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

MPs CALL FOR FIBROMYALGIA EDUCATION FOR DOCTORS IN FIRST EVER FMS DEBATE IN UK PARLIAMENT

From the FMS Global News Desk (UK)

Courtesy/Source Hansard

by Jeanne Hambleton Copyright 2009

FIBROMYALGIA THE CINDERELLA CONDITION

Fibromyalgia made history on May 5 with a first time debate on the condition in the House of Commons Westminster Hall, prior to International Fibromyalgia Awareness Day (May 12).

Rob Wilson MP, chairman of the all party parliamentary group on fibromyalgia, called on the Parliamentary Under-Secretary of State for Health, Ann Keen MP, to assist fibromyalgia sufferers by providing better education for doctors enhancing their knowledge about fibromyalgia. He urged the Department of Health to consider a nationwide awareness campaign to highlight fibromyalgia syndrome, the importance of fast diagnosis and the provision of treatment?

“Do the millions of people who suffer with this illness not deserve at least that from their NHS. It is unsatisfactory that many GPs are not confident or able to diagnose the illness in a timely fashion,” he said.

Stressing education about fibromyalgia is urgently needed and that the Government, through the NHS, could be the catalyst, Rob Wilson suggested the condition is a significant drag on the economy. There were also calls for an improvement and wider access to pain management, and it was felt that there was clearly no focus on the illness in the Department of Health.

Norman Lamb MP described fibromyalgia as something of a Cinderella condition. It is widely misunderstood and there is a great deal of ignorance about it, which has a significant impact on those who suffer from it. He called for the Department for Work and Pensions to address the condition and take it more seriously.

It was reported by Rob Wilson that there were 2.7 million people in the UK suffering with a very common illness – fibromyalgia. It is in fact as common as rheumatoid arthritis and can be even more painful he said.

He said a survey of five European countries had shown that fibromyalgia affects between 2 per cent and 4.5 per cent of the population, or at least one in 50 people, from children to the very elderly. Fibromyalgia had been shown to have more impact on patients’ lives than many other forms of widespread pain and chronic illness.

“I believe that the sheer scale of the illness and the suffering that results from it mean that it is high time fibromyalgia was taken seriously as an issue,” he added.

Rob Wilson made reference to constituent Jean Turner who has been without a diagnosis for years. “I am sure that we would all agree that the 13 years taken to reach a diagnosis in Jean’s case was far too long,” he added.

He suggested that all Jean and other sufferers would ask is to be believed when they say that they are in pain and are not hypochondriacs. Sufferers want support to be available from the NHS. They want guidelines finally to be produced by NICE, and they want GPs to be trained properly in diagnosing the condition.

Describing fibromyalgia as a very common illness Rob Wilson suggested fibromyalgia is in fact as common as rheumatoid arthritis and can be even more painful. A staggering number of people in the UK who suffer from fibromyalgia may not hold down a paying job or enjoy a social life.

Although the cause of fibromyalgia has yet to be found, he suggested the disease often develops after some sort of trauma that seems to act as a trigger, such as a fall or car accident, a viral infection, childbirth, an operation, a huge emotional event or without any obvious trigger. Research had identified a deficiency in serotonin in the central nervous system, with a resulting imbalance of substance P, a spinal fluid that transmits pain signals. The effect of that is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness.

“We can only hope that research will discover the cause and result in more effective treatment in the years to come,” he added.

Discussing diagnosis Rob Wilson suggested it is difficult to identify the illness by standard laboratory tests or X-rays. Blood tests and scans will return a negative result and a patient will not necessarily look ill. Many of the symptoms are also found in chronic fatigue syndrome, rheumatoid arthritis and osteoporosis. It is not surprising that fibromyalgia has been dubbed ‘the invisible illness’.

“The problem comes when doctors do not have the experience or expertise to make a diagnosis. Nearly half of all specialists reported fibromyalgia as being ‘very or somewhat’ difficult to diagnose,” said the MP. “The average time taken for diagnosis is more than two years, and patients report seeing between two and four physicians before a diagnosis is reached. That lengthy period can be very worrying, frustrating and upsetting for patients.

“Despite the fact that several specialist fibromyalgia syndrome clinics are provided by NHS consultants around the UK, most of those do not appear in their own right on the NHS choose and book system. Even those GPs who know about the condition—and there are too few of those—who are looking for specialist help within the NHS cannot always refer patients directly to consultants with an interest in and knowledge of fibromyalgia. One of the immediate actions that the Minister could take today is to rectify the situation. Those clinics could be added to the ‘choose and book’ system, and the NHS could build and provide an extensive list of accepted specialist NHS services around the country.”

Currently fibromyalgia treatment reduces pain and improves sleep. Treatment focuses on the symptoms not the condition. The best that a doctor can do is give guidance on ways of coping with and treating some of the symptoms.

“I hope that it does not appear that I am criticising GPs, specialists or the NHS in general. That is not my purpose, as I believe that they do fantastic work under immense pressure; however, a major problem is that GPs get little or no training on the condition, and even consultant rheumatologists, who would usually diagnose fibromyalgia, often have little or no specific training. Professional development is currently hampered by out-of-date medical tests containing erroneous information. Much of the fibromyalgia information that is used by the NHS is provided by voluntary organisations such as the Fibromyalgia Association,” said Rob Wilson.

He pointed out that the NHS Direct online information had been brought up to date on fibromyalgia in 2008 by FibroAction, a charity supporting the syndrome.

Rob Wilson insisted, “It is clear that things need to change. Getting an accurate diagnosis is difficult, and about half of our GPs admit that the condition is often misdiagnosed. They highlight a lack of confidence in their ability to recognise the symptoms of fibromyalgia, or to differentiate the condition from others with similar symptoms. The problem does not rest with GPs alone. It is widespread in the medical profession. Education on the condition is urgently needed; the Government, through the NHS, could be the catalyst.”

Philip Hollobone MP said the NHS needs to provide as much help and support for GPs as possible. If it is difficult for specialists to identify the condition, it must be near to impossible for GPs.

Rob Wilson continued, “I also know that the Minister’s heart is in the right place, and that she is anxious for the NHS to help.”

He pointed out recent parliamentary questions from Members throughout the House have had a less than encouraging response. In June 2008, the Member for Twickenham (Dr. Cable) asked what plans the Department of Health had to improve treatment for people with fibromyalgia. The answer came, “There are no specific plans to improve the treatment for those living with fibromyalgia.”—[Official Report, 30 June 2008; Vol. 478, c. 655W.]

Another Member asked how many people were diagnosed in his constituency, the region and nationwide since 1997. The answer was: “Information on the number of people diagnosed with fibromyalgia is not collected.”—[Official Report, 21 November 2007; Vol. 467, c. 998W.]

He said, “Among other things, I asked the Minister what steps were being taken to raise awareness of fibromyalgia, and what progress there was on diagnosis and treatment. The response was: ‘We have made no assessment of the progress being made by the National Health Service into improving the diagnosis and treatment of fibromyalgia. We have taken no recent steps to raise the awareness of fibromyalgia among the general public and health professionals.’ ”—[Official Report, 9 October 2007; Vol. 464, c. 516W.]

Suggesting there is a discernible pattern Rob Wilson said there is clearly no focus on the illness in the Department, and no focus on it in the NHS, yet the condition acts as a significant drag on the economy. In 2006, through a parliamentary question, Rob Wilson discovered that 8,400 people who were claiming incapacity benefit or severe disablement had been given a primary diagnosis of fibromyalgia.

“We know that that is the tip of an iceberg, as most fibromyalgia sufferers on benefits will have been diagnosed with something else. The economic cost of the failure to diagnose the problem swiftly does not affect only the Department for Work and Pensions; the cost to the NHS and local authorities, too, will be huge. Better awareness and education of health professionals would considerably reduce that financial burden,” said Rob Wilson.

MPs paid tribute to the work of all local supports groups including Kettering Nene Valley support group.

Rob Wilson recognised the ongoing work of many groups that work tirelessly for the sufferers of the condition, and do their best to raise its profile but the message regularly comes back that there is a problem in raising the profile. Raising the profile of the condition is difficult without the support of the relevant authorities.

He spoke about an application made almost two years ago to National Institute for Health and Clinical Excellence (NICE). The aim was to establish clear guidelines on fibromyalgia.

“In May 2008, FMA UK had still not received a response, and asked me to intervene. Despite my intervention, still no response was received. Suddenly, and incredibly coincidentally, in the last couple days—since today’s debate was arranged—FMA UK has finally been contacted by NICE. FMA UK was informed that its application had been unsuccessful,” reported Rob Wilson.

“The fact that FMA UK has received an answer does not excuse the arrogance or incompetence—or both—that NICE has shown until now. Frankly, it is insulting and deeply frustrating for those who work tirelessly to raise the profile of the condition to have to wait for a debate such as today’s before the relevant authorities take them seriously. A delay of two years is not good enough,” he said.

It is imperative that a clear medical framework is set out for GPs. It is more than long overdue. Although he urged NICE to consider the matter again he requested the Minister to give fibromyalgia sufferers some hope by confirming that she will intervene, asking NICE to ensure a clear set of guidelines for the diagnosis and treatment of the illness are approved?

On this he added, “It is not acceptable that NICE has only just acknowledged FMA UK’s application to provide a clear and unequivocal set of guidelines for GPs. Those guidelines could be used in the training of the medical profession and could reduce the stressful experience currently associated with diagnosis”.

It was suggested that many fibromyalgia sufferers look to the Department of Health for leadership and support. They were gratified that the chief medical officer, Sir Liam Donaldson, recognised the impact of fibromyalgia and its prevalence in the UK as a cause of chronic pain in his annual report of 2008.

Sir Liam’s annual report, published in March 2009, had said: “Chronic pain reduces the quality of life more than almost any other condition. The impact of pain on people’s lives is significant, bringing emotional and financial burdens to patients and loved ones. A major initiative to widen access to pain services is badly needed.” He stated that FM sufferers require information, and access to NHS tailored services.

Tribute was paid to Professor John Davies at Guys Hospital, the Russells Hall Hospital in Dudley, good multi-disciplinary teams at the Royal Bolton and Poole hospitals, and an eight-week course for fibromyalgia patients that is being run by southwest Essex community services in conjunction with Basildon University Hospital. Rob Wilson made reference to Lindsey Middlemass, the chair and founder of FibroAction and referred to her long struggle for a diagnosis and her work with NHS Direct and new guidelines.

In February 2005, Dr. Ernest Choy and Dr. Serena Carville, from King’s College London, produced a nine-point recommendation for the management and treatment of fibromyalgia. It is a credible report and is worth mentioning for that reason. Choy and Carville concluded that a full understanding of fibromyalgia requires an assessment of pain, function and the psychological impact on patients.

They also believe that individually tailored exercise programmes, including aerobic exercise and strength training, can be very beneficial, as well as other therapies, such as relaxation and physiotherapy. Relaxation works very well for almost everyone affected by this condition. It reduces tension in the mind and body and calms the symptoms, especially the pain. Choy and Carville concluded that, ultimately, medical professionals need to be able to listen to, and believe in, an individual’s experience of pain. Only then can a programme of treatment be established to reassure them and reduce stress and anxiety.

Asking the Minister to help those with fibromyalgia Rob Wilson suggested, “It is clear that we need to work towards providing greater education for general practitioners. It is unsatisfactory that many GPs are not confident or able to diagnose the illness in a timely fashion. Timely diagnosis is key to helping people with this condition. Secondly, it is not acceptable that NICE has only just acknowledged FMA UK’s application to provide a clear and unequivocal set of guidelines for GPs. Those guidelines could be used in the training of the medical profession and could reduce the stressful experience currently associated with diagnosis.

Martin Horwood MP said he was taken aback by some of the statistics that Rob Wilson gave, which were new to him. He felt there is the risk—this was the experience with drugs for dementia and other illnesses—that NICE will use the lack of a good evidence base as a reason for refusing to recommend treatment. Is that a risk, given some of the issues that mentioned, about credibility, belief and so on?

“We are looking not for advice on drugs, but for a set of guidelines so that people can be diagnosed quickly and GPs can properly understand their functions in this regard,” Rob Wilson said.

Effective treatment needs to be available throughout the country, but that should be signposted by the NHS, rather than third-party organisations. The profile of fibromyalgia desperately needs to be raised.

“As I mentioned before, despite its dedication, the voluntary sector can only do so much. We all have a part to play in raising awareness, but help from the Government is much needed. As we have seen, fibromyalgia is a complex condition with numerous contributing factors, and although research has advanced our understanding, it is clear that much work remains to be done.

“I know that the Minister has many pressures on her time and that there are also many pressures on the resources of the NHS. However, I know that she understands the chronic pain and suffering affecting millions of people throughout the UK and that she will do her utmost to provide assistance. I hope that today’s debate will help to raise the profile of this ‘invisible’ illness. That is the very least that I can do to help to support the many campaigners who have done their best to raise its profile,” added Rob Wilson.

Roger Williams MP said part of the problem for sufferers is that the condition takes so long to be recognised by the health services that they often come to believe that they are in some way responsible or guilty.

“They exhibit symptoms but are without the support necessary to bring some relief….. we have very little idea of what causes the condition—whether it is the genetic make-up of the individuals or an environmental aspect that they have experienced. Evidence is now being gathered relating the absence of serotonin to the symptoms of the disease. If that can be established, a much more profound and substantial method of treatment could be achieved. I have seen evidence that meeting other sufferers to discuss their experiences, symptoms and treatment can give individuals great confidence that there is a possibility that something can be achieved to alleviate their symptoms.

“The Minister would do well to take on board the comments made by the hon. Member for Reading, East and do what she can to ensure that the condition is recognised, that GPs diagnose it earlier than in the past and that provision is made for help through pain relief and encouraging good sleeping patterns, which make such a difference to the sufferers. I ask the Minister to take on board all those concerns,” said Roger Williams.

Norman Lamb suggested this was one of those occasions when all the parties can come together to make the case for improving awareness of fibromyalgia both among the public and the medical profession—particularly in primary care.

Fibromyalgia is something of a Cinderella condition. It is widely misunderstood and there is a great deal of ignorance about it, which has a significant impact on those who suffer from it. It is right to acknowledge fibromyalgia awareness day, which is on 12 May. It is a moment to concentrate minds and to focus the attention of the Department of Health, the National Health Service and NICE on a more effective approach to tackling the condition.

He said, “Sufferers often have a sense that no one believes them, especially when they have to apply for benefits because they cannot keep their employment. They feel that no one believes that the condition is disabling, so they are left utterly alone. It is a chronic condition, and one that applies particularly to women. Its impact on relationships, social lives and the capacity to work is substantial. It is often the case that conditions such as fibromyalgia, myalgic encephalomyelitis and chronic fatigue syndrome have a greater impact on people’s lives and their capacity to function as human beings, than many conditions that attract much greater attention in public discourse and in Parliament. It was a breakthrough when the Chief Medical Officer acknowledged the significance of the condition and made a clear plea for action to be taken…… a major initiative to widen access to pain services is badly needed.”

Norman Lamb continued, “It is hard to convince GPs and others that the problem is genuine. A newspaper article quoted Julia Fitzgerald, who, after eventually securing a diagnosis, was offered antidepressants. That was the medical profession’s response to her condition. Moreover, the fact that it takes between two and four clinicians to secure a diagnosis is simply unacceptable….. the priority must be to improve the training of GPs and other members of the medical profession, to ensure that when a patient presents with the condition they receive greater understanding. It is not good enough just to look at the training of new doctors coming through the system. We need to focus on continuing professional development for those who are already in post and who are all too often failing to give their patients an adequate or accurate diagnosis….. one cannot escape from the sense that the Department of Health has a lack of interest in the issue, so this is a good occasion for the Minister to reassure us that that is not the case.”

Following talk about getting the referral from primary care to a specialist centre right, Norman Lamb said the problem is not unique to fibromyalgia. Persuading the NHS to make the right referral can be a real challenge. Changing or adapting the ‘choose and book’ system to ensure that when any clinician across the country is faced with a patient with such a condition—or has the potential to suffer from it – they can point the patient to the right specialist centre wherever they live would be an enormous advance.

Returning to the role of NICE he said, “It is scandalous that it has managed to ignore for two years a clear request for guidance on the treatment of fibromyalgia. We hear that the application was unsuccessful. I now ask the Minister to engage with NICE?”

Ann Keen, (Parliamentary Under-Secretary (Health Services), Department of Health, replied that NICE was an independent body and Members had accepted the importance of that independence.

Norman Lamb accepted the absolute importance of the independence of NICE, but asked the Minister if she was able to request that it investigate a particular condition and consider providing guidance?

Ann Keen said the importance of NICE’s independence makes things difficult. But she was confident that the debate will assist in other ways.

Norman Lamb insisted a request would not challenge NICE’s independence—it is not an order. He asked would the Minister request NICE to investigate the possibility of preparing guidance on the treatment of fibromyalgia? That would be a very valuable step for her to take.

Bob Spink MP suggested NICE will be aware of political indifference in the House and prejudice in the NHS against what is a debilitating condition. Consequently, the Benefits Agency does not take the issue as seriously as it might, which disadvantages people with real, debilitating conditions who deserve better.

Norman Lamb recommended NICE could take from the debate a clear message that MPs want it to take the condition seriously and to come up with clear recommendations for its treatment. It was right to identify the importance of the Department for Work and Pensions taking the condition more seriously. There can be nothing worse for a person who is unable to work because they suffer from a debilitating condition than benefits officers not to accept or believe that the condition is serious. That has to be addressed.

He pointed out that pain management services are not part of the 18-weeks target and many people in the country are left waiting a scandalously long time for access to them. Given how debilitating the condition is, it is important that access to pain management is improved.

He quoted Sir Liam Donaldson’s recent annual report, “Chronic pain reduces the quality of life more than almost any other condition. The impact of pain on people’s lives is significant, bringing emotional and financial burdens to patients and their loved ones.”

Pointing out the impact of the condition on whole families Sir Liam had said, “A major initiative to widen access to pain services is badly needed.”

Norman Lamb suggested the Minister could provide enormous reassurance to those who suffer from the condition if she announced the clear initiative for which Sir Liam Donaldson has called.

Anne Milton MP Shadow Minister, Health, paid tribute to the FMA UK website and the variety information adding she was extremely impressed. She said the website also raised the difficulties of diagnosing and treating children, and the problem of education.

“The economic cost in terms of benefits is just one of the problems. I put together a flow chart of how someone with fibromyalgia might feel. It starts with pain—people do not know the origin of the pain—and goes on to reduced mobility and social isolation. The lack of diagnosis causes depression; people lose their employment and families break down. Both lead to reduced income. Furthermore, the impact on family, carers and friends is immense. Fibromyalgia and other undiagnosed chronic conditions take a significant toll on the spouses and children of the people who have them. In an ideal world, we would have increased awareness, early diagnosis and intervention, treatment, support and rehabilitation. That applies to fibromyalgia and many other chronic conditions,” she said.

The debate had done much to highlight the problems faced by fibromyalgia sufferers. The belated response from NICE, to which many Members referred, was not the answer they wanted, but it demonstrates that these debates are useful. They raise awareness and get the Minister’s attention – she has a significant brief.

“Sometimes, particularly at the moment, the House gets something of a knocking from the press and the public, but opportunities such as this debate are extremely important. They demonstrate that we can make a difference,” said Anne Milton.

She continued, “I hope that the Minister will confirm and re-establish that the Government take the condition seriously. Specifically, what steps is she taking to ensure that the training of doctors in particular includes a greater awareness of the significance of the signs and symptoms with which patients might present?

“As medical care and treatment become increasingly specialised, it is important that the Government take steps to ensure that GPs receive continuing professional education so that they can be confident in recognising and accessing treatment for such conditions. It involves not only GPs but all health care workers. The issue could also, in some instances, be addressed in schools. There has never been a greater need for awareness of the implications of signs and symptoms in the minds of the public sector workers who work with and meet the people affected.

“What specific plans does the Minister have for improving the treatment of fibromyalgia and access to secondary referral? I am sure that she will take steps to address that. Raising the profile and awareness of fibromyalgia among the groups that I mentioned is vital. Will she give the matter personal attention and demonstrate that the Government is aware that people with the syndrome are not getting the attention that they deserve, and will she take steps to ensure that attitudes from the Department of Health downwards change so that people get the care that they deserve and need?

“This is also a useful opportunity for the Minister to clarify the position of NICE. As she said, NICE is independent, which is extremely important. However, as I understand it, it works within a framework put together by the Government. Although we broadly welcome NICE’s independence and much of the work that it does, there are situations in which access to treatment regimes is not being made available by NICE. Response is slow. I am sure that she will take this opportunity to clarify those issues and demonstrate that she can do something to improve the lot of people with fibromyalgia,” said Anne Milton.

Ann Keen acknowledge that fibromyalgia had not discussed in the House before. She said she knew Rob Wilson had worked extremely hard to champion the cause of people living with fibromyalgia, not least as chair of the all-party parliamentary group on the condition.

“I am grateful to him for giving us the opportunity to debate it today. Every one of us wants the best for those suffering from that chronic, distressing, uncomfortable and painful condition,” said the Minister.

“I recognise how distressing fibromyalgia can be to those living with the condition and to their families, and I know that much of that distress is caused by difficulties recognising, acknowledging and accepting the condition and its impact. Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being and disrupt work, social and family life.

“What can we do to raise the profile of fibromyalgia? I believe that this is the start of an important dialogue, particularly with the all-party group. I think that Members, particularly Front Benchers, recognise that setting NHS must-dos is not easy, as such things affect every one of us and every part of our bodies. The Department of Health must be sparing in setting those priorities centrally because of the criticism that we often receive when we attempt to do so. I know that everyone in this Chamber is here in good heart, but it is important to put it on the record that if we were to keep giving the NHS priorities, my list, let alone those of the rest of the ministerial team, would be long.

“The Department has set up the National Quality Board to advise Ministers what priorities the National Institute for Health and Clinical Excellence should adopt in setting NHS standards, as well as which conditions require the Department’s closer attention. The priorities are likely to be based on an objective assessment of the burden of disease and an analysis of the gap between the quality of existing services and best current practice. That is something that we can work with.

“Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being, which in turn affects the social and financial economy of the family, the community and the country. Sadly, there is no cure, so treatment aims to ease symptoms as much as possible and improve patients’ quality of life. However, we all know that care for people with fibromyalgia varies widely, as has been demonstrated by Members today, particularly those representing rural areas. In the worst cases, people with the condition are left feeling that the health care system does not recognise their illness. I can understand why patients would feel that way. I acknowledge the points made today. The case has been made that better services, quicker diagnosis and better understanding can make a major difference to the quality of life of people with fibromyalgia. I want to respond as positively as I can to the issues raised.

“Let me be clear that we want to ensure that people with the condition live as well as possible. Their quality of life is important to all health professionals, particularly Ministers with responsibility for health. I pay tribute to the hard work and dedication of the voluntary sector in helping people with fibromyalgia, especially FibroAction and the Fibromyalgia Association UK. It is important to raise awareness among the medical profession and the public at large, and such organisations have been at the forefront of improving knowledge of this distressing condition.

“As a health professional, I know that it is unnerving to be faced with a patient who knows more about their condition than I do, but in these days of technology, the Internet provides access to wider knowledge and patients feel that they have more autonomy. To receive no response is thus even more frustrating. I totally acknowledge what has been said today, and I am confident that there are people present here who could enlighten us even further.

“There is comprehensive information on the care of people with fibromyalgia specifically for health professionals on NHS Evidence, which is the new web-based portal that provides all health and social care professionals with authoritative clinical and non-clinical evidence and best practice. It provides access to a range of information, including primary research literature, practical implementation tools, guidelines and policy documents,” she said.

The Minister continued, “The NHS Choices website provides information to help put patients in control of their health care. It contains a number of sections that deal with fibromyalgia. There is detailed information on diagnosis, treatment and on living with the condition. NHS Choices has launched a free training programme for health professionals to improve their understanding of all the features available on NHS Choices, including how to direct patients to local services and how to access NHS accredited information about healthy living and conditions.”

Norman Lamb asked the Minister if she would will she speak about ‘choose and book’? Patients can now make choices about where they go and doctors can advise them on what might be best. Will she explore whether the system can guide clinicians to the right specialist services, wherever they are in the country?

Ann Keen admitted this was a valid point. She said she believes that best practice happens in certain areas. As with any new initiative, some places take the reins quicker and more effectively than others.

“We are working towards that being addressed. Hon. Members have mentioned awareness of the condition among GPs and other health professionals. I am sure that all hon. Members are aware that the Department does not specify the content of training curricula. That is done by the royal colleges and is determined by regulatory requirements and the needs of the service. Nevertheless, we expect all health care staff to learn and to get the training and skills that they need to deal with all their patients. Obviously that includes those with fibromyalgia.”

Rob Wilson thanking the Minister for her replies so far said, “I am interested by the NHS Evidence web portal. I believe that it is for health professionals. Is it possible for members of the public or parliamentarians to look at what it advises general practitioners to do so that we have a clear view of the situation?”

Ann Keen said NHS Choices and NHS Evidence are certainly becoming more transparent and open.

“Although we cannot direct the curriculum, we expect all health care staff to get the training and skills that they need. Education and training for health care staff is, and always has been, a priority for the Department of Health. However, we accept that there is room for improvement. As will be obvious from Lord Darzi’s review of the NHS, we are looking at the content of curricula for undergraduate and postgraduate training in health and social care. That is important because of how long-term conditions will be treated in the community in future, as the hon. Member for Guildford (Anne Milton) said. We are looking at this matter, but we cannot dictate it.”

Anne Milton said she appreciated that the Government do not dictate the curricula, and asked, “Does the Minister not accept that there are issues, not only with fibromyalgia, but with many chronic conditions? There is an issue with GPs getting time off to do adequate training. Some GPs need training, but do not volunteer for it. There are issues for other health care staff and for nurses in particular. There can be problems with the ring-fencing of training budgets and with their use to cover shortfalls elsewhere. I am worried that we will slip backwards on training issues because NHS finances are quite tight. That would be a false economy. Money for continuing professional development is vital.”

Ann Keen replied, “That point was well made and it is well taken. The safety and quality that are required in the NHS cannot be provided, nor the professionalism of the health care team maintained, without the knowledge that is required. I am confident that it will be accepted that nurses are at the centre of that team and that they direct it.

“The transparency that we have asked for replaces ring-fencing and is much better than it. We will be able to see where the money is spent and whether education and training are given priority. The settlement for the NHS has been made up to 2010-11. We have always said that investment in education and training is paramount in everything we do, particularly at this difficult time. I should ask the Conservatives whether that investment will continue during the recession under their pledges on NHS funding. Some health professionals are not aware of conditions that may present at their practices in the way that they could and should be. We must correct that situation,” the Minister said.

Norman Lamb said he was grateful for the Minister’s generosity in continuing to give way and he understood that NHS Evidence was a new portal that was developed primarily by NICE. Given that NICE has been fairly unhelpful in its willingness to provide guidance on this condition, he asked if the Minister knew what NHS Evidence says about the treatment of this condition or what advice it gives to GPs? Should that be investigated to ensure that NHS Evidence is giving helpful guidance, he said?

Ann Keen replied that Lord Darzi’s review of the NHS will look at the content of the curricula for undergraduate and postgraduate training in health and social care. Fibromyalgia diagnosis and care will benefit from that work. She hoped that gave reassurance to Members and to sufferers.

“The hon. Member for Reading, East (Rob Wilson) will be aware that in 2003 the Chief Medical Officer issued a newsletter to all doctors in England to raise awareness of the condition and the extent to which it affects the population. We can send out such directives, but it is difficult to monitor how they are received. However, we know that it was well received by patients and health professionals. I have asked officials to look into the feasibility of reporting that exercise. We want to look at what has happened with that exercise since 2003, and to report back, and we are able to repeat that exercise easily, especially given what the Chief Medical Officer has said about pain, which has been acknowledged on both sides of the House today.

“Guidance has been mentioned, particularly the use of NICE guidance in securing improvements and reducing variations in the quality of care. As the hon. Gentleman and others have said, the Fibromyalgia Association UK has asked NICE, as part of its topic selection process, to consider developing clinical guidance on the diagnosis and management of fibromyalgia. Hon. Members have acknowledged the importance of NICE’s independence, but I have also been asked other questions. Both FMA UK and the hon. Gentleman have expressed concern at the slow progress in receiving a response from NICE, and I can confirm that the association has now been informed of the outcome of this topic. I have been asked whether I can intervene. Anyone can write to NICE with a request, but after matters are considered by the panel of experts, they are passed to Ministers for approval, so it is difficult for Ministers to intervene at the beginning of the process.

“In 2006, we launched the musculoskeletal services framework, which sets out guidance to provide high-quality and integrated services for people with musculoskeletal conditions, including fibromyalgia. The framework will help to improve the assessment and diagnosis of, and treatment for, fibromyalgia and other musculoskeletal conditions. It will encourage the giving of more support to help people to manage their own conditions, and it will get across better information and advice. It will also provide a clearer focus on the needs of children and families. The framework also supports an 18-week target for the time from referrals from GPs to the start of hospital treatment.

“Pain is a common, distressing and often disabling symptom in many musculoskeletal conditions, including fibromyalgia. The Department of Health has already supported the work of the NHS on the management of chronic pain through a number of important initiatives, including the musculoskeletal services framework, the 18-week commissioning pathway for the management and treatment of chronic pain, and the NHS Choices website. I must correct the hon. Member for North Norfolk (Norman Lamb) on one point: the development of the 18-week commissioning pathway for pain, in particular, assists commissioners in delivering the appropriate services for their populations. The pathway for chronic pain, which was developed with leading pain clinicians and with the consensus of a wide range of key stakeholders, will help to transform services with examples of good practice. It recommends the use of the brief pain inventory to assess the level and impact of pain, which is an important tool in assessing the patient,” the Minister added.

“I worked for many years as a community and district nurse, and I observed at first hand, when I told patients that their test results had come back negative, the guilt that they experienced for feeling pain when their test was negative. My practice, at all times, was to accept that the patient had the pain that they said they had. Those are the only criteria on which health professionals should operate. These issues are so mixed, especially when psychological aspects are taken into consideration. The fact that some patients are prescribed antidepressants, rather than analgesia, as has been mentioned, shows the need for pain to be managed differently, and I commend the Chief Medical Officer for his statement.

“I recently responded to an Adjournment debate in the main Chamber that had been secured by the chair of the all-party group on chronic pain, my hon. Friend the Member for Aberdeen, South (Miss Begg). I certainly think that the two all-party groups should talk together. On that evening, the chair was supported by the Chronic Pain Policy Coalition, and I met them at the end of the debate to say how important work on pain is. It should not be something that one puts up with; there is a limit. Pain is subjective, and it is important to have the correct measuring tools. I remember that one of the most distressing parts of my work as a practising nurse was to leave someone in pain without having an answer for them—that is no longer acceptable.

“Officials are currently scoping regional events to support the voluntary sector in influencing commissioners to provide better pain services locally, and to engage with professional bodies to raise awareness about chronic pain and about the needs of patients with chronic pain. The development and content of those events is being taken forward with the third sector, and I will ask officials to ensure that fibromyalgia groups are involved in that process. Once again, I thank the hon. Member for Reading, East for bringing this important issue to the attention of the House, and particularly for the manner in which he has done so.”

EDITOR’S NOTE: My apologies for the length of this report but it is almost a full transcript of the 75 minutes debate actioned by the chairman of the All Party Parliamentary Group (APPG) for Fibromyalgia, MP Rob Wilson. Said to be the first ever fibromyalgia debate in Parliament (Westminster Hall) this was a historic event which is why I have run the story at length.

I am sure you will recognise many things that have been said and it is good that the national organisation, FMA UK, has been acknowledged. Personally I feel without ‘gentle persuasion’ by Jean Turner, FMA UK Trustee, and Rob’s constituent, this might not have happened. Well done Jean T. You did a grand job. All we want now is some results.

It appeared to me that on the whole the Minister, as a health professional, had every sympathy with the requests for change and support for FMS. However I could not help but feel her hands were tied. For this reason we must keep up the pressure – raising awareness this week for May 12 International Fibromyalgia Awareness Day, and reminding our MPs who missed this debate even though you asked them to attend. This IS much work still to be done.

If you would like to see the 75 minute video, get a stiff drink, sit comfortably and log on to http://www.fibromyalgia-associationuk.org/content/view/385/1/

It would be good to hear your views about the debate? Email me at
jeannehambleton(@)mac.com. Please omit the brackets – I am fighting the cyberspace robots.

My thanks to Hansard and TheyWorkForYou.com as the sources for this helpful information.

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

MPs DEBATE FIBROMYALGIA IN WESTMINSTER UK TUESDAY MAY 5

From the FMS Global News Desk (UK)

by Jeanne Hambleton Copyright 2009

If you have fibromyalgia you will be interested to hear a debate tomorrow Tuesday May 5, in the Westminster Hall of the Houses of Commons, London.
The debate will be led by Rob Wilson MP, the chairman of the All Party Parliamentary Group for Fibromyalgia in support of people with FMS.

While we have no idea what will be said but a debate about FMS in the ‘corridors of power’ must be worth listening to. This could be almost historical, as I cannot remember such a debate before. This can be viewed worldwide on your computer. With Hansard and the national press attending the debates we could have national newspaper coverage raising more awareness about this rotten invisible disability.

If he had asked me what I would say I would begin – Dear Mr. Wilson please tell the MPs that there are two million of us suffering with this condition. That is the number diagnosed and we believe there are many more with ‘mysterious’ pains that are also fibromyalgia, but their doctors think they are imagining the pain or it is all in their head. Sounds familiar?

We know IT IS REAL. We have been there, done that, got the pain and the tee shirt.

Please mention that the USA claim fibromyalgia is now reaching worldwide epidemic proportions and this condition is for life. Mr. Wilson, Sir, please remind MPs that ME was given £8m for research around about 2006, but those of us with fibromyalgia are still waiting for help. We have no cure. The cause is unknown, our pain is as bad as ME and we too need funding for research.

What is £8m the way the Government is spending money at the moment. I am sure Mr. B would not even miss it but it would certainly help us.

We have pains 24/7, chronic fatigue, sleep disorders, cognitive problems, not to mention IBS and RLS, gastric problems, headaches, dizziness, and many more.

The debate, you should really listen to, starts at 9.30am in Westminster Hall tomorrow May 5 and lasts until 11am. As we do not do mornings – cannot get out of our own way and stumble all over the place first thing – we will probably still be in our dressing gowns enjoying a good cup of coffee, or tea – what ever is your tipple. Just switch on your computer. Then log into

http://www.parliamentlive.tv/Main/Live.aspx

Once on the site click the date May 5 and you are offered a list of four debating areas. You need bottom left, Westminster Hall, and then click Rob Wilson – support for people with fibromyalgia. I hope you can listen to everything that is said… fingers crossed.

If you have not checked in and read this article before 9.30am British Summer Time on Tuesday May 5 I am told this is recorded and can be found on this site after the debate.

You will need to search for Fibromyalgia, Private Members’ Debate: Westminster Hall May 5 at 9.30am – support for people with fibromyalgia – Mr. Rob Wilson MP.

HUGE NUMBER OF LISTENERS

FMA UK, the national Fibromyalgia Association has notified over 100 groups and it is thought the programme will attract a big audience.

Jean Turner, one of the FMA UK Trustees writing to members said, “This is fantastic news and we are grateful to Rob and fellow MPs for offering to take our concerns and raise awareness of fibromyalgia.

“If your MP has been supportive to our cause in the past, please let him know about the debate and ask him to attend and give his support.

“Please use this opportunity to contact your MP. I am sure we can actually reach every single one. They have all been contacted by us in the past so are well aware of fibromyalgia. Let us raise the profile by just one little telephone call to your local MP’s office, it is as easy as that.”

INTERNATIONAL FIBROMYALGIA AWARENESS DAY MAY 12

The debate comes a few days before International Fibromyalgia Awareness Day on Tuesday May 12. This is also Florence Nightingale’s birthday. She was the inspiration for this international event. After her work in the Crimean War she became very ill and it is said she was bed ridden for the rest of her life. It is now thought she had fibromyalgia and chronic fatigue.

People with fibromyalgia all over the world unite together on this day to proclaim the international awareness day. They successfully raise awareness and funds for research selling the only FMS CD Fibro What? This is a comedy CD by Dom Collins with a serious fibromyalgia song and three very funny tunes to make the family laugh.

This May 12 trustees of FMA UK and folk with fibromyalgia from all over the UK will be meeting Rob Wilson MP and other MPs supporting the condition in Westminster to commemorate the international event.

If you have any comments about the debate or need information about the Fibro What CD do email me. I would love to hear from you.
Email jeannehambleton(@)mac.com.

MAY 12 LAUNCH NEW MILTON KEYNES SUPPORT GROUP

OR WHAT DO RUNNER BEANS HAVE TO DO WITH FIBROMYALGIA?

Making the most of the International Fibromyalgia Awareness Day, Ali Burbridge, the new Group Leader, of the first Milton Keynes FMS Support Group, is launching her support on that day. On her posters she asked, “Have you been diagnosed with fibromyalgia or do you know someone that has and who does not know where to turn? Do you want to speak with someone that understands and has this ‘invisible’ illness?”

Well Ali is the one to talk to. Email her at alimkfms@hotmail.co.uk or ring her on 0845 428 2027 for MKFMSG.

If you want to get in her good books, ask her about the runner beans… I am not joking… this is serious stuff. What do runner beans have to do with fibromyalgia? That is a good question. That has got your guessing. I am not telling. You will have to go the meeting or contact Ali…he he he.

Enjoy the live debate. Talk soon Jeanne

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

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

ROBOT MAKES SCIENTIFIC DISCOVERY ALL BY ITSELF

From the FMS Global and UK News Desk of Jeanne Hambleton

Courtesy NewsGatorNews

By Lizzie (iamlizzieee@yahoo.com) – April 02, 2009
Categories: Artificial Intelligence, Robotics, Science Tools, Web/Tech

For the first time, a robotic system has made a novel scientific discovery with virtually no human intellectual input.

Scientists designed “Adam” to carry out the entire scientific process on its own: formulating hypotheses, designing and running experiments, analyzing data, and deciding which experiments to run next.

“It’s a major advance,” says David Waltz of the Center for Computational Learning Systems at Columbia University.

“Science is being done here in a way that incorporates artificial intelligence. It is automating a part of the scientific process that has not been automated in the past.”

The demonstration of autonomous science breaks major ground. Researchers have been automating portions of the scientific process for decades, using robotic laboratory instruments to screen for drugs and sequence genomes, but humans are usually responsible for forming the hypotheses and designing the experiments themselves. After the experiments are complete, the humans must exert themselves again to draw conclusions.

Meanwhile, some software programs can analyze data to generate hypotheses or conclusions, but they do not interact with the physical realm. Adam is the first automated system to complete the cycle from hypothesis, to experiment, to reformulated hypothesis without human intervention.

Adam’s British designers, led by Ross King at Aberystwyth University in Wales, acknowledge that the robot’s discoveries have been “of a modest kind” thus far.

Its proving ground as a scientist has been the genome of baker’s yeast, a popular laboratory species. Baker’s yeast is one of the best understood organisms, but 10 to 15 percent of its roughly 6,000 genes have unknown functions. The scientists hoped Adam could shed light on some of these mystery genes.

They armed Adam with a model of yeast metabolism and a database of genes and proteins involved in metabolism in other species. Then they set the mechanical beast loose, only intervening to remove waste or replace consumed solutions. The results appear Thursday in Science.

Adam sought out gaps in the metabolism model, specifically orphan enzymes, which scientists think exist, but which have not been linked to any parent genes. After selecting a desirable orphan, Adam scoured the database for similar enzymes in other organisms, along with the corresponding genes. Using this information, it hypothesized that similar genes in the yeast genome may code for the orphan enzyme.

The process might sound simple — and indeed, similar “scientific discovery” algorithms already exist — but Adam was only getting started. Still chugging along on its own, it designed experiments to test its hypotheses, and performed them using a fully automated array of centrifuges, incubators, pipettes, and growth analyzers.

After analyzing the data and running follow-up experiments — it can design and initiate over a thousand new experiments each day — Adam had uncovered three genes that together coded for an orphan enzyme. King’s group confirmed the novel findings by hand.

Waltz thinks Adam will inspire other scientists. “They will realize they can automate more of the process than they currently have. They can explore a wider range of possibilities without doing it all by hand.”

King is already expanding his Robot Scientist fleet by producing Eve, which will autonomously design and screen drugs against malaria and schistosomiasis.

“Most drug discovery is already automated,” says King, “but there is no intelligence — just brute force.” King says Eve will use artificial intelligence to select which compounds to run, rather than just following a list.

If robotic scientists made their way into other labs, their human counterparts would not be out of a job anytime soon. If anything, they may find their work more exciting.
“There may be teams of humans and machines,” says King.

“Robots will be doing more and more of actual experimental work and simple cycles of hypothesis generation. Humans would migrate to more strategic and creative positions. How can we waste trained post-docs by making them pipette things in labs? It’s crazy.”

But with advances in artificial intelligence, it is conceivable that the role of robots would, in the more distant future, creep deeper into the human realm, progressing from lab technician to lab head.

Robots may even be capable of performing supposed acts of genius, such as Einstein’s conception of special relativity.

“There is not any intrinsic reason why that would not happen,” says King. “I think there is a continuum between the really basic types of science that you would get from Adam, and the things I can do, and then Einstein-type science. A computer can make beautiful chess moves, but it is not doing anything special. It is just doing more of the same thing. In my view that is what is going to happen in science.”

King may already have a head start: Deep Blue could never have beaten Garry Kasparov without engineer Feng-Hsiung Hsu moving the pieces on its behalf.

(http://blog.wired.com/wiredscience/2009/04/robotscientist.html)

AN ELEPHANT AMONG US: THE ROLE OF DOPAMINE IN THE PATHOPHYSIOLOGY OF FIBROMYALGIA

From the  Fibromyalgia Global News Desk of Jeanne Hambleton

Source:The Journal of Rheumatology, Feb 2009

by Patrick B Wood, MD, and Andrew J. Holman, MD - February 13, 2009

 

 

Exploration of the pathophysiology underlying fibromyalgia (FM) has become an exciting field of inquiry as we strive to improve our understanding of this enigmatic disorder.

While evidence of a neuro-dysregulatory state mounts and insights are gained as to potential contribution of specific neurotransmitters, a review of recent literature demonstrates that not all relevant neurotransmitters are being considered equally or with disinterest. Specifically:

• The potential contribution of serotonin and norepinephrine has been emphasized, ostensibly due in part to the qualified success of trials of serotonin-norepinephrine reuptake inhibitors,

• While a general awareness of the potential contribution of dopamine-related dysfunction lags. 

Indeed, the text of recent reviews, and even peer-reviewed continuing medical education test articles, have contained either scant reference or, in a majority of cases, conspicuous neglect regarding the question of dopamine’s role in FM.

Despite the recent European League Against Rheumatism consensus recommendation to consider a dopamine agonist for treatment of FM, most clinicians and even medical authorities in the field routinely fail to acknowledge the mounting evidence for a role for dopamine in the pathogenesis of FM. 

The proposition that a disruption of normal dopaminergic neurotransmission may make a substantial contribution to the pathophysiology of FM was initially based on 3 key observations:

1. FM has been characterized as a “stress-related” disorder due to its frequent onset and apparent exacerbation of symptoms in the context of stressful events;

2. The experience of chronic stress results in disruption of dopaminergic activity in otherwise healthy organisms; and

3. Dopamine plays a dominant role in natural analgesia within multiple brain centers. 

The first hint in the medical literature of a connection between FM and dopamine was provided by Russell, et al, who in 1992 reported lower concentrations of metabolites of dopamine, norepinephrine, and serotonin … 

 

[Note: to read the free full text of this article by the originators of the Dopamine Theory of Fibromyalgia, click here.]

Source: The Journal of Rheumatology, Feb 2009. 36(2). PMID: 19208556, by Wood, PB, Holman AJ. Angler Biomedical Technologies, LLC, Jonestown, Texas; Pacific Rheumatology Research, Inc., Renton, Washington, USA. [E-mail:pwood@anglerbiomedical.com]

Courtesy ProHealth.com

http://www.prohealth.com/library/showarticle.cfm?libid=14320

F.D.A. TO PLACE NEW LIMITS ON PRESCRIPTIONS OF NARCOTICS

From the News Desk of Jeanne Hambleton

By GARDINER HARRIS -Published: February 9, 2009

WASHINGTON — Many doctors may lose their ability to prescribe 24 popular narcotics as part of a new effort to reduce the deaths and injuries that result from these medicines’ inappropriate use, federal drug officials announced Monday.

A new control program will result in further restrictions on the prescribing, dispensing and distribution of extended-release opioids like OxyContin, fentanyl patches, methadone tablets and some morphine tablets.

These products are classified as Schedule II narcotics and already are restricted according to rules jointly administered by the Food and Drug Administration and the Drug Enforcement Agency. But the current restrictions have failed to “fully meet the goals we want to achieve,” said Dr. John K. Jenkins, director of the F.D.A.’s new drug center.

“What we’re talking about is putting in place a program to try to ensure that physicians prescribing these products are properly trained in their safe use, and that only those physicians are prescribing those products,” Dr. Jenkins said in a news conference on Monday. “This is going to be a massive program.”

Hundreds of patients die and thousands are injured every year in the United States because they were inappropriately prescribed drugs like OxyContin or Duragesic or they took the medicines when they should not have or in ways that made the drugs dangerous. The agency has issued increasingly urgent warnings about the risks, but the toll has only worsened in recent years.

The blame for this is shared among doctors who prescribe poorly, patients who pay little attention to instructions or get access to the medicines inappropriately, and companies that have marketed their products illegally.

The F.D.A. this year will hold meetings with manufacturers, patient and consumer advocates, and the public to ask for advice on how to carry out the new control program, officials announced. The first meeting will be on March 3, and no immediate changes in access to the drugs is planned.

The 24 medicines under review had 21 million prescriptions written for them in 2007, to 3.7 million patients, Dr. Jenkins said. They are extremely effective in reducing pain, which many medical studies suggest is widely undertreated in patients suffering serious illness. (A complete list of the drugs is at www.fda.gov/cder.)

But many doctors prescribe the drugs far too cavalierly, Dr. Jenkins said. The F.D.A. has received reports of patients’ being prescribed such medicines to treat something as simple as a sprained ankle, he said. In such patients, the medicines can be dangerous.

Part of the problem is marketing. Several reports, for instance, have suggested that Purdue Pharma, the maker of OxyContin, helped fuel widespread abuse of the drug by aggressively promoting it to general practitioners not skilled in either pain treatment or in recognizing drug abuse.

The company has denied such a connection, but a holding company connected with Purdue and three top Purdue executives pleaded guilty last year to criminal charges that the company had misled doctors and patients by claiming for five years that OxyContin was less prone to abuse because it was a long-acting narcotic.

Doctors are also to blame. A common reason for disciplinary actions at state medical boards is the use of narcotics in patients who show clear signs of addiction or for whom the drugs are obviously inappropriate.

The F.D.A. generally avoids interfering with the practice of medicine because doctor behavior is governed by state medical boards. Instead, the agency usually tries to provide doctors with the best and most current information, and then allows them to decide how to use it.

Most of the drugs withdrawn over the last 20 years, however, were taken off the market because doctors continued to use the medicines in ways that the F.D.A. warned against.

For decades, the agency’s armory in these battles held only a popgun and a cannon — the popgun being the issuance of widely ignored warnings; the cannon being its ability to force a medicine’s withdrawal. But a law passed in 2007 gave the agency a new, intermediate weapon — Risk Evaluation and Mitigation Strategies. Known as REMS, these programs allow the agency to place strong restrictions on the distribution of certain drugs.

 

Courtesy New York Times (Money & Policy – Health Alert) Copyright  & All Rights Reserved 

(http://www.nytimes.com/2009/02/10/health/policy/10fda.html?_r=1&emc=tnt&tntemail1=y)

 

 

EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS

From the News Desk of Jeanne Hambleton

PRESS RELEASE -28.01.2009

 

The European Medicines Agency (EMEA) are to  have a consultation with a delegation from the European Network of Fibromyalgia Associations (ENFA) in an attempt to understand the need for medical treatments for fibromyalgia in Europe.

Brussels – Following an invitation by the EMEA, the European Network of Fibromyalgia Associations (ENFA) has agreed to attend a consultation meeting with EMEA, where ENFA representatives will share their knowledge and experiences related to the disease of Fibromyalgia that some 14 million Europeans are suffering from.  One of the biggest challenges that the patients have been facing is the lack of officially recognized medical treatment options in the European Union whereas 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 & Cypress.

 

The European Declaration 69/2008 on Fibromyalgia that has been recently adopted by the European Parliament, symbolizing the awareness raised around Fibromyalgia, calls for actions on specific issues from European Institutions to improve healthcare surrounding the disease, e.g. investment in research and provision of better diagnosis and treatment.  In addition, the European Health Commissioner Ms. Vassiliou’s remarks (E-6262/08EN) on the treatment of Fibromyalgia demonstrates encouraging willingness of the European Commission to address various concerns laid out in the Declaration on Fibromyalgia.

“We hope that this new drive on Fibromyalgia awareness will bring the end to the impasse of medical treatment for Fibromyalgia patients in the EU”, said Mr. Robert Boelhouwer, President of ENFA. 

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87%).  Fibromyalgia imposes large economic burdens on society as well as on affected individuals. The debilitating symptoms often result in lost work days, lost income and disability payments. Due to lack of awareness, on average patients in Europe see 3-4 physicians and take multiple medications over the course of several years before they receive a diagnosis of Fibromyalgia.

Mr. Boelhouwer said, “Increasing awareness of Fibromyalgia among healthcare professionals and patients will bring enormous benefits to patients, healthcare providers and the society in general by managing the burden of the disease.” he continues, “Having this in mind, ENFA welcomes the proactive role that both the European Parliament and the European Commission have taken up in raising the awareness of Fibromyalgia.”

 

 

Contact:  European Network of Fibromyalgia Associations (ENFA)

Mr. Robert Boelhouwer President of ENFA

contact@enfa-europe.eu  - www.enfa-europe.eu

 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.

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http://www.europarl.europa.eu/QP-WEB/application/home.do?language=EN