FM CONFERENCE AND PAMPERS 2011 ANOTHER BIG HIT

By Jeanne Hambleton ©

The Fibromyalgia Conference and Pamper Weekend in April on the south coast was another great success inspite of cancellations by the Americans. Described as a ‘coalition’ conference many Group Leaders played a major part in collecting stage payments at group meetings over several months, to enable delegates to come to conference. Without the support of those Leaders, many living on benefits would have been unable to come. Others found their local Rotary Club willing to help fund their visit to the conference. So many people pulled together to make it happen and during the ‘fond farewell’ it was clear that they all enjoyed themselves.

The conference brought together two major charities, FMA UK and FMS SAS (Surrey and Sussex) to work with FibCon independent conference Folly Pogs team, striving to raise funds for research to find a cure. The success of the event was due to those who supported us and a few dedicated people who desperately want to see a cure for fibromyalgia.

It was another ‘win win’ event for delegates with 14 speakers, 14 work-shops, with many presentations provided by fibromites with a story to tell. There were also exercise programmes and good evening entertainment. Delegates are still talking about the fibro fillies horse racing and racing pigs with knitted woollen jockeys, the Friday highlight. Saturday saw the Cockney Barrow Boys with a sing-along of London songs and a mini re-enactment of an air raid with siren, which brought memories flooding back to some. On Sunday the conference was entertained by a team of four mediums, with humour, bringing messages from loved ones and the return of a favourite comedian who entertained us in 2010 – Paul James.

COMPETITIONS
Some 19 delightful Fibro Ducks were entered for the Best Dressed FD competition with three winners – Debbie Wilson, Maggie Stewart, and Orla Desmond – all winning first place. I am guessing the surnames are right as no one gave their full name. Judges Pam Stewart, Nichola Bond and Simon Stuart found it hard to make a choice. The Fibro Pearly Queen, the first prizewinner, was Maggie Perry, fibromite, who runs a Bed and Breakfast business in Kenilworth in the Midlands. Running a close second were the Pearly Prince and Princess, Ahmed Benallegue and Orla Desmond from Reading, who had also spent hours stitching on Pearlie buttons, to the delight of Cockney Jim, the Pearly King of Camberwell and Bermondsey.

PROGRAMME
Due to the unexpected late cancellation of the American doctors it was difficult to find replacement keynote USA speakers. But UK Dr Kim Lawson, international researcher, from Sheffield University, was among the favourite speakers with two presentations. Dr Nick Avery (CAM) returned and was well received again. Following her success in 2010 Dr Nina Bailey returned and after her presentation spent the day talking to fibromites about their problems. Dr Mark Cropley from Surrey University, a sleep specialist, also visited conference to network, to meet delegates and hear the speakers.

Dr Ian Rubenstein, a GP, had some humourous stories to tell and brought light hearted entertainment to the speakers’ room with his medical and mediumship re collections. Other speakers included Dr Thierry Conrozier, a French consultant rheumatologist; Dr Ruolin Sun, a Chinese herbalist and acupuncturist; nutritionist Joanna Majithia from the Institute of Optimum Nutrition; Mary Jane Burgess, a clinical hypnotherapist from Mind over Matter; Sue-Ellen Nicholls and Nicky Stoddart, pain management consultants; Andy Pothecary, a Special Rheumatology Pharmacist at the Royal Cornwall Hospital, Truro; Rebecca Richmond, creator and author of Forget Fibromyalgia; Steve Porter and Heather Gale who spoke about titanium technology and the new healing Black Wand; and Ken Murishwar from Midhurst who told his audience being healthier is simple, with just juice and 5 a day.

In the workshops mainly presented by fibromite, Suzie Oulton told her proto-col story from wheelchair to back to normal and offered tasters of her ’green magic’ which looked suspicious but was quite tasty; Jane Russell the dental hygienist who was a big hit in 2010 was back with more information and dental goody bags; Caroline Hinkes spoke about the Tried and Tested group, HeartMath practitioner and training; Kristina Richardson offered inspired coaching for getting back to work. Kit Stapely gave a talk and laughter workshop, and describing how laughter helped her recover from cancer. Marie-Caroline Scheid-Pickford described her very cold experience at -135o Celsius with cryotherapy (Kriotherapy) at Champneys.

Stella Bernardi, FMS SAS Co-Chair had prepared her work for the power point presentation on Computers for Beginners. But due to a fall she landed in hospital two days before conference and did not make it to conference. Our best wishes for a speedy recovery Stella. Instead Ray Brunton from the Worthing FM SG, an IBM computer buff, stepped in and ran the workshop. A big thanks Ray. With another last minute cancellation due to illness Nichola Bond GL from Worthing FM SG stepped in with ‘How to Start a Group’. Delia Mead with her Family History workshop in the coffee shop was a great success and was busy all morning with her magazines and ‘how to’ brochures.

The exercise workshops were provided by Roz Macarthur who did dance and tone and Pilates, while Chris Milton taught Tai Chi and Qigong mediation and breathing. Anna Moorby, visiting from London introduced the new Healthy Steps – a mixture of dance and exercise introduced as the Lebden system. Sunday saw tables and stands with pamper therapists, mind body and soul readers, art, handicraft and products.

FMA UK and FM SAS both had information stands available throughout the weekend and helped each other and many of the delegates. There was lots of talking to like minded folk, joy, laughter and delight at meeting friends from last year and as well as quite a bit of problem solving. Chairman of the FMA UK Trustees Pam Stewart and SAS Trustee and Worthing GL Nichola Bond and were answering FM questions all weekend – a great opportunity not often available.

THE FUTURE
I am under ‘family orders’ to stand back and give up the conference, but I have heard whispers that the conference is expected to go on possibly in April 2012, so watch this space. As South Downs, the present venue, is already fully booked for 2012, the conference would have to find a new venue. I am told a few folk are hoping to keep the conference going and make this happen again in 2012. Somehow I think I may be disobeying orders, as I cannot believe I will be able to stand back and not share a tip or two.

THANKS
Our thanks to everyone who worked so hard to make the event such a success. Special thanks to Glenda and Martin and their two ‘apprentice film makers’ Sophie and Aruna Murishwar who were volunteered by Dad to do some filming. Only two speakers did not wish to be filmed. What we have we will share with you once the film is available. But please be patient as this may take some time due to health, namely fibromyalgia. Meanwhile work is going ahead on finalising the DVDs from the 2010 conference with Prof. Choy and other key speakers. We are all still reeling from the 2011 conference and pressure of work but as soon as these are available we will let you know.

A sincere and very big thanks to the following folk in no particular order – Heather Butterick, GL Nene Valley who was OC in the speakers’ room and did a grand job of keeping everyone running on time with the help of her dear husband, Roger; Simon Stuart our techno wizard who looked after the equipment in the speakers’ room for the two days of presentations and the race night; thanks to the Wittering Freemasons – Bill, Brian, Stuart, Peter, and wives Pam and Pauline for organising the race night and tote and to Glenda and Martin who helped out on the tote. A big thanks to Lorely who picked and deliver back to the Station, speakers who came by train; Leanne Daniel GL Horndean who took copious notes of the presentations along with Denise Rhodes. Thanks to Jenny Oaks, Pauline (co GL Chichester), Glenna and Arthur who all did long stints on the front desk dealing with enquiries. A big thanks also to those who worked behind the scenes writing letters, Helen and Suzie and my gratitude must go to my family and to my dear friend, Sarah who fished me out of deep water, got me back on dry line and working once again. Without this support we would not be recalling happy moments at the conference.

THE VENUE
Thanks also to all the staff at South Downs who did a grand job – kitchen dining room, entertainments and admin – I personally did not receive one complaint. My bed was comfortable, the food was good even though I was often late and the service was excellent -some said better than a 5 star hotel. From the response on Monday morning I think most of you enjoyed the weekend.

Thanks to everyone who came and supported the conference – without you there would have been no fun, laughter and help for each other. Thanks to those fibromites who gave presentations, did workshops, signed their books. To those who gave their time selflessly to make the event happen, my personal thanks. Also our gratitude to the entertainers, speakers, therapists and Tranquility, who all helped to make the weekend a big success.

FURTHER INFORMATION
The contact details of most folks who entertained were printed in the programme. If you need information and no longer have the programme a short email with FIBCON 2011 INFORMATION in the subject will bring whatever details I have, back to you. Email me at fibrowhat@me.com.

WHERE DID THE MONEY GO?
I wish I knew – the bills seemed to be higher this year – maybe it was petrol costs, rising prices or perhaps we just wanted more this time. Who knows, but our money did not buy as much as it did last year. Apart from Labrha, the French company manufacturing Fibromyalgine, who sponsored the conference bags, there was no other sponsorship. I made at least 12 grant applications all without success – I believe this may be because we are not yet a registered charity and the effects of the current cut backs in the voluntary sector. But we are working hard to get registered. Donations or fund raising for the Folly Pogs research fund are always very welcome.

As before we begged, borrowed and stole short term, to get the show on the road, supported by the Folly Pogs (FM Philanthropists Research Fund). We had a handsome donation from Cherry Cull of Horndean, also a very respectable donation from an anonymous local fibromite. The proceeds of the race night and the raffle will be added to the research fund. I am hoping all those folks and groups who raised money for the Americans’ non-visit will agree these funds should find their way to research to help find a cure. Thanks to Marie-Caroline for her help and support and the £313 sponsorship from her 100-mile walk she has now donated to research.

We will be talking to Dr Kim Lawson, one of our keynote speakers, about research and hope in the future to sponsor some research through him. We do need to raise some mega bucks before then. We already have around 8 would-be trustees willing to help when we become a registered charity – so we live in hopes. All donations gratefully received – we all want a cure – contact me at email address below- and thanks.

2012 CONFERENCE
I said in a weak moment I could not do it again – but guess what – the conference lives on. There will be another April conference and pamper weekend in West Sussex during Easter weekend – Friday to Monday supported by the Folly Pogs and FMS SAS. Details are yet to be arranged but we only have half the accommodation, so it will be first come first booked. To stake your claim write to jeannehambleton@me.com with FibCon 2012 in the subject please.

Meanwhile take care and look after yourselves. Fibro hugs Jeanne

UK Fibromyalgia Conference & Unique Pamper Weekend

From the FMS Global News Desk of Jeanne Hambleton

With just weeks to go to the final booking date, fibromites from all around the UK are rushing for places at a weekend filled with laughter, fun, relaxation and learning.

Believed to be the first Fibromyalgia Conference in the south east of England working under the FMA UK umbrella, influenced by a yoga teacher working with fibromites, Sarah Owen, the event is offering pampering as a unique part of the programme along with leading speakers in the field of fibromyalgia.

Between 20 and 30 pamper therapists are expected to give free tasters allowing fibromites to try complementary therapies they have not previously experienced prior to booking one to one therapies at reduced cost at conference.

While many visitors are coming for the pamper experience, lots of fibromites have admitted they want to meet like-minded people from other groups with the view to twinning with other UK groups. Living in a world that does not understand fibromyalgia, those suffering with FMS enjoy the company of others suffering with the same condition. The idea of twinning has prompted one small Tee group with just 12 members to be the first group to enlist in a twinning programme with a partner group.

Others are anxious to listen to the speakers, attend workshops and try new treatments in the exhibition for those with disability and needing pain relief. The event will include scooters, adjustable beds, tilt and rise chairs, walk in baths, walkers, wheelchairs, fancy walking sticks and much more.

Dr. Ernest Choy, a consultant rheumatologist from Kings College Hospital, London, who specialises in fibromyalgia, who will travel from the annual meeting of the British Society of Rheumatology to join the conference. The Doctor will talk about new advances in the understanding of fibromyalgia. Other speakers will discuss sleep, pain management, digestive problems, chronic fatigue syndrome, food and mood, nutrition, benefits, and the controversial lightning process used by Esther Rantzen’s daughter for her ME/CFS.

Social highlights of the weekend will be the Fibro Factor, a chance for fibromites to have their moment in the spotlight. Following a gala dinner there will be the Folly Pogs Ball with posh frocks and dickie bow ties or fancy dress options. On Sunday the audience will join a charity auction of donated gifts to raise funds for fibromyalgia research.

Among the visitors will be Pam Stewart, chairman of the board of trustees for FMA UK, who is also the Vice President of the European Network of Fibromyalgia Association. Pam is looking forward to meeting newly diagnosed fibromites, members and group leaders.

“We have every intention on over dosing on laughter, which is the best medicine and has no side effects,” said who is one of the main organisers.

For more information email jeannehambleton@mac.com.

Cheltenham woman in mission to raise awareness of fibromyalgia

From the FMS Global News Desk of Jeanne Hambleton (UK)
Courtesy thisisgloucestershire.co.uk/news/

Monday, May 04, 2009

ALICE Reeve says more needs to be done to help sufferers of fibromyalgia.

The 34-year-old was diagnosed with the condition, which causes wide- spread musculo-skeletal pain and fatigue, 10 years ago. The illness has become so acute she has been forced to seek private treatment to complement the pain management she gets on the NHS.

Alice, who lives in Evesham Road, Cheltenham, is now trying to raise awareness of the condition and get more treatments available for free.

She says she has to travel to a private hospital in London to get injections of vitamins, minerals, magnesium and pain relief, which cost £150.

Awareness of fibromyalgia and treatments for the condition are due to be debated in the House of Commons tomorrow, and Alice is planning to attend.

EDITOR’S NOTE:To view of the May 5 historic fibromyalgia debate log on to
http://www.fibromyalgia-associationuk.org/content/view/385/1/

To read it try: http://fmsglobalnews.wordpress.com/2009/05/09/mps-call-for-fibromyalgia-education-for-doctors-in-first-ever-fms-debate-in-uk-parliament/

She said: “I feel I should be able to have treatment close to home. Another part of fibromyalgia is that you are very, very tired all the time so the travelling does not help.”

Alice has not been able to work in recent years because of the condition, but previously taught English abroad and completed a degree and a masters. She wants to address the stigma attached to fibromyalgia and change people’s opinions.

“Because people cannot see the illness they cannot understand it. Many people have said to me ‘get a life and go and get a job’.

“There is a lot of stigma attached to it. People see it as yuppy flu,” she added.

Alice’s mum Patricia Reeve, who lives with her daughter, is concerned that other families of sufferers do not understand the condition.

She said: “People who suffer need more emotional support from their families. Some families try to bury their head in the sand over it.”

A spokesman for NHS Gloucestershire said: “We are sorry to hear of the patient’s illness.

“NHS Gloucestershire is always concerned with achieving the best possible health outcomes for its patients within the resources available.

“There are some treatment options available through the NHS to help ease the symptoms of fibromyalgia but some patients may prefer to use complementary options.

“It is important to stress that while we do not routinely fund complementary treatment for this condition at this time, we will always consider a request from a patient’s doctor if they believe there to be exceptional clinical circumstances.

“NHS Gloucestershire’s Review Panel takes into account information provided by the patient, GP and hospital consultant and any previous treatment and its outcome. It also takes into account guidance from NICE on any particular treatment, where relevant.”

COMMENTS (26)

I have suffered with Fibromyalgia for many years but was only given a positive diagnoses this February. I tis the most awful disease and the pain and sleeplessness, tiredness and all the other symptoms that come along with it are so debilitating. No-one seems to understand at all. I recently applied for DLA and was turned down becasue my GP report siad I wasnt disabled, which is so unfair as I cannot walk on some days and cannot work at all at the moment as I feel so ill all the time and am in so much pain. My consultant also said in his report that I can walk up to half a mile and I’d love to know where he got that idea from! He saw me once and has no idea of how I live my life day to day!

I feel like no-one wants to help and that my GP just doesnt want to understand this illness. It is time the Govt took notice of this horrible disease and did more to help sufferers. I have no income other than Employment and support allowance and I will soon not be entitled to even that as I live with my boyfriend and he is expected to pay all my bills when this money runs out which is so unfair. I cannot get any help with prescriptions and it just seems that I pay out endless amounts of money on medication and get very little relief.

If one of these Govt ministers had to live with this condition for just one day and suffer the excrutiating pain and tiredness they would soon be trying to sort out ways to help sufferers.

This link lists the 50 most common symptoms of Fibromyalgia http://fmsupport.org.uk/2008/04/50-signs-of-fibromyalgia it might just make people stop and think for a moment if they try to imagine living with all of these every day of your life!

The worst thing is that some days you think you are never going to make it to the end of a day and that you are truely going mad because of this stupid brain fog thing that makes everything so jumbled up in your head and prevents you from thinking properly, it is so frustrating!

I have tried to find a support group in my area but to no avail and travelling is out of the question as I am so tired all the time.

My GP has provided me with no information and anything I have managed to find out for myself via the internet he will not take heed of as he says that a lot of the information we find on the web can be misleading which is just a cop out!

This is the first article I have ever seen connected to any newspaper,so congratulations for bringing this to the publics attention finally. But why has it taken so long for the media to finally realise that there is something newsworthy in reporting the unfairness of how people with this disease are treated by the system.

Maybe if all the UK sufferers got together and presented ourselves at the House of Commons people might sit up and take notice!!
Tracy Hicks, Godmanchester, Cambs
commented on 18-May-2009 11:46

I was extremely intereted to read Alice’s views and congratulate her on her struggle to bring awareness for this condition. I am not a sufferer myself but know well someone who is and the devistating effect it has had on their quality of life. It is shocking that someone should have to travel from Cheltenham to London for basic treatment.which should certainly be provided by the National Health Service. Let’s hope that someone takes notice.
Stella, London
commented on 17-May-2009 22:34

TONY HOWES FEELS NHS A SOCIAILIST IDEA L IN 50S SHOULD SUPPORT ANY ILLNESS AS THEIR IS NO PRICE ON LIFE BUT MONEY IS BECOMING TO IMPORTANT .. IMAY BE LITTLE IDEALISTIC JOHN LENNON FAN BUT PLEASE LETS NOT PUT A PRICE ON LIFE ESPECIALLY IN ALICES CASE AS WE ALL LOVE HER
Tony Howes, London
commented on 16-May-2009 10:09

Unless someone famous get FMS , Media and others don’t care. We need to push , we deserve a cure and soild treatment, Fighting with insurace companys to get medications to make my life livable are only fair I am a human being and I suffer. Why won’t Oprah set up and do a show on FMS ?
Robin Smith, California
commented on 15-May-2009 06:35

It took me around 22 years to get a diagnosis, I saw Dr after Dr as a child and most said it was all in my head, one sent me to Physio with a covering letter saying to humor me.

It was 2007 when I had knee surgery again and I was left unable to bend or straighten the knee afterwards my Dr sent me to see a Pain Specialist thinking that I had Regional Pain Disorder.

When I got to the Clinic I was asked to fill out a questionnaire so I did and waited, while I was waiting to see the Dr he was sitting in his office reading my notes all of them, and reading my answers to the questionnaire, after 20 mins or so he called me in, he asked me key questions then told me that in no uncertain terms that I have Fibromyalgia, I did not know weather to kiss hug or cry, after so long of not 1 single person in the medical profession since I was 12 years old believed me or seemed to care to find out why my body hurt so much there was this one Dr who now I felt was my new best friend, finally to have something to say to people when they ask what have you done to yourself when I walk with crutches, and funny looks when people see me using a scooter when I am shopping and parking in disabled bays people thinking to themselves she doesn’t look like she deserves that bay. I had a response I could finally say what I had, I don’t want sympathy although some would be nice sometimes, I want understanding not odd looks and comments about parking and using the scooter.

FMAUK have helped me so much I go to group meetings and talk to fellow sufferers which is a great help especially as they are the only people who really understand what it is like to be us. I am lucky with my Husband and Children who do understand and my Family who have always stood by me and knew I was hurting and were as frustrated as me not knowing why.

TREAT THE PATIENT NOT THE INJURY OR REASON YOU WERE SENT.

That is why I finally got diagnosed, My pain Dr treated me not just my knee which was why I was sent to him, if all medical personal think this way we would all be so much better off.

FIBROMYALGIA needs to be more commonly known in the medical profession to stop someone else having to wait 22 years to get diagnosed.
Jaki, Wirral
commented on 14-May-2009 12:32

i have had f.m. for now going on 11 years,the struggle to find out what was wrong ith me took many years and seeing many drs…I now still live with the pain , the not sleeping all nite,and the parts of my body that does not always work right, to some points i just don’t go to far from home ,i miss out on family dues at times because i just don’t have the energy to attend.Some days i have feeling of not even wanting to talk to anyone ,I do have a very stronge support team of family and friends but still some days i feel like if i say again i dont feel well i feel like i am weak .It will always be a up hill battle.Even foods can cause problems for me so again i have to watch what i eat.And if i have to run across a dr that still in this day and age that says there is no such thing ,i think to myself then walk in my shoes for a day .Again in Canada it is a fight to get any kind of disablity for f.m.they tell you if you are not in a wheel chair you are not looked at but my question to that is who will hire someone that some days can barly get out of bed or that your feel sick or am so tired from not sleeping the nite before that there is no way you can hold down a job.Let alone some days of even getting dressed as again cloths can feel very tight on a person let alone the energy to get dressed.yes i know there is meds out there that work but again not for everyone,as some meds make a person even feel sicker. if i had one wish that would be that some day they will find a cure for everyone because again everyone comes by this f.m in more then one way ,any were from a car accident to something bad happened in thier life ,also to much stress again a big part of a very big no no for anyone with f.m. yet we live in a very stressfull world.It is not only very hard on the people that live with f.m. but also our loved ones watching us go throw this .So for anyone living with f.m. i wish you a pain free day .and i tell anyone i talk to read up on anything you can find about f.m.and if you have a dr that does know about f.m. talk to him about all your feeling and about any info you run across.and don’t give up on finding a dr that knows about f.m it is real it is not in your head .thank you for listening to what i have had to say and i hope i have been of some help.
louise chandler, canada
commented on 14-May-2009 04:21

I was diagnosed with fibromyalgia in 2005. I have progressively gotten worse since then. I suffer daily with this debilitating disease, and it is a full-time job just to manage the pain, and all the symptoms that goes with this illness. I hardly ever sleep…and I suffer terribly with concentration(fibro fog). Thank you Alice, for getting the word out. This is a real illness people suffer from, I know…because I am one of them. Fibromyalgia needs to be taken seriously, treated just like every other debilitating disease out there. May 12, 2009 was “National Fibromyagia Awareness Day”. I hope many were educated, and will continue to be educated on this invisible illness.
Janet, North America
commented on 13-May-2009 23:00

I was diagnosed with Fibromyalgia a year and a half ago. I have had symtoms for years. I can barely walk on somedays. The pain in my back and legs makes me cry everyday. My doc has faxed a note to Michigan Works that I can do everything and I have no restrictions. I’m clearly misunderstood. I don’t know why my doc would do this to me. Just because you can’t see it doesn’t mean that it’s not there. We need more docs to understand this diease. The pain is real and it never goes away! I’m so sad and very depressed.
Sandra Busch, Michigan
commented on 13-May-2009 13:45

I have fibromyalgia and have had it for a few years now but was just diagnosed a year and a half ago. My doc just faxed a note to Michigan Works that I have no restrictions and can do anything. The pain I feel everyday sometimes makes me not able to walk. I cry alot and am very depressed. I know that the pain is real. Why did my doc not understand? Why would he put me through this? I’m very sad and misunderstood.
Sandy Busch, Michigan
commented on 13-May-2009 13:40

It is always good when people are aware of illnesses such as this that are often misinterpreted. Sufferers should get more sympathy and therefore more help
angela edwards, Carmarthenshire
commented on 13-May-2009 10:56

It took me 3 years to get a diagnosis of FM and I had to ask fro a referral to a rheumatologist myself. If I hadn’t I’d still be none the wiser. I say a neurologist a few times but he couldn’t find anything wrong so threw me back out into an uncaring system instead of suggesting I see someone else. I was told not to ask to see him again as there wasn’t anything wrong.

A bit more education and understanding in the NHS would go a long way to helping people. We are made to believe it’s all in our heads or down to depression… well you’d be depressed if you were in pain 24/7!

Doctor’s packs with information for your GP can be obtained from FMA UK a registered charity trying to get the word out to as many people as possible.
Gill, S Wales
commented on 13-May-2009 00:46

I have had FMS for about 16 years but was only diagnosed 10 years ago. I had never heard of it, and neither had any one else I knew. 10 years later nothing seams to have changed much. I haven’t worked for 9 years and struggle to get through the day. i rely on my parents for many things and between sleeping / resting and attempting life’s esstentials i don’t have much time or energy for much else. I take amitrypline and fluxotine and would love to be well enough to work again and not rely on benefits. My doctor say that we don’t know what causes it so how can we treat it? More research please, and more publicity – i haven’t seen anything on TV today about Fibromyalgia Awareness Day.
Karen, Worcester
commented on 12-May-2009 19:26

I am 18 years old and have been diagnosed with Fibromyalgia for a while now. Having this illness means i have to use crutches on bad days, I can never go out with friends becauuse i’m too tired, my college work suffers too, and yet we are still not getting recognised as we should be. I’m all for what FibroAction is doing, i think everyone should be aware how debilitating this condition is.
Emma, Lincolnshire
commented on 12-May-2009 18:08

I emailed our local news programme, but didnt even get a mention or indeed a reply. My husband emailed the World Community Grid and the reply from them was “as its not a fatal illness they cannot research it” ok so we all know we wont die from it, but our whole life chages dramatically because of it. Its like being thrown on the scrapheap of life
Anne Walker, Glasgow
commented on 12-May-2009 17:36

At nearly 49, but young for my age, I have a long memory and remember the struggle that sufferers of MS and ME had to get the severity and extent of the conditions to be recognised by the powers that be as being genuine and not figments of the imagination. When reading about fibromyalgia. I read the same kind of stories of discrimination, misunderstanding and to some extent ignorance from the very bodies set up to care for sufferers namely the NHS and H. M. Gov as those writen in the 1970¿s about MS and later about ME. It seems that nothing realy changes, in that the NHS and H. M. Gov have to be dragged kicking and screaming into accepting newly identified and dibilitating conditions that are recognised in other countries. And, possibly the only way to make the NHS and H. M. Gov to see reason is to follow the example of past campains and raise the publics awareness of the condition and keep it there untill that little light in the minds of a ministers turns on and they start singing ¿I¿ve seen the light¿, but until then don¿t hold your breath but keep up the good work.
Keith Sharpe, Basildon
commented on 12-May-2009 15:00

I had heard of this illnes, but until i read your article, like many other people,i was unaware of the severity of this horrendous condition .
Thank you for opening my eyes to the amount of suffering and loss of normal life that these people have to endure.
Gillian Parkes, Moreton in Marsh, Glos.
commented on 12-May-2009 12:05

Fibro is a horrendous life changing illness. i am 22 i cannot work i recently married. no one seems to know what top offer in terms of pain relief. i have to use a stick to walk. what my future holds i have no idea but it doesnt look that bright at the moment. we need all the help we can get to raise awareness of this terrible life changing disease
laura, yorkshire
commented on 12-May-2009 08:43

Many thanks to this newspaper for highlighting this illness. This is an illness of the 21st Century, which most of the population do not know about. Perhaps we could have more tolerance and compassion.
Annie, Cheltenham
commented on 11-May-2009 21:48

I was dignosed in 2007 as having fibro, after about 6 years of lots and lots of tests that all came back normal. I felt like a hypochondriac and was treated like one at times, simply because this is an invisible illness and does not show up in routine tests. My last GP was an idiot who obviously was a non-believer and who refused to prescribed the only mild medication I was taking. I am in pain 24 hours a day, every day of the year, some days I can barely move. Yet the struggle thousands of us have to get any kind of DLA benefit and which is usually refused! This IS a REAL disability, if we had M.S. (no offence to MS sufferer’s) we would be able to access more benefits, more tretments and more understanding so much easier. Life is a struggle as it is, yet we are made to struggle by our own government and health system to access a diagnosis and suitable treatment, as well as the benefits.

I have also tried to raise the awareness for Fibro Day (12th May) by emailing local TV and radio, local newspapers, GMTV, but nobody has returned an email, which just goes to show how ignorant and unsympatheitc and plain disinterested a lot of this country really is. We need this to be recognised by ALL medical professions, ALL government and health departments, and as many people locally and nationally as possible.

Rant over, I’m now going back to bed before I have to pick my children up from school, as if I don’t, I will be ILL for some time and unable to even cook for them, Thank god I have a lovely partner who does understand!
Linda, Merseyside
commented on 11-May-2009 13:13

As the Operations Director of an International Medical Assistance Company, as well a Travel Insurer for people suffering from medical conditions I would just like to express my support for this campaign. All the more so given that my wife has recently been diagnosed with Fibromyalgia.

MIA Online already insures numerous Fibromy’ patients and we are aware of how debilitaing it can be.
Sir Jan Dalrymple, Rayleigh
commented on 11-May-2009 10:01

I was diagnosed with FM in 1992. I have very limited use of left side now and am constantly in pain. I actually use a wheelchair for distances and also have orthotic shoes and crutches. I do not allow this to be my life but can completely understand the frustration when people say ‘you’re just being lazy’ or ‘we all get tired’.
Go to the UK Forum for FM, it is a great release and a chance to chat to fellow sufferes who will never say those things.

It’s hard to have self belief when you want to detract from your physical disabilities and, of course, it alters your everyday routine but we should all support research into it, if only for the future sufferers.
I work part time which is a struggle but I won’t give it up. I am also a single parent of an 11 year old but he is a fantastic support for me, considering it changed his life as well.
Elaine, Tewkesbury
commented on 10-May-2009 15:23

I am 43 and have recently been diagnosed with fibro but have had symptoms for years. I am taking duloxetine and gabapentin for pain relief but find this still leaves me with plenty of pain.

Fatigue is the main problem. I’ve had to give up employment, Open University study, voluntary work and most of my social life. I now struggle to cook and cannot cope with the housework.

The future looks very bleak. There is no hope of returning to full time work but I do not want to spend the rest of my life living off benefits. The pay is lousey and there are no days off from pain and fatigue.
Hazel, Evesham
commented on 08-May-2009 07:45

I had post-viral fatigue after a bout of tonsilitis a year ago January. I have now been diagnosed with Fibromyalgia (Chronic Fatigue Syndrome) – my biggest concern is the fuzzy brain (or brain fog) – I have just been referred to the CFS clinic that operates out of Bristol at more local clinics and am awaiting an appointment – just some advice on managing the condition would be really helpful. The pain, especially in my feet and legs is really uncomfortable – I do work, and am taking part in the Sue Ryder Midnight Walk this coming Saturday – am determined this condition will not take over my life completely. My friends will stay with me until I do the walk. They are being very supportive. I feel for anyone who has the same condition, and look forward to seeing some progress in its more formal recognition.
Tracy, Cheltenham
commented on 06-May-2009 18:47

I was diagnosed in December last year with Fibro as my partner calls it, untill then i had never heard of it but have since made contact with another sufferer.As i am on strong painkillers for my back my Dr. has since put me on anatriptoline which i have found helps with it. But i can get it for three or four days a week then have two or three days without it . It seems a cycle that i have told myself to accept it,but as i’m on other meds and painkillers i find wheni got the pain i just found the best position on the sofa and sleep alot.I can wake up in the morning and feel fine then an hour or so later feel ILL.Before i was diagnosed with Fibro my Dr. sent me to the hospital to be tested for Rhumatoid Arthritis the hospital Dr dagnosed the fibro,as i sai put me on Anatriptoline and gave me a booklet about fibro and sent me home with another appointment to see him in 6mths time
bob, Hertfordshire
commented on 04-May-2009 14:25

I too have suffered from this condition for years. Being in constant pain 24 hours a day is exhausting and depressing. Sleep is in short supply as it is impossible to get comfy. If one more person tells me I “look well” I may well scream!! Do magnesium injections help? Many thanks to Alice for taking up the cause. I wish her everything I wish myself.
victoria, cheltenham
commented on 04-May-2009 13:17

The use of local anaesthetic injected intramuscularly as pain relief and the use of injected vitamins and minerals to counteract deficiencies in someone with reduced absorption capabilities is not a complementary therapy.

Using drugs to treat pain is the remit of traditional medicine. Treating vitamin and mineral deficiencies is also part of traditional medicine.
Lindsey Middlemiss, Berkshire
commented on 04-May-2009 12:39

(Copyright Harmsworth Newspaper Printing

http://www.thisisgloucestershire.co.uk/news/Cheltenham-woman-mission-raise-awareness-fibromyalgia/article-958681-detail/article.html?cacheBust=7vk40nSNjqBF&success=true#community)

My thanks to Sue SB for bringing this story to my attention. It is good to share. I wonder how many more fibromyalgia patients have been refused support by the GP when applying for benefits. It is a pity they cannot try having this invisible disability for a week to see how it really feels and that IT IS REAL!

FOR MORE FIBROMYALGIA STORIES SEE: http://jeannehambleton77.wordpress.com

FDA Requires Additional Labelling for Over-the-Counter Pain Relievers and Fever Reducers to Help Consumers Use Products Safely

From the FMS Global News Desk of Jeanne Hambleton (UK)

Courtesy FDA US Food and Drugs Administration – For Immediate Release

The Food and Drug Administration issued a final rule today that requires manufacturers of over-the-counter (OTC) pain relievers and fever reducers to revise their labelling to include warnings about potential safety risks, such as internal bleeding and liver damage, associated with the use of these popular drugs.

Products covered by the FDA action include acetaminophen, and a class of drugs known as the nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDs include aspirin, ibuprofen, naproxen, and ketoprofen. Acetaminophen is in a class by itself. The revised labeling applies to all OTC pain relievers and fever reducers, including those that contain one of these ingredients in combination with other ingredients, such as in cold medicines containing pain relievers or fever reducers.

“Acetaminophen and NSAIDs are commonly used drugs for both children and adults because they are effective in reducing fevers and relieving minor aches and pain, such as headaches and muscle aches, “ said Charles Ganley, M.D., director, FDA’s Office of Nonprescription Drugs in the Center for Drug Evaluation and Research.

“However, the risks associated with their use, need to be clearly identified on the label so that consumers taking these drugs are fully aware of the potential harm they can cause. It is important that they know how to take these medications safely to reduce their risk.”

Under the final rule, manufacturers must ensure that the active ingredients of these drugs are prominently displayed on the drug labels on both the packages and bottles. The labeling also must warn of the risks of stomach bleeding for NSAIDs and severe liver damage for acetaminophen.

Since 2006, some manufacturers have voluntarily revised their product labeling to identify these potential safety concerns. However, the voluntary changes to labelling do not address all of the labelling requirements in the new rule. For example, the new rule includes a warning on products containing acetaminophen that instructs consumers to ask a doctor before they are taking the blood thinning drug warfarin. The new rule requires all manufacturers to relabel their products within one year of April 28 2009.

Safety data reported in medical literature indicate that people sometimes take more acetaminophen than the labeling recommends. Others unknowingly take multiple products containing acetaminophen at the same time. Exceeding the recommended dosage of acetaminophen may increase the risks for severe liver damage. Alcohol use can also increase the risk of liver damage with acetaminophen.

The risk for stomach bleeding may increase in people who use NSAIDs and who are taking blood-thinning drugs (anticoagulants) or steroids. Stomach bleeding risks also increase for people who take multiple NSAIDs at the same time, or in people who take them longer than directed. Alcohol use can increase the risk for stomach bleeding with NSAIDs use.

An FDA Advisory Committee meeting will be convened on June 29 & 30, 2009, to discuss further steps the FDA could take to reduce the risk of liver damage associated with acetaminophen overdoses.

Source: FDA
OTC Pain Relievers – Acetaminophen: Tylenol & other Brands
NSAIDS – Aspirin: Bayer & other brands, Ibuprofen: Advil, Motrin & other brands. Naproxen: Aleve & other brands.

To read the final rule on the relabeling of OTC pain relievers and fever reducers, go to

http://edocket.access.gpo.gov/2009/pdf/E9-9684.pdf

To read the FR Notice announcing the FDA Advisory Committee meeting, see link below:

http://www.fda.gov/OHRMS/DOCKETS/98fr/E9-9380.pdf

Consumer Inquiries: 888-INFO-FDA

(http://www.fda.gov/bbs/topics/NEWS/2009/NEW02004.html)

International Fibromyalgia Awareness Day 12th May 2009

From FMS Global News Desk of Jeanne Hambleton (UK)

In the wake of the historic first ever debate about fibromyalgia in Parliament (Westminster Hall) last week on May 5, the Fibromyalgia Association UK, (FMA UK) praised for its work in helping sufferers, has issued a press release.

The Chairman of the Trustees of FMA UK Ms Pam Stewart said, “A year has passed and what has changed?”

EUROPEAN NETWORKS OF FIBROMYALGIA ASSOCIATIONS & NICE REJECTION

In Brussels, the Written Declaration on Fibromyalgia won a majority of votes. This asked all member states to recognise fibromyalgia and ensure diagnosis and treatment is available. It also stated that research funding should be awarded for fibromyalgia.

“It is likely to be some time before we see the results of this as it is a slow process,” said the Chairman.

“In the UK, the recommendation for guidelines for the treatment of fibromyalgia were not considered to be a priority by the National Institute of Clinical Excellence (NICE). This rejection by NICE which is independent from the government is a blow for UK fibromyalgia sufferers,” said Pam Stewart.

CHIEF MEDICAL OFFICER’S ANNUAL REPORT

The annual report from the Government’s Chief Medical Officer Sir Liam Donaldson, which included a whole section on pain and especially chronic pain, gave hope that at least this area of fibromyalgia might be given some attention but it is only part of the range of symptoms and cannot be treated in isolation.

FIBROMYALGIA DEBATE IN THE HOUSE

“We were delighted to have a debate with Ann Keen, Parliamentary Under Secretary of State in the Department of Health, so that questions about the future of fibromyalgia diagnosis and treatment could be assured. This debate was secured by Rob Wilson MP for Reading East and Chair of the All Party Parliamentary Group on Fibromyalgia (APPG).

“Sadly it seemed that complacency with the initiatives already in place means we still have a fight on our hands. Since the Musculoskeletal Service Framework was put in place in 2006, we have not heard that treatment options have improved and we still hear of people being told to go away and live with it.

“We have been told that in one hospital, a mention of fibromyalgia will bar the patient access to further treatment from pain specialists, physiotherapy or other recommended treatment options!

” When asked about training for medical professionals, which Sir Liam Donaldson had mentioned in his report, we were informed that we would have to take this up with the professional bodies involved in accrediting training even though deficiencies in knowledge have been acknowledged,” she said.

DO DOCTORS USE THIS NHS SITE?

However, the new website http://www.NHSevidence.uk was mentioned by the Under Secretary. When fibromyalgia is searched for, this has the European League Against Rheumatism (EULAR) guidelines that were sent to NICE as a beginning for official UK clinical guidance. This is encouraging if medical professionals use this service. This advocates a multidisciplinary approach for the treatment of fibromyalgia. There are some centres around the country that use this but those with fibromyalgia need all PCTs to have the ability to refer patients with fibromyalgia to a multi-disciplinary team of medical professionals for appropriate treatment.

“It is unacceptable that these specialist clinics are not available on the NHS Choose and Book system thereby denying easy access to sufferers. We hope this debate will have raised the profile of fibromyalgia but it has highlighted that there is still much more to do. People in constant pain should have the right to effective treatment. How can between 1.7 and 2.8 million people living with such a poor quality of life be treated so badly?

..end..

EDITOR’S NOTE: As someone with fibromyalgia I was very pleased to hear Rob Wilson MP had secured this debate. May I also publicly thank the handful of MPs who were in the Chamber to support this plea for support for the neglected people with fibromyalgia. I guess like many of the 2.7 million people diagnosed with fibromyalgia in the UK, I felt the response from the Minister, Department of Health, was a ‘white wash’. As a health professional herself I did believe she wanted to help but it appeared her ‘hands were tied’ by red tape and maybe civil servants’ constraints. She appeared unable to make a commitment sadly.. regardless of pressure from Norman Lamb MP. If there is a will, there must be a way.

Yes I accept there are many conditions causing chronic pain and quite a number who have been given funding for research to find a cure, but we fibromites – the Fibromyalgia Cinderellas, have no funding for research and apparently must endure our pain, a poor quality of life and the huge financial burden that fibromyalgia imposes, not to mention the hoops the Benefits people ask you to jump through.

What makes me mad is the time it takes (at least 2 years) to get a diagnosis and the enormous costs in those 24 months (at least). We spend hours seeing doctors, specialists, having blood tests, x-rays, scans, all in a process of elimination. If over two years we see three or four specialists, doctors and others and it costs, for example, say £5,000 for one person to get diagnosed (I am guessing), just multiply that by 2.7 million people. (Sorry no good at maths.) What a staggering cost that must be when much less could be spent on research in an attempt to save NHS money. Does the Department of Health care about this major drain on resources?

WRITE TO YOUR MP FOR HIS SUPPORT

Send your MP chapter and verse about your aches, pains, symptoms and quality of life or lack of it, the financial burden you face. Urge him to help you by supporting all these cross-party points raised at the debate. It is the MPs who are pulling the purse strings in the ‘corridors of power’.

Ask your MP to support these points and raise them again in Parliament – they are all valid and raised during the fibromyalgia debate on May 5. See the previous story for the full text of that debate.

* Providing better education for doctors enhancing their knowledge about fibromyalgia,

* The importance of fast diagnosis and the provision of treatment,

* For an improvement and wider access to pain management,

* Highlight the lack of focus on the illness in the Department of Health,

* For the Department for Work and Pensions to address the condition and take it more seriously,

* Consideration a nationwide awareness campaign to highlight fibromyalgia syndrome,

As Pam Stewart has said there is much work still to be done.and we have a fight on our hands. You can help from your own home by contacting your MP. Tell him to read the full debate on this website. Be sure to tell him where you live and that you are one of his constituents. He will want you to vote for him at the next election so hopefully he will help you.

How do you contact your MP? Log on to http://www.theyworkforyou.com/ add your post code and click send a message to you MP. Best type it out first and then cut and paste into the little box.

I am considering writing an e petition on the No.10 Downing Street website raising these points. Will you support that and sign it? If so watch this space!

What are you doing on Tuesday,May 12 – our day. Are you celebrating the International Fibromyalgia Awareness Day with some fund raising? Do you have the Fibro What? CD to raise your spirits. If you do nothing else get a copy to help raise funds for research – see http://www.domcollins.co.uk and look at MY SPACE top right hand side. Fibro What? is serious but the three backing tracks will make the family laugh. It is a hoot!

It would be good to hear you have written to your MP. Email me with news from MPs or about Fibro What? on jeannehambleton(@)mac.com. Take care and keep well. Jeanne

Still no treatment in Europe for the 14 million FMS patients trapped in pain!

From the FMS Global News Desk of Jeanne Hambleton (UK)

Press Release from ENFA – 29.04.2009

Brussels, (29.04.2009)

Last week was high on activities for the Fibromyalgia community, on one hand the European Network of Fibromyalgia Associations (ENFA) met with the European Health Commissioner Ms Androulla Vassiliou1. And on the other hand the European Medicines Agency (EMEA) gave another negative decision for a treatment for fibromyalgia in Europe2.

Ms. Pam Stewart, Vice-President of European Network of Fibromyalgia Associations (ENFA) and chairman of the trustees of Fibromyalgia Association UK, said one of the biggest challenges that the patients have been facing is the lack of officially recognised medical treatment options in the European Union.

By comparison there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest and Cypress (Pierre Fabre).

Last October, Cymbalta received a negative decision from the EMEA and last week was the turn of Lyrica said Ms Stewart. One dossier is still remaining to be evaluated by the EMEA: Savella. Each of these drugs has a limited success and judged alone leads to their failure to get approval.

However with a full range of treatment options, more people with fibromyalgia could have reduced levels of pain. This could enable them to embark on a management programme to significantly improve their quality of life said the Vice President.

“We are constantly hearing from people diagnosed with fibromyalgia that their doctor tells them there is no treatment because no approved guidelines or medications are available. Medical professionals that do not have time to research treatment options should have clearly signposted guidelines for effective treatment options. No one should be sentenced to a life of pain, she said.

“Patients across Europe are currently using these medicines off label. However, the European Medicines Agency told European Network of Fibromyalgia Associations that this is a common situation already faced in other disease areas such as cancer, and the situation with off label use cannot be taken into consideration in the assessment of medicines for which a marketing authorisation is sought.

“The difference with Fibromyalgia is that patients in the UK, for example, are unlikely to be prescribed any of these effective drugs because they have not been officially approved for Fibromyalgia. Patients are left with inadequate treatment options and although these drugs can be purchased over the Internet, this means their use is not monitored and people could be at the mercy of unscrupulous suppliers, which could put their lives at risk,” said Ms. Stewart.

Another example, coming from Germany, concerns the social status of patients since they are labeled as “depressive patient” for their life insurance or health insurance in order to have their drugs fully reimbursed by the National Health Insurance. In order to get any effective medicines, doctors should not diagnose fibromyalgia at all because the medicines are not indicated for fibromyalgia.

At the same time, an ENFA delegation was meeting with the European Health Commissioner Ms. Vassiliou. The meeting was only a natural step, concluding ENFA’s activities on the ‘European Institutions Fibromyalgia Awareness Campaign’ launched in 2008 on World Fibromyalgia Day.

Since the commencement of the campaign last May, with the support from 418 Members of the European Parliament, the Written Declaration on Fibromyalgia was adopted by the European Parliament in December 2008. The written declaration was necessary to raise awareness to all the European politicians from the 27 member states. It also helps create a mapping of the disease status disparity across Europe and increase awareness of better diagnosis and treatment.

“However, we realised that without any officially approved treatment options available, it was almost impossible to properly raise awareness of Fibromyalgia. The patient petition with over 27,000 signatures from all over Europe that MEP Adamou voluntarily hand delivered to the Health Commissioner, clearly demonstrates the frustration from the fibromyalgia community and strong and urgent needs to have treatment options to be officially available. The Fibromyalgia community is left with one hope to see maybe Savella drug approved before the summer. But unfortunately, the hope for a multiple choice of treatment in Europe seems to be lost.

“The European Network of Fibromyalgia Associations and all its associations have for years raised awareness on Fibromyalgia among national and European politicians, health professionals and the general public, and will keep on being active as long as it is necessary,” the Vice President.

About ENFA

ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see Fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

About Fibromyalgia

Fibromyalgia is a complex disease with chronic widespread pain as the defining symptom and various additional symptoms including fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Fibromyalgia imposes a large economic burden on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments.

In fact, a Dutch study in 2005 estimated that the average annual cost of fibromyalgia was €980 million in the Netherlands. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

For more information on the European Network of Fibromyalgia Associations (ENFA) contact Ms. Pam Stewart Vice-President of ENFA Brussels@enfa-europe.eu; http://www.enfa-europe.eu.
1 On Wednesday 22 April in Strasbourg, for more information visit http://www.enfa-europe.eu; 2 On Thursday 23 April in London, for more information visit http://www.emea.europa.eu

Minister calls for pain indicators in QOF (Quality

From the FMS Global News Desk of Jeanne Hambleton (UK)

Courtesy of PulseToday.com

By Nigel Praities -21 Apr 09

A Government minister has invited applications for new pain management indicators for the QOF in a parliamentary debate held yesterday.

Health minster Ann Keen said the inclusion of pain in the QOF was a ‘key issue’ and that she hoped organisations would submit proposed indicators for the next review.

The debate was proposed by Anne Begg MP, the chair of the recently formed All-Party Parliamentary Group on Chronic Pain, who said pain should be considered as a ‘vital sign’ for PCTs and incentivised through the QOF.

‘The inclusion of pain assessment in the QOF would strongly encourage health professionals to be proactive and to ask a patient about their pain, treat it promptly and reassess it to ensure that the treatment given is effective, rather than expecting the patient to raise it first,’ she said.

Ms Begg also criticised the complete withdrawal of co-proxamol by the MHRA, and quoted figures revealed in Pulse earlier this year that showed an increase in morphine and tramadol prescriptions as a result of the withdrawal.

In response, Ann Keen said Ms Begg had made a ‘persuasive and eloquent case’ for pain indicators in the QOF and she hoped pressure groups, such as the Chronic Pain Policy Coalition – would press for its inclusion.

‘I understand that the next opportunity to submit suggestions for new indicators to NICE will be this summer. I hope that the chronic pain policy coalition will take the opportunity to suggest specific indicators at that stage,’ she said.

A spokesperson from the Chronic Pain Policy Coalition confirmed it would submit a proposal for new QOF indicators for the routine management and assessment of pain to NICE later this year.

‘Given the important role GPs have to play in the early identification, diagnosis and management of patients with pain, we strongly believe that this is an area in which greater incentivisation through inclusion within the QOF indicators would have a considerable positive impact,’ he said.

(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122478&c=2&cid=pain042209#)

IN THE HOUSE OF COMMONS 20 April 09 (Hansard source/TheyWorkForYou.com)

In the House of Commons on April 20 MP Anne Begg spoke about the Pain Management Services (England) as reported by Hansard and TheyWorkForYou.com

She said, “In the United Kingdom, 7.8 million people live with pain, day in and day out; that is the equivalent of about one in seven people in every single parliamentary constituency. I have asked for this debate in order to draw attention both to their problems and, more importantly, to some solutions that would not only improve the quality of life of so many of our constituents, but also reduce public expenditure on health, social care and incapacity benefits.

“If anyone is wondering why I, as a Scottish MP, am raising the issue of pain management services in England when health is a devolved issue, it is because I am the chairman of the recently set up all-party group on chronic pain. I suppose I should also declare an interest: I am one of the 7.8 million people in the UK who live with chronic pain.

“There could not be a better opportunity to consider the problem and suggest solutions. People in pain and the health professionals helping them have been pushing at a closed door for many years now. They have argued for early recognition of the needs of people in pain, early access to expert advice and treatment, and referral to a specialist pain clinic when necessary. That door was closed until recently; suddenly, it looks as though it is opening, and I am grateful to the chief medical officer for beginning that process.

MAJOR INITIATIVE

“His latest annual report, only just published, includes a chapter called “Pain: breaking through the barrier”. Sir Liam Donaldson looks at the issue of people living with pain in a sensitive and comprehensive way, and concludes with this statement:’A major initiative to widen access to high-quality pain services would improve the lives of millions of people.’ “

Ms Begg also said, “The evidence suggests that although pain services do exist in most secondary care NHS trusts, they are patchy, and variable in their resources and in the services that they provide. Crucially, the CMO’s report makes this point: each year, more than 5 million people in the United Kingdom develop chronic pain, but only two thirds will recover. Clearly, much more needs to be done to improve outcomes for patients. He reminds us that pain affects 7.8 million people, and that more than a third of households have someone in pain at any given time. Those figures are rising. Indeed, recent surveys suggest that chronic pain is more common now than it was 40 years ago.
Pain is becoming more common, but the effect that it has on individual lives is immense.

“The CMO highlights the fact that pain has a major impact on people’s lives, causing sleeplessness and depression, and interfering with normal physical and social functioning. That often leads to unemployment. He points out how it affects all age groups. Perhaps most worryingly, he states that 8 per cent. of children experience severe pain, that back pain alone costs the economy £12.3 billion per year and that early intervention may prevent pain from becoming persistent. In fact, it has been shown that the cost of chronic pain is greater than that of heart disease or diabetes.

“Looking at the limited number of specialist pain clinics, the CMO points out that systems and infrastructure do not meet need or demand, and that better co-ordination of services, and services designed around patients’ needs, are essential. Pain needs to be considered in its own right, because it is often the pain that dominates the patient’s life, not the illness or condition that causes the pain.

As one patient has said: ‘At first I presumed the pain would eventually go away and I would get better. I didn’t expect to develop chronic pain, or that it would stop me working and lead me to consider suicide. I just want my life back.’

Another said: ‘I am in constant and debilitating pain, often unable to do even the most simple activity such as making myself a cup of tea. I have daily bad headaches, and have no quality of life. It is making me very depressed and life is hell.’

Clearly, we have a duty to ensure that the individual has access to the right treatment as early as possible. That treatment has to come from a properly trained professional, and a multidisciplinary team if needed.

“I was surprised by the amount of interest that this debate has generated. I have been contacted by a number of organisations wishing me to raise their concerns. Age Concern and Help the Aged have particular issues relating to the elderly.

AGEING PROCESS

“They say that pain is not a normal part of the ageing process, and we should not accept it as such. We should challenge discrimination and ageist attitudes with regard to pain in older people. They say that constant pain can lead to a loss of dignity. Some 90 per cent. of calls to Arthritis Care’s helpline concern pain, most of them from people in severe pain. In the UK, pain crises account for 60 to 80 per cent. of emergency presentations in hospital admissions for sickle cell disorder.

CO-PROXAMOL WITHDRAWAL AND NAMED PATIENTS

“This is not the first time I have had an Adjournment debate on the issue of pain. Ever since the Government first indicated that they intended to withdraw the analgesic co-proxamol, I have been trying to persuade Ministers that it should not be completely withdrawn as a small group of people still has not been able to find an alternative and certainly not anything so effective. These are all people who suffer chronic pain, who are saying that only co-proxamol works not because they want to be awkward but because it allows them to carry on with their life.

“One person in that position has said: ‘With co-proxamol I had pain but it was bearable, now I can walk only a few steps before being forced to rest; before I managed to tend my flower garden, now I can only sit and feel depressed with pain and frustration’.

“I have several constituents who depended on co-proxamol but cannot now get access to it. While the Government say that co-proxamol is available on a named patient basis, that is of cold comfort to those whose GPs are refusing to prescribe the drug at all. GPs are not comfortable prescribing off licence as they do not always feel that they have the specialist knowledge. But consultants at pain clinics do.

“The main reason the Government gave for withdrawing co-proxamol was the suicide statistics. As it is now extremely difficult for even those who need the drug to access it, the incidence of suicide attributed to co-proxamol is now tiny. However, the use of stronger pain relief and particularly opiates has grown. A recent Pulse article says that there has been a 44 per cent. rise in prescriptions for morphine and a 61 per cent. rise in tramadol prescriptions. That cannot be good pain management, so I ask the Minister to look at this issue again.

“I have not, however, sought this debate to lay blame at the Government’s door on this matter: rather, I hope to encourage the Minister to consider the recommendations laid out in the chief medical officer’s report and to give due regard to their feasibility. I do not have time to discuss them all, but I do want to take this opportunity to bring some to the Minister’s attention.

PAIN TRAINING SHOULD BE EXTENDED

“First, training on chronic pain should be included in the curriculum for all health professionals who deal with patients. However, it is vital that this core training is extended to all health professionals, and in particular to GPs who, at the very least, should have pain training as part of their standard undergraduate education.

“Secondly, consideration should be given to the inclusion of the assessment of pain and its associated disability in the quality and outcomes framework—QOF—in primary care. That is an extremely important point, because the inclusion of pain assessment in the QOF would strongly encourage health professionals to be proactive and to ask a patient about their pain, treat it promptly and reassess it to ensure that the treatment given is effective, rather than expecting the patient to raise it first.

“A recent report on osteoarthritis found that 50 per cent. of people said that they would need to be in frequently unbearable pain before considering seeing their GP—clearly this is a significant barrier.

FIFTH VITAL SIGN – PAIN SCORE

“Another recommendation was that a pain score should become part of the vital signs monitored routinely in hospital. Indeed, the Chronic Pain Policy Coalition has been campaigning for some time now for pain to be adopted as the fifth vital sign. If implemented, this recommendation would ensure that health professionals become proactive in asking their patients about pain. People would recover faster and reduce the burden of care on others.

MODEL PAIN SERVICE OF PATHWAYS OF CARE

“The final recommendation I want to highlight relates to the development by experts of a model pain service of pathways of care with clear standards. The work could build on the excellent 18-week cross specialty chronic pain pathway developed by patients and clinicians that has been supported by the Department of Health.

“It is an important step forward and should be extended to ensure that all patients are offered comprehensive treatment options. That would improve rapid access and reduce the current variability in treatment that patients receive. Patients need to be confident that they can be offered effective options wherever they live.

“Commitments have already been made both in Scotland with the ‘Getting to GRIPS with Chronic Pain’ report and in Wales under the ‘Designed for Life’ programme to assess and improve the services available for patients with chronic pain. I hope I have shown the Minister that there are patients, third sector organisations such as Arthritis Care and health professionals in England anxious to get hold of these recommendations and take them forward. They will need encouragement and flexibility in the way in which integrated services are funded and in how outcomes are measured.

PAIN CHAMPION DEMANDED

“Above all, people in pain need a champion. Tsars such as Mike Richards for cancer and Roger Boyle for cardiology have shown how such champions can make a difference. Pain affects cancer patients and heart patients as well as millions of others with back pain, arthritis, pelvic pain and a multiplicity of conditions. Surely the numbers involved and the importance of early intervention demand a pain champion.

“I know that the concerns I have raised in this debate are shared by a number of my hon. Friends and indeed by many of their constituents. I thank the Minister for hearing me out, and I hope that she can give consideration to the points I have raised.

REPLY

Replying Ann Keen (Parliamentary Under-Secretary (Health Services), Department of Health; (Hansard source) congratulated Miss Begg on securing this Adjournment debate on a “most important topic, which Professor Sir Liam Donaldson chose to highlight recently in the 150th report of the chief medical officer.”

She said, “The report of the chief medical officer is an independent report to Government on aspects of the nation’s health and, as such, draws attention to a number of different major health challenges. In his annual report for 2008, the chief medical officer called for a major initiative to widen access to high-quality pain services to improve the lives of millions.

NATIONAL PAIN DATABASE

“I am delighted to inform my hon. Friend and the House that I received a letter from Professor Black, the chair of the advisory group, just before the Easter recess, and it recommended that the national pain database, run jointly by the Royal College of Anaesthetists and the British Pain Society, should be funded as part of the national clinical audit programme.”

EDITOR’S NOTE: On behalf of the fibromyalgia community living with chronic pain, numbering around two million, mainly women, me included, and those of us who survived thanks to co-proxamol, I would like to thank Anne Begg MP publicly for speaking out on our behalf.

Had I known Miss Begg was to initiate this debate I would, of course, have asked her to include fibromyalgia in her chronic pain list. Hopefully she will read this somewhere, sometime, and might think kindly of us when next raising chronic pain and co-proxamol.

For many of us co-proxamol, when it was £2.79 for 100 tablets, was an inexpensive painkiller. Had we known this it would have been cheaper than the prescription charge if we had been able to buy it. This was before the Government got involved. It was a life saver for those with fibromyalgia, and many others. In those days we had some relief…now it is pain 24/7 thanks those who meddled against the wishes of many doctors, consultants, a number of MPs and the patients. They did not give a jot about us at the ‘coal face’ living with pain for the rest of the life. Yes I have tried the alternatives and they disagreed with me and my IBS and gastric problems. They should have tightened the rules allowing those who really need it to be able to get it, prescribed without litigation problems.

Today albeit your GP knows you are in pain and you should be a named patient, after years of safely taking co-proxamol without a hint of any problems, he will not prescribe it due to the risk of litigation involved with prescribing an unlicensed drug. Mr. B. sitting comfy in his armchair (free of pain) with all found, at No.10, your Government has a lot to answer for…….. the loss of co-proxamol is most certainly one of them.

Letters to Anne Begg at begga@parliament.uk would I am sure be much appreciated by her especially if you make reference to her debate in the House of Common on 20 April 200 and give her more ammunition about your problems with co-proxamol and fibromyalgia. Maybe you will send a copy to me please -fmsglobalnews@me.com. Thanks.

For the background to the Co-proxamol debate and MP Anne Begg.
SEE: http://fmsglobalnews.wordpress.com/2009/03/13/co-proxamol-a-controlled-drug/

http://fmsglobalnews.wordpress.com/2009/03/24/prescriptions-for-opioids-jump-following-co-proxamol-ban/

http://jeannehambleton77.wordpress.com/2008/01/03/no-u-turn-on-co-proxamol-withdrawal/

http://jeannehambleton77.wordpress.com/2007/12/05/co-proxamol-bungled-withdrawal-is-a-farce/

http://jeannehambleton77.wordpress.com/2007/11/26/co-proxamol-withdrawal-debate/

SEE: http://jeannehambleton77.wordpress.com for more health stories

Occupational Therapists Help People with Arthritis Regain Their Zest for Life

From the FMS Global & UK News Desk of Jeanne Hambleton

Courtesy of American College of Rheumatology (ACR) and Newswise.com

Newswise

For the 46 million Americans living with arthritis, day-to-day activities can become nearly impossible within the blink of an eye. When patients face these difficult challenges, they often turn to rheumatology occupational therapists as a part of their treatment team.

Arthritis is not just an “older person’s disease.” Many people, including an estimated 300,000 children, suffer from its debilitating effects, and when the pain of arthritis starts to interfere with work, school, caring for your children and enjoying life, patients should consider medical intervention.

A major part of the treatment of arthritis is putting together a strong team of rheumatology experts to treat the disease. This team of experts is typically headed up by a rheumatologist, who is an internist or pediatrician qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. The treatment team is also supported by rheumatology health professionals, including the OTs who assist patients in developing and/or regaining the skills important for independent functioning, health and well-being.

Scott Zashin, MD, a practicing rheumatologist in Dallas, Texas, refers patients to OTs for several reasons. “Patients who are concerned about loss of function, are looking for instruction on exercises or ways to decrease stress on their joints, or who simply want common sense tips on joint protection can all benefit from working with a rheumatology OT,” he explains.

Once working with a patient (often referred to as a client), rheumatology OTs develop an individualized treatment plan to achieve prioritized goals. They educate clients and their families to adapt environments, modify tasks, and use equipment to promote independent function and to help gain or maintain full participation in self-care, daily home tasks, work or school, and leisure or play.

“For people with inflammatory types of arthritis, fatigue is often identified as having a huge impact on participating in employment, parenting, and family life,” says Catherine Backman, PhD, OT(C), an associate professor of occupational therapy at the University of British Columbia.

“Occupational therapists collaborate with their clients to develop practical strategies and to set priorities, accommodate limitations and enjoy the activities they value most.”

April is National Occupational Therapy Month, and the ARHP understands the important role these health professionals play in the treatment of rheumatology patients.

“The occupational therapist is an integral partner in the interdisciplinary health care team that treats patients with rheumatic diseases as they provide essential tools and information that enable patients to manage chronic disease in their daily lives,” explains ARHP President, Pamela Degotardi, PhD.

“The Association of Rheumatology Health Professionals is proud of its occupational therapist membership and supports National Occupational Therapy Month.”

If you are being treated for arthritis or another rheumatic disease, speak with your rheumatologist about the positive role occupational therapy can play in your overall treatment plan. For more information about occupational therapy as a career, visit http://www.rheumatology.org/arhp.

The Association of Rheumatology Health Professionals, a division of the American College of Rheumatology, is a professional membership society composed of non-physician health care professionals specializing in rheumatology, such as advanced practice nurses, nurses, occupational therapists, physical therapists, psychologists, social workers, epidemiologists, physician assistants, educators, clinicians, and researchers.

© 2009 Newswise. All Rights Reserved.
(http://www.newswise.com/articles/view/550691/?sc=dwhn)

Defend Yourself with a Good Night’s Sleep

From the FMS News Desk of Jeanne Hambleton

Courtesy FibromyalgiaNetwork.com

Persistent pain and disturbed sleep create a tremendous stress on the body that could potentially drag down a person’s immune system. Given that people with fibromyalgia battle sleep disruption, pain and a number of other stressful symptoms, you may be wondering what impact this is having on your immune system. In fact, this was a question asked by Ines Kaufmann, M.D., and co-workers in Munich, Germany.1

Comparing 22 fibromyalgia patients with 22 age- and gender-matched healthy control subjects, Kaufmann found a significant reduction in two immune system markers. The markers in question, CD62L and CD11b/CD18, are called adhesion molecules because they stick to the surface of the white blood cells that circulate as part of the immune system.

These adhesion molecules work as communication “flags” in the immune system to get white blood cells to travel to places in the body where they need them, such as tissue injury sites. They also are involved in recognizing and destroying infectious organisms, as well as removing toxic substances and debris from the body.

A reduced number of adhesion molecules on the surface of your white blood cells would likely lead to a compromised immune system, one that lags in its ability to get rid of infections and clear up inflammation in the tissues. As a consequence, you may have a more difficult time getting over colds or flu-bugs that commonly occur during the winter months. So if you find yourself trapped with a head-cold, flu, or other infection that lingers on and on, try increasing your sleep time to help power up your immune system.

Besides lowering your ability to fend off infections, a decline in adhesion molecules on your white blood cells may also compound your painful symptoms. These molecules also play a role in triggering your white blood cells to release powerful opioid-like pain relievers in the muscles and other tissues where local injury may easily occur.

While the reduction in adhesion molecules may explain why you have trouble getting rid of infections and why the slightest injury produces more pain than it should for you, these defects in immune function cannot use these immunological findings to identify people specifically with fibromyalgia.

Kaufmann’s team has reported similar findings in people with complex regional pain syndrome.2 This means that additional studies are needed to determine the relationship between the immune system changes and the development and persistence of painful conditions. For now, your best defense is a good night’s sleep, and anything else you can do to minimize the stress of your chronic illness.

(http://www.fmnetnews.com/basics-news.php#goodsleep)

Sleep Deprivation Linked to Prediabetes
Study Shows Increased Risk for People Who Get Less Than 6 Hours of Sleep a Night

Courtesy of WebMD.com

By Caroline Wilbert – WebMD Health News

March 12, 2009 – Here is one more reason to get a good night’s sleep.

People who sleep less than six hours per night are more likely to develop impaired fasting glucose, or prediabetes, a study shows.

The research was presented this week at the American Heart Association’s Annual Conference on Cardiovascular Disease Epidemiology and Prevention.

The study examined the health records of nearly 1,500 participants in the Western New York Health Study. Researchers identified 91 participants who had fasting blood glucose levels of less than 100 milligrams per deciliter (mg/dL) during baseline exams between 1996 and 2001; the participants had higher blood fasting glucose levels — between 100 mg/dL and 125 mg/dL — at follow-up exams in 2003-2004.

Those 91 participants were compared with 273 people who had blood glucose levels of less than 100 mg/dL both at baseline and follow-up. Researchers matched the groups according to gender, race/ethnicity, and year of study enrollment.

A normal fasting blood glucose level is less than 100 mg/dL. A fasting blood glucose result of 100mg/dL to 125 mg/dL is considered impaired fasting glucose. Having impaired fasting glucose is commonly referred to as prediabetes because many people with prediabetes go on to develop type 2 diabetes.

Participants reported how much they slept during the work week. Participants fell into three categories: short sleepers (less than six hours), mid-sleepers (six to eight hours), and long sleepers (more than eight hours).

During the six-year study period, participants who slept on average less than six hours a night during the work week were 4.56 times more likely than those getting six to eight hours of sleep to convert from normal blood sugar levels to impaired fasting glucose, researchers said. These findings took into account other factors such as age, obesity, and family history of diabetes.

No association was found in people who slept more than eight hours compared to those who slept six to eight hours.

“This study supports growing evidence of the association of inadequate sleep with adverse health issues,” study researcher Lisa Rafalson, PhD, a National Research Service Award fellow and research assistant professor at the University at Buffalo in New York, says in a news release.

(http://diabetes.webmd.com/news/20090312/sleep-deprivation-linked-to-prediabetes)

Nuclear Medicine: New World of Diagnosing and Treating Illness

From the FMS Global News Desk of Jeanne Hambleton

Courtesy of the Society of Nuclear Medicine – Advancing Molecular Imaging and Therapy
(https://interactive.snm.org/)

IMAGES THE BODY’S BIOLOGICAL PROCESSES

Nuclear medicine is a medical specialty that uses very small amounts of radioactive materials (radiopharmaceuticals) to diagnose, guide management and treat disease. Most nuclear medicine procedures are molecular imaging procedures that use radioactive substances. Molecular imaging procedures are highly effective, safe and painless diagnostic imaging and treatment tools that present physicians with a detailed view of what is going on inside an individual’s body at the cellular level.

Molecular imaging/nuclear medicine specialists can safely, effectively and painlessly determine if certain organs, such as the heart, brain, kidneys, liver, thyroid and lungs, are working properly. A molecular imaging/nuclear medicine procedure commonly used in diagnosing and guiding treatment of cancer patients is PET/CT scanning (see also “PET/CT Scanning: Get the Facts” – see below).

When very small amounts of radioactive materials are introduced into the body by injection, swallowing or inhalation, specific body organs can be targeted. These trace radiopharmaceuticals are detected by special cameras that work with computers to provide pictures of an area of the body, offering information about an organ’s physiology or function. The presence of disease is determined based on biological or molecular changes, rather than changes in anatomy. Radiopharmaceuticals go directly to the organ being targeted and are also used as treatment for hyperthyroidism, certain types of cancer such as thyroid and lymphoma, blood imbalances and pain relief for certain types of bone cancer.

Improves Patient Care

Today, molecular imaging and nuclear medicine offer procedures that are essential in many medical specialties, from pediatrics to cardiology to neurology to oncology. Molecular imaging and nuclear medicine procedures are an invaluable way to gather medical information that would otherwise be unavailable, require surgery or necessitate more expensive diagnostic tests.

These commonly performed biological imaging procedures are an integral part of patient care, identifying abnormalities very early in the progression of a disease-often before medical problems are apparent with other diagnostic tests. Early detection allows a disease to be treated when there may be a more successful prognosis.

Helps in Diagnosis and Treatment

In 2007, an estimated 16 million patients received nuclear medicine procedures in over 7,300 hospital and non-hospital sites in the United States, or approximately 68,000 patients daily (http://www.imvinfo.com). Nearly all hospitals-in addition to many clinics and private doctors’ offices-perform nuclear medicine tests and scans. Safe, effective, painless and commonly performed procedures include positron emission tomography (PET) scans to diagnose and monitor treatment in cancer, cardiac stress tests to analyze heart function, bone scans for orthopedic injuries and lung scans for blood clots.

More than 100 different nuclear medicine imaging procedures are available, and every major organ system can be imaged. Nuclear medicine procedures are used in the diagnosis and evaluation of treatment of:

Neurological diseases
Alzheimer’s disease and dementias
Seizure disorders
Coronary artery disease
Many types of cancer
Endocrine diseases
Thyroid
Parathyroid
Adrenal
Gastrointestinal diseases
Stomach
Liver and gallbladder
Genitourinary diseases
Kidneys
Bladder
Testicles
Pulmonary diseases
Bone diseases
Trauma
Infections

SNM and Nuclear Medicine

SNM is an international scientific and medical organization dedicated to raising public awareness about what molecular imaging is and how it can help provide patients with the best health care possible. SNM members specialize in molecular imaging, a vital element of today’s medical practice that adds an additional dimension to diagnosis, changing the way common and devastating diseases are understood and treated.

SNM’s more than 17,000 members set the standard for molecular imaging and nuclear medicine practice by creating guidelines, sharing information through journals and meetings and leading advocacy on key issues that affect molecular imaging and therapy research and practice. For more information, visit http://www.snm.org.

WHAT IS NUCLEAR MEDICINE?

Nuclear medicine specialists use safe, painless, and cost-effective techniques to image the body and treat disease. Nuclear medicine imaging is unique, because it provides doctors with information about both structure and function. It is a way to gather medical information that would otherwise be unavailable, require surgery, or necessitate more expensive diagnostic tests. Nuclear medicine imaging procedures often identify abnormalities very early in the progress of a disease – long before many medical problems are apparent with other diagnostic tests.

Nuclear medicine uses very small amounts of radioactive materials (radiopharmaceuticals) to diagnose and treat disease. In imaging, the radiopharmaceuticals are detected by special types of cameras that work with computers to provide very precise pictures about the area of the body being imaged. In treatment, the radiopharmaceuticals go directly to the organ being treated. The amount of radiation in a typical nuclear imaging procedure is comparable with that received during a diagnostic x-ray, and the amount received in a typical treatment procedure is kept within safe limits.

Today, nuclear medicine offers procedures that are essential in many medical specialties, from pediatrics to cardiology to psychiatry. New and innovative nuclear medicine treatments that target and pinpoint molecular levels within the body are revolutionizing our understanding of and approach to a range of diseases and conditions.

Would you like to know more about Nuclear Medicine? The SNM has two versions of our What Is Nuclear Medicine brochure available for download and bulk purchase. One is for General Educational Purposes and the second brochure is geared for Patients.

To download the Patients Brochure log on to
http://interactive.snm.org/docs/whatisnucmed2.pdf

© 2009 SNM. All rights reserved
(http://interactive.snm.org/index.cfm?PageID=3106&RPID=#URL.PageID%23)

WHAT IS PET?

Positron Emission Tomography (PET) is a major diagnostic imaging modality used predominantly in determining the presence and severity of cancers, neurological conditions, and cardiovascular disease. It is currently the most effective way to check for cancer recurrences, and it offers significant advantages over other forms of imaging such as CT or MRI scans in detecting disease in many patients. In 2005, an estimated 1,129,900 clinical PET patient studies were performed at 1,725 sites around the country. If you’re interested in learning how a PET scan can benefit you and need additional information, talk with your local health care provider or referring physician. At the end of this page are links to other sites with PET information too.

PET images demonstrate the chemistry of organs and other tissues such as tumors. A radiopharmaceutical, such as FDG (fluorodeoxyglucose), which includes both sugar (glucose) and a radionuclide (a radioactive element) that gives off signals, is injected into the patient, and its emissions are measured by a PET scanner.

A PET scanner consists of an array of detectors that surround the patient. Using the gamma ray signals given off by the injected radionuclide, PET measures the amount of metabolic activity at a site in the body and a computer reassembles the signals into images. Cancer cells have higher metabolic rates than normal cells, so they show up as denser areas on a PET scan. PET is useful in diagnosing certain cardiovascular and neurological diseases because it highlights areas with increased, diminished or no metabolic activity, thereby pinpointing problems.

Cancer and PET

PET is considered particularly effective in identifying whether cancer is present or not, if it has spread, if it is responding to treatment, and if a person is cancer free after treatment. Cancers for which PET is considered particularly effective include lung, head and neck, colorectal, esophageal, lymphoma, melanoma, breast, thyroid, cervical, pancreatic, and brain as well as other less-frequently occurring cancers.

Early Detection:

Because PET images biochemical activity, it can accurately characterize a tumor as benign or malignant, thereby avoiding surgical biopsy when the PET scan is negative. Conversely, because a PET scan images the entire body, confirmation of distant metastasis can alter treatment plans in certain cases from surgical intervention to chemotherapy.

Staging of Cancer: PET is extremely sensitive in determining the full extent of disease, especially in lymphoma, malignant melanoma, breast, lung, colon and cervical cancers. Confirmation of metastatic disease allows the physician and patient to more accurately decide how to proceed with the patient’s management.

Checking for recurrences:

PET is currently considered to be the most accurate diagnostic procedure to differentiate tumor recurrences from radiation necrosis or post-surgical changes. Such an approach allows for the development of a more rational treatment plan for the patient.

Assessing the Effectiveness of Chemotherapy:

The level of tumor metabolism is compared on PET scans taken before and after a chemotherapy cycle. A successful response seen on a PET scan frequently precedes alterations in anatomy and would therefore be an earlier indicator of tumor response than that seen with other diagnostic modalities.

PET and CT or MRI

Because PET measures metabolism, as opposed to MRI or CT, which “see” structure, it can be superior to these modalities, particularly in separating tumor from benign lesions, and in differentiating malignant from non-malignant masses such as scar tissue formed from treatments like radiation therapy. PET is often used in conjunction with an MRI or CT scan through “fusion” to give a full three-dimensional view of an organ and the location of cancer within that organ. The newest PET scanners are a combination of PET and CT devices that provide the important metabolic information from PET superimposed on the high-quality anatomic information from CT.

Neurological Disease

PET’s ability to measure metabolism also has significant implications in diagnosing Alzheimer’s disease, Parkinson’s disease, epilepsy and other neurological conditions, because it can vividly illustrate areas where brain activity differs from the norm.

Alzheimer’s Diagnosis: Until recently, autopsy has been considered the only definitive test for Alzheimer’s disease (AD). Recent studies indicate that PET can supply important diagnostic information and confirm an Alzheimer’s diagnosis. When comparing a normal brain versus an AD-affected brain on a PET scan, a distinctive image appears in the area of the AD-affected brain. This pattern is seen very early in the AD course. Conventionally, the confirmation of AD is a long process of elimination that averages between two and three years of diagnostic and cognitive testing. Early diagnosis can provide the patient access to therapies, which are more effective earlier in the disease.

PET also is useful in differentiating Alzheimer’s disease from other forms of dementia disorders, such as vascular dementia, Parkinson’s disease, Huntington’s disease, etc.

Epilepsy:

PET is one of the most accurate methods available to localize areas of the brain causing epileptic seizures and to determine if surgery is a treatment option.

Cardiovascular Disease

By measuring both blood flow (perfusion) and metabolic rate within the heart, physicians using PET scans can pinpoint areas of decreased blood flow, such as those with blockages, and differentiate living muscle from damaged muscle, which has inadequate blood flow (myocardial viability). This information is particularly important in patients who have had previous myocardial infarction (heart attack) and who are being considered for a procedure such as angioplasty or coronary artery bypass surgery.

Cost & Reimbursement:

PET scan charges range from $850–$4,000, depending on the type of scan. American Insurance companies will cover the cost of many PET scans. Medicare reimburses for almost all cancers. Some indications have already been determined to be reimbursable, others are reimbursed as long as they are part of a qualified clinical trial or a clinical study to determine the effectiveness of PET in imaging specific cancers. Medicare is constantly updating reimbursements, so visit the SNM Web site to find the latest information.

History of PET

In the 1970s PET scanning was formally introduced to the medical community. At that time it was seen as an exciting new research modality that opened doors through which medical researchers could watch, study, and understand the biology of human disease.

In 1976, the radiopharmaceutical fluorine-18-2-fluoro-2-deoxyglucose (FDG), a marker of sugar metabolism with a half-life of 110 minutes, enabled tracer doses to be administered safely to the patient with low radiation exposure. The development of radiopharmaceuticals like FDG made it easier to study living beings, and set the groundwork for more in-depth research into using PET to diagnose and evaluate the effect of treatment on human disease.

To perform PET studies in the late 1970s, a large staff was needed: physicists to run the cyclotron that produces the fluorine-18 and to oversee the scanner, chemists to make the tracers such as FDG, and dedicated, specialist physicians.

During the 1980s the technology that underlies PET advanced greatly. Commercial PET scanners were developed with more precise resolution and images. As a result, many of the steps required for producing a PET scan became automated and could be performed by a trained technician and experienced physician, thereby reducing the cost and complexity of the procedure. Smaller, self-shielded cyclotrons were developed, making it possible to install cyclotrons at more locations.

Over the last several years, the major advance in this technology has been the combining of a CT scanner and a PET scanner in one device. The modern PET/CT scanner allows a study to be done in a shorter amount of time but still provides more diagnostic information.

PET Today

PET and PET/CT are widely available today. The technology is robust and provides high-quality images. Some of the earlier roadblocks to having or using a PET or PET/CT device—such as availability of particular radiopharmaceuticals—are no longer present.

Reviewed by R. Edward Coleman, MD

© 2009 SNM. All rights reserved.