maritime Hospital, and another member of the same hospital.

The first talk given by Dr Katja Wiech on Imaging of Pain was very interesting. It was quite technical in some aspects, but the latter part of her talk was less technical and so easier to understand. She spoke about how different types of stimuli and their effect in the brain can be tracked with MRI scans. She also talked about the part played by support groups in assisting people to have a belief that there are alternative ways of looking at things rather than focussing on the pain. She explained that people who have a belief of any sort, under study conditions, appeared to cope better with pain.

Dr Wiech spoke about a piece of research, ‘Pioneer et al 2010’, that reported that people who are anxious cannot re-engage the connection between the area that dampens down pain and the area that livens it up. The more anxious the person is the more pain experienced. The brain responds on anticipation of pain.

8

Dr Choy was the next speaker and he gave an excellent presentation. He began by talking about the high percentage of people in the population who have Fibromyalgia – 2%-5% in the USA and Europe are diagnosed. He said that, in some quarters, it is thought that if they were all diagnosed the result would be a heavy financial burden for the NHS.

However, he said, the reality is that the money is mostly spent on testing before the diagnosis is made and there is now strong data to support the premise that, once a person is diagnosed with Fibromyalgia, the number of visits to specialist professionals decreases quite significantly. Therefore, in his opinion, an early diagnosis of the condition is a means of saving large amounts of money by the NHS, simply because the longer between the onset of symptoms and the diagnosis, the more specialist investigations take place and therefore, the cost to the NHS increases manifold.

He, also, spoke about MRI scans and how they could show the parts of the brain that were affected by pain and how different levels of pain were recorded using stimuli during research. Functional MRIs show pain is felt at much lower thresholds in people with Fibromyalgia, they show multiple centres in the central nervous system are involved in pain processing and how one reacts to it. It’s very possible that the descending inhibitory spinal pathway is not activated effectively in people with FMS, leading to hypersensitivity and increased sensations of pain.

He said that tricyclic antidepressants are still the most widely used drug for managing Fibromyalgia. Research shows up to 25mg of Amitriptyline to be the most effective dose. He also spoke about the use of Milnacipran as he felt this often helped people with Fibromyalgia who are unable to tolerate Amitriptyline.

Dr Choy also spoke about sleep studies that had been done and said that it was very clear that once the patient was into a cycle of either no sleep or interrupted sleep the pain cycle then became more severe. Part of the answer,

he felt, could be in ensuring that the patients were able to have a deep sleep.

Following on from this, he talked about a drug called Sodium Oxybate that the patient takes when they are in bed, then sets an alarm for four hours later, wakes up, takes another dose and goes off to sleep again. Although this appears disruptive to sleep, he said, it actually isn’t, because the depth of sleep attained during the four hour periods is more than sufficient to assist in breaking the cycle of pain. Unfortunately, because there are a number of issues with this drug, the Food & Drug Administration in America will not license its use, and it is not licensed in the UK.

Dr Choy spoke about his work as Chairman of the European League Against Rheumatism (EULAR) that was charged with developing guidelines for the management of Fibromyalgia.  The group included rheumatologists, neurologists, physiotherapists, a patient representative and pain specialists involved in the management of Fibromyalgia.  This group reviewed the evidence that treatment helps people with Fibromyalgia and came up with a 9-point recommendation that it is hoped will be implemented throughout Europe.  Eular recommendations define FMS as heterogenous. The potential for defining sub groups would possibly allow better management of Fibromyalgia in the future.

Dr Choy was asked about the new diagnostic criteria being developed in America. He said that it should not be used on its own. There is room for both but he didn’t understand why practitioners couldn’t just use the tenderpoint test as it was the easier and most effective to use. He emphasised that, at this time, it wasn’t being adopted in the UK.

Questions were asked about Calcium and Magnesium supplements and gender differences. Dr Choy answered that Calcium, vitamin D and magnesium supplements have not produced a massive improvement in Fibromyalgia symptoms. He also said that he has found a big gender difference in pain

9

processing, with women having a lower pain threshold and a higher number of tender points than men.

My own talk followed on from Dr Choy’s and I had half an hour to explain how having Fibromyalgia had an effect on daily living. This talk was given again at our November meeting and will be reproduced in the February newsletter.

We have also been promised a DVD covering my talk and Dr Choy’s presentation, and we hope to make copies of this to sell in due course.

Margaret

Editor’s Note: My thanks to Carol Waldock for providing some notes to add to our own memories of the presentations. Also, for the following notes on the later presentations.

Neuropathic Pain by Dr. Thomas Smith

Dr Smith said that the main problem with pain is that we cannot see it. Neuropathic pain is characteristically a lesion or dysfunction with the nervous system; it is usually chronic, having huge psychosocial repercussions. Over 50% of people with neuropathic pain either do not work or work decreased hours.

The research Dworkin RH et al 2007 in ‘Pain’ suggests evidence based recommendations for the pharmacological management of chronic pain.Neuromodulation can be used for pain of neuropathic or ischaemic origin, allowing enough pain reduction to enable rehabilitation.

Pain and Sleep by Neil Stanley

Neil Stanley said that sleep disorders frequently develop into chronic co-morbid conditions. He said that a high proportion of sleeplessness is due to poor quality beds.

He also said that sleep affects all the organs of the body and the brain.

The aim to treat what keeps you awake. There is a wide variety of normal sleep patterns ranging from 3-11 hours. One hour less than what’s normal for you can lead to sleep problems.

Neil said that sleep loss may affect metabolism and inflammatory responses leading to altered immunity. 50% people with pain suffer sleep loss. If you are tired you perceive more pain, so chronic pain leads to more insomnia.

Aches of the Psyche by Dr El Missiry

Dr Missiry said that stress, anxiety and pain have high rate of co-morbidity.

He said that there is a high prevalence of depression in pain disorders. Often the more severe the pain is, the more severe the depression.

Increased pain can predict increased anxiety and depression. On average, 65% of depressed people report pain.

THE MEDWAY HEALTH DEBATE

Earlier this year Ron and I attended a session, arranged by NHS Medway, in Rainham, entitled The Medway Health Debate. These sessions were an opportunity to put forward views on the NHS and we reported on this in a previous newsletter.

On 26th October we were invited to a whole day consultation session at the Corn Exchange designed to bring together all the feedback from the Medway Health Debate meetings.

Helen Buckingham, Acting Chief Executive of NHS Medway, (who has spoken at one of our meetings earlier this year) was the first speaker and she gave an excellent presentation about the role of NHS Medway, what they do, their values, our rights, and our responsibilities. She also explained the NHS structure and talked about how they work with their partners to achieve their aims.

10

Helen outlined their priority areas. These are: choosing health; urgent care; dementia; end of life care; long term conditions; and mental health.

Following Helen, Jonathan Bates, Director of Finance and Assurance, talked to us about the financial budgets and how savings could be made. He gave several examples, including unnecessary follow-up appointments, being referred to the wrong consultant in the first place, being taken to A & E unnecessarily, and having a pharmacy review for drugs.

We heard a presentation by LINk, and this was followed by presentations by Niall O’Kane, Optometrist, and Joy Birdsey from the Isle of Grain Carers and Disabled Group. Niall told us about the new PEARS care service. This stands for Primary Eyecare Acute Referral Service, and means that you can be referred to certain local Optometrists when you have eye problems, rather than having to attend the hospital. Joy spoke about the successful pilot Phlebotomy service for the Isle if Grain.

After lunch, we joined two workshops. The first was about GP Services and the second was about Long Term Conditions. We made the point at both that it would cost the NHS less money if diagnoses were made more quickly. We also explained that the previous Staying Well Courses that had been scrapped a while ago, were, in fact, very beneficial to those with chronic conditions, and, more specifically, to those with Fibromyalgia.

We were told by Simon Truett, Senior Commissioning Manager for Long-Term Conditions and Rehabilitation at NHS Medway. that some of the services at the Pain Clinic had stopped for the time being. He said that this was the Pain Management Courses. We explained that people were now accessing the ICATS Service run by Eastern & Coastal NHS and he asked for information about this.

It was a very interesting and informative day and well worth attending on your behalf.

Margaret

GET SUPPORT TO HELP YOU TAKE CONTROLTaken from

http://www.nhs.uk/Planners/Yourhealth/Pages/Yourhealth.aspx

Self care week 2010 ran from 15-21 November.

Living with a long-term condition brings challenges and it's important to have the confidence, support and information to take control of your condition. This is called self care, which means looking after yourself in a healthy way, whether it’s taking your medicine properly or doing some exercise.

Self care doesn't mean you need to manage on your own. You can expect lots of support from the NHS, including:

Healthy lifestyle support: helping you improve your diet and exercise regime. 

Information: advice about your condition and its treatment.

Training: helping you feel more confident about living with your condition.

Tools and equipment: making life easier at home.

Support networks: help with finding people to share your experiences with.

This guide will give you lots of advice and practical information. If you’re not sure where to start, our simple self-assessment tool will point you in the right direction. At http://www.nhs.uk/Tools/Pages/Longterm.aspx

If you're living with a long-term condition, this short assessment will tell you what help and support you may be entitled to. It will assess your situation and give you personalised advice and a printable checklist.

Editors Note: Apologies if you are not able to access a computer, but no alternative is given on the NHS Choices site. Also apologies for this not being available sooner as I was not notified of this ‘week’ in time to let you know.

11

THE PAIN TOOLKITFor people who live with persistent pain

A persistent pain problem can be difficult to understand and manage on an everyday basis.

The Pain Toolkit is a simple information booklet that could provide you with some handy tips and skills to support you along the way to managing your pain.

It is not meant to be the last word in pain self-management but a handy guide to help you get started - all you need to be is willing to read it and take on board some of the suggestions.

Pete Moore, who has persistent pain, asthma and osteoarthritis, has put these tools together with the help of friends, family and health care professionals - special acknowledgement to the Bradford pain Rehabilitation Programme team and NHS Kirklees PCT.

These tools have helped many people and could also help you too!

You can download The Pain Toolkit at:http://www.paintoolkit.org/

Editor’s Note: We have copies of this booklet available at meetings

DONATING BLOOD WITH FIBRO

Following the recent introduction of the ban on blood donation by people with CFS/ME, Lindsey Middlemiss, founder & chair of FibroAction, wrote to the Department of Health asking for clarification of the position regarding blood donation from patients with Fibro, especially given the overlapping symptoms of the two conditions and the fact that many people in the UK are given a dual diagnosis.

We have now had a reply to this query. The letter from Dr Barnes, Associate Medical Director - Donors, of NHS Blood & Transplant, is reproduced below for your information.

Dear Ms Middlemiss

Thank you for your letter of 27 September, regarding the new restrictions for blood donation by patients with ME/CFS and their relevance to patients with Fibromyalgia Syndrome. Colleagues at the Department of Health have passed on your letter and asked me to respond directly to answer your query.

The change to the donor selection guidelines regarding ME/CFS came into force on 1st November 2010. The amendment has been made on the grounds of donor safety, to bring practice for those with ME/CFS in line with other conditions where individuals are permanently excluded from blood donation to protect their own health and other serious central nervous system disorders. This follows a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).

There is a separate entry in the donor selection guidelines for fibromyalgia. This is because unlike ME/CFS, fibromyalgia is not currently classed as a relapsing condition or a central nervous system disease by the World Health Organisation, but as a musculoskeletal condition. At present, a donor with fibromyalgia would be accepted as long as they were well at the time and did not have any additional features of ME or Chronic Fatigue Syndrome. I understand that most fibromyalgia patients report that their symptoms do not improve over time. Therefore the condition is classed as chronic rather than relapsing and as such at the present time does not attract a lifetime deferral from blood donation, although given the debilitating nature of the condition it is doubtful that there are many sufferers who are ever well enough to donate.

The Department of Health's independent Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the National Expert Panel on New and Emerging Infections (NEPNEI), monitor developments, both nationally and internationally, in conjunction with the UK Blood Services and

12

the Health Protection Agency. All risk assessments are regularly reviewed, and if new evidence comes to light which means that risk assessments need to be amended, then this is done.

I hope this information is helpful in addressing your query.

Yours sincerelyDr S M Barnes FRCP FCEMAssociate Medical Director - Donors

This article is reproduced with permission from FibroAction.

Copyright FibroAction. All rights reserved. www.fibroaction.org

NEW GROUP FOR SHEPWAY

I was recently asked by Eastern & Coastal NHS Pain Team to set up a support group for Folkestone and the surrounding areas, following a very successful Pain Train Day that they organised and we attended with our display board.

In October we ran the first meeting and had 32 attendees. The second meeting was equally successful and they now have 34 members. Five people were happy to become the Committee and two of these will Co-ordinate the Group. We will meet with the Committee in December and they will then run the group themselves. As usual, with my Regional Co-ordinator for Kent for FMA UK hat on, I will always be available to give them any information they require.

The next new group on the agenda for next year, again asked for by the Eastern & Coastal NHS Pain Team, will be one in Canterbury. Plans are already in motion for that.

In 2007, we set up the Thanet Group that is now a very strong group, again, having been asked by Eastern & Coastal NHS Pain Team. The next Group we set up in 2008 was the Tonbridge Group, also going well. This was followed by new Groups in Maidstone and

Sheppey in 2009. Then this year we set up the North Kent Group based in Dartford. This already has over 80 members. All Groups have their own Committees and run independently of the Medway Group.

This is all good news as, once the Canterbury Group has been formed, all of Kent will be covered by Support Groups. It is really gratifying to see how much those with Fibromyalgia really appreciate the fact that a support group is being formed in their area, and the main comment that we always receive is that they no longer feel isolated with the condition. It is so good for us to watch people get to know one another and share experiences, and generally gel as a group.

Our best wishes to all the groups, and especially to all those who are taking the time to run them. Not easy for someone with Fibromyalgia!!

TALK BY DR PATRICK WOOD MD, ON THE ADVANCES IN DIAGNOSING AND

TREATING FIBROMYALGIA

Please follow the link below to watch this interesting presentation.

http://www.screencast.com/users/OFFERUtah/folders/2010%20Conference%20Videos/media/a7ea23e9-735f-4464-b257-5dec63348a26

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.

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

13

p&p), to the address on the front of this newsletter.

024 FIBROMYALGIA PACKAGING

Please note that the 024 Fibromyalgia, that we bring in from America, is not now being sent in its own boxes. We will still be able to post this to members but will ensure that we package it safely.

SLEEP, QUALITY OF LIFE AND WELL-BEING IN ADULTS WITH

FIBROMYALGIA SYNDROME

We invite you to participate in our internet based questionnaire study exploring the effects of different aspects of sleep on quality of life and well being in adults with Fibromyalgia Syndrome. The study will be conducted by Dr Mark Cropley and colleagues at the University of Surrey.

This internet based questionnaire will ask about various aspects and symptoms of your Fibromyalgia Syndrome, your well being and quality of life. The questionnaire will take no more than 30 minutes, and you can stop at any time should you wish to do so. There are clear and simple instructions before each section of the questionnaire, and all of the information you give us will be treated as strictly confidential.

It is our intention to run the same study again later in the year to look for any seasonal differences in symptoms and illness management, for which you are also invited to take part again. This only requires you to give us your email address.

Your participation in the study is very important and will be much appreciated, as it will help us have a better understanding of Fibromyalgia Syndrome and the different ways people cope with their illness. We will be sharing our results with the UK Fibromyalgia Association but no personal information that will identify you will be disclosed.

To access the internet questionnaire please go to: http://www.fahs.surrey.ac.uk/survey/Fibromyalgia/

Contact information:Dr Mark Cropley  Department of Psychology   University of SurreyGuildfordSurreyGU2 7XHTel: 01483 686928E-mail: Mark.Cropley@surrey.ac.uk

*Please note: Although this study is designed as a internet based study, paper copies may be made available for those who are interested in taking part but do not have Internet access. Please use the contact information above to receive further information.

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.

14

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.

15