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

From the News Desk of Jeanne Hambleton

By GARDINER HARRIS -Published: February 9, 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

 

 

EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS

From the News Desk of Jeanne Hambleton

PRESS RELEASE -28.01.2009

 

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

Brussels – Following an invitation by the EMEA, the European Network of Fibromyalgia Associations (ENFA) has agreed to attend a consultation meeting with EMEA, where ENFA representatives will share their knowledge and experiences related to the disease of Fibromyalgia that some 14 million Europeans are suffering from.  One of the biggest challenges that the patients have been facing is the lack of officially recognized medical treatment options in the European Union whereas there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest & Cypress.

 

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

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

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

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

 

 

Contact:  European Network of Fibromyalgia Associations (ENFA)

Mr. Robert Boelhouwer President of ENFA

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

 About ENFA

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

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

 

 

PIERRE FABRE MEDICAMENT AND FOREST LABORATORIES TO COLLABORATE ON DEVELOPMENT AND COMMERCIALIZATION

From the Desk of Jeanne Hambleton – courtesy PR-Canada.Net. 

 (http://pr-canada.net/index.php?option=com_content&task=view&id=71522&Itemid=61)

Saturday, 27 December 2008

Forest Laboratories, Inc. and Pierre Fabre Medicament today announced that they have entered into a definitive collaboration agreement to develop and commercialize F2695 in the United States and Canada. F2695 is a proprietary selective norepinephrine and serotonin reuptake inhibitor that is being developed by Pierre Fabre for the treatment of depression and other central nervous system disorders.    Under the terms of the agreement, Forest will make an upfront payment to Pierre Fabre of $75 million and will pay future, undisclosed milestone payments. In addition, Pierre Fabre will receive royalty payments based on F2695 sales. Forest will assume responsibility for the clinical development and commercialization of F2695 in the United States and Canada, while Pierre Fabre will fund all preclinical development and drug substance manufacturing activities worldwide. “We are pleased to expand our relationship with Pierre Fabre to include this collaboration on the development of F2695 for the treatment of depression. Pierre Fabre has been an outstanding partner for Forest since we commenced our alliance in 2004,” commented Howard Solomon, Chairman and Chief Executive Officer of Forest. “We are highly encouraged by the strong clinical antidepressant activity and good tolerability exhibited by F2695 in the recently completed placebo-controlled, double-blind Phase II study. We look forward to initiating Phase III studies with F2695 next year. F2695 is the second late-stage product candidate we have licensed this quarter, underscoring our commitment to further building our pipeline and bringing novel therapeutics to the market.” “Pierre Fabre is looking forward to working with Forest on this exciting product opportunity,” said Jean-Pierre Garnier, Chief Executive Officer of Pierre Fabre Medicament. “Forest has an excellent record of developing and commercializing products for the treatment of depression and we are happy to extend our existing partnership to include F2695.” In a recently completed European placebo-controlled, double-blind Phase II study of F2695 in over 550 patients with major depressive disorder, the compound demonstrated statistically significant improvement compared to placebo (p<0.0001) on the primary endpoint, change from baseline in total score on the Montgomery-Asberg Depression Rating Scale (“MADRS”). Statistically significant improvement for F2695 compared to placebo was also demonstrated using the change from baseline in the Hamilton Depression Rating Scale (“HAMD-17″) and in response and remission rates using both the MADRS and HAMD-17. In addition, F2695 demonstrated improvement compared to placebo within two weeks after treatment initiation. About F2695 F2695 is an isomer of milnacipran and is protected by a method of use patent that extends through June 2023. F2695 exerts its effects by selectively inhibiting the reuptake of both norepinephrine and serotonin, two neurotransmitters known to play an essential role in regulating mood. Forest, in partnership with Cypress Bioscience, Inc. and Pierre Fabre, is currently developing milnacipran; a selective serotonin and norepinephrine dual reuptake inhibitor, for the management of fibromyalgia. The New Drug Application is under FDA review and we continue to plan for a first quarter 2009 product launch meeting About Pierre Fabre Medicament The Pierre Fabre Group, the second largest independent laboratory in France, employs some 10,000 people, and achieved a turnover of 1.7 billion euros in 2007. The lines of business are ethical medicine, family health but also in dermo-cosmetic products with several brands: Avene, Ducray, A-Derma, Galenic, Klorane and Rene Furterer and dermo-cosmetics. Pierre Fabre Medicament, the pharmaceutical branch of the Pierre Fabre Group, made Research and Development its core business and the key to its future. With 1,400 employees dedicated to R&D, Pierre Fabre Medicament has invested 30% of its annual sales to R&D during 2008, in five major therapeutic areas in terms of public health: oncology (the priority R&D area of Pierre Fabre Medicament, with 50% of all R&D expenses), psychiatry, urology, cardio-vascular, rheumatology. To learn more about Pierre Fabre, visit http://www.pierre-fabre.com. About Forest Laboratories Forest Laboratories is a U.S.-based pharmaceutical company with a long track record of building partnerships and developing and marketing products that make a positive difference in people’s lives. In addition to its well-established franchises in therapeutic areas of the central nervous and cardiovascular systems, Forest’s current pipeline includes product candidates in all stages of development and across a wide range of therapeutic areas. The company is headquartered in New York, NY. To learn more about Forest Laboratories, visit http://www.FRX.com. Except for the historical information contained herein, this release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. These statements involve a number of risks and uncertainties, including the difficulty of predicting FDA approvals, the acceptance and demand for new pharmaceutical products, the impact of competitive products and pricing, the timely development and launch of new products, and the risk factors listed from time to time in Forest Laboratories’ Annual Report on Form 10-K, Quarterly Report on Form 10-Q, and any subsequent SEC filings.

 

MAY 12 AND FIBRO WHAT DAY

By Jeanne Hambleton 2008

Every year on May 12 people suffering with fibromyalgia raise awareness about this invisible disability with the public who frequently ask, “Fibro what?’

For the first time ever the fibromites will be able to sing-along to a new singles CD called Fibro what? to provide the answer, while encouraging folk to by the CD to fund research to find a cure. This is thanks to a benevolent Manchester postman who wanted to help two million fibromites find a cure for their 24/7 illness.

Not only will the public hear the upbeat lyrics comedy singer song writer Dom Collins has set to music, describing the condition – aches and pains, sleep disorder, memory loss – but they can enjoy to three cheeky tongue in songs donated by the FM benefactor. Laughter is the best medicine they say but it is not necessary to have fibromyalgia to laugh with Dom Collins while supporting fibromyalgia research. Without government funding it is hoped the money from sales will help research and maybe lead to a cure.

Dom, who is well known on the Manchester and northern circuits for his good clean humour and funny songs about every day life, wrote the Fibro What song to help his friend, fibromite Christine Thomson.

“I wanted to do something to raise awareness for May 12 and when Dom offered to help I was delighted. I am fed up with the lack of government funding and doctors still telling us it is all in our heads. I am anxious everyone should know more about our invisible disability. I also felt it was important to highlight the need for research to find a cure. So the proceeds from sales will go towards Jeanne Hambleton’s new book PAIN 24/7 The Fibromyalgia Jigsaw©, due to be self published in the autumn, as the sales money from the book will go to research. The more books we sell the more money for research,” said Chris.

Holding a new contract with a well-known agent Dom expects to be busy playing, singing and making people laugh for the foreseeable future. His reviews compare him to Mike Harding and Richard Digance and claim Dom will go far. With a cheeky grin Dom said he loves to entertain and is available for any special occasion from divorces, funerals, vasectomies, wedding, birthdays and corporate affairs.

Delighted with the new CD, which uses her photographs, Chris has offered Fibro what? to fibromyalgia support groups up and down the UK to sell and play on May 12 at the special events to raise awareness.

ROYAL MALE

This is the second time this year that Dom, who is a postman, has been benevolent. In January he wrote ‘Jack’s Song’s, a tribute to Jack Judge, the writer of the WWI favourite ‘It’s a long way to Tipperary’. Dom donated half the proceeds of this CD to the Army Benevolent Fund (North West) and he launched the CD at the Tipperary Café in Stalybridge, Manchester, the site of the old Grand Theatre where the song was written in1912..

This first charity CD attracted letters of support from four members of the Royal family, HM the Queen who sent a lovely letter of thanks; HRH Prince Charles, the Princess Royal, HRH Princess Anne and HRH Prince Edward who all welcomed his support for the Army Benevolent Fund. He also received nice letters of congratulations from our PM Gordon Brown and Leader of the Opposition David Cameron. These can be viewed on Dom’s Blog on his website (www.domcollins.co.uk). Needless to say copies of Fibro What will be winging their way to Buckingham Palace.

But Fibro What? CD is just part of the story? There is a new fibromyalgia book on the way later this year. Written as a labour of love and self-published to preserve as much money as possible, sales money will contribute to research to find a cure for fibromyalgia – the pain fibromites live with for the rest of their lives.

With the present government making no effort to put aside a substantial sum of money for research, fibromites must do it themselves. Every Fibro What Cd is raising money towards research. For more information about the music or fibromyalgia email fibrowhat@mac.com or log on to http://fibrowhat1.wordpress.com. There are also Fibro What tee shirts and tote bags available.

OTHER MAY 12 EVENTS

May 12 is not just the International Fibromyalgia Awareness Day, but it is shared with the CFS/ME organisations, and is also listed as the International Nurses Day.

May 12 is the International Fibromyalgia Awareness Day, the birthday of Florence Nightingale, who was believed to have suffered with fibromyalgia and chronic fatigue when she returned from the Crimean War.

Born to wealthy parents in 1820 in Florence, Italy, she was described as a wild child. She took 36 nurses to British military hospital in Constantinople in 1854 when the Crimean War broke out. This was the first time female nurses had served in military hospitals under war conditions. She became known as The Lady of the Lamp.

The work of Florence Nightingale, the English army nurse, led to the creation of the International Red Cross. In her 30s Florence Nightingale suffered a paralyzing FM/CFS/ME-like illness and spent in the last 50 years of her life virtually bedridden. In hindsight some say she suffered with fibromyalgia. In spite of her illness, she founded the first School of Nursing. It is fitting that the determination of this lady of the late 19th century became an inspiration to victims of CIND – FMS/CFS/ME/PVFS/MCS (fibromyalgia, chronic fatigue, myalgic encephalopathy, post viral fatigue syndrome, multiple chemical sensitivity) and other long-term chronic pain illnesses in the late 20th century.

In East Wellow, in Hampshire, UK, at St Margaret’s Church, where Florence Nightingale was buried in 1910, a service is held on the Sunday after May 12. There is a significant memorial in the graveyard.

The website Answers.com tells us that every year in London in Westminster Abbey on May 12 there is a service during which a symbolic lamp is carried from the Nurses’ Chapel into the Abbey. This is passed from one nurse to another before the Dean of Westminster Abbey places it on the High Altar. It is said this is symbolic of passing the knowledge of nursing from one to another.

Wikipeda, the free Internet encyclopedia, provides a long list of important events which happened on May 12 including the Coronation of King George VI in 1937, the Queen’s father; in 1942 on this fateful day 1,500 Jews were sent to the gas chambers in Auschwitz; and on a brighter note on May 12 1965 the Soviet spacecraft Luna 5 crashed on the Moon.

INSPIRATION FOR MAY 12
The Awareness Day commemoration was the inspiration of Tom Hennessy, a American patient with chronic immunological and neurological diseases. His thoughts to link with
Florence Nightingale’s birth date galvanised the CIND community to pressurise governments to respond to these devastating illnesses. These days Tom is constantly bedridden and too ill to even answer emails, which still arrive from all over the world.

According to the CIND website symptoms of the chronic immunological and neurological diseases included cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms. The number of those suffering with these problems increased dramatically. In the 1980s, and patients were often dismissed by the medical profession as suffering from psychosomatic illness. It still happens today with some GPs.

As the illnesses became more widespread many people were so weak that they could not care for themselves. The mystery aches, pains and fatigue continued to spread unchecked with little response from government of the day. In order to raise awareness of the seriousness of the situation, the response was the MAY 12 International Awareness Day.
BETTER LATE THAN NEVER

Two days after the world celebrations the Fibro What composer, Dom Collins, is visiting the South Manchester Fibromyalgia Support Group in Sale on the evening on Thursday, May 15, with fibromite Christine Thomson, when he will be playing his guitar and singing Fibro What? to those with fibromyalgia.

This is a small group run by Leader Georgina Jameson with just 15 members including 4 men with fibromyalgia. The group covers Greater Manchester and Cheshire. It is unusual to have such a high percentage of men with FM in a group – almost a third. Members enjoy socializing, speakers, a library and a helpline. For more information about the south Manchester meetings contact the Leader. (georginajameson@talktalk.net)

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AWARENESS DAY WILL SEE MPs AND FIBROMITES TAKE COFFEE

By Jeanne Hambleton

The Fibromyalgia Association UK will be raising awareness in a big way on the International Fibromyalgia Awareness Day on Monday 12th May, when fibromites from all over the UK, and MPs meet for coffee at Portcullis House Westminster.

Chairman of the Trustees of FMA UK, Pam Stewart said, “Our aim is to make MPs aware of how desperate the situation is for so many fibromyalgia sufferers living in their constituencies. We need to let MPs know of the day-to-day struggles people with fibromyalgia battle against just to lead as near ‘normal’ a life. We need their help and support. Fibromyalgia sufferers deserve a voice and deserve to be listened to.
“We need to raise the profile of fibromyalgia in order to persuade decision makers to adopt these guidelines officially so that full treatment programmes can be made available to all sufferers throughout the UK.”
Recent e-petitions to the No. 10 Downing Street website have raised the question of treatments and the government responses have indicated that it is up to each Primary Care Trusts to decide priorities for their area but, without clear national guidance, fibromyalgia mostly slips to the bottom of the list if it is considered at all.

Although more doctors are becoming knowledgeable about fibromyalgia, many people who contact Fibromyalgia Association UK say that having read about the symptoms of fibromyalgia, it has been down to them to suggest the possibility of this as a diagnosis to their GP. This diagnosis stills seems to be overlooked, despite the prevalence of the condition.

Diagnosis of fibromyalgia is just the beginning of the problems. There is still the minefield of treatment options. At worst some patients are still being told, “There is nothing that can be done; there is no cure; learn to live with it. It’s psychological – all in your mind”. At best there are one or two centres that offer a range of managing and coping strategies using pain relief units, physiotherapists, counsellors, hydrotherapy and other treatments. Unfortunately most of the alternative therapies are in the private sector and sufferers are unable to finance these long term or even short term. There are also many hospitals with very good supportive departments but, unfortunately, this is a postcode lottery.
“The method of diagnosis, initially developed for research purposes, has been shown to be both effective and simple. On assessment, a careful health history is taken. If the patient reports widespread pain for more than three months together with pain in at least 11 out of 18 tender point sites when they are pressed, then a diagnosis of fibromyalgia can be made.   ‘Widespread pain’ means pain above and below the waist and on both sides of the body. The ‘tender points’, or spots of extreme tenderness, are rarely noticed by the patient until they are pressed,” said the chairman. 
Most people must wait for an appointment with a consultant, usually a rheumatologist, before getting a confirmed diagnosed, when it should be possible to be diagnosed by the GP.

Sufferers can spend years going backwards and forwards to their GP with what seems to be many different conditions. During this time their general health often deteriorates, employment may become difficult or impossible and family and friends can become increasingly frustrated and unsupportive. There are instances where diagnosis is made fairly quickly, within a year, but the majority can take 3 – 5 years.

Fibromyalgia is a painful, non-articular condition predominantly involving muscle; it is the most common cause of chronic, widespread musculoskeletal pain and affects between 2%-3% of the UK population. Although there is a reliable diagnosis for fibromyalgia and treatment guidelines, many people still wait years to get diagnosed only to be told there is no treatment.
The European League Against Rheumatism (EULAR) has issued the first guidelines for the treatment of fibromyalgia syndrome (FMS) and published them in the September 2007 issue of the Annals of Rheumatic Diseases. This 9 point plan covers the treatment and diagnosis of fibromyalgia. Whilst these guidelines are not yet adopted by the National Institute for Health and Clinical Excellence (NICE) in the UK, they can be seen as a significant step forward.
For more information of fibromyalgia in the UK please send a 42p sae to:
Fibromyalgia Association UK, PO Box 206, Stourbridge, West Midlands, DY9 8YL
or visit the website http://www.fmauk.org.

For further information relating to this press release please contact Jean Turner 0845 3452603 jean@rfmsg.freeserve.co.uk

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COUNTDOWN FOR CONGO – HIS FATE WILL BE DETERMINED ON APRIL 4

by Jeanne Hambleton  © 2008
NFA Leader Against Pain-International Advocate  

Congo, the German Shepherd dog from Princeton, New Jersey, who has been facing the death penalty for the last nine months as a “vicious dog”, will learn about his future in a few days, on Friday April 4.

But as this family dog awaits the verdict Congo’s supporters all over the world are being urged to please write Judge Mitchel Ostrer, polite and professional, letters of
support for Congo. Meanwhile the new Bill Congo’s Law that may have helped to save Congo’s life, lies ‘pending’ in the offices of the Senate.

Congo was put on “death row” nine months ago after protecting his mistress, a female dog and three puppies, from an alleged attack with rake by a gardening contractor. When news of his fate reached the Internet animal activists and dog lovers all over the world signed petitions and sent emails to the Judge in Princeton, home of Congo, to save the dog’s life.

Since then petitions and websites have sprung up supporting Congo as American Assemblyman Neil M Cohen from the New Jersey Senate proposed a Bill to save the life of Congo, from his death sentence and review the out-of-date vicious dog laws.
Neil Cohen’s bill will revise state animal control law provisions that are archaic and barbaric by making it more difficult to label a dog vicious or to put an animal down.

Neil Cohen is quoted as saying,”Congo’s case underscores the need for the state to modernize the law that deals with dog attacks so it is fair for the owners and the animals.”

The Bill started its passage through the Senate in December as A.4597 and changed to S3010. It is currently waiting further discussion by a committee of the Senate under the number A1603.

I was advised by the Legislative Information and Bill Room that the Assembly Bill A4597 made it to second reading in the Assembly but was never voted upon before the session ended on January 8, 2008.

The communication read, “The bill has been reintroduced into the current session (2008-2009) and the new Bill number is Assembly Bill A1603. A 1603 was introduced on January 8, 2008 and referred to the Assembly Agriculture and Natural Resources Committee. There is no action scheduled for the Bill at this time. The
current sponsors of the Bill are listed below. You may also find this
Bill and much more by visiting the NJ Legislature’s website at
http://www.njleg.state.nj.us.

Assemblyman Neil M. Cohen Democrat
District Office: 985 Stuyvesant Ave., Union, NJ 07083
(908)-624-0880

Assemblyman Patrick J. Diegnan, Jr. Democrat
District Office: 908 Oak Tree Ave., Unit P, South Plainfield, NJ
07080 (908)-757-1677

Assemblyman Richard A. Merkt Republican
District Office: 12 Old Brookside Rd., Randolph, NJ 07869
(973)-895-9100

Assemblyman Declan J. O’Scanlon, Jr. Republican
District Office: 32 Monmouth St., 3rd Floor, Red Bank, NJ 07701 (732)-933-1591.”

On March 17 further news from the Legislative Information and Bill Room reported, “Congo’s law was reintroduced for the 2008/2009 session with the new Bill number of A1603. It is currently in the Assembly Agriculture and Natural Resources committee with no hearings scheduled at this time.

“I believe the April 4, 2008 date has to do with a court hearing on the case. This would have nothing to do with the Legislature so I would have no information on it.”

Today’s entry in my search for an up date on Congo’s Law showed the following -
A1603 Revises vicious and potentially dangerous dog law; designated Congo’s Law. Agriculture and Natural Resources
Last Session Bill Number: A4597   (2R) S3010
Cohen, Neil M.   as Primary Sponsor
Diegnan, Patrick J., Jr.   as Primary Sponsor
Merkt, Richard A.   as Primary Sponsor
O’Scanlon, Declan J., Jr.   as Primary Sponsor
1/8/2008 Introduced, Referred to Assembly Agriculture and Natural Resources Committee.
Lawyer Robert Lytle who is acting for Congo’s owners, Guy and Elizabeth James, will be fighting to save the family pet’s life when Judge Ostrer hears both sides of the argument during the appeal to save Congo’s life. The lawyer believes that animals have as much right as we have to defend themselves. The prosecutor is claiming there was provocation but the dog’s reaction was disproportion.

So Congo needs all the support he can get if he is to live the rest of his days with his family. All dog lovers are urged to write to the Judge pleading for Congo’s life at

MITCHEL E. OSTRER- his direct phone number – 609-571-4188
Mercer County Courthouse
209 South Broad & Market Streets
PO Bo x 8068
Trenton, 08650

Anne Soden and Daphne who sent this information to me, are asking PLEASE
mention in your letter or phone call that he needs to take into consideration that the laws are old and they don’t take in to consideration how the dog perceived the threat. Also, there is no case law out there in NJ that has interpreted the statutes. This is the first one. Another point to use is that the last case of a dog attack was back in 1994 and the Governor then, Christine Whitman, had pardoned the Akita and he was exiled from the State. This is a last resort option so we can keep him alive.

Also, please contact Governor Jon Corzine at 609-292-6000 and ask the
Governor to pardon Congo.

You can also email him at:

http://www.state.nj.us/governor/govmail.html

and where is says- Select a Topic choose- “Law and Public Safety”

and select a Sub-topic, choose-”Pardons and Clemency”

and fill in your information to send a note to him.

You don’t have to live in New Jersey to call or email our governor. PLEASE GIVE CONGO YOUR SUPPORT.

As far Congo’s Law a spokesman for Assembly Neil Cohen is reported as saying the Bill is still pending.

Assemblyman Neil Cohen, an attorney, who sponsored Congo’s Law

New Research Funding CD is ready for production.

My own personal CD is ready to start raising research funding for our planned concert. Watch http://www.fibrohugs.org and http://fmsglobalnews.wordpress.com for news of the CD being in production and ready for sale.

Music? Now your talking my language! I grew up in Detroit during the 60′s and 70′s and played guitar for numerous “garage bands” and met my share of talented people over the years. Some of the most talented musicians in the Detroit area are just now coming out and getting noticed. I have some projects set up with some of the area’s best talent in the near future. Watch for news of a “special project” I have in the works this spring.

FMS Global News began early one morning in May of 2006 while Ken Euteneier, a close friend and webmaster of fibrohugs, located in Regina, Saskatchewan, and I were discussing ways to promote fibromyalgia awareness over our morning coffee. At the time, there was very little in the way of reliable news regarding fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS), so Ken and I decided to become an online news agency. About 9 months later the news blog, http://fmsglobalnews.wordpress.com was added, and became the worlds first “global” source of fibromyalgia and chronic fatigue syndrome news available world wide and in any number of languages. Months later we were joined by Jeanne Hambleton, a journalist from the UK, and we began bringing news and articles from around the world about fibromyalgia and chronic fatigue syndrome. Jeanne’s unique style of writing and the wealth of data we were able to introduce to the web, became our signature trademark. We began adding RSS feeds to a number of fibromyalgia and chronic fatigue sites, becoming the “source” of news for a number of web sites. FMS Global News Google Groups began this feed service and we were soon up and running with a number of web sites picking up the feed and a number of subscribers receiving their news by e-mail. We have some really awesome plans for 2008 and you won’t want to miss any of this, so keep reading and we’ll drop you a few hint’s about what’s coming up next.

Who I’d like to meet:

Anyone interested in promoting gulf war syndrome and fibromyalgia news, research, and awareness…Musicians that can really rock

Rick

If you would like to help:

To donate to the Gregory Shane Fibromyalgia Fund:

Please earmark your donation “Concert Fund Attn. Dr. Dan Clauw”

Call toll free 866-860-0026 or local (in Michigan) 734-763-6433.

E-mail IntMed-Development@med.umich.edu.

Donate online at Michigan Online Giving and

enter the fund’s name on the donor form.

Both private and Corporate donations are welcome.

http://www.med.umich.edu/painresearch/about/gift.htm

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IMPORTANT NEW NEWS ABOUT THE FIBROMYALGIA CONFERENCE

Hi everyone ~ I wanted to update everyone on what is going on at the Fibromyalgia Conference. If you don’t have information on this conference, here it is. It is going to be an awesome conference. So much information from Doctors / Demonstrators. We are very excited about this!!

We have been notified that the Hotel is wanting some of the rooms that we have blocked. They are full other than the rooms we have booked and there are other people that want these rooms. If you are anticipating coming to this conference, please be sure to call the Ramada in Hollywood, Florida, and reserve your room. Here is their information. http://www.ramadahbr.com Book it with a credit card. They don’t charge you until you arrive at the hotel.

We have put together part of the schedule. We are still waiting on some of the people to call and schedule. We are still working on the Thursday schedule. We are waiting for schedule for massage therapist, person from company that sells Lyrica, a Hydro Therapist, a person that does Yoga, etc.

THURSDAY (schedule coming soon)

FRIDAY 10:00-12:00 – Acupuncturist 1:00-2:00 – Pharmacist ~ does regular and compound pharmacy 3:00-5:00 – Dr. Nelson ~ a holistic chiropractor

SATURDAY 10:00-12:00 – Dr. Lechner ~ well known local Rheumatologist and his Wife Trudy. He works with Fibromyalgia people ~ his wife has Fibromyalgia. She works with him in this office as a counselor at the office to help people with Fibromyalgia.

1:00-? – Dr. Roger Murphree ~ He is a well known Doctor, and Author. He works with supplements with people with Fibromyalgia, Chronic Fatigue, and many other diseases.

Saturday evening dinner is included as part of the conference

SUNDAY Brunch Buffet is included as part of the conference. We will get together, to say goodbye, and talk about where our next conference will be. You will be amazed by the new friends you have met here, and saying good-bye is difficult.

Again ~ if you are planning on attending this conference, let us know, so we can get you on our list ~ we only can accommodate a certain number. And if you are planning on staying at this hotel, please give them a call IMMEDIATELY as they will not be holding anymore rooms for us as of the end of this week, February 16, 2008.

On a side note, I have about 40 items listed on our Fundraising eBay page at http://hugsebay.com Please check them out because the items are very interesting with a very wide variety. Thank you to all the people who have sent us goods to put on the eBay site to help raise funds to keep sites like this open and free to the public to use. If you’d like to get involved or have any questions about this please contact me at fibroebay@fibrohugs.com

Want more info on the Conference or want to give us some input? Do it on our Conference Forum at http://www.fibrohugs.org/index.php?option=com_fireboard&Itemid=168 Read updates on the Conference at http://www.fibrohugs.org/index.php?option=com_attend_events&task=view&id=1We hope to see you at the Conference!!

((((hugs))))Becky

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A LETTER TO ‘NORMALS’

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

How many times do you feel guilty when you watch your family do jobs which you used to do without thinking about it? What is your reaction to that barbed comment, “No, you sit still. You said you don’t feel well!”

Yes me too – I want so much to do what I have always done but these days I am forced to look at the jobs and think maybe tomorrow I will feel better. In fact (tomorrow) Mother Mañana has become my middle name

I read an article about one fibromites who made the front page of her local newspaper because she told them she was dying to do her own washing up? Certainly a good angle for a story and it raised quite a bit of awareness, but that nevertheless does not stop you feeling isolated with your invisible disability.

Come to think of it, this could be a wonderful story for the local paper for International Fibromyalgia Awareness Day on May 12. Just imagine if all the local newspapers carried the story and talked about raising awareness, it is such a silly story we would even make television.

But I do try to look on the bright side of any situation and must admit I have met such pointed remarks with the comment, “Well, you know I had to drop out of the London Marathon and was very disappointed I could not do the skydive.” This usually brings a smile and clears the air. It helps if no offence was intended.

But recently someone sent me a copy of a letter written by Ronald J. Waller on behalf of his wife, for the website, www.fibrohugs.com, where it has been viewed almost 29,000 times.

It is a poignant letter that supports the need for understanding for fibromites and leaves the reader in no doubt that the writer is certainly suffering and under pressure.

The composer of this letter is Ronald J. Waller, who is a published writer and has his own website http://rjswritingloft.com.

He told me, “After watching my best friend, my wife, suffer from fibromyalgia I felt compelled to write, inform and continue to learn more about this demon that not only invades Carolyn’s life but also has affected all who are close to her.”

My thanks to Ronald for sharing this with us and thanks to Fibrohugs for allowing us to publish this.

LETTER TO NORMALS

Hello Family, friends and anyone wishing to know me,

Allow me to begin by thanking you for taking the time out of your day to spend time with me and to get to know me better. A person’s time is their most valuable asset and yours is appreciated.

I want to talk to you about Fibromyalgia Syndrome (FMS) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are mis-informed. Because of this judgements are made that may be incorrect…….So I ask you to keep an open mind as I try to explain who I am and how FMS/MPS has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see – a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I. You will not see my scars as you would a person who had suffered a car crash. You will not see my pain in the way you would a person undergoing chemo for cancer. However, my pain is just as real and just as debilitating. In many ways my pain may be more destructive because people cannot see it and do not understand……..Please do not get angry at my seemingly lack of interest in doing things. I punish myself enough I assure you. My tears are shed many times when no-one is around. My embarrassment is covered by a joke or laughter, but inside I want to die……..

Most of my ‘friends’ are gone, even members of my own family do not understand. I have been accused of ‘playing games’ for sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute. This is because the burning and pain in my legs or arms or both is so intense I cannot put my clothes on. I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

I feel like a child at times……just the other day I put the sour cream I had bought in the pantry instead of in the fridge. By the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to ‘lose’ the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the demon assaults me at every turn.. Please try to understand…………

Sleep, when I do get some, is restless. I wake often because the pain of the sheets on my legs is unbearable or because I twitch uncontrollably. I walk through many of my days in a daze with the fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that does not mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening. The next day or even in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say ’but you did that yesterday!’ ’What is your problem today?’ The hurt I experience at those words scars me so deeply that I have let my family down again, and still they do not understand……………..

On the brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandkids and shine when they give me a hug or ask me to fix their favourite toy. I am fun to be with if you will spend time with me in my own playing field. Is this too much to ask? I love you and want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do research for your latest project. Many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honoured I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals…..and this demon….Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that. I will be there in ways that I can. I will give all I can as I can. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatment, at least right now anyway…….Please understand……..

Thank you for spending your time with me today. I hope we can work through this thing, you and I…..I just need you to just try to understand that I am just like you……………………

For a small insight into the constant pain of a fibromyalgic lift your arm and squeeze the muscle just below your neck on the top of your shoulder, hard enough until it is uncomfortable. Then squeeze a little more and hold it for a few minutes if you can stand it. That is the pain we feel from the roots of our hair to the tips of our toes……………………..

Thank you for taking the time to read this, sorry if the pain experiment hurt’s, it does!! xxxxxxxx

Copyright of Ronald J. Waller and www.fibrohugs.com

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A THOUGHT PIECE

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

Grab a cup of coffee, sit comfortably and let us begin. The papers here in the UK this weekend have been full of justice being handed out contrary to British law by groups of Muslim elders sitting judgment on those with the same religious beliefs, in a redundant public house, someone’s front parlour or elsewhere.

Whatever your feelings may be on this I think you will have to agree with me that in this country we are in a bit of a mess it seems. The Government does not seem to know if it is on it’s head or it’s heels. I am saddened when I read about the stabbings of schoolboys, the stoning and battering of good citizens trying to protect their own property, the problems from the binge drinking, increased teenage pregnancies, the turmoil faced by broken families after quickie divorces when children need a mother and father, and the general behaviour today. My parents never talked about divorce. I doubt they could have afforded to divorce. My Dad was too busy earning a small wage to put food on the table. They had their ups and downs but separate – never. They married for better or worse. As I did. Yes I am still on my first marriage after 3 children and two grandchildren, and proud of it. How have we come to this sickness of people thinking only of themselves without considering the turmoil they leave behind them and how others have to live with their thoughtlessness? .

Yes I know I can hear you say – here she goes again – on about the good old days. I seem to be on the Soap Box again – sorry about that. But you must agree we (we those of us of a certain age) did respect our parents, grandparents, elders, teachers, and of course the ‘Bobby’ on the beat. Cheek him, and he would cuff you with his firm cape. Today the children seem fearless. As one paper described them, they have become ‘feral’ groups – wild – looking for kicks at the expense of other people.

But what about us grown ups, are we any better? Would you give up your seat on the crowded 5.30pm train to a pregnant woman – or would you think she should not be travelling at rush hour? Maybe you would offer your seat on a crowded bus to a young mother and child, a granddad or someone disabled? Do you stop and help someone who has fallen over in the street or dropped all their shopping? Or do you hurry by in case it is a trick to rob you? Does your conscience encourage you to throw a 50p coin in the hat of some poor homeless soul, so as to make you feel good?

Is it not time we took stock of the way we live our lives? This could be your grandmother, your pregnant sister, or even your child who was born disabled and it is not his fault, struggling to cope without any offers of help?

I believe the trouble today is we do not have time to stop and think about anything other than ourselves, our problems, our mortgage, career, wife and children.

While I am not a church-goer, I do believe there is something else after death. I do consider I am a Christian and I would stop and help an old lady pick up her shopping or offer comfort if she fell. I was offered the same comfort when I fell.

This does make me remember something I learned at school which for no particular reason has stuck in my mind. “Do unto others as you would have them do unto you!” I seem to think I heard this in RE (Religious Education).

When an email arrived on my desktop about a mother of three children and two unwashed smelly men, I felt the moral of the story was so strong that I should share it with others. I am told it is a true story – I really hope it is.

BREAKFAST AT MACDONALDS

I am a mother of three (ages 14, 12, 3) and have recently completed my college
degree. The last class I had to take was Sociology.

The teacher was absolutely inspiring with the qualities that I wish every human being had been graced with.

Her last project of the term was called, ‘Smile.’ The class was asked to go out and smile at three people and document their reactions. I am a very friendly person and always smile at everyone and say hello anyway. So, I thought this would be a piece of cake, literally.

Soon after we were assigned the project, my husband, youngest son, and I went out to McDonald’s one crisp March morning. It was just our way of sharing special playtime with our son. We were standing in line, waiting to be served, when all of a sudden everyone around us began to back away, and then even my husband did.

I did not move an inch… an overwhelming feeling of panic welled up inside of me as I turned to see why they had moved. As I turned around I smelled a horrible ‘dirty body’ smell, and there standing behind me were two poor homeless men.

As I looked down at the short gentleman, close to me, he was ‘smiling’. His beautiful sky blue eyes were full of light as he searched for acceptance.

He said, ‘Good day,’ as he counted the few coins he had been clutching. The second man fumbled with his hands as he stood behind his friend. I realized the second man was mentally challenged and the blue-eyed gentleman was his salvation. I held my tears as I stood there with them.

The young lady at the counter asked him what they wanted. He said, ‘Coffee is all Miss’ because that was all they could afford. (If they wanted to sit in the restaurant and warm up, they had to buy something. He just wanted to be warm).

Then I really felt it – the compulsion was so great I almost reached out and embraced the little man with the blue eyes.

That is when I noticed all eyes in the restaurant were set on me, judging my every action. I smiled and asked the young lady behind the counter to give me two more
breakfast meals on a separate tray.

I then walked around the corner to the table that the men had chosen as a resting spot. I put the tray on the table and laid my hand on the blue-eyed gentleman’s cold hand.

He looked up at me, with tears in his eyes, and said, ‘Thank you.’

I started to cry as I walked away to join my husband and son. When I sat down my husband smiled at me and said, ‘That is why God gave you to me, Honey, to give me hope.’

We held hands for a moment and at that time, we knew that only because of the Grace that we had been given were we able to give. We are not churchgoers, but we are believers.

I returned to college, on the last evening of class, with this story in hand. I turned in ‘my project’ and the instructor read it. Then she looked up at me and said, ‘Can I share this?’ I slowly nodded as she got the attention of the class.

She began to read and that is when I knew that we as human beings and share this need to heal people and to be healed. In my own way I had touched the people at McDonald’s, my son, instructor, and every soul that shared the classroom on the last night I spent as a college student.

I graduated with one of the biggest lessons I would ever learn – unconditional acceptance. Much love and compassion is sent to each and every person who may read this and learn how to love people and use things – not love things and use people.

She added an angel wrote many people will walk in and out of your life, but only true friends will leave footprints in your heart. To handle yourself, use your head. To handle others, use your heart. God gives every bird it’s food, but He does not throw it into its nest.

So the moral of this story is – we have got to work at it. Think about if you were in their situation? Consider if you were a mother with a small child carrying groceries and struggling and standing on a crowded bus. I will leave you with this thought – there must be more to life than thinking about ourselves.

I would love to hear your comments! What do you think? How can we change this ‘sickness’?
Talk soon. Jeanne.

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