“Walk in My Shoes™” for Fibromyalgia

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

Courtesy Newswiretoday.com

NewswireToday – /newswire/ – Anaheim, CA, United States, 04/22/2009

For anyone who has ever felt helpless watching a loved one suffering from chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and chronic Lyme disease, “Walk in My Shoes™”.

Hosted by P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.) a non-profit charitable organization founded in 2002 to create awareness and address the needs of persons in the U.S. diagnosed with the above mentioned illnesses, “Walk in My Shoes™” will be held on May 23 at the C.B. Smith Park in Pembroke Pines.

The fundraiser is P.A.N.D.O.R.A.’s first hosted walk, and aims to attract participants who will make the 5K walk on behalf of friends, co-workers and family members with chronic illnesses.

“Acknowledging and understanding the real pain of a loved one suffering with these chronic illnesses is one of the most important things that friends and family members can do to show their support,” said P.A.N.D.O.R.A. founder Marly Silverman, who was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia in 1998.

“’Walk in My Shoes™’ also recognizes the important role that caregivers play in the lives of those with these debilitating illnesses.”

“Healthy persons may never be able to truly understand the debilitating body wide pain and fatigue, brain fog/cognitive impairment and flu like symptoms experienced on a daily basis by people with CFS, fibromyalgia and other chronic pain illnesses, however, helping raise much needed funds to continue the work of advocacy groups like P.A.N.D.O.R.A. brings us another step closer to finding a cure,” Silverman added.

WALK REGISTRATION

Check-in for “Walk in My Shoes™” begins at 7:30 am to 8:30 am. The walk starts promptly at 9:00 am. The C.B. Smith Park is located at 900 N. Flamingo Road in Pembroke Pines.

About P.A.N.D.O.R.A., Inc.

Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy
P.A.N.D.O.R.A. (pandoranet.info) was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and chronic Lyme disease and advocate on quality of life issues. P.A.N.D.O.R.A. is Built on Hope – Strong on Advocacy – Finding a Cure through Research.

Contact: Corin Walson – info[.]walsonpr.com – 714-970-2268
(http://www.newswiretoday.com/news/49839/)

Gulf War Veterans Display Abnormal Brain Response to Specific Chemicals

From the FMS Global and UK News Desk of Jeanne Hambleton

Courtesy of Newswise Science Centre -UT Southwestern Medical Center
Dallas March 20 2009

Newswise — A new study by UT Southwestern Medical Center researchers is the first to pinpoint damage inside the brains of veterans suffering from Gulf War syndrome – a finding that links the illness to chemical exposures and may lead to diagnostic tests and treatments.

Dr. Robert Haley, chief of epidemiology at UT Southwestern and lead author of the study, said the research uncovers and locates areas of the brain that function abnormally. Recent studies had shown evidence of chemical abnormalities and shrinkage of white matter in the brains of veterans exposed to certain toxic chemicals, such as sarin gas during the 1991 Persian Gulf War.

The research, published in the March issue of the journal Psychiatry Research: Neuroimaging, enables investigators to visualize exact brain structures affected by these chemical exposures, Dr. Haley said.

“Before this study, we did not know exactly what parts of the brain were damaged and causing the symptoms in these veterans,” he said. “We designed an experiment to test areas of the brain that would have been damaged if the illness was caused by sarin or pesticides, and the results were positive.”

In designing the study, Dr. Haley and his colleagues reasoned that if low-level sarin or pesticides had damaged Gulf War veterans’ brains, a likely target of the damage would be cholinergic receptors on cells in certain brain structures. If that was so, administering safe levels of medicines that stimulate cholinergic receptors would elicit an abnormal response in ill veterans.

In the study, 21 chronically ill Gulf War veterans and 17 well veterans were given small doses of physostigmine, a substance which briefly stimulates cholinergic receptors. Researchers then measured the study participants’ brain cell response with brain scans.

“What we found was that some of the brain areas we previously suspected responded abnormally to the cholinergic challenge,” Dr. Haley said. “Those areas were in the basal ganglia, hippocampus, thalamus and amygdala, and the thalamus. Changes in functioning of these brain structures can certainly cause problems with concentration and memory, body pain, fatigue, abnormal emotional responses and personality changes that we commonly see in ill Gulf War veterans.”

A previous study funded by the U.S. Army found that repetitive exposure to low-level sarin nerve gas caused changes in cholinergic receptors in lab rats.

“An added bonus is a statistical formula combining the brain responses in 17 brain areas that separated the ill from the well veterans, and three different Gulf War syndrome variants from each other with a high degree of accuracy,” Dr. Haley said. “If this finding can be repeated in a larger group, we might have an objective test for Gulf War syndrome and its variants.”

An objective diagnostic test, he said, sets the stage for ongoing genetic studies to see why some people are affected by chemical exposures, and why others are not. New studies would also allow the selection of homogenous groups of ill veterans in which to run efficient clinical trials for treatments.

Dr. Haley first described Gulf War syndrome in a series of papers published in January 1997 in the Journal of the American Medical Association. In previous studies, research from Dr. Haley showed that veterans suffering from Gulf War syndrome had lower levels of a protective blood enzyme called paraoxonase, which usually fights off the toxins found in sarin. Veterans who served in the same geographical area and did not get sick had higher levels of this enzyme.

Dr. Haley and his colleagues have closely followed the same group of tests subjects since 1995. In 2006, UT Southwestern and the Department of Veterans Affairs established a dedicated, collaborative Gulf War illness research enterprise in Dallas, managed by UT Southwestern.

Texas Sen. Kay Bailey Hutchison, a longtime supporter of Gulf War research, facilitated that agreement and secured a $75 million appropriation over five years for Gulf War illness research.

This study was funded, in part, by the U.S. Army Medical Research and Materiel Command.

Other UT Southwestern researchers involved in the current study included Drs. Jeffrey Spence and Patrick Carmack, assistant professors of clinical sciences; Drs. Michael Devous and Frederick Bonte, professors of radiology; and Dr. Madhukar Trivedi, professor of psychiatry. Researchers from Southern Methodist University also participated.

Dr. Robert Haley http://www.utsouthwestern.edu/findfac/professional/0,2356,12888,00.html
(Article -http://www.utsouthwestern.edu/utsw/cda/dept353744/files/522139.html)

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

 

 

FIBROMYALGIA: FIRST STEP FORWARD IS EU RECOGNITION SAY MEPS

FROM THE DESK of Jeanne Hambleton – October 27 2008

Just imagine what would happen if the word ‘fibromyalgia’ was casually dropped into conversation. Chances are there would be a lot of blank faces staring back. So just think what its like for the 14 million people in the EU, whose condition, fibromyalgia, is at the moment not even recognised as a disease.

It is hoped by sufferers that this is all set to change, as Members of the European Parliament sign up to a petition for recognition of fibromyalgia across the European Union. Even though the World Health Organisation has formally recognised the condition – whose symptoms includes chronic musculoskeletal aches, pain and stiffness in addition to soft tissue tenderness, general fatigue and sleep disturbances – since 1992, fibromyalgia is not yet recognised at an EU level.

Euro-MP for the North East Fiona Hall warns that this lack of recognition not only hinders a formal diagnosis and treatment of the condition, but also limits research into the causes of the disease and new treatment methods.

Says Fiona,

“Recognising fibromyalgia as a disease is the first step towards making life that little bit easier for those suffering from the condition. A formal recognition would also provide comfort to those sufferers, who have for many years, been met with blank stares when trying to discuss the condition.

“Hand in hand with this, there is still little understanding of the disease in terms of both cure and effective treatment available at the moment. More research facilities are needed to try to determine the cause and effect of fibromyalgia and I am confident that putting a name to the disease would allow this to happen.

“A formal recognition of fibromyalgia could also make it easier for patients to apply for Disability Living Allowance. Holding a regular job is hard for people suffering from the condition. Fibromyalgia is a real disease and should be treated as such.”

UK sufferers such as Gemma Rouston, who was diagnosed in 2007, support the MEP’s actions and calls for more widespread understanding of the disease.

Gemma, who is membership secretary of the Liberal Democrat Disability Association (LDDA) said,

“It was such a relief to be told that I was not imagining things. However, I was not given any real idea of how to cope with the condition apart from taking painkillers and exercise.

“It is very difficult to cope with fibromyalgia; it varies everyday and every hour. I am in my early forties, and have to use a walking stick. I have two disabled children, who I am supposed to care for, but they look after me.

“Even if you get a formal diagnosis, the Department of Work and Pensions are reluctant to help out financially. Fibromyalgia makes it difficult to do any work on a regular basis. No employer will be willing to be as flexible as I need them to be, especially the way that things are at the moment.”

“Having fibromyalgia means that my family are restricted in what we do and where we go. I cannot really plan what I will do each day, even if it is just myself.”

Ends

Lucy Towers

Press Officer to Fiona Hall MEP
Regional Media Co-ordinator for the Liberal Democrats in the North East

55a Old Elvet
Durham
DH1 3HN
0191 383 2269 / 07776 256333
lucy@fionahallmep.co.uk

http://www.fionahall.org.uk

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

Musicians supporting gulf war syndrome and fibromyalgia research (free downloads).

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

MISSY FLOSSIE, AN-INK-DRINKING FIBROMAC AND BATHROOM ISSUES

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

A bit of New Year nonsense. I have been a trifle indisposed recently due to a bad fall and fractures to my pelvic and public bones (if you know what I mean). My friend Olive, from my school days, was concerned, as she had not heard from me. She suggested I am usually ‘stuck’ to my computer and she wondered why I had not written. She had no idea I was busy with my web log.

I guess I should come ‘out of the closet’ and admit in principle the ‘sticky bit’ is true. My computer – well my Apple Mac-tilda – and I are almost inseparable but not quite joined at the hip. She hates that name Mac-tilda. She says it is too old fashioned.

Although we are close, well almost partners, we do not share the same bed. I draw a line at mixing business with pleasure or even sleeping together. She is always uploading or downloading something. She does not have airbags so it would be highly dangerous, to say the least, to fall asleep in front of her – almost a disaster.

But my Mac-tilda can be a bitch at times – a proper diva, crashing around and losing things. To keep her sweet I call her Missy Flossie. I am sure she has all the symptoms of fibromyalgia – headaches, always wide awake, crashes, so slow first thing in the morning, ponders and suffers from fibro fog…she certainly cannot remember how to spell. I also think she has an addiction. I will whisper it quietly as she is a bit touchy about it. She loves ink – any colour but especially black. It is a bit worrying really. I think she drinks it when I am asleep. I could only find a PC Doc and he was not much help. He suggested buying bigger packs of ink. All I can say is it is not me using all the ink. Someone not too far away must be responsible or the little plastic boxes are getting smaller every time.

Due to the ink situation with my ink-drinking-machine and I do not want a confrontation with Missy Flossie, I am doing what a lot of emails tell me to do – not printing emails on paper and ‘saving trees’ – but they don’t say how Missy Flossie’s addition to ink and saving trees helps anyone.

BATHROOM ISSUES
Anyway I have been carried along with the e-generation and believe paper belongs in the bathroom for what I might call ‘essentials’.

You have to admit (fibromite or not) the loo, bathroom, little girl’s room, water closet, convenience, toilet or bog, is a good place to think and sort of get in touch with the things you should have done and haven’t. A pencil and pad can be useful at times like this.

Maybe the best time is when everyone else has left the house if you can wait that long. There is nothing worse than when everyone else wants a piece of the bathroom too. I could not ever again live in a house without two toilets. It never fails to amaze me why the planning authorities even consider applications for developments with one toilet.

My problem I think stems back to my childhood – the abuse of using a cold outside toilet. I lived in a council house where there was no bathroom. The bath was in the scullery (kitchen to you folk) under a large wooden cover which was always full of kitchens bits and pieces and the toilet was in the cold, outside. For hot water to bath they boiled a copper or to wash they boiled a kettle. Hot bath water was so precious we all used one bath load. The cleanest body went in first – me – then my Mum – and finally my Dad. Friday night was bath night and nothing got in the way of that.

On reflection I wonder if the main reason I got married was to live in a house with its own bathroom with fresh bath water all to myself. I would fill it with smelly bath salts so no-one else would want to use it – certainly not my manly husband – “what smell like a chemist shop – no thanks – I will wait for the boiler to get hot again”.

My bath time was sheer bliss. My daughter took after me and would have spent her life in the bathroom. We christened her Lady Bathtub. It was fatal if she was up first in the mornings with one bathroom. It almost came to a divorce – happy days.

GETTING TO THE BOTTOM OF THESE ISSUES
I had an Uncle George who used to have a pile of magazines next to the toilet – to read – they were not girly magazines but books like Picture Post. I know, I checked. Yes they did have toilet paper in those days. However during and even after WW II my dear late father would tear up newspapers into suitable size pieces of paper, pierce a hole in the corner with a skewer (like they used to stick in meat), thread string through the pieces of paper – probably 140 sheets – and hang it in the outside toilet. I knew we would get to the bottom of this subject…
I wonder what slogan today’s soft toilet paper makers would have put on that. Maybe ‘help the war effort’ or ‘waste not want not’. I can also remember some scratchy sanitized paper.

I wonder if this new saving paper lark applies to toilet paper – I hope not. Would hate to give up my ‘pamper your posterior double de luxe cushion 4 sheet luxury tissue in delicate peach colour’ and return to newspaper again even though I have spent my life writing for them. I wonder if that is why I became a journalist – maybe I have got to the bottom of that childhood longing after all.

At least these days if you have a bit of ME time in a nice indoor bathroom, you know you will not have a bottom covered in newsprint or scratchy smelly paper. But unlike days gone-by when no one wanted to use the cold outside toilet unless they really had to, today with warmer luxury bathrooms you might have endless people banging on the door shouting, “Have you finished? I am already late for work.”

As if that is my fault. He cannot even blame Missy Flossie for that either. She might be slow in the mornings but she just needs a little encouragement and coercion to get going. She never uses the bathroom so he cannot blame her because he is late although she knows all about blogging, blogs and weblogging. She has become something of an expert in fact.

BLOGS, BLOGGING AND WEBLOGGINGI cannot make my mind up about where blogging came from! Someone must have thought up that word while sitting on the ‘bog’ pontificating or even pondering. I have just looked up the word ‘bog’ in my on-line dictionary and it says “a piece of soft, wet, spongy ground”. Someone has left the bathroom in a mess again!!!! Wait till I catch them.

I think that perhaps this is where ‘blog’ rolls originated. I guess someone just sat on the toilet and thought about it and said, “Oh L – let’s go for it – blog?”

Well I could not help myself, could I? Wikipedia on the Internet tells me a blog (a portmanteau of web log) is a website where entries are commonly displayed in reverse chronological order. My World Book Dictionary says the word ‘portmanteau’ is a word made by combining parts of two words, a blend.

Missy Flossie is always telling me I have MALE – man crazy this one – but all she wants really is to see is what people are writing about. I said she could not spell. She means MAIL.

Can you believe these men-mad women are sending me emails and trying to sell Missy Flossie and me Viagra? Our relationship really does not need that kind of help thank you very much – please stop writing. We have found out where the ‘bounce’ button is but it does not help. Missy Flossie keeps bouncing these nasty emails back to sender back but they return again as a ‘no reply address’. Why do they do send these emails if you cannot get the stuff they are selling? What is the point trying to sell something with no sensible return address?
All Viagra sellers please note – we do not need your tablets.

Missy Flossie is my link to many friends and the outside world. We send emails to one another much more frequently than we ever did while writing letters to be posted. Just think of the cost and energy involved in sending snail mail. Now we have all this nonsense of what size is it – not what weight – and you get a 1st class LARGE stamp for how much, who knows? There is no sign of a price on the stamp. Is that not against the Trades Description Act? Will we soon be asking for a red stamp, or a blue stamp all without any value printed on it?

BRAIN GAMES
Also just as the typewriter aided my thinking so does the computer. As a young reporter in a man’s world writing stories and looking for by-lines (your name on a story), I could be found in the news room with a long American filtered cigarette burning away and a double size cup of tea going cold, seeking inspiration from my Underwood or Royal elite typewriter. Today the computer provides that same ‘spark’.

Except that these days the computer allows me to write what comes into my head. I can then move it around and makes sense after my creative urge is over– well that is what I hope. I am also supposed to be able to spell check but the problem is my software can only spell American words…. now you know why I cannot spell these days.

Before the computer age and this innovation, if your story was hand written there could be long lines drawn against paragraphs with arrows pointing, up or down, to where those words belonged – a nightmare. If we were writing up a story during a court hearing we would write on short pieces of paper. These pages would be un-numbered, so we could switch the story around if something vital was disclosed at the end of the case, or if we wanted to re-write the first paragraph to include the verdict. This happened if we had a deadline to meet and had to telephone the news story to a copy-taker – someone who typed news stories all day for a living. This enabled newspapers to carry late news and why they have editions. The further away you live from where the newspaper is printed, the earlier the edition you are likely to get. When on holiday in Spain you will get your daily paper but printed in Malaga – all the news is sent electronically to presses rolling in southern Spain.

Often the latest recruit to join the news agency that sent stories to all the national newspapers was asked to pretend to use a telephone box outside the courthouse. There were no mobile telephones in those days. The recruit would then vacate the telephone box for the senior reporter to phone his story while the opposition waited for a vacant telephone or a box which was not ‘OUT OF ORDER”. All part of the training we were told. You will get your own new recruit one day the editor said.

But the Internet changed all that and I imagine today reporters input their stories using a silent keyboard in situ and press a button for it to be sent wirelessly and without to much effort directly to the news editor’s computer.

One thing I have never suffered from is writer’s block. This is when you sit before a machine to write something and the mind goes a total blank. My head is always swimming with words and I am spoilt for choice when it comes to writing something down. If you happen to need one or two thousand words about anything or nothing in particular, and you can pay, you know where to come. Fortunately fibromyalgia has not had any effect on my vocabulary – except when I get fibro fog and cannot spell.

IMPORTANCE OF FRIENDSAs you grow more mature and especially if you are a fibromite, you do not seem to mix with as many people as you did when you were younger. The number of friends you have begins to diminish, as folks seems to be chasing the dollar and working longer hours to pay higher mortgage rates and ever increasing bills.

When you are at school you probably had 35 friends – the whole class – but as you grow up you drift apart and this might get down to two or three really good friends.

But we all realise everyone has their own life to live – chores to do – the school run, PTA meeting, the washing, cleaning, ironing, help with the homework – and somehow the day is almost gone without time to talk to your loved one – or him indoors.

This was my situation pre-fibromyalgia – my life was lived at 100 miles per hour – certainly I was breaking the speed limits with my lifestyle – and on reflection not doing my health a lot of good either.

But since fibromyalgia all that has changed. My ‘best’ friends from schooldays – Olive and Gwen – lives miles from me – not just round the corner – but we keep in touch – by computer, thanks to Missy Flossie. Since I went to school the world have become a “smaller place” and your friends no longer live next door but on some island somewhere in the middle of some ocean, or in France, Spain or the States. Sending a letter by post to the States take forever. Ringing a friend abroad if you want a good long chat, is costly, without Skype and you need a computer for that.

Eventually you fall into the trap of communicating only at Christmas – scribbling a few words on your festive card beside the sparkling Santa Claus or rampant reindeer, “Hope you and yours are well,” you scribble promising a letter will follow in the New Year, but it does not. You might moved house or had an operation or something else newsworthy – but what with postage strikes, the cost of postage and now all this rubbish about the envelopes being a certain size or it will cost you double – who wants to use snail mail. So you let it lapse.

You cannot even be sure the letter you struggled to put together will not land up in some poor person’s front garden – accidentally of course. I have received mail weeks after it was posted. It had laid on someone’s front door mat while they toured the world for three months on some large luxury liner. Thank goodness it was not a credit card bill or I would have been paying so many late payment charges and interest I might have been in the poor house by now – if there such a thing as a poor house. On reflection none of this could have happened if snail mail was more efficient or everyone sent emails.

While we are on the subject of keeping in touch with friends, I belong to a wonderful Yahoo group and receive delightful stationery and tags. On my birthday I received so many e cards from the group with lovely messages. The same happened when the gang found out about my stupid accident. These came from around the world. I also had a good number of Christmas e-cards too. Without the computer I would not have known someone in Mexico loves me.

So suddenly I have acquired a few more friends who I am able to write to and learn more about where they live and their life style. I also belong to a Fibromyalgia Support Group for Surrey & Sussex and gained some good fibromite friends from there. So my computer has also opened up a whole new world of friends – some who have commented on earlier articles I have written.

From personal experience when I was first diagnosed, like so many others, I knew nothing about the FM syndrome and I was thirsty for more knowledge about the progress of the invisible disability. Researching fibromyalgia on the Internet has been like a Pandora’s box – every site I opened was filled with things I did not know before. My parting thoughts about life before the computer are -

· Memory was something you lost with age
· An application was for employment
· A programme was a TV show
· A cursor used profanity
· A keyboard was found on a piano
· A web was where a spider lived
· A virus was flu
· A CD was a bank account
· A hard drive was a long drive on the road
· A mouse pad was where a mouse lived
· If you had a 3 1/2 floppy you hoped nobody knew (is that relevant?)

AND – Maxine, who appears in so many funny cartoons, says computers are the perfect things for women who do not feel that men provide them with enough frustration!

ALSO - Have you ever noticed the older we get the more we are like computers?
We start out with lots of MEMORY and DRIVE and then we become outdated and eventually have to get our parts replaced….

AND LASTLY - I am hoping to get one of these new computers that have airbags for when him indoors falls asleep in front of the machine.

On the Internet a whole new and different world opens up every day just waiting to be discovered. I even discovered I had two identical namesakes – one in local government in this country and another an American teacher. Missy Flossie sends her love – I told you she is man mad. Talk soon Happy New Year. Jeanne

Stress, depression high among Canadian peacekeepers

By Communications Staff

Thursday, December 13, 2007 Canada’s peacekeepers suffer similar rates of Post-Traumatic Stress Disorders (PTSD) as combat, war-zone soldiers, according to a London, Ont. research team.
Psychiatrist J. Donald Richardson and his co-investigators also found that PTSD rates and severity were associated with younger age, single marital status and deployment frequency.

Richardson is a consultant psychiatrist with the Operational Stress Injury Clinic at Parkwood Hospital, part of St. Joseph’s Health Care, London and a professor with the Schulich School of Medicine & Dentistry at The University of Western Ontario.

His team conducted a random, national survey of more than 1,000 Canadian peacekeeping veterans with service-related disabilities. The participants were below the age of 65 and had served with the Canadian Forces from 1990 to 1999.

The research, published in the Canadian Journal of Psychiatry, found a third of veterans deployed more than once suffered probable clinical depression, and 30 per cent of those deployed one time were affected.

The rates of probable PTSD were 11 per cent for those deployed once and 15 per cent for those deployed more than once. The authors also found peacekeepers were more likely to have PTSD and more severe symptoms if they were young, single, or had multiple deployments.

“This study has important clinical implications because understanding such risk factors can help predict potential psychiatric problems in veterans who have been deployed,” says Richardson.

“The high rates of depression observed in deployed veterans can have a significant impact when they seek treatment for PTSD because depression must be aggressively treated to help patients respond more effectively to psychotherapy.”

“Many veterans are also living and working in the community as civilians, therefore it is important that primary care physicians and psychiatrists become more knowledgeable about the emotional impact of military deployment and screen for possible PTSD,” says Richardson.

The Operational Stress Injury Clinic is funded by Veterans Affairs Canada and provides specialized services to help veterans and members of the Canadian Forces deal with PTSD, anxiety, depression or addiction resulting from military service.

ContactActing Publisher:
Ted Garrard (egarrard@uwo.ca)

Editor:
David Dauphinee (newseditor@uwo.ca)

Reporter/Photographer:
Paul Mayne (pmayne@uwo.ca)

Reporter/Photographer:
Bob Klanac
(rklanac@uwo.ca)

Advertising Coordinator:
Denise Jones (advertise@uwo.ca)

Off-Campus Advertising Sales:
Chris Amyot, Campus Ad (campusad@sympatico.ca)

National Advertising Representative:
Campus Plus

Phone:
(519) 661-2045

Fax:
(519) 661-3921

Mail:
Western News
Suite 360
361 Westminster College,
The University of Western Ontario,
LONDON N6A 3K7

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GULF WAR VETERANS NEED YOUR SUPPORT

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

Have you ever come across the R.E.S.C.I.N.D. website. Started in the 1990s by Tom Hennessy (now a very sick man who thought up the idea of an International Awareness Day – May 12) and his friends Nancy Solo, Paula Carnes, Maryka Ford, Lucie Dorais, Roger Burns and Chip Davis

It is important that I stress no copyright infringement is meant as this is not published for any financial gain, however I do have the permission of Tom Hennessy to use material from the websites.

But possibly due to Tom’s long and protracted illness the site has found a new home and appears to have been revamped. We wish you well Tom.

http://www.geocities.com/capitolhill/4277/

It appears this site is right up to date with the latest news about the problems associated with the Gulf War Syndrome and CFS/ME, FMS and other related problems thanks to Eileen Marshall and   Margaret Williams. I have apparently missed this news in my two newspapers. Perhaps I should give up reading the comic strips. But seriously….

Obviously a public inquiry relating to the Gulf War Syndrome has been rumbling on for some time and eventually the Lloyd Report from the Public Inquiry, carried out by the Rt. Hon. Lord Lloyd of Berwick, was published in November 2004. The brief was “To investigate the circumstances that have led to the ill health and in some cases death, of over 6,000 British troops following deployment to the first Gulf War, and to report on it.”

For more details of the report look at the Gulf War Illnesses Public Inquiry website.
http://www.lloyd-gwii.com/
According to the new R.E.S.C.I.N.D. website at ‘geocities’ above and Eileen Marshall and   Margaret Williams
http://www.counciloftruth.com/content/view/154/65/
The Ministry of Defence is to officially recognise Gulf War Syndrome after a 17-year campaign for justice by ex-military servicemen.

For 17 years the Ministry of Defence refused to recognise that Gulf War Syndrome existed. However, now Defence Minister Lord Drayson has backed down following pressure by Manchester peer Lord Morris. Lord Drayson said: 
“The issue of Gulf War Syndrome will be fully recognised by the Ministry of Defence and I accept on behalf of the MoD that this issue has not been handled well from the
beginning.

“The department was slow to recognise the emerging ill-health issues and to put measures in place to address them. We have apologised for this and I repeat that apology today.”

The belated apology has come too late for many servicemen. Thanks to government cover-ups many of these servicemen lost their lives for serving their country.

The website claims the Ministry of Defence are experts at covering up their failures and obstructing justice – now they need to follow the recommendations in the Lloyd Report and compensate the servicemen who suffered Gulf War Syndrome.     

Watch the video “Gulf War Syndrome – Killing Our Own”:
 If you log on to this website you can see the video.

http://www.counciloftruth.com/content/view/154/65/
Linking with this address you can keep the pressure on Gordon Brown too by signing this petition.

Before you do, it is interesting to read this website’s definition of the Gulf War Syndrome symptoms – sounds familiar?

GULF WAR SYNDROME (GWS)
Gulf War illnesses are a collection of disorders that for the most part can be
diagnosed and treated, if effective programs exist to assist veterans, and in some
cases their immediate family members. Although these illnesses are complex and have
multi-organ signs and symptoms, a proportion of these patients can be identified as
having Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and/or Fibromyalgia Syndrome (FMS).
Nicolson GL, Nicolson NL, Institute for Molecular Medicine

Log on to this address for access to the petition

http://www.counciloftruth.com/content/view/154/65/ and click where it talks about Gordon Brown and the petition. This will take you to
http://www.petitiononline.com/gwsdrb/petition.html%20 In the Search box type Gulf War Syndrome Petition and click Search
This will reveal a number of on-line petitions but the one you want is the first one
“Gulf War Syndrome Implement the Recommendations of the Lloyd Report” and this will reveal the petition. It takes no time at all and you are asked to verify your signature. So easy all on line.
http://www.petitiononline.com/gwsdrb/petition.html
Do remember these lads are fellow sufferers who fought for their country. They need our support. I believe it has been running about 5 weeks and it has a poor 95 signatures. We can do better than that, can’t we?
The Petition is also on Facebook as a Group at
http://www.facebook.com/group.php?gid=5383334893
It reads:
To:  Gordon Brown, British Prime Minister
******************************
Petition British Prime Minister Gordon Brown to implement the recommendations of The Lloyd Report on Gulf War Syndrome ******************************

The gauntlet laid down for Gordon Brown:

Some 250,000 of the returning allied forces from the first Gulf War in 1991 (15 per cent) went down with illness that they insist was related to their service in that war. Of these, 10,000 are already dead.

Successive governments over the years have refused to recognise the existence of a single condition called Gulf War Syndrome and so the impasse continues.

On 14 June 2004 it was announced that there was to be a Public Inquiry into the illnesses suffered by veterans returning home from the first Gulf War.

This public inquiry was chaired by The Rt Hon The Lord Lloyd Of Berwick and on 17 November 2004, the inquiry published its report -The Lloyd Report on Gulf War Illnesses, commonly referred to now as The Lloyd Report.

The following are the 3 R’s of The Lloyd Report that Gordon Brown needs to accept:

1. REALISATION – realisation it IS Gulf War Syndrome
Paragraph 283 of the Lloyd Report:
283. It seems to us that with the termination of any legal proceedings against the MOD, and with the results of the three epidemiological surveys to hand, now is the time to reach agreement with the veterans. This was the strong thrust of Lord Craigís evidence. The MOD could initiate the process by taking the following steps: -
(1) The MOD should acknowledge publicly that the veterans who have made
claims (other than the 272 who have had their claims rejected) are indeed
suffering injury or disease as a result of their service in the Gulf.
(2) Since the name of the injury or disease is only a label for wrapping the
symptoms from which the veterans are undoubtedly suffering, the Ministry of
Defence should accept the name favoured by the veterans, i.e. Gulf War
Syndrome, as the most convenient label.

2. RECOMPENSE – Recompense Veterans

Paragraph 283 of the Lloyd Report continues:
(3) The MOD should set up a fund out of which ex gratia payments should be
made on a pro-rata basis to all those who have made successful claims.
(4) The 272 Claimants who have had their claims rejected should have those
claims reviewed in the light of this report.

3. RECOMMENDATION – The Government needs to follow the Recommendations of The Lloyd Report

Paragraph 224 of the Lloyd Report:
…. the picture is already sufficiently clear to enable the MOD to acknowledge forthwith that the illnesses of the Gulf War veterans, who have had their claims accepted, are attributable to their service in the Gulf. To wait for further research into the pathology would, after fourteen years (***now 16 years***), be a denial of justice to the veterans.

Is it no wonder that Dr B has been in touch with Sir Sean Connery, Jerry Weintraub, SKG and others with A View To A …Film! What happened to Nixon after Watergate and All the Presidents Men?

This year we have seen pressure on the Government as follows:
*28 January 2007: Wartime “forces sweetheart” Dame Vera Lynn branded the “endless” legal wrangling over payments to veterans of the first Gulf War a scandal. Dame Vera and ex-Formula One champion Sir Jackie Stewart wrote to the then Chancellor, Gordon Brown, accusing the Ministry of Defence of “haggling”.

*8 May 2007: A recent poll of 121 MPs from all parties found that more than 70 per cent thought that the Government’s actions towards ex-Service people suffering from Gulf War Illnesses had been very poor or inadequate.

The Lloyd Report resume also nails the need as follows:

“10. We come last to the question of compensation. This did not figure largely in the evidence of the veterans themselves. But it figured in the evidence of Lord Craig, Major General Craig, Paul Tyler MP, Michael Mates MP, Colonel Terence English and others. Lord Craig (Lord Craig of Radley, Marshal of the Royal Air Force, Chief of the Defence Staff throughout the Gulf War) said that the absence of closure after so many years was now indefensible. ‘A little magnanimity’ was called for, and an ‘imaginative one-off approach’. Mr Mates told us that what was needed was a political act of will.

“A minister has to say ‘this will be done’ and then it is done.”

We call on Prime Minister, Gordon Brown, to intervene now, without further delay

If you wish to call on Gordon Brown for “a little magnanimity”, to implement the recommendations of The Lloyd Report, then this is the petition to sign!
Sincerely,

The Undersigned

I believe this is just wonderful news and I really hope it does materialise. Let us also hope this a precedent and will bring benefit to our soldiers who are currently at war elsewhere on our behalf.

There is lots more to read on the Internet if you type in Gulf War Syndrome petition.

Please sign now – tell your friends, family, everyone you email, stir up some magnificent support. Our troops deserve our backing – it would seem the Government has been slow in giving them any backing.

Do it now. I have.

Jeanne

Additional Information:

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