FM CONFERENCE AND PAMPERS 2011 ANOTHER BIG HIT

By Jeanne Hambleton ©

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Meanwhile take care and look after yourselves. Fibro hugs Jeanne

Back Pain – Medication and Addiction

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

Courtesy of WebMD.com

How can we balance the risk of drug abuse with the suffering caused by untreated back pain?

By R. Morgan Griffin – Reviewed by Brunilda Nazario, MD – WebMD Feature

People living with serious back pain have to sort through a lot of mixed messages about opioid — or narcotic — painkillers.

On the one hand, you have heard stories about the seeming epidemic of addiction to these drugs, like OxyContin, Percocet, and Vicodin. All those celebrities checking into rehab for painkiller addiction may give you the impression that the lure of these drugs is irresistible, that we are all just a few pills away from addiction.

But on the other hand, you might have heard that pain is chronically undertreated and many people are suffering needlessly. Which is true?

“They’re both true,” says Lynn Webster MD, medical director at the Lifetree Clinical Research and Pain Clinic in Salt Lake City. “In this country, we undertreat pain and we underutilize opioid painkillers. But we have also had a serious increase in the misuse and abuse of these drugs.”

This leaves many people with chronic back pain — and often their doctors — stuck in the middle. On the one hand, people are afraid of the risks of drug abuse and addiction that come with powerful painkillers. On the other, they are suffering from severe and debilitating pain and need some kind of help.

Opioid medicines can save lives. But they can destroy them too. What is an average person with severe back pain supposed to do?

Who Needs Opioid Painkillers?

Here is one piece of good news: most people with back pain do not need these powerful painkillers to begin with.

Many with back pain often just use non-addictive medications like Tylenol or nonsteroidal anti-inflammatory drugs (NSAIDs). Some NSAIDs are sold over the counter, like Motrin or Advil, and others are sold by prescription. Steroids can also be prescribed for back pain due to swelling and inflammation. These drugs do have some risks of their own, but the potential for addiction is not among them.

Even when powerful opioids like Percocet and Vicodin are necessary, many people only need them in the short term. After an acute back injury or surgery, many just use these drugs to ease the pain enough that they can start moving around and begin physical therapy.

But sometimes, the back pain lingers. Chronic back pain can sometimes develop as a result of arthritis or injuries that cannot be corrected surgically. In the small percentage of people with chronic and hard-to-treat back pain, a doctor may recommend long-term opioid therapy. Others may get opioid therapy if the side effects of other painkillers — like NSAIDs — are too risky.

While some patients and doctors swear by opioids as a treatment for severe chronic back pain, the evidence is not all that strong. One 2007 review in the Annals of Internal Medicine found that while opioids do help with short-term back pain, it is not clear that they help with chronic back pain. A 2007 Cochrane Review found that opioids may not work any better than an NSAID for chronic lower back pain.

How Big Is the Opioid Abuse Problem?

Prescription narcotic abuse is a serious issue, says Jim Zacny, PhD, a professor in the department of anesthesia and critical care at the University of Chicago. He points to the 2007 National Survey on Drug Use and Health. It found that as many as 5.2 million people reported using prescription opioids in the last month for non-medical reasons. That is more than double the number of people who used cocaine.

But many of the people illicitly using these drugs are not in pain. So the important question is this: how high is the risk of abuse for someone living with serious back pain?

There is some good news: the risks of actual addiction may be lower than assumed. “Among people with legitimate pain issues, it is a very small group who actually develop the disease of addiction,” says Webster.

Zacny agrees. “There is this myth out there that if you take an opiate, you automatically become enslaved to it,” he says. “That is not the truth at all.”

However, addiction is not the only issue. Webster observes that a much larger number of these people — perhaps 20%-30% — do wind up misusing or abusing the drug.

Opioid Addiction vs. Abuse

What is the distinction between drug addiction and drug abuse? Many people with real back pain are not addicted, but they begin to use their medication incorrectly. They might take too much, simply because the prescribed dose does not seem to be helping enough. Or they might use their medication to cope in other ways.

“People with pain sometimes take pain medicine inappropriately to feel a little high or improve their mood,” says Karen Miotto, MD, an addiction psychiatrist at the UCLA Neuropsychiatric Institute. “They might take one after a fight with a spouse or a hard day at work.”

Some people with chronic pain also have issues like anxiety and depression. They might start leaning on their pain medication to help them with these conditions too.

While we tend to focus on addiction, misuse and abuse can also be dangerous. Opioids are powerful drugs with real risks.

“In the last three to five years, we have seen a significant increase in the number of unintentional overdose deaths caused by prescription painkillers,” Webster tells WebMD. “At least half of them are in people who have legitimate pain problems with legitimate prescriptions.” Taking these drugs in ways your doctor did not intend simply is not safe.

“Our culture encourages the attitude that if one pill is good, two is better,” Webster says. “With opioids, that can be lethal.”

What Increases the Risk of Drug Addiction and Abuse?

The risks of drug addiction and abuse do not seem to be the same for everyone.

“It is not the pills alone that make an addiction,” Miotto says. She points out that addiction develops from a number of physiological, psychological, genetic, and social factors. A personal history of substance abuse also seems to increase the risk.

Mixing drugs also increases the risk of problems. “If you are taking your pain medicine along with other prescription drugs, you ratchet up the risk of addiction enormously,” says Miotto.

Webster says that pain itself is a risk factor: the greater the severity of the pain, the higher the risk of drug abuse and addiction. “After years of living with severe chronic pain, people will do anything to get rid of it,” he tells WebMD.

The Effects of Addiction and Abuse

Miotto says that drug addiction may seem to start innocently. A person might just occasionally call in a prescription early, or take a spouse’s medication as well as their own. “These behaviors can creep up on people slowly and then, all of a sudden, they have a physical dependency,” says Miotto.

The problem is that people who have a prescription drug addiction do not realize it. “Addiction is a disease of denial,” Miotto says. “It can take years before people realize what is happening to them.”

It pushes people to horrible extremes. Miotto knows one patient who eventually admitted that she pushed for surgery solely because she wanted the opioid painkillers she knew she would get afterward.

There is also another dimension to prescription drug abuse you should consider. Even if you do not abuse the opioid pills you have been prescribed, someone else could.

“A lot of the opioids that get used illicitly — especially by adolescents — come from the medicine cabinets of people who were prescribed the drug for legitimate pain,” says Webster. “People need to understand the potential harm that they can do to communities if these medications are not properly secured.”

Doctor vs. Patient

In part because of the stigma of prescription drug addiction, chronic back pain can sour even the best doctor-patient relationships. The patient can become frustrated by the doctor’s inability to cure his or her pain. Meanwhile, the doctor may become suspicious of someone who is always demanding refills of powerful opioids.

“Doctors are getting sued from both ends,” says Miotto. Some have been sued for providing opioid painkillers that lead to addiction; others get sued for not prescribing them to relieve debilitating pain.

People with a past history of addiction face the most skepticism from their doctors.

“I hate to say it, but when people walk in to the doctor and mention an addiction history, they may not be able to get these painkillers,” says Miotto. “The doctor may just not trust them.”

Alternatives to Opioids for Back Pain

Miotto says that some people with serious pain become too focused on opioids. They come to believe that opioids are the only thing that will help. But sometimes, you need to take a step back.

“If you keep increasing your dose of opioid pain medication but pain is still an 8 or 9 out of 10, it is time to shift gears and try something else,” says Miotto. She points out that at high doses, opioid painkillers can actually make your pain worse — a condition called opiate-induced hyperalgesia.

In addition to NSAIDs and other drug treatments, there are non-drug options for coping with chronic pain. Physical therapy can be invaluable. Miotto notes that treatments like massage, water therapy, and biofeedback can make a big difference with chronic pain. Unfortunately, it can be hard to get insurance to cover these sorts of treatments, Miotto says.

It is also important to treat any other conditions that might be exacerbating your pain. For instance, experts say that many people with chronic pain also struggle with depression and anxiety. “People who feel an increased amount of anxiety also feel an increased amount of pain,” says Webster. Even those who do not have diagnosed psychological condition can benefit from support groups or therapy.

Of course, some with chronic pain will bristle at that suggestion. They believe that it implies that the horrible pain they feel is “all in their heads.”

But Miotto says that is not the case at all.

“Severe, chronic pain makes life terribly difficult,” Miotto tells WebMD. “Therapy is just another helpful tool in getting people to cope better.”

Using Opioids Safely

Clearly, there is no simple advice when it comes to balancing the benefits and risks of opioids for back pain. But if you and your doctor decide to use these medicines, here are some tips for taking them safely.

Follow your doctor’s prescription precisely. Never double up a dose. Never take your medicine for any symptom besides pain.

Find a specialist. Dealing with chronic pain is complicated. Your regular doctor may not be comfortable handing out long-term prescriptions for opioids. So seek out a specialist in pain management or, better yet, a pain management center. This is essential for people who have a past history of substance abuse.

Do not mix opioids with other drugs. If you already use prescription or over-the counter drugs, supplements, or alternative medicines, make sure your doctor knows about every single one. Ask about the safety of using your opioid painkillers with alcohol.

Sign a pain agreement. These documents help build trust between a doctor and patient. A patient might promise to use the medication as instructed and, in some cases, agree to regular drug testing. In return, the doctor agrees to prescribe opioid pain relievers as part of the treatment plan.

Take a screener. Experts now recommend that doctors use screeners — a short series of questions — that help them identify people who might be at higher risk of opioid abuse. Like pain agreements, they help build trust between patients and doctors.

Ask about alternatives. Talk to your doctor about other ways you could reduce your back pain. Might non-opioid medicines help? What about surgery? Or non-traditional treatments like massage or relaxation?

Get support. Consider seeing a therapist or joining a support group for people with back pain.

Keep your medication in a safe place. Remember that it is not only the person in pain who is at risk of abusing opioids. So be careful. Do not keep your medicine where other people — your children, grandchildren, friends, or neighbors — can get to it.

Finally, the most important way to assure that you are using your medicine safely is to have a trusting and open relationship with your doctor.

“Anyone with chronic pain needs to find a physician who is compassionate and understanding,” says Webster. Trust between a doctor and patient is the basis of any good pain management.

(©2005-2009 WebMD, LLC. All rights reserved.

http://www.webmd.com/back-pain/features/back-pain-medication-addiction?ecd=wnl_cbp_052109&em=amVhbm5laGFtYmxldG9uQG1hYy5jb20=)

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Chronic Opioid Therapy Guidelines Offer Direction for Physicians

From the FMS Global News Desk of Jeanne Hambleton

Courtesy of Fibromyalgia Network – February 2009

While patients are rightfully concerned about not receiving adequate pain relief, physicians harbor fears about drug abuse, safety issues, and government oversight. New clinical guidelines for the use of chronic opioid therapy in chronic non-cancer pain patients, developed by consensus of the American Pain Society and the American Academy of Pain Medicine, may ease both patient and physician concerns.

The guidelines, published in the February issue of the Journal of Pain, offer a roadmap for physicians on how to safely prescribe opioids to patients with moderate to severe pain.* The authors specifically state that their report applies to patients with “chronic non-cancer pain conditions, including common conditions such as back pain, osteoarthritis, fibromyalgia, and headache.”

Throughout the guidelines, physicians are urged to evaluate their patients’ pain and function on a regular basis. And, if doctors are worried that a patient is abusing or misusing the prescribed opioid, they may need to reduce the time between scheduled office visits. In addition, physicians are encouraged to look at all of the available options for treating patients’ chronic pain, including the use of opioids, and it is emphasized that this class of medications will seldom provide sufficient pain control. This means that patients placed on opioids will likely need to be prescribed medications from other drug classes as well as non-drug therapies. And, physicians who do not have the skill-set to prescribe opioids need to coordinate their patients’ care with another doctor who is experienced in providing this therapy.

The American Pain Society emphasized the following three points to all its members this month:

The guidelines are comprehensive and evidenced-based to assist physicians in managing chronic opioid therapy, according to the American Pain Society President Charles Inturrisi, Ph.D

“Regular monitoring of chronic opioid therapy patients is warranted because the therapeutic benefits of these medications are not static and can be affected by changes in the underlying pain condition, coexisting disease, or in psychological or social circumstances,” said Gilbert J. Fanciullo, M.D., director of the division of pain and palliative care at Dartmouth Hitchcock Medical Center.

Cochair Perry Fine, M.D., professor of anesthesiology at the University of Utah Medical Center, added that doctors do not have to solely rely upon patient self reports. Pill counts, urine drug screening, family member or caregiver interviews, and prescription monitoring data may all be used to check for possible abuse or other opioid-related problems.

The message is clear that under most circumstances, there are reasonable ways for physicians to prescribe chronic opioid therapy for their patients in pain while emphasizing safety issues and minimizing side effects or the potential for drug misuse. The guidelines offer physicians 25 recommendations with detailed explanations on how to follow them—all to help doctors prescribe opioids to their chronic pain patients in a responsible fashion. In addition to the key points already made, here are other highlights from the published guidelines:

Clinicians may consider a trial of chronic opioid therapy (COT) for moderate to severe pain that is having an adverse impact on a patient’s function or quality of life as long as the therapeutic benefits outweigh the risks (abuse, misuse and addiction). Three different patient screening tools (questionnaires that are easy to administer) are included with the guidelines to help doctors assess potential risks associated with COT for a given patient (the SOAPP, the ORT, and the DIRE).

Before initiating a trial of COT, physicians should provide their patients with informed consent, which alerts patients to all of the potential risks associated with taking opioids. After informed consent, doctors should discuss with their patients a COT management plan that outlines the goals of therapy, expectations, monitoring requirements, etc. A sample consent form and management plan are included in the guideline.

Initial treatment with an opioid should be regarded as a therapeutic trial to determine if COT is effective. If the first opioid does not work or produces adverse side effects, other types of opioids may be tried, but patients need to keep in mind that opioids are prescribed on a trial basis.

Physicians should anticipate, identify, and track common opioid-associated side effects. Constipation is the most frequent problem, and unfortunately it does not go away or get better with continued use of the medication. With this in mind, doctors should recommend stool softeners or increased fiber intake when issuing patients an opioid prescription. Nausea or vomiting may occur but tends to diminish over a few days. If it lasts longer, doctors can prescribe a medication to treat this side effect. Sedation and clouded thinking usually goes away with continued opioid use, while reduction in sex hormones may appear down the road with COT. If a patient begins to experience a decrease in libido, sex hormones can be checked and supplemented if necessary. Other side effects may also occur, so patients and physicians need to be on the lookout for them.

Chronic pain is often a complex condition and physicians who prescribe COT should routinely promote other therapies, such as psychotherapy (pain can be awful to cope with), physical and occupational therapies for restoring function, and other non-drug approaches in addition to prescribing other non-opioid medications. The purpose of this recommendation is to treat the whole person and improve the odds that a patient with chronic pain will achieve a more fulfilling life.

Doctors need to counsel patients prior to starting COT and continue until a stable dose is reached or if the dose is later increased as the patients’ cognitive skills may be impaired for a short period of time. If clouded thought processes do occur, driving should temporarily be avoided … so patients might want to start an opioid on a weekend when they do not have to drive. After a stable dose is reached, there is no evidence to suggest that patients on COT should be restricted from driving or engaging in most work activities.

The opioid guidelines give your doctor the “how to” advice for prescribing opioids, including sample copies of patient screening questionnaires, a consent form, management plan, and full details on how to responsibly prescribe opioids. However, they also assume that the prescribing physician is already knowledgeable about issues concerning this class of medications (i.e., the guidelines cannot possibly convert a novice into an expert on COT). Neither the patient nor physician should feel awkward about the consent and management forms, or random urine tests. Doctors who follow these guidelines should be better equipped to implement opioid therapies for their chronic pain patients (such as fibromyalgia) in a safe manner.

* Chou R, Fanciullo GJ, Fine PG, et al. J Pain 10(2):113-130, 2009.

Calling the Kettle Black
… editorial comment

By Kristin Thorson, Editor, Fibromyalgia Network

Posted: February 27, 2009

If your newspaper ran the February 8th Associated Press article “Drugmakers’ push boosts ‘murky’ ailment,” implying that the drug industry has fabricated fibromyalgia in an effort to churn a profit, you have every right to be furious!1 Controversy sells, and that was what the reporter, Matthew Perrone banked on. Perrone sought out Fred Wolfe, M.D., of Wichita, KS, because he knew from the January 14, 2008 front-page article in the New York Times that Wolfe had a track record for trashing patients with fibromyalgia and big, bad pharma as well. It is ironic, however, that Wolfe would make derogatory statements about the drug industry when he is heavily funded by six drug companies himself.

Wolfe is the director (and paid employee) of the National Data Bank for Rheumatic Diseases, a nonprofit registered as The Arthritis Research Center Foundation, Inc. Its mission is “conducting ongoing research to improve conditions for people with arthritis, fibromyalgia, lupus and other conditions.” He openly declares in his research papers, in which he is testing the effectiveness and safety of drugs for rheumatoid arthritis, that he is funded by Centocor, Aventis, Pfizer, Bristol-Myers Squibb, Amgen, and Abbott. So perhaps Wolfe’s dislike is not so much for the drug industry as it seems for fibromyalgia.

Prompted by mixed reports on increased cancer rates in people with rheumatoid arthritis (RA), Wolfe conducted an observational study on the incidence of cancer in RA patients who took the tumor necrosis factor (TNF) blocking agents Enbrel (etanercept) or Remicade (infliximab).2 His findings were derived from information in the National Data Bank (NDB) and per the NDB’s agreement with Centocor, the maker of Remicade, the drug company was allowed to review Wolfe’s manuscript prior to publication. But Wolfe does not just cater to Centocor. His NDB organization has similar contractual agreements with Bristol-Myers Squibb and Sanofi-Aventis.

Wolfe’s study contradicted earlier reports of increased cancer risks for RA patients taking Enbrel or Remicade. It also confirmed that TNF blocking drugs are linked to skin cancers, including potentially deadly melanomas. Instead of using his findings to alert the medical community that these drugs may pose a health hazard, Wolfe went on record with WebMD as stating: “The drugs, at this moment, do not seem to add any risk except for skin cancer and melanoma. This is a small overall risk and I do not think people should be concerned.” He also added that the risks did not outweigh the benefit for patients who truly need the new drugs.3

While there is no argument that people with RA deserve effective therapies, do you not think it is odd that Wolfe is the one pushing drugs on RA patients while in the recent AP article he bashes the drug industry for fabricating fibromyalgia to boost their sales? Yet he is quoted in the AP article as saying, “I think the purpose of most pharmaceutical company efforts is to do a little disease-mongering and to have people use their drugs.” Further in the article he says, “The underlying purpose here is really marketing, and they do that by sponsoring symposia and hiring physicians to give lectures and prepare materials.” Wolfe’s negative sentiments about fibromyalgia appear clear in a February 2009 report in which he writes, “Recently, regulatory authorities have approved treatments for fibromyalgia, offering some de facto support, although no proof, for fibromyalgia as a distinct disorder.”4 However, there was a time when RA had no “proof,” but that does not mean that the patients who suffered with it years ago did not have a real disease.

It is true that Wolfe was the lead author for the 1990 American College of Rheumatology criteria for fibromyalgia, but that was 18 years ago and much has changed.5 In 1990, the number of rheumatologists who were skeptical about the realness of fibromyalgia far outnumbered the believers. I should know, because I hosted an information booth on fibromyalgia at the annual rheumatology meetings throughout the 1990s, and in the early years I can attest to the ugly controversies surrounding this disease.

In 1994, Wolfe orchestrated a consensus conference (paid by the insurance industry) whose primary goal was to trivialize fibromyalgia and restrict patient care.6 Why he wanted to turn his back on fibromyalgia is still unknown, but his efforts failed. During the past eight years, the rheumatologists have rallied to increase the legitimacy of fibromyalgia by developing guidelines for improving the quality of research and for testing therapies to treat this patient population. Today, Wolfe and many of his colleagues do not see eye to eye when it comes to issues concerning fibromyalgia. At age 74, he appears to get his jollies by trash-talking fibromyalgia to headline-mongering reporters.

For all of you who were subjected to the AP story, I hope my comments help you understand the nonsensical nature of the article and that you can ignore any future reports that happen to quote Wolfe. I also want to make three additional points about the AP article:

Although Wolfe’s own nonprofit takes money from the drug companies, this does not mean that all nonprofits and organizations that help patients must do the same to stay afloat. Fibromyalgia Network and its sister organization, the American Fibromyalgia Syndrome Association (AFSA), have never received money from the pharmaceutical industry or other companies that could bias the way these two organizations operate.

Daniel Clauw, M.D., of the University of Michigan, did receive a small grant award from the National Fibromyalgia Research Association (NFRA) in Salem, OR, but the NFRA should not be confused with the National Fibromyalgia Association (NFA). NFRA does not receive money from the drugmakers.

The article implies that Clauw’s brain imaging research, which has documented many brain processing abnormalities over the past ten years, was tainted by drug money. That simply is not true because the funding for these studies came from government grants based on the merits of his proposals. “Most of us conducting research in the field of fibromyalgia were here ten years before the drug industry even took notice of this disease,” Clauw points out.

Perrone M. Associated Press © hosted by Google, Feb 8, 2009; (AP article).
Wolfe F, Michaud K. Arthritis Rheum 56(9):2886-2895, 2007.
DeNoon DJ. WebMD Health News Aug. 29, 2007; (WebMD article).
Wolfe F, Michaud K. J Rheumatol First Release Feb. 15, 2009; doi:10.3899/jrheum.080897.
Wolfe F, et al. Arthritis Rheum 33(2):160-72, 1990.
Wolfe F. J Rheumatol 23(3):534-9, 1996.

Kaufmann I, et al. Rheumatol Int [epub ahead of print] December 4, 2008.
Kaufmann I, et al. Clin Immunol 125:103-111, 2007.

(http://www.fmnetnews.com/basics-news.php#opioid)
All information on this site is copyrighted by
Fibromyalgia Network, P.O. Box 31750, Tucson, AZ 85751 (800) 853-2929.
This site is provided for informational purposes only. To remain unbiased, we do not accept endorsements, advertisements, or pharmaceutical industry grants. Patients should always consult their physician for medical advice and treatment.

Prescriptions for opioids jump following co-proxamol ban

From the FMS Global News Desk of Jeanne Hambleton

Courtesy PulseToday.co.uk.

By Lilian Anekwe – 17 March 2009

Opioid prescriptions have jumped during the withdrawal of co-proxamol, with GPs apparently struggling to find adequate means of pain control for some patients.

Prescriptions for morphine have risen by more than 40% and those for tramadol by two-thirds since co-proxamol use was first reduced in anticipation of the drug’s withdrawal.

An analysis for the Medicines and Healthcare Products Regulatory Agency, obtained by Pulse under the Freedom of Information Act, reveals prescriptions for co-proxamol plummeted from 835 million in 2004 – the year prior to legislation on its withdrawal – to 121 million in 2007.

But over the same period, opiod prescriptions overall rose by 40%. Prescriptions for morphine rose by 44%, from 757,000 in 2004 to 1,093,000 in 2007, and tramadol prescriptions increased by 61%, from 3,130,000 to 5,036,000.

Co-proxamol was removed from the British National Formulary on 1 January last year, but the NHS Information Centre analysis shows GPs continued to prescribe co-proxamol to approximately 150,000 patients in England on a named-patient basis.

The MHRA downplayed the impact of the withdrawal and said the ageing population was to blame for increasing demand for analgesics. But the agency’s pharmacovigilance group concluded: ‘Opioids, especially tramadol, have followed an increasing trend and some patients may have been switched to this class of analgesic.’

Dr Adam Bajkowski, a GP in Wigan and president of the primary care rheumatology society, said the analysis suggested the MHRA’s argument that full-strength paracetamol was as effective as co-proxamol was flawed: ‘If GPs are having to switch patients to a stronger opioid, then it suggests the MHRA’s reasoning wasn’t really true.’

READERS’ COMMENTS
MHRA | 20 Mar 09
Your report on analgesic prescribing following the withdrawal of co-proxamol presented a distorted picture of the relevant information.

The withdrawal of co-proxamol in the UK has saved approximately 300 lives per year and there is no evidence that the death rate due to other analgesics is increasing. Prior to the withdrawal of co-proxamol, the MHRA issued guidance on pain management from the former Committee on Safety of Medicines (now known as the Commission on Human Medicines) to help doctors find the best options for individual patients, setting out a graduated range of possible therapeutic interventions.

Opioid prescriptions have not “jumped” during the three-year phased withdrawal of co-proxamol, as suggested in the article, and we do not have evidence that patients are being switched from co-proxamol to other opioids. Even though opioid prescriptions have increased steadily over the last 5 years they still make up a very small proportion of the overall prescriptions for painkillers.

There were increases in the numbers of prescriptions of paracetamol and of co-codamol around the time of the co-proxamol withdrawal. These increases were sufficiently large to suggest that patients may have been switched from co-proxamol. A research project to look at the analgesics that patients have been switched to will be started shortly.

Pulse, CMP Medica. All rights reserved.
(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122142&c=2)

EDITOR’S NOTE As someone who suffers with pain 24/7 from fibromyalgia, I managed very nicely with co-proxamol and some pain killing gel for the aches and pains until the withdrawal on December 31 2007. We were promised that those who really could not manage without it would be prescribed on a named patient basis. The Government and the Ministers failed to mention the under handed action of making co-proxamol an ‘illegal’ drug.

After I fought my own personal battle to reverse the withdrawal and tried to become a named patient, all unsuccessfully, I tried the alternatives which aggravated the old IBS. So I am left with nothing but pain. My GP will not prescribe co-proxamol for fear of litigation and I do not want to fill my body with drugs where the side effects for me are unbearable.

Why was co-proxamol not listed as a controlled drug. Those in need could then have received the pain relief they need so badly.

I imagine with the increase in these alternative medications mentioned in the article above, the cost of pain treatments has soared against what was a relatively cheap pain killer – £2.79 for 100 tablets – before the Government got involved. Is it any wonder the NHS is always short of funds and this is just a small example of failure to see the whole picture.

Why did GPs stop prescribing co-proxamol read this article from Pulse just after the withdrawal on 17 January 2008.

PCTs threaten GPs over co-proxamol

By Nigel Praities – 17 Jan 2008

PCTs are piling pressure on GPs to switch patients from co-proxamol to alternative medication, after the reimbursement price of the drug soared with loss of its licence.

In December 2007, co-proxamol was listed as Category M medicine with a reimbursement price of £2.79 for 100 tablets. From January 2008 it has been available as an unlicensed drug, but has been changed to Category C with a reimbursement price of £20.36 for 100 tablets – a sevenfold increase in price.

The price hike has galvanised trusts into action, with several already having contacted GPs to urge them to prescribe alternative analgesics, just weeks into the new year.

West Essex, Islington and West Hertfordshire PCTs are all planning, or have already, written to GPs about the price increase.

Norfolk PCT is planning a series of meetings and individual visits to reinforce the status and cost of co-proxamol to GPs. Other PCTs have indicated to Pulse that they are monitoring the situation in their area before taking action.

Dr Iain Gilchrist, a GP in Essex and treasurer of the Primary Care Rheumatology Society, who has taken all his patients on co-proxamol off the drug, said the price increase would put even more pressure on those GPs still prescribing it.

‘No doubt with GPs who still have patients on co-proxamol, the prescribing advisors will be wanting to have a little word in their ear. There is nothing like a price hike to concentrate the mind,’ Dr Gilchrist said.

Dr Gilchrist received an email in early January from a prescribing adviser at West Essex PCT, which said the price of co-proxamol had ‘rocketed’ and is a ‘very expensive option, as well as being unlicensed.’

PCTs are worried about the cost implications as many practices have struggled to find alternatives for many of their patients on the drug. A Pulse investigation in December revealed as many as 60,000 patients may still be on co-proxamol and 60% of practices reported that a hard core of their patients continued to take it.

The latest pressure from PCTs adds to the medico-legal headache surrounding co-proxamol. Patients can still be prescribed the drug on a named-patient basis, although GPs assume legal liability if they continue to prescribe the unlicensed drug.

TROUBLED WITHDRAWAL OF CO-PROXAMOL

Jan 2005 – MHRA announces withdrawal of co-proxamol
Oct 2006 – A Pulse survey reveals 70% of GPs demand the MHRA review its decision
Jan 2007 – MPs demand u-turn on withdrawal at special House of Commons debate
Oct 2007 – 60,000 patients remain on co-proxamol
Dec 2007 – Final withdrawal of co-proxamol
Jan 2008 – PCTs panic as price of co-proxamol soars

(http://www.pulsetoday.co.uk/story.asp?storycode=4116799)

On 21 September 2006

One GP asked, “Is it time for a rethink on the co-proxamol ban?”

Co-proxamol is so accessible because it is the most useful analgesic in general practice and so a lot has been prescribed.

The academics who recommended banning it have made a kneejerk reaction without listening to those of us facing the realities at the coalface of medicine. All the alternatives, including paracetemol itself, are more toxic than co- proxamol. Tablet for tablet, they all have more paracetemol than co-proxamol. Dextropropoxyphene is not toxic to the liver. Paracetemol, co- codamol and co-dydramol are all readily available, more toxic and more expensive than co-proxamol, tramadol and so on.

Prescriptions will increase. More bleeds, more deaths and more drug interactions will occur. There will be more prescriptions for laxatives, more bowel obstructions, more hospitalisations. Drug costs will go up substantially and more successful suicides will occur.

I plead – think again. What do other GPs think?

(http://www.pulsetoday.co.uk/story.asp?storycode=4010484)

EDITOR’S NOTE: Just this week a member of my own family haas been hospitalised for 36 hours. The hospital doctors blamed the medication (pain killers) prescribed for broken bones. He was lucky to be diagnosed quickly or the complication might have been fatal. Afraid to take more medication he is living with unbearable pain. If he had been taking co-proxamol I doubt this would have happened. I literally ‘lived’ on co-proxamol for almost five months when I broke my wrist and my pelvic bone in three places – without any side effects.

So what do you think? Are you ready to press your MP to ask questions in the House to have co-proxamol licensed as a controlled drug?

Many Chronic Patients Cannot Afford Care

From the FMS Global News Desk of Jeanne Hambleton

By Kristina Fiore, Staff Writer, MedPage Today
Published: March 20, 2009

WASHINGTON, March 20 — One patient in four with a chronic condition has postponed healthcare or filling a prescription in the past year because he cannot afford it, researchers here said.

Latinos (43%) and middle-age women (39%) are among those more likely to report delaying care, according to a survey by the National Council on Aging.

Although the poor are more likely to report delaying care, 22% of patients with household incomes above $50,000 have done so, according to the survey.

Those who have put postponed treatment are also more likely to be in frequent physical pain (45% versus 28% of those who have not delayed care), to be fatigued (49% versus 28%), and to be stressed (40% versus 17%).

The survey — conducted between Jan. 5 and Jan. 30, 2009 among 1,109 adults ages 44 and up with at least one chronic condition — is a snapshot of patients living with chronic conditions such as heart disease, arthritis, hypertension, and diabetes.

The survey included an oversample of those 65 and older (n=594 total), as well as an oversample of Latinos (n=142 total). The margin of sampling error for the total results is +2.9 percentage points.

Many report dissatisfaction with the care they receive. Some 44% wish their physician had more time to spend talking to them about their condition, and 45% said they never get referrals to important chronic care resources such as counselors and health educators.

Nearly a third report leaving their physician’s office confused about what they should do regarding their care, and many say their providers aren’t doing anything to improve their care.

About 57% said their physicians have not asked whether they have help at home to manage their problems, and 45% said they rarely or never receive referrals to support services such as classes, counselors, or health educators.

Many patients are living with several chronic diseases: 68% report having two or more conditions and 20% have four or more.

Those with one chronic condition are healthier, have higher incomes, and have more support at home; while those with multiple conditions tend to have low incomes and less support.

Half of those with chronic conditions are unhappy or depressed at least occasionally because of their health problems, and 32% report having to cut back on social activities. A little more than a quarter report having to miss work.

Almost 40% of patients said they do not have the money to begin improving their health, a percentage that is particularly high among Latinos (63%), African Americans (58%), the poor (65%) and those with four or more chronic conditions (59%).

However, 70% said learning how to exercise or eat better in ways that work with their limitations would help them cope, and 68% say getting advice from others with similar conditions would help as well.

Fifty-six percent of Americans 44 and older with chronic conditions are Internet users — and of these, 63% say they would be interested in going to Web sites sponsored by health organizations to get information and support.

Even 27% of those who rarely or never use the Internet say they would be interested in going to Web sites for information and support.

Nancy Whitelaw, senior vice president of the Center for Health Aging at the National Council on Aging, said the report highlights the need to reform the healthcare system in order to support patients with chronic conditions.

“We encourage physicians not to take on the responsibility themselves, but to build a mechanism to refer patients to community-based health education programs that are effective,” Whitelaw said.

She added that physicians can help connect patients to such programs via a community agency that deals with the aging.

EDITOR’S NOTE: If it is happening in the USA, it must be happening here in the UK. This must also apply to visits to the opticians and the dentist. We can no longer afford luxuries, so health must be the next concern to be hit by the credit crunch. The offending financiers have a lot to answer for….Now is the time to make all prescriptions free before the UK falls apart at the seams. There is an old saying which tells us that health and happiness are more important than wealth. Are you listening Mr.B? You have helped everyone else – you can at least do this for the people Mr.B.! Write to your MP and put some pressure on the Government! JH

The survey was funded by the Atlantic Philanthropies and the California HealthCare Foundation.

Primary source: National Council on Aging
Source reference: “Reforming healthcare: American speak out about chronic conditions and the pursuit of healthier lives” NCOA 2009.

(http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/13358?utm_source=mSpoke&utm_medium=email&utm_campaign=DailyHeadlines&utm_content=GroupB&userid=206539&impressionId=1237776625926)

Those Who Have Chronic Pain May Need to Assess Vitamin D Status

From the FMS news Desk of Jeanne Hambleton

Courtesy Newswire and Mayo Clinic (source)

Newswise — Mayo Clinic research shows a correlation between inadequate vitamin D levels and the amount of narcotic medication taken by patients who have chronic pain. This correlation is an important finding as researchers discover new ways to treat chronic pain. According to the Centers for Disease Control and Prevention, chronic pain is the leading cause of disability in the United States. These patients often end up taking narcotic-type pain medication such as morphine, fentanyl or oxycodone.

This study found that patients who required narcotic pain medication, and who also had inadequate levels of vitamin D, were taking much higher doses of pain medication — nearly twice as much — as those who had adequate levels. Similarly, these patients self-reported worse physical functioning and worse overall health perception. In addition, a correlation was noted between increasing body mass index (a measure of obesity) and decreasing levels of vitamin D. Study results were published in a recent edition of Pain Medicine.

“This is an important finding as we continue to investigate the causes of chronic pain,” says Michael Turner, M.D., a physical medicine and rehabilitation physician at Mayo Clinic and lead author of the study.

“Vitamin D is known to promote both bone and muscle strength. Conversely, deficiency is an under-recognized source of diffuse pain and impaired neuromuscular functioning. By recognizing it, physicians can significantly improve their patients’ pain, function and quality of life,” he said.

Researchers retrospectively studied 267 chronic pain patients admitted to the Mayo Comprehensive Pain Rehabilitation Center in Rochester from February to December 2006. Vitamin D levels at the time of admission were compared to other parameters such as the amount and duration of narcotic pain medication usage; self-reported levels of pain, emotional distress, physical functioning and health perception; and demographic information such as gender, age, diagnosis and body mass index.

Further research should document the effects of correcting deficient levels among these patients, researchers recommend.

This study has important implications for both chronic pain patients and physicians. “Though preliminary, these results suggest that patients who suffer from chronic, diffuse pain and are on narcotics should consider getting their vitamin D levels checked. Inadequate levels may play a role in creating or sustaining their pain,” says Dr. Turner.

“Physicians who care for patients with chronic, diffuse pain that seems musculoskeletal — and involves many areas of tenderness to palpation — should strongly consider checking a vitamin D level,” he says. “For example, many patients who have been labeled with fibromyalgia are, in fact, suffering from symptomatic vitamin D inadequacy. Vigilance is especially required when risk factors are present such as obesity, darker pigmented skin or limited exposure to sunlight.”

Assessment and treatment are relatively simple and inexpensive. Levels can be assessed by a simple blood test (25-hydroxyvitamin D [25(OH)D]). Under the guidance of a physician, an appropriate repletion regimen can then be devised. Because it is a natural substance and not a drug, vitamin D is readily available and inexpensive.

In addition to the benefits of strong muscles and bones, emerging research demonstrates that vitamin D plays important roles in the immune system, helps fight inflammation and helps fights certain types of cancer.

Other study authors from Mayo Clinic include W. Michael Hooten, M.D., Department of Anesthesiology; John Schmidt, Ph.D., Department of Anesthesiology Research; and Jennifer Kerkvliet, Cynthia O. Townsend, Ph.D., and Barbara Bruce, Ph.D., all from the Pain Rehabilitation Center.

Mayo Clinic is the first and largest integrated, not-for-profit group practice in the world. Doctors from every medical specialty work together to care for patients, joined by common systems and a philosophy of “the needs of the patient come first.”

More than 3,300 physicians, scientists and researchers and 46,000 allied health staff work at Mayo Clinic, which has sites in Rochester, Minn., Jacksonville, Fla., and Scottsdale/Phoenix, Ariz. Collectively, the three locations treat more than half a million people each year.

Chili Pepper Compound Can Bring Pain Relief

From the FMS News Desk of Jeanne Hambleton

COURTESY usnews.com Health Day – Monday March 16

Capsaicin works on nerves to ease joint discomfort, scientists say

(HealthDay News) – University of Buffalo scientists say they have found how capsaicin, the compound that gives chili peppers their fiery flavor, also works to relieve joint and muscle pain.

In a study appearing Tuesday in the journal PLoS Biology, researchers found that capsaicin flips on nerve-ending receptors that sense both pain and heat.

“The receptor acts like a gate to the neurons. When stimulated it opens, letting outside calcium enter the cells until the receptor shuts down, a process called desensitization,” study leader Feng Qin, an associate professor at the university’s School of Medicine and Biomedical Sciences, said in a news release issued by the institution.
The flood of calcium changes the levels at which the receptors detect pain signal. “In other words, the receptor had not desensitized per se, but its responsiveness range was shifted,” Qin said.

While capsaicin has been used in folk medicines for generations, knowing how it works in relation to PIP2 may lead to developing other analgesics that ease pain without first causing irritation on their own, the team said.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about capsaicin .
(http://health.usnews.com/articles/health/healthday/2009/02/25/chili-pepper-compound-can-bring-pain-relief.html)

Finding Effective Treatment for Your Chronic Pain

Studies are underway to look into the effectiveness of alternative ways of delivering pain medications

By January W. Payne

Chronic pain is a problem that—when healthcare, lost income, and lost productivity are taken into account—is estimated to cost about $100 billion in the United States each year. More than a quarter of Americans age 20 or older, or about 76.5 million people, say they’ve experienced pain that lasted longer than 24 hours, according to the American Pain Foundation—and 42 percent have endured pain lasting longer than a year. Nobody keeps good long-term national stats, but if North Carolina’s experience is any guide, the numbers are on the rise.

A just-published study in the Archives of Internal Medicine found that the prevalence of chronic low-back pain in the state more than doubled, to 10.2 percent, between 1992 and 2006. Paul J. Christo, assistant professor and director of the Multidisciplinary Pain Fellowship at the Johns Hopkins University School of Medicine, calls undiagnosed, untreated, or undertreated pain a “significant public-health problem.”

Chronic pain encompasses a multitude of ills, from back pain, headaches, neck pain, and conditions like arthritis and fibromyalgia to pain that develops as a result of cancer treatment and lingers for months or even years. Low-back pain, migraines, and joint pain (particularly in the knees) are among the most common complaints, according to the National Center for Health Statistics. knee pains,

Still, while it may have different origins, chronic pain “can be viewed as an illness in its own right because of its effect on function,” says Russell Portenoy, chairman of the department of pain medicine and palliative care at Beth Israel Medical Center in New York City.

Studies have shown that some people with chronic pain have brain abnormalities, though the connection between that and pain is not well understood. One recent study, for instance, showed that women with fibromyalgia had blood flow abnormalities in a region of the brain known to discriminate the intensity of pain that were not observed on CT scans done in healthy women.

Another study showed that chronic pain may harm the wiring of the brain, as demonstrated on functional MRIs. Chronic pain may also be caused by a problem with the “fight or flight” response, Christo says. “We believe that in certain pain conditions . . . the stress response can worsen pain because that stress response releases a chemical called noroepinephrine. . . . And noroepinephrine binds to certain receptors in the body that trigger pain.”

“Pain is essentially an alarm system that is designed to grab your attention, and when it works properly, it signals harm or healing,” says Scott Fishman, professor and chief of the division of pain medicine at the University of California-Davis School of Medicine. When the body heals, the pain should dissipate, but “the nervous system can become injured,” Fishman says. “That’s when the symptom of pain becomes the disease of chronic pain.”

Finding relief can take quite an effort, since the causes are often not immediately clear and there is not a sure-fire treatment. The battle can require a team of experts, so the multidisciplinary pain clinics or pain management programs that have sprouted up at hospitals, rehab centers, and in free-standing facilities over the past decade or so may be of particular help.

The clinics provide an all-in-one setting for care that, in addition to pain management specialists who may be trained as neurologists, psychiatrists, physiatrists, or anesthesiologists, may include physical therapists, family and vocational counselors, and massage therapists, for example. (The American Chronic Pain Association offers advice on selecting a pain clinic.)

After a full assessment, tailored treatment may include medications from anti-inflammatory drugs to antidepressants to opioids. Since commonly prescribed opioid medications such as oxycodone, fentanyl, and morphine can cause addiction, the American Pain Society and the American Academy of Pain Medicine have just released the first comprehensive clinical practice guidelines to help physicians make treatment decisions.

The guidelines, published in the Journal of Pain, suggest that physicians regularly assess people taking long-term opioids and do periodic drug screenings of patients who are considered to be at risk for abuse or addiction. Meanwhile, the Food and Drug Administration announced plans this month to require the brand-name and generic makers of morphine, oxycodone, fentanyl, and methadone to assist with a plan to reduce the risks associated with the drugs.

Other treatment options include injections of steroids or other medications, nerve blocks that interrupt pain signals, physical therapy, alternative therapies, and psychological interventions such as cognitive behavioral therapy, biofeedback, and guided imagery and other relaxation techniques. Acupuncture, which some people with pain find helpful, is thought to ease pain by raising the level of endorphins in the body, Christo says. “Endorphins are sort of like opioids. . . . They are natural pain relievers,” he says.

“They are released when the body experiences pain—when you sprain your ankle, cut your finger, in response to injury.” Still, research offers conflicting conclusions about the pain-relieving effects of acupuncture. A review of 13 studies published last month in British Medical Journal found that acupuncture offered only a small level of pain relief for people with low-back pain, migraines, knee osteoarthritis, and postoperative pain.

Jennifer Phillips, 41, of Providence Forge, Va., saw 54 doctors before the fibromyalgia that caused her pain was diagnosed in 1996. Finally, after seeing an internist whose nurse had fibromyalgia, she found a routine that works for her: a combination of proper sleep (achieved, in part, using the tricylic antidepressant amitriptyline), daily supplements of vitamins, magnesium, and potassium, plenty of water, and a low-carb diet.

The search is on for greater relief. Studies are underway to look into the safety and effectiveness of alternative ways of delivering pain medications, such as an inhaled form of fentanyl that would get the drug into the patient’s system more quickly. For older people who have fractures of the spine, vertebroplasty and kyphotlasty—two minimally invasive techniques in which bone cement is injected into the collapsed bone in the spine—can result in “significant pain reduction,”

Christo says. In the ongoing debate over how best to handle back pain, a study just published in the Journal of the American Academy of Orthopaedic Surgeons finds that the most effective way to treat most degenerative disc disease cases is to combine physical therapy and anti-inflammatory medications, rather than having surgery.
While it may seem counterintuitive, people with chronic pain should try to get exercise. Experts say it is important to keep moving, both for the usual cardiovascular reasons and in order to avoid muscle atrophy. A supervised, individually designed exercise program, incorporating stretching or strengthening, may improve pain and functioning in people with chronic low-back pain, according to a 2005 study published in Annals of Internal Medicine.

A physical therapist or personal trainer can offer the necessary advice. In fact, staying in bed for more than a day or two can make back pain worse, according to the National Library of Medicine’s MedlinePlus.

Jeff Nance of Indianapolis, whose chronic pain is caused by degenerative disc disease and spinal stenosis of his lower back, recalls that he barely wanted to leave his home three years ago. Then he discovered the Meridian Health Group pain clinic in Indianapolis. Now he is working full time again, and he recently participated in an annual bike ride across the state of Indiana. Nance goes back to the clinic every few months for a check of his medications, and he sees a psychologist a couple of times a month.

“What we try to do is really recognize that people can have pain for all kinds of reasons, [and we] find as many of those causes as possible and treat them in the most specific fashion as possible,” says Michael Clark, associate professor and director of the Chronic Pain Treatment Program in the Department of Psychiatry and Behavioral Sciences at Johns Hopkins Hospital. “Ultimately, you’d like to get somebody well.”

(http://health.usnews.com/articles/health/pain/2009/02/10//finding-effective-treatment-for-your-chronic-pain.html?loomia_ow=t0:a41:g2:r2:c0.160667:b22273524&s_cid=loomia:chili-pepper-compound)

Copyright © 2009 U.S.News & World Report LP All rights reserved.

CO-PROXAMOL – A CONTROLLED DRUG?

By Jeanne Hambleton © 2009

From the Fibromyalgia FMS Global News Desk

See LATEST NEWS at end of post….

Yes folk are still writing about co-proxamol and asking why they cannot buy it – what has happened to it – and that they need it for their pain. Paul who wrote to me today asked me if the Save Coproxamol Forum has folded? He could not find it and neither can I? Any ideas? Who will start a new one? Who will start an e-petition? Let me know and we will share it for support.

As a quick resume for those who are wondering where this great painkiller has gone – the Government withdrew it on the advice of their medical advisers at the end of 2007. The reason given was some folk had found it worked for suicides.

The sad thing about this whole situation is that thousands of people who are still in pain and suffering, have been deprived ‘at the a stroke of a pen’ of co-proxamol which they had been taking safely for years,

In the last 14 months we, yes me included as my doctor will not prescribe co-proxamol, have finally used up the little stock pile of tablets we had saved knowing the end was nigh. Now folk are back in pain and want the Government to make co-proxamol a controlled drug. What is a controlled drug – I have included an extract below.

Briefly controlled means they have stricter legal controls on their supply to prevent them being obtained illegally.

Also you must show ID when collecting your prescription – a small price to pay.

WITHDRAWAL OF CO-PROXAMOL

At the time of the withdrawal the number of suicides involving co-proxamol was blamed but we were not told what percentage of the total number that represented. So if a larger percentage of those taking their own lives found other ways of solving their problems, this does warrant further discussion.

The reason co-proxamol is not available today to those who need it, although the Government promised co-proxamol could be prescribed on a named person basis to responsible people, is because the drug was taken off the prescribing list leaving it as an ‘illegal’ drug. This meant the family of a patient who overdosed on co-proxamol could take legal action against the prescribing doctor. How many doctors would take that risk? Not many.

While I and many others having every sympathy of those who take their own lives by any means including using co-proxamol, the Government’s failure to make co-proxamol a controlled drug left thousands of people in pain and deprived of ‘an old friend’ – a painkiller they could trust to give them some relief. It also drove a ‘coach and horses’ through all the promises made in Parliament.

I even offered to sign a letter accepting full responsibility for the safe use of co-proxamol tablets if my doctor would just prescribe more magic painkillers for me. He said the letter would not be acceptable in a court of law.

ALL GONE

So it has been just over a year since the last ‘legal’ prescriptions for this wonder tablet were written, with the exception of those few doctors courageous enough to trust their patients and disregard the directions about litigation. These are doctors who believed the pain of their patient was a paramount consideration and trusted those who were suffering.

Although the GPs would have us believe these ‘other’ tablets are as good and are better for us, they do not work for me and apparently not for many other people.

Here is the proof – received this week from Shirley Johnson who wrote, “I have not been allowed to have co-proxamol since its ban, and have now used almost all my reserves (allowing myself only to take one when ‘desperate’). I now have four left! No other product has been as good as this.”

YOUR VIEWS

Only last week I received an email about the withdrawal of co-proxamol tablets from a lady called Menna. She told me, “My husband is nearly 65 years old and has suffered from chronic pain for many years. He had always found that co-proxamol is the only medicine, which helped him. All other medicines he tried were showing very strong and adverse side effects. It is shame that the doctors, in spite of knowing that my husband does not misuse any drug and does not take alcohol, have stopped prescribing this wonderful life saving medicine.

“Now my husband suffers from nausea, headache, dizziness, constipation and vertigo, because he tries other pain killers. I wish this medicine could be made a Controlled Drug so it would be prescribed by doctors again.”

I am sure you will find it interesting to read at the end of this post exactly what a controlled medicine is – courtesy of the NHS……..

Elizabeth wrote to me at the end of December and said, “I suffer from degenerative disc disease and arthritis and have tried all the alternative pain-killers offered to me after my doctor refused to prescribe co-proxamol. Some were useless, most had unwelcome side effects. I am in constant pain. I have written to the Health Minister in the Scottish Parliament, who came out with the standard response. 
 My doctor sympathises and has advised me to purchase the drug in Spain (I have a property there). On my last visit I enquired about co-proxamol, but they did not have it listed. A visit to the GP resulted in me receiving a drug, which he said was co-proxamol, but it did not look like the pill I was familiar with. Does co-proxamol have a different name in Spain? 
Meanwhile I have to use a wheelchair, can anyone help?

I am advised in Europe co-proxamol is sometimes called distalgesic. I must have been taking this tablets for so long that I remember having boxes of distalgesic tablets.

Mr. H. Dacey said, “My wife and I were taking co-proxamol over a ten year period, she has arthritis and I have a shrapnel wound. In 2007 when it was announced that it was being withdrawn our doctor stopped prescribing straightaway, despite being reminded about the phased withdrawal. All other medication has proved ineffective with well documented side effects. I doubt very much if our G P would prescribe it under any circumstances, and they have some arrangement which makes it difficult to change GPs.”

June told me, “I admire your efforts and duly signed PEG Cope’s petition, but was disappointed at how few had signed! However, I wonder if all the names signed up are being added? When I went back to the site later in the day, my name had disappeared! I emailed the webmaster, and it miraculously reappeared!! There is a terrible rip-off on the Internet for co-proxamol. I just hope the tablets are pure and not harmful! I am one of the few lucky ones whose GP still prescribes for me. Best wishes, June.”

Lori responding to the co-proxamol withdrawal debate told me, “I have compassion for your desire to help so many people who are afflicted with so much pain. I have the same desire. But I have a very different orientation towards solving the pain problem. I am in the U.S. and just responded to the ‘call’ to use the drug Lyrica by ABCNews4. I will enclose my response and their link for information purposes.

“I am wondering why Jill Atwood is a spokesperson for the pharmaceutical industry, under the guise of factual reporting, summarily dismisses herbal and alternative remedies for fibromyalgia found on the web ‘if they are for profit’. What may I ask are the drug companies in it for? Charity? She concludes – ‘Ask your doctor’ – who is from the very same community that could not find anything wrong.

Suddenly everything is changed because a drug from big business is available? I am not disputing whether this drug helps some people but didn’t she off handedly mention a minor detail aka. ‘side effects’? Also, she failed to mention that this drug is simply treating the symptoms and does not address the root cause of fibromyalgia.

Isn’t this so typical? Find a drug with lots of side effects that treats the symptoms and forget about the source of the problem? I suggest that we all wonder just why are there millions of people suffering so? I would also ask why is it that so many different remedies get some results? What is the common thing they all address – I have looked into it and they all reduce stress (nutrition, massage, exercise etc.)

I know someone who has great success in eliminating fibromyalgia pain for people – but his message will never be heard when reporters brainwash people into believing that the only legitimate way to treat a problem is through the medical community and with drugs.

Unfortunately, the website where the News 4 article and video are shown does not allow any feedback.

http://www.abc4.com/news/local/story.aspx?content_id=a9c6a76a-8d13-4d05-a170-ae9e4d651468

NATURAL MEDICINE

Mark Conrad the MD of NutriVital at Petersfield in Hampshire, UK, a clinic for natural medicine, has similar thoughts to Lori. He believes that many drugs treat the pain but not the cause.

He wrote and said, “In today’s world where scientific enquiry is intimately linked up with medicine and health, it is encouraging to note that studies in seemingly disparate fields of science are lending support to the principles that have guided more ancient forms of medicine.

“Quantum physics hints at how intention can have a direct effect on material reality. Endocrinology has more recently spawned PNIE (psycho-neuro-immono-endocrinology), which studies the chemistry of how thought forms effect the physical body through hormone secretions. Neuroscience is growing in awareness of how the structure of our thoughts determines the physical structure of our neuron connections, which in turn determines our future thoughts. Epigenetics teaches us how our genes, far from being hard-wired keys to the fate of generations, are actually switched on and off by conscious thought and environmental influences. Though it may take a long time to filter into the medical school curriculum, modern science gives us plenty of good reason to look beyond drug-based medicine to more holistic views of human health.”

But the fact remains we still need our co-proxamol or a healthy substitute that will have the same effect. Any ideas Mark? I will let you know his comments when he thinks about that.

FIND YOUR MP

Think we must look to the ‘corridors of power’ and ALL write to our MPs if we hope to make changes. If you do not know who he or she is look at the link below and put in your postcode – and as if by magic the name will appear. You can be linked to a message box but I write it out first and then copy and paste it, having read and spell checked it. Or you can investigate and find the email. Most MPs use their

surnameinitial@parliament.gov. or you can write to the local constituency office.

What is possibly more interesting in this MP and post code exercise is the website reveals how your MPs is voting on different important issues helping you to decide if you want to vote for him or her next time. You can even set up an email alert to have details every time your MP speaks in the House. This is an interesting site.

http://www.theyworkforyou.com/

So we have the name of your MP but it is very likely a u-turn would not be accepted by the Government who would want to save face. However given enough evidence about the pain and suffering we poor fibromites and patients have been through as a direct result of the withdrawal of co-proxamol, they might be persuaded to allow it to become a controlled drug.

Write to your MP with graphic details of your illness, disease, pains, suffering plus the relief you had when taking co-proxamol, and the anguish and stress you are now suffering. A copy to the Readers’ Letters in your local paper encouraging others to write to the MP – give the name and contact– and your MP might be overwhelmed – we hope.

If you are emailing your MP include your address so he knows you are one of his constituents (he will want your vote) and if you send a copy to me (the email address is fmsglobalnews@mac.com), it would be great. I will publish good comments when I receive them. There is no requirement for the MP to answer letters if you do not live in his constituency, so he needs proof with your address.

Why not send a copy to begga@parliament.uk. This lady MP is someone who fought long and hard to save co-proxamol without success. She will welcome your letters, which will allow her to raise the matter again. Use CO-PROXAMOL in the subject of your email.

If you also have fibromyalgia you should point out all the symptoms, the impact and the poor quality of life FMS has had together with the financial burden. Write similar details about whatever illness you have. Describe how much you relied on co-proxamol with no side effects and write about the problems you have with the alternatives.

Ask the MP to raise a question in the House on your behalf and if you have FMS, for the fibromyalgia community totalling two million, mainly women, with many of them relying on co-proxamol for pain relief.

Suggest your own supplies that you had hidden for a rainy day are now depleted and there is no suitable alternative to bring you any pain relief.

What is a controlled drug (medicine)?

(http://www.nhs.uk/chq/Pages/1391.aspx?CategoryID=73&SubCategoryID=101)

Some prescription medicines, such as morphine, pethidine, and methadone are classified as controlled drugs. As these medicines are sometimes misused, they have stricter legal controls on their supply to prevent them being obtained illegally.

If you have been prescribed a controlled drug, there are some additional regulations that govern how the medicine can be supplied to you that are important for you to know.

What are the special regulations?

These include regulations regarding who can prescribe the controlled medicine. Doctors, dentists, and some specially trained nurses, and pharmacists, are allowed to prescribe them. Midwives may also use a limited range of controlled medicines.

There are also legal controls regarding how the prescription is written, and how much of the medicine may be prescribed at a time.

The pharmacist must follow special regulations for the storage of controlled drugs, and must make a record of the prescription in a controlled drugs register. They must also check that the prescription is correctly written before supplying the medicine. The prescription may need to be re-written if it is not legally correct.

Are there any special regulations for patients?

If you are collecting schedule two controlled drugs, such as morphine, or pethidine, from the pharmacy, you will be asked to show proof of your identity – for example, a driving license, or your passport. You will also need to sign the back of your prescription. To collect a schedule three controlled drug, such as flunitrazepam, you will just need to sign the prescription.

You must ensure that all controlled drugs are properly and safely stored at home, and if you carry them around, you must always ensure the safety of others.

It is very important that medicines are never given to anyone other than the person for whom they are intended.

Travelling abroad

If you are travelling abroad for a period of over three months, you will need to have a personal licence for carrying controlled drugs. It is important to be aware of the following points:

Your doctor must support applications for a licence.

You should allow 10 days for the application to be processed

Controlled drugs licences do not have any legal status.

A personal licence has no legal status outside of the UK, and is intended to help you pass through UK Customs with your controlled drugs. Therefore, it is recommended that you contact the Embassy, High Consulate, or High Commission of the country that you are visiting (or any country that you are travelling through) to see what their local policy is regarding the importation of controlled drugs.

If you are staying in a country outside the UK for more than three months, you should register with a doctor in that country so that you can receive further prescriptions.

Your controlled drugs should be:

carried in the original packaging,

carried in your hand luggage (BAA, or airline regulations, permitting),

carried with a valid personal import/export licence – only applicable if travelling for more than three months (see above), and

carried with a letter from the prescribing doctor confirming the carrier’s name, destination, and drug details (including
amounts).

For further information and enquiries about personal licences for controlled drugs, you can contact the Home Office, Drugs Branch (telephone number: 020 7035 0486 / 0487), or you can visit their website. See the ‘further information’ section for details.

Countries such as India, Pakistan, and Turkey, have lists of certain medicines that they will not allow in the country. Before travelling, it is therefore worth visiting the UK Foreign and Commonwealth (FCO) website in order to obtain a full list of embassy contact details. You can also refer to the Department of Health’s advice for travellers (see below).

Last reviewed: 28/03/2008 Next review due: 28/09/2009 Courtesy of http://www.direct.gov.uk

Please note the day of the next review – it must be time to start writing to ask if co-proxamol can be included in this list.

About the NHS – The NHS Constitution

Now read this…… about the ownership of the NHS and resources to improve our health

The NHS belongs to us all. The NHS Constitution was published on January 21 2009. It brings together in one place for the first time in the history of the NHS what staff, patients and public can expect from the NHS. It explains that by working together we can make the very best of finite resources to improve our health and wellbeing, to keep mentally and physically well, to get better when we are ill, and when we cannot recover to stay as wellas we can to the end of our lives. The constitution reaffirms that everyone has a role to play in the success of the NHS.

As well as capturing the purpose, principles and values of the NHS, the constitution brings together a number of rights, pledges and responsibilities for staff and patients alike. These rights and responsibilities are the result of extensive discussions and consultations with staff, patients and public and it reflects what matters to them.

Subject to parliamentary approval, all NHS bodies, and private and third-sector providers supplying NHS services, in England will be required by law to take account of the constitution in their decisions and actions. The government will have a legal duty to renew the constitution every 10 years. No government will be able to change the constitution without the full involvement of staff, patients and the public.

Download The NHS Constitution and The Handbook to the NHS Constitution from

http://www.nhs.uk/aboutNHS/constitution/Pages/Constitution.aspx

For more information and related documents:


http://www.dh.gov.uk/nhsconstitution

So where does that leave us?

I believe the best way to make changes to these documents is by writing to our MPs, asking them to raised questions in the House, which will inevitably get publicity and more support to make co-proxamol a controlled medicine.

Below is an extract from the article I wrote prior to the withdrawal with all the promises made by Caroline Flint MP, Parliamentary Under-Secretary, Department of Health, in the House of Commons. Feel free to quote sections in your letter if you think this will help or look up the original post in the November archives.

26 NOV.2007 CO-PROXAMOL UK WITHDRAWAL DEBATE FMSGLOBALNEWS.WORDPRESS.COM

Parliamentary Under-Secretary, Department of Health, Caroline Flint responds to questions concerning the withdrawal of co-proxamol.

It was reported co-proxamol had been available for some 40 years and many patients who were distressed about the withdrawal, had written expressing this view. It was said co-proxamol would be available on a named basis only at the end of the withdrawal period. The MHRA will ensure GPs are aware of this and this should resolve the supply question.

The Parliamentary Under-Secretary confirmed GPs would still be able to prescribe co-proxamol if there is a clinical need and if no satisfactory alternative could be used. There will however be a much stronger focus on “risk benefit judgment for the particular patient”.

Caroline Flint said the Department of Health would support the decision but would accept there could be a need to allow co-proxamol to be prescribed for some patients where there was a clinical need.Responding to a question on the availability of future supplies, the MP said it would be necessary to decide about the future for the minority who are prescribed co-proxamol as the only acceptable painkiller to bring relief.

She added that the Government is sensitive to the problem and accept that pain management is a complex matter.

In response to a request from the press it was reported the Medicines and Healthcare products Regulatory Agency had said co-proxamol would be available to patients on their “own responsibility” subject to clinical needs. But this report did not coincide with feedback from patients said the MP Anne Begg.

The Parliamentary Under-Secretary hoped Arthritis Care and similar groups would feel reassured by her comments and her “acceptance of the possibility that co-proxamol will continue to be prescribed where there is a clear clinical need because alternative treatments are unsuitable.”

Arthritis Care who have been opposed to the withdrawal of this drug since it was first announced, had been working with some MPs to have the issue raised in Parliament again this year.

The Arthritis Care website believed the named patient basis only was not a satisfactory way to ensure those who need the painkiller would receive it. The charity continues to argue for a review of how best to make co-proxamol available long term.

On their website Arthritis Care have invited those in pain, who had been transferred from co-proxamol to another drug, to contact them with comments in the efficiency of the alternative, to help further this cause. Telephone 0207 380 6547 or contact -

Campaigns@Arthritiscare.org.uk,
WalesCampaigns@Arthritiscare.org.uk,
or ScotlandCampaigns@Arthritiscare.org.uk.


I have written to Arthritis Care today and I am waiting for their up dated opinion – that I will pass on.

So will you be emailing me at fmsglobalnews@mac.com with copies of your emails to the MPs and local papers, as well as telling me about your problems in life without co-proxamol? We need all the ammunition we can get. Please start writing. Take care. Jeanne

LATEST NEWS

I have just had a reply back from Arthritis Care that I believe sounds promising. Jane wrote, “Thank you for your message about co-proxamol. You certainly raise topical and important points of concern to many in the arthritis community; I have taken the liberty of forwarding your email to our policy and campaigns unit who work on the co-proxamol issue. Many thanks for contacting me in the first instance about this – as a user-led organisation, we rely on such communication to help us reflect the reality of people’s experience.”

If you want to write to Arthritis Care you can contact the UK office Campaigns team by calling 0207 380 6534 or emailing us at Campaigns@Arthritiscare.org.uk. I would love to hear about it. Thanks.

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.

---

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

 

 

EUROPEAN FIBROMITES ARE DENIED CYMBALTA/DULOXETINE

By Jeanne Hambleton © 2008

News that the drug Cymbalta/Xeristar, a medicine containing the active substance duloxetine, will not be approved in Europe as the first official drug to treat fibromyalgia has been announced, causing grave concern to those who suffer with pain 24/7. This has led to fears that the decision may lead to more delays in a UK approval of new drugs to bring relief to fibromyalgia patients. There are currently no approved drugs for the treatment of Fibromyalgia available to UK patients.

This follows news that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency have adopted a negative opinion, recommending the refusal of a change to the marketing authorisation for the medicinal product Cymbalta/Xeristar 30 mg and 60 mg gastroresistant capsules for treatment of Fibromyalgia.

Cymbalta is the first medication for Fibromyalgia treatment that has been filed in Europe by Eli Lilly for the treatment of this invisible disability. The medicine was approved by the US Food and Drug Administration (FDA) for Fibromyalgia in June 2008.

The European Network for Fibromyalgia Associations suspect that the misperception, even among some medical professionals in Europe, that fibromyalgia is not a real medical condition may have contributed to the decision. Despite the fact that the World Health Organisation (WHO) has recognized Fibromyalgia as a disease in 1992, and several well respected medical organizations including the European League Against Rheumatism (EULAR), the American College of Rheumatology and the American Pain Society (APS) have developed criteria and guidelines for the classification and treatment of fibromyalgia, some medical professionals and some governments in Europe have been slow to recognise Fibromyalgia as a disease.

Cymbalta/Xeristar is a medicine containing the active substance duloxetine. It is available as gastroresistant capsules. Cymbalta/Xeristar was authorised for this purpose in December 2004. It is also used for adults with major depression; pain due to diabetic peripheral neuropathy (damage to the nerves in the extremities that can occur in patients with diabetes); and generalised anxiety disorder (long-term anxiety or nervousness about everyday matters).

In the European Medicines Agency press release from Canary Wharf, London, it states the major concerns that led the committee to recommend the refusal of the change to the marketing authorisation, came from concern that the effectiveness of Cymbalta/Xeristar in treating fibromyalgia had not been shown sufficiently. The results of five studies involving a total of 1,718 adults with fibromyalgia were submitted to the CHMP. Four of these were short term and one long term involving 307 patients.

In the short-term studies, the CHMP considered that the effect of Cymbalta/Xeristar was too small to be relevant for patients. There was no clear demonstration of improvement in symptoms and the modest effects of Cymbalta/Xeristar could be due to the medicine’s effect of improving the patients’ mood. The CHMP also concluded that the long-term study was insufficient to show the effectiveness of the medicine and that a long-term study comparing Cymbalta/Xeristar with placebo would be needed.

The CHMP was of the opinion that the benefits of Cymbalta/Xeristar in the treatment of fibromyalgia did not outweigh its risks and recommended that the change to the marketing authorisation be refused.

Mr. Robert Boelhouwer, President of the European Network for Fibromyalgia Associations (ENFA), expressed his concern following months of work in Brussels with the European Parliament to raise awareness, establishing a declaration for acceptance by the ENFA countries and promoting a petition for the recognition of Fibromyalgia.

He said, “The ENFA encourages the regulatory agency and its professional committee members to recognise the sufferings that the patients have been enduring and approve other effective and safe treatment options as soon as possible. This negative recommendation has put the 14 million Fibromyalgia patients in Europe in despair. They have been hoping to have access to the first innovative medicine to treat their disease. I cannot believe that Fibromyalgia patients in Europe cannot have an access to the medicine that has been helping the patients in the US and other countries in the world.”

The latest ENFA press release suggests that the misperception even among some medical professionals in Europe that fibromyalgia is not a ‘real’ medical condition may have contributed to the decision. Despite the fact that the World Health Organisation (WHO) has recognised Fibromyalgia as a disease in 1992, and several well respected medical organisations including the European League Against Rheumatism (EULAR), the American College of Rheumatology and the American Pain Society (APS) have developed criteria and guidelines for the classification and treatment of fibromyalgia, some medical professionals and some governments in Europe have been slow to recognise Fibromyalgia as a disease.

The ENFA claim it is estimated that about 12-14 million people in Europe suffer from fibromyalgia and the epidemic is more prevalent with women (87% of total prevalence). Due to the complex pathology of the disease, a comprehensive diagnosis requires multi-disciplinary approach. A recent global survey showed that healthcare professionals lack confidence in diagnosing and managing Fibromyalgia. Educating healthcare professionals, patients and the public to promote better understanding and management of Fibromyalgia will benefit patients, healthcare providers and the society. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

Currently, two medicines have been approved in the US to treat Fibromyalgia. The US Food and Drug Administration, the equivalent of the EMEA in Europe, has approved the first medicine Lyrica (pregabalin) in June 2007 for specifically treating fibromyalgia and Cymbalta (duloxetine hydrochloride) in June 2008. Both Lyrica and Cymbalta are proven to reduce pain and to improve function in people with Fibromyalgia.
Fibromyalgia imposes large economic burdens on the society as well as on affected individuals. A study shows that an average patient in Europe consults up to seven 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 estimates that the average annual cost of fibromyalgia is €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

The ENFA describes Fibromyalgia as 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.

As with all new medication the patient’s information leaflet and details of potential side effects should be read before taking any medication.