16 Barberry Avenue, ChathamKentME5 9TE
Telephone: 01634 865925 E-mail:
Website:
April 2011 ISSUE 52
Next Meeting: Thursday 26thMay, at St Stephen’s Church Hall, Maidstone Road,
ChathamME4 6JE. 1.00pm to 3.00pm
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1
MEETING DATES FOR 2011
Thursday 26th May – Disability Benefits Centre (to be confirmed)
Thursday 28th July
Thursday 22nd September – Wanda Wright - Homeopath
Thursday 24th November
All at the above address and time.
MARCH MEETING
The March meeting was well attended, not surprisingly since the subject of the talk was Irritable Bowel Syndrome which affects a large number of those with Fibromyalgia.
Dr Nick Read, a Medical Adviser with the Gut Trust, was an excellent speaker. Not only was it informative, helpful and comprehensive, but Nick gave his talk in a very easy to understand way, and there was also a lot of humour, much appreciated by those present.
I would not be able to do justice to his talk by writing a report but will endeavour to put some information on the subject in the next newsletter.
FUNDING SUCCESSES
The Medway Lions Club have awarded this group £200 towards the costs of photocopying Information Packs. Our thanks go to them for this award.
We are also very pleased to announce that Cllrs. Trevor Clarke & Sylvia Griffin have awarded us £100 from their Ward Improvement Fund. They have been extremely helpful and have taken an interest in this support group during their time in office.
Our grateful thanks go to them for their support and the award of this funding.
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 January 2011, was £3308.34.
Expenditure since then has been, £102.50 for DVDs, £26.96 for Stationery, £5.76 for Sundries, £722 for postage, £16.79 for Library, £106.55 for Special Events, and £133.47 for Photocopying.
This leaves a total of £2194.31.
At the March meeting and during the past two months, we raised, £65 on the raffle, £6.30 for books, £32 for pens, £15 for refreshments, £451 in donations, £102 for sale of 024 Fibromyalgia, £5.50 for plugmates, £4 for CDs, £306 for DVDs, £5 for Notepads, £5 for Car Stickers, £200 from Medway Lions Club, and £100 from Cllrs. Trevor Clarke & Sylvia Griffin’s Ward Improvement Fund..
This gives a total of £1296.80 to be deposited in our bank account.
This gives us total of funds of £3491.11.
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
SALES OF THE CONFERENCE DVD
The sales of the DVD of the talks by Professor Choy (Recent Advances in the Treatment of Fibromyalgia) and Margaret Robson (Fibromyalgia - The Patient’s Perspective), at the Conference for Drs and Healthcare Professional in October, at the Ashford International Hotel, have gone much better than anticipated. The first 100 were sold within a couple of weeks, and another 50 were ordered. These are also selling well. We have had a lot of positive feedback on this. Should you wish to purchase a copy, please send your name and address, together with a cheque for £4 (includes £1 postage), to the address on the front of this newsletter. Cheques should be made payable to Fibromyalgia Support Group (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, and Notepads at £1 each
NEW CANTERBURY GROUP
In February and March, two meetings were run by us in Chartham, Canterbury with the intention of starting a support group in that area. At the first meeting we were surprised and pleased that Jemma offered to co-ordinate the future group – and this was even before the first meeting had started! Three other people offered to help Jemma on the Committee, so we are pleased to announce that the Group has now been formed.
The Canterbury Group is the seventh group that we have set up apart from the Medway one and it is good to see that all are going really well. This group will now mean that everyone in Kent with Fibromyalgia will have a support group to access.
NORTH KENT GROUP
Contact: Philomena (Phyl): 0844 887 2348
or e-mail:
MAIDSTONE GROUP MEETINGS
Contact: Heather Hammond: 0845 458 3762
or
SITTINGBOURNE & SHEPPEY SUPPORT GROUP MEETINGS
Contact Maria: 0845 458 3780
Email:
INTRODUCING A PROFOUND TECHNOLOGY THAT CHANGES LIVES OFTEN IN JUST A FEW MINUTES
Hi, my name is Steve Porter of PainAngels, andone of thefounder UKindependent business partners of Amega Global from Singapore.Over the last 20 years or so, I have been involved in Health & Wellness related products that really do give people positive benefits and value to those who use them. Less then 9 months ago I received a call from a business friend from Canadathat introduced me to this new technology, and the amazing and profoundresults that it was obtaining. The next few days was to change my thinking and my life in the world arena ofHealth & Wellness.
I proceed to talk and meet thecorporate leader of Amega Global,the chairman flying into UK from Singapore, wereits company headquarters are situated. After many hours of investigating, speaking with doctors, practitioners and other people already just starting touse this technology in Canada and the USA, it was plainly obvious to me, I needed to be involved and share this technologywith people here in the UK and Europe and to help the open up this part of the globe.
My first personal experience of the technology was when I receivedmy Amwand, our lead product and healing tool, on the Friday, and on thatSunday was invited through aTherapist friend to attend theFibromyalgia weekend on the south coast nearChichester. At this time I had limited knowledge of the full usage of the technology using the Amwand.
I was introduced to some of the people there that were in great pain, and started to administer the technologyto them, and I must say got some tremendous results. One in particular stands out, a lady in a wheel chair who has not been able un-assisted for 15 years to stand on here own two feet, let alone walk. That day she not only stood, but took 22 steps for the first time. That wasall I need to make it my mission to share this technology with as many as I can. Since this time I have administered the technology to over 80 people an have had 100% varying levels of success.I truly and sincerely hope you will seriously take an open minded approach and have this technology demjava-scripted to you and experience it to see if it can help you.
So what is the technology? It isZero Point Energy Field that has been harness through 25years of Quantum Physics Research by the company, and they have devloped a way to infuse it into many different products througha process call Amized Fusion Technology (AFT). The resonate of this energy field has the ability to bring the body and its cells back to source, balance and homeostasis.
To understand this fully I would suggest going to a websiteto review the information that explains. When your cells are back in balance and homeostasis' you arefree from disease and pain, and your 70 trillion cells can then produce new good cells in your body.
The AFT is infused into a range of different energies which can be reviewed on the web link given. Because we cannot see this energy with the naked eye, we do a number of different demonstrations with the technology and products that will prove that this energy is there. The Technology will increase your strength and flexibility, protect you against EMF, like phones, radiation, microwaves and smog pollutions that surrounds us all. The actual energy increasephysically can be amazing when you apply this technology.
Our range of product cover the whole spectrum of Health & Wellness, from healing and protection, Nutrition and Water, Air andEnvironment, Anti-Aging and Skin Protection, Sleep and Personal Care, with many more in the pipeline.
This is now creating a Paradigm shiftaround the planet within the global health & wellness sector, to the degree that in the USA and Canada in the last 12 months when it was first introduced, top professional people in Health and Wellness related occupations are now harnessing this technologyin there everyday practises.
We are now seeing similar things startinghappening now in UK and Europe who are now facilitating the use of the technology.
If you are interested in having a FREE INTRODUCTORY DEMONSTRATION of the technology, and see if it can work for you please contact us on 0800 316 1372, or e-mail and ask for Steve. I will also do group sessions for people if required.
Steve Porter PainAngels
Editor’s Note: This article does not constitute a recommendation by the Fibromyalgia Support Group (Medway). Any new treatments should be discussed with your Dr.
PATIENT ADVICE AND LIAISON SERVICE (PALS)
PALS is a friendly and professional NHS service offering support, advice and guidance about medical and health related issues for the population of Medway.
As a patient, relative or carer sometimes you may need to turn to someone for help, advice and support.PALS are here to help you find your way through the NHS.
What can I expect from PALS?
We will listen and take your concerns, suggestions and experiences seriously and ensure that people who design and manage services are aware of the issues you raise.
In identifying problems or gaps in services and reporting them, it helps to change and improve services in the future
We aim to resolve queries, concerns and issues quickly, at a local level and to find the right person who can help you and direct you to appropriate services.
All communication is confidential and will not be disclosed to another party without your permission.
How do I contact PALS?
PALS can be contacted Monday-Friday between 10am and 4pm. Our PALS Officeris Bobbie Walkem-Smith and her contact details are below:
PALS Officer
NHS Medway
Fifty Pembroke Court
Chatham Maritime
Chatham
Kent
ME4 4EL
Email:
Telephone: 0800 014 1641
(Please note this a freephone number. Should you receive the answering message, please leave your name and telephone number and we willcall you back).
Editor’s Note: Both Steve and Bobbie came to speak at our January meeting. Both were very interesting and informative.
A 10-YEAR, LONGITUDINAL ASSESSMENT OF DOPAMINE AGONISTS AND METHADONE IN THE TREATMENT OF RESTLESS LEGS SYNDROME – SOURCE: SLEEP MEDICINE, JAN 14, 2011
BY N SILVER, ET AL.
Background: Restless legs syndrome (RLS) is a chronic disease, which is managed with palliative medications that are likely to be required for a patient's lifetime. It is, therefore, important to know the long-term consequences of these treatments.
Currently, the most commonly prescribed treatment for RLS is one of the dopamine (DA) agonists. Most of what we understand about efficacy and side effects of the DA agonists are, however, derived from relatively short-term studies.
This is particularly a problem since these medications produce in some patients a significant increase or augmentation of RLS symptoms known to occur during the first 2 years of treatment and perhaps even later in treatment.
The primary aim of this study was to determine the long-term efficacy (10-year) for commonly used RLS medication types: dopaminergic agonists and opioids.
Methods: Records of all RLS patients treated in one tertiary care center with:
• Pramipexole [aka Mirapex and other brand names, a “non-ergoline-based” dopamine agonist also used for early Parkinson’s and experimentally for cluster headache, depression, and fibromyalgia],
• Pergolide [aka Permax and other brand names, an ergoline-based dopamine agonist also used in some countries to treat Parkinson’s and by veterinarians for some conditions in animals; withdrawn from the US market in 2007]
• Or methadone [aka Symoron and scores of other brand names, a synthetic opioid also used as an anti-addictive for patients on opioids, for pain, and as a cough suppressant]
…. during the years 1997-2007 were reviewed.
The duration and reason for any discontinuation of treatment and medication doses were recorded.
Results:
Annual rates for discontinuing treatment persisted for up to 10 years of treatment and were fairly constant after the first year at:
• 9% for pramipexole,
• 8% for pergolide,
• And 0% for methadone.
Similarly, annual augmentation [symptom worsening] rates were fairly constant after the first year and persisted for up to 10 years at:
• 7% for pramipexole,
• 5% for pergolide,
• And 0% for methadone.
The percentage continuing on the treatment medication for over 5 years was 58% for pramipexole and 35% for pergolide.
Conclusions:
The DA agonists appear to have a limited period of clinical utility for many patients.
Severe augmentation, while not common in any 1 year, can develop even after years on the medication.
Methadone, in contrast, shows neither augmentation nor major problems with continued efficacy after the first year of treatment.
[Note: Another type of drug – gabapentin, aka Neurontin - may improve RLS symptoms according to a recent 52-week trial, but long term results are not known. Gapapentin is an anticonvulsive GABA analog drug used to treat post-shingles nerve pain and depression.]
Source: Sleep Medicine, Jan 14, 2011. PMID: 21239226, by Silver N, Allen RP, Senerth J, Earley CJ. JohnsHopkinsUniversity, Dept. of Psychology and Brain Sciences, 3400 N Charles St., Baltimore, Maryland, USA.
YOGA CLASSES
Bridget Reader is now running Yoga classes for people with ME/CFS in the
Rochester area.
"In these classes we will be using gentle yoga movements combined with breath work in a way specifically adapted for people with ME. Although the classes are aimed initially at those with ME, people with other disorders
where chronic fatigue is a major part, such as Fibromyalgia, may alsobenefit. Mats will be provided, although you may wish to bring a blanket with you. Please wear comfortable clothing"
For details phone: 01634 843663 or email:
UPDATE OF WORK CAPABILITY ASSESSMENTS INFORMATION FEBRUARY 2011
The Government has been running a trial of Work Capability Assessments in both Burnley and Aberdeen. Burnley was chosen because of the 6,300 plus claimants of long term sick benefits in a population of 70,000. Aberdeen was chosen for similar reasons. There is also a high level of claimants in Aberdeen.
During the week starting 14th February it emerged that nearly three quarters of the 1,347 cases assessed in Burnley and the other trial site Aberdeen, were judged fit to work or ‘work related activity’. A much higher proportion than originally expected. The 399 judged fit for work immediately will be moved on to the lower job seeker’s allowance at once and be subject to the penalties announced by the coalition in November for those who failed to take up work. Another 526 judged ‘fit for work with support’ will lose their enhanced allowance within a year.
For those in the first group who have appealed there is at least a six month wait before they can get to a tribunal. In the meantime their allowances have been cut by a third.
In Burnley the Citizen’s Advice Bureau (CAB) has been assisting many of the claimants. Even before the trial started, Burnley’s CAB was inundated with new claimants for what was formerly known as Incapacity Benefit and had been required to take the assessments. But those deemed fit for work who secured advocacy through the CAB were, at appeal hearings, able to get four out of five of the decisions overturned.
As more and more people are being called in for assessment it seems the number of appeals will increase.
Meanwhile the Burnley CAB has suffered a drastic cut-back in funding and is having to move some of their clients to Blackburn. This means that the delays for appeals will continue to mount and the time delays before the appeal is heard will continue to get longer. Whilst the government is quick to point out that any tribunal decision is back paid to the date it was stopped, this does not help the people appealing in the interim period.
The change to the assessment system was intended to weed out benefits cheats but it seems that those targeted are mostly those who do have long-term conditions. Of course one of the problems with assessing people to be fit for work is that there are very limited job opportunities in the trial areas.
Once again ATOS origin, who as readers of this newsletter will be aware, have not always been helpful to claimants, are being even less helpful than their usual selves when examining people for the new criteria.It has been reported that the people carrying out the examinations, in some cases, are not Doctors but other medical professionals, including nurses, and this has led to a fall in the credibility of the reports. It appears that inaccuracies in the reports, and reports that relate to someone other than the claimant examined, are becoming more common place.