CO-PROXAMOL WITHDRAWAL DEBATE COMMENT

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

Dear lori763 from Florida

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

It was difficult to reply to your comments in that tiny box so I decided to put my thoughts down in a follow up article. Thanks for your support and for the link to Jill Atwood‘s article to be found on the above link. Your comment said:

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 info. purposes.

I am wondering if Jill Atwood is a spokesperson for the pharmaceutical industry. Under the guise of factual reporting, she 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 offhandedly mention a minor detail a.k.a. “side effects”? Also, she failed to mention that this drug is simply treating the symptoms and does not address the cause of fibro.

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 fibro 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.

Before you say something about all journalists sticking together – what Jill Atwood has to say about fibromyalgia is all very true and given the press release from Pfizer who make lyrica I might have written the same story. There are perhaps two exceptions. The Pfizer Company does confirm that this drug does not suit everyone; I feel Jill’s report is fair as she does quote patients as saying this. Lyrica had been used earlier for other health problems and was not a ‘new’ drug in the true sense of the word.

But I guess the comments you are referring to are those made by Jill Atwood which said: “Also there is another warning about all those herbal remedies and ‘cure-alls’ you find on the Internet for fibromyalgia and CFS. If they are tied to profit, be leary.”

I think she means leery (cautious) unless the American spelling is different.

I might have said, “SOME of those herbal remedies” but in the heat of the moment – given the pressure of deadlines and all that – it is easy to make a slip. If no one made mistakes what would we have to talk about. I have made mistakes in papers – followed by apologies in print. My fibro fingers often misspell a word although I know perfectly well how to spell in the cold light of day. What is more soul destroying is that you read and miss your own mistakes. You must have seen some of those silly road signs and stupid posters with errors. Later you think – if only…..I could be perfect.

Back to the plot – the feed back I have received was that in general the UK fibromites were delighted that lyrica had been given recognition for FMS albeit by the America FDA, as the FIRST drug to be prescribed for fibromyalgia. It was also felt that this would open the floodgates and that other researchers and manufacturers might follow and offer additional medication for fibromyalgia. If you look at ‘fibromyalgia drugs’ on the Internet you would be amazed at how many drugs are available to treat different symptoms of FMS – but none to cure so far.

I had heard it said that while fibromyalgia remained relatively unknown and doctors could not diagnose FMS, it was not financially viable to introduce a new FMS drug. I suppose some may ask am I working or speaking for a drug company while trying to raise awareness. The answer is no. I am anxious to educate our doctors, medical students and the public about the problems we suffer while enduring fibromyalgia with no cure. The lack of recognition given by the UK Government who fail to provide funding for research is another bone of contention with me. I could go on and on about the ‘corridors of power’ but I won’t.

As you say manufacturers are obviously in business to make a profit. So are people who make cars, sell clothes and supermarkets. But whether it is herbal remedies or an approved FDA drug you would not expect them to make a product, which will not meet the claims they make to sell the product.

Many months ago I wrote a story about someone who had taken lyrica before it was an approved fibromyalgia drug. She moved from being in a wheelchair with deep depression, and not talking to anyone to cycling and dancing weekly as well as coping with her housework and enjoying life. It took a while to find the dosage that suited her but it was a success in the end. Lyrica worked for her but I have also heard from others, in the wake of that story, who said it did nothing for them.

I have spent the last five years (since my diagnosis with FMS/CFS in 2002) doing research into this invisible disability. I believed FMS/CFS took my life away. I was angry. I truly believed I would never walk again. But within a year, without drugs, I was back at work, albeit part-time, had my self-respect and confidence back and was living with my disability. I sound like “a testimonial” but it is true.

During my research I must admit I do find it very frustrating when I am led onto a site with promises of this and that – not only to do with FMS/C FS – but all things – only to get to the small print and BUY ME. Even so I do manage to get some free advice and I do sometimes learn something.

WHY DO I DO IT?

For 1,211,740 UK fibromites (2% of the UK population and mainly ladies) and other fibromites in the world– that is why I am writing these articles. Not sure if they are all reading them – certainly not all at once – but I sure hope so.

But let me reassure you, I am here with my weblog as a labour of love, self-preservation and for my heath. I love to write – I hate fibromyalgia and the chronic fatigue which stops me half way up the stairs – and I have a passion to raise awareness when folk say ‘Fibro what?” Also I am being driven by my passion to finish this self-help book and publish it to enable the sales money to go to research. See:

http://pain247.wordpress.com

I have said I am working with this book to help find a cure. But someone asked me what part of the syndrome would I cure if I could? That was a loaded question as there must be at least a dozen different kinds of pains and symptoms, which we all suffer.

Apart from the FMS pain, the fatigue of CFS/ME, the brain fade, myofascial pain, sleeplessness, headaches, backache, tingling, dizziness, stiffness, difficulty walking, irritable bowel syndrome, TMJ (jaw problems), restless leg syndrome, and some have lupus, Lyme disease, cystitis. I am sure I have missed some. Sorry am I boring you – of course you know all this. Hopefully your family might read this and understand just what disabilities you are really living with – why you cannot just run the cleaner round, quickly run upstairs for something, why it pains you to wash up, the problems with trying to get to the shops, doing the washing, why you stay upstairs, and more.

There are so many symptoms and pains that I decided the book should be called Pain 24/7 The Fibromyalgia Jigsaw © and you would be amazed just how many pieces there are in this book jigsaw. Lots of jigsaws have 100 or more pieces not that I am aiming for that many, but you would be surprised. I started out with one topic – fibromyalgia – now I have dozens of problems that live with FMS that I am writing about.

When I wrote the recent article about the UK debate on the withdrawal of co-proxamol, I really had no axe to grin with the manufacturers of this drug, or taking medication or herbal remedies.

It is not because co-proxamol cures anything and everything that I wrote the article, but because it makes living with pain a lot easier. Especially for me with my added problems of 4 fractures. The 72,000 people, who it is said use co-proxamol in the UK, should be reminded they are about to lose this 50-year-old painkiller if they do nothing about it.

It may already be too late. Our newspapers and TV news channels are full of mistakes made by our Government and the political health of our Prime Minister, so what chance does co-proxamol have of getting into the headlines or even into the House of Commons…certainly not this week. These are not a good days to get into print with more bad news… I know how it works. A big story is a wipe out for every other hopeful … and the next day it is yesterday’s news … old hat.

TRYING TO LIVE WITH IT

But truthfully we are all trying to find a way to live with our fibromyalgia and long-term pain, whatever way you look at.

With regard to ‘other’ remedies, some folk believe nutrition is the answer – what we eat is what we are. They claim you can change your lifestyle and avoid this and that and have little or no pain. Others talk about getting rid of your stress overload – which is a major problem and is responsible for a lot of sickness. There are fibromites who believe that low-grade aerobic exercises and walking will help. Some people write to me and say they are taking a cocktail of medication.

You must consider that if you go to a dentist with toothache you expect him to fill it or take it out to stop the pain. If you go to a doctor with aches and pains, he knows you expect him to alleviate your problems, and he will give you medication. It really is your choice if he says the cause is fibromyalgia. You can take the drugs he offers to relieve the pain, which is not a cure FMS, or live with. How you choose to deal with your FMS/CFS/ME or pain must be your choice. Your must have faith and trust in whatever you are doing to feel better.

THE WAY IT IS

In the past when doctors have said fibromyalgia is imaginary and it is all in your head – they were half right. It is no longer thought to be a problem for muscles and joints. It is well known that part of the problem with diagnosis is that blood tests show no markers. Also x-rays and scans reveal no inflammation where it hurts.

And yes it is in your head – all to do with a chemical imbalance. I have heard specialists at a conference confirm that the brains of fibromyalgics are wired differently to others and it has everything to do with the release of chemicals in the brain that trigger the pain. You might say too many bad guys and not enough good guys.

Here I feel I must say I have no medical training – this is what I have been told and what I have reported. It may be no use checking this with your own GP as he may still believe it is all in your head and he may be secretly thinking you are a mad malingerer – but I know you are not. I know there is a real pain in your arm, leg or even your butt. Trust me I am a fibromite.

So far I have not taken lyrica and have no wish to. Yes I have pain and days when bed is the only place I can find any comfort – but I am a rub-on-gel-gal. I am told what you rub on skin does not get in your blood stream and I am happy with that. I could be wrong! I have got enough problems without irritating my blood stream. I know the pain relief is only temporary but in reality anything that helps with fibromyalgia and its cohabiting nasties, even for a short time, and does not upset my stomach, is worth a try. I must say that my doctor prescribes my gel. I take co-proxamol when I am in serious pain.

You take an aspirin – or co-proxamol – you need to take another in so many hours. You take a dose of medicine for fibromyalgia – it is the same – repeat the dose. Deep down we all know so far there is no known cure – just medication to fight the pain and help you sleep.

YOUR CHOICE

So the truth is we do not know how to cure fibromyalgia, chronic pain, ME or some long term chronic illnesses. We are struggling – looking for a cure. If you find something – a rub, a tablet, a drug and if you and your doctor have agreed this is what you want to take – whether it makes the drug manufacturer wealthy, or the doctors get perks for the surgery from the sales reps if they recommend this drug – who knows and who cares – go for it. As long as it works for you and stops the pain, consider it. This is the way of the world and if it makes you feel better and more able to cope then this is the choice you have to consider. There is no such thing as a free lunch – everything has a price, even good health.

WHAT I DO

How do I live with fibromyalgia – work and positive thinking? I love to write. While sat at a computer I am using just a little energy but lots in the old brain box and this action appears to stop the PAIN GATE opening. If I am stressed, maybe cold or working towards a flare, my brain may send out signals to say ‘Let’s have a pain in the leg today’ – just where there is no inflammation or reasons for a pain in the leg and suddenly the pain gate is open and I feel pain. The problem is controlling the pain gate.

The brain and the pain gate have a lot to answer for. From experience, if I can keep my brain busy and the pain gate closed – this is my theory – I know I will feel a whole lot better. I achieve this by doing something I am capable of and which I enjoy. This keeps the brain busy and occupied. Visualisation and meditation work the same way by keeping the mind busy chasing colours and reliving happy memories.

I have been known to suggest fibromites should look at the children’s joke books, find something to laugh about (yourself in the mirror pulling funny faces), the old wedding photograph, run a favourite film on the video – read your favourite book…anything which will concentrate your brain and help you to close the pain gate. It has to be something you feel good about – forget looking at the bills – that won’t make you want to laugh. Remember think positive.

There are schools of thought who believe you can laugh yourself better – they say laughter is the best medicine. In the States and Australia they have laughter clubs – you go regularly to have a real good laugh which is apparently as good as an aerobic work-out.

Regarding co-proxamol I take them and apparently so do 72,000 others in the UK. I just wanted folk to know they are in danger of losing their supply unless they did something like writing to the Member of Parliament who has the power to reverse that decision.

So yes lori763 from Florida, I hope this explains why I was so passionate about co-proxamol. I had received a number of letters asking me to help save this painkiller, which oddly enough was already on my repeat prescription.

I agree the drug companies are in it for the money, but then so are the folk who manufacture food, clothes, cars, televisions – it is a fact of life. I feel passionate about helping anyone I can with FMS. But I also feel prescribing medicine is for the doctor (not the Internet). He will consider the patient’s other ailments such as`a dodgy heart for example.

I recently heard you can overdose by taking additional vitamins and I know this also applies to some of the complementary herbs. Try the Internet or look at

http://www.vitamins-nutrition.org/vitamins/vitamin-overdose.html

There is a lot of useful information but there is a small ad suggesting you buy something…but there is no obligation.

You really should seek medical advice at any time you are thinking of making a chance to what you are taking. So yes maybe we should be careful of SOME of these all-singing-all-dancing quick fixes we read about. How do we know the testimonials are true? I leave you with that thought.

Take care and keep well and best of all, think positive and be happy. Log onto the Internet and ask Google for funny jokes. I found 10 pages of them. Have fun. That will help I am sure. You just will not have any time to be ill.

Jeanne

FOOD FOR SKINNY KIDS – A STORY WHICH NEEDS TO CIRCULATE FOREVER

by Jeanne Hambleton © 2007
NFA Leader Against Pain – Advocate

Maybe I should mention that you just might need some kleenex tissues before you start this story but please read it anyway, if only in the spirit of Goodwill to All Children. The men are big enough to look after themselves.

As folks in the UK were getting ready this morning to do some Christmas shopping an email arrived on my desktop with a warning, which said,  “This email needs to circulate forever.”

How could I pass up this invitation to inquire within? The email also stated, “This is a real eye opener. A real tear jerker No prerequisites (commitments).  Simply, because everyone should be reminded.“

This was sent to me by a lady from Montevideo, Uruguay called Marta. Where the pictures, shown in the email, were taken, it does not say, but I am sure it conveys a worldwide message, especially within the African continent.

by Jeanne Hambleton © 2007
NFA Leader Against Pain – Advocate

Maybe I should mention that you just might need some kleenex tissues before you start this story but please read it anyway, if only in the spirit of Goodwill to All Children. The men are big enough to look after themselves.

As folks in the UK were getting ready this morning to do some Christmas shopping an email arrived on my desktop with a warning, which said,  “This email needs to circulate forever.”

How could I pass up this invitation to inquire within? The email also stated, “This is a real eye opener. A real tear jerker No prerequisites (commitments).  Simply, because everyone should be reminded.“

This was sent to me by a lady from Montevideo, Uruguay called Marta. Where the pictures, shown in the email, were taken, it does not say, but I am sure it conveys a worldwide message, especially within the African continent.

Picture 1. shows European students sat at computers working, with the caption, “Does studying annoy you?”
Picture 2. reveals children, possibly from Africa, without shoes, sat on a bench and drawing their lessons in the dirt with their fingers. The caption says, “ Not them!”

By fmsglobalnews

Picture 3. is a happy family picture of a father with his daughter enjoying a beef burger roll with the words, “Hate veggies?”
Picture 4. is a picture of a long line of mothers and starved children, clothed, in rags and waiting in line with a bowl for some food handouts. This caption says, “They starve from hunger!”

By fmsglobalnews

Picture 5. reveals the back view of a jolly obese child having fun, with a caption which reads, “On a diet?”
Picture 6. child with a tape measure around the child’s matchstick thin arm. The caption referring to diet says, “They die from it!” Or the lack of any kind of diet.

Picture 7. shows a baby being cuddled by a parent revealing the lovely cuddly cheeks of a child’s bottom. This reads, “Does your parent’s care tire you?”
Picture 8. shows a sibling cuddling a child with the last bone in the baby’s spine clearly visible as she rests in sister’s arms for comfort. This caption tells us these children have no parents to grow tired of. “They don’t have any!”

By fmsglobalnews

Picture 9. reveals youngsters sat at a games console and states, “Bored with the same game?”
Picture 10. Shows a young unclothed child playing in the dirt with a bit of stick, next to the human skull of someone who had probably died from starvation. The caption reads, “They have no option!”

Picture 11. shows a smart new trainer with a caption which reads, “Someone got you Adidas instead of Nike?”
Picture 12. pictures the feet of a child with half of a plastic bottle cut to make the sole of a pair of sandals. The picture clearly reveals the screw top of the plastic bottle on the footwear, which is tied onto the foot with rag. This caption states, “They only have one brand?” Maybe it is cola?????

By fmsglobalnews

Picture 13. is of a sweet little girl in clean pyjamas snuggled up in her cosy bed. This caption reads, “Aren’t you thankful for a bed to sleep in?”
Picture 14. The final contrast picture shows a child laying in the dirt, half covered with a piece of old rag, trying to sleep, with a caption that reads, “They’d wish not to wake up!”

By fmsglobalnews

The closing slide asks, “Are you still complaining? Observe around you and be thankful for all that you have in this transitory lifetime…. We are fortunate to have much more than what we need to be content. Let us try not to feed this endless cycle of consumerism and immortality in which this ‘modern and advanced’ society forgets and ignores the other two thirds of our brothers and sisters. Send this information without any obligation or expectation in receiving good luck. Don’t keep it! Send it and it won’t be in vain. Let us complain less and give more!”

I imagine you feel as I do. I work hard for my dollar and I do not believe in sharing my hard earned cash with large charities who have magnificent offices, managing directors, hundreds of paid staff and devote just a fraction of their donations to their ‘good’ works. You can call me the woman with the long pockets if you like, but I want to know my money is going where it will doing some good and helping those would really need it. How to be confident about that I am not sure? In true Scorpion fashion I hate to be misled or deceived.

Quite how we can help these starving children is the burning question. I have had masses of appeals for all sorts of charities drop on my doormat in recent weeks. At least these ends up in the local hospice waste paper recycling skip and help them a little along with our papers and magazines. I looked on the Internet at our UK BBC Children in Need but could not see children in a similar situation.

SAVE THE CHILDREN

The UK Save the Children organisation has produced a Christmas shopping catalogue, on line, so should you decide to buy Christmas gifts from them you are indirectly donating while shopping, just how much remains to be seen! Perhaps this might be more acceptable – buying and giving at the same time. It is easy to look at this site to see the work they are doing and possibly shop with them. Every Christmas I seem to receive more and more cards printed by charities and sent by to me by friends.

http://www.savethechildrenshop.co.uk/home

However I should mention that if you telephone their UK number – 0844 557 5425 – instead of ordering on line, it could cost you 40p a minute as you give your details and make your mind up. Some of that money will be going to the charity.

Our doctors’ surgery is using this 0844 prefix number and getting a rake off which is a bit vexing considering how much our GPs are reported to be earning – but that is another story.

No – I am not a sales rep for any charity – just a concerned parent. No, this is not a commercial for children’s charities – it is a wake up call.

The American Save the Children website also appears to have a programme for under privileged children in developing countries, who are suffering from hunger and poverty. It seems you can also purchase festive gifts from them indirectly helping the cause.

http://www.savethechildren.org/

What you decide to do is between you and your conscience. I would however like to leave you with these thoughts.

These pictures and words certainly do bring you down to earth especially when you consider the wastage by governments the world over.  I am just sorry I could not reproduce the pictures but I am sure you know the kind of scenes I mean – you must have seen them on TV from time to time. Send me your email address with the request for these pictures if you would like them forwarding.

Just consider the money all of the worldwide governments squander… it is time someone added the total figure and gave us some home truths.

These starving children, if they live, may be our next generation – our future leaders. Do you think if they survive they could be future terrorists? I am sure they will have a grudge against the world – surely they will feel the world owes them a living. This is all very sad and really makes you think. Whatever happened to the innocence of childhood?  

Just imagine what we spend on consumerism not to mention what we will spend on our own children this Christmas 2007. I wonder what our children would think if we put these pictures under the Christmas tree on Dec.25 instead of a new bike, a new game toy and all the other things children of our modern world expect to receive from their parents aka Father Christmas?

What would it be like if children all over the world went without just one toy from their festive gifts in aid of the starving and poverty stricken children. It would take a lot of organizing to gather in that money and it is a huge task but it could be done – all it needs is a good website supported by reliable well known people…. even if it took until Easter to collect the money – the children would still be starving.

Where are you Bob Geldorf? Can you help us with this? Does someone know his email address? My mind is boggling at the power of the people…… How about Skinny Kids for a campaign title – that rather sums it up!

Just a thought – maybe if that £5 we would be spending on a nonsense stocking gift for someone who has everything, was replaced with a warm note telling them Christmas is for children – starving children in particular – and they would be receiving his gift money with a tax gift aid. Sorry but this has been sent to starving “Skinny Kids” who have nothing.

I would hope we would get a really warm hug for this initiative. This friend really did not need an air freshener toy for his car or a key ring. If we did not get a big hug that receiver is a Christmas Meanie…. Take it from me. We will cross him off our Christmas list in future – so there.

Sorry to be a party pooper – but someone has to do it.  I will make up for it and send you some happier stories in the near future.

Take care. Jeanne.

FOR IMMEDIATE PRESS RELEASE

December 13th, 2007 Meeting

The FIBROMYALGIA and CHRONIC FATIGUE SELF-HELP GROUP will meet Thursday, December 13th, 2007 at 6:00PM at Quest-4-Life Wellness Center for a Potluck/Covered Dish Christmas Party! There will be drawings for Door Prizes that reduce Stress, Fun, Food, and Fellowship! Entertainment will be provided by Deborah Greene and her children. Please bring your favorite, EASY dish (store-bought is OK) and your Christmas Spirit! New members, family members, friends or those interested are always welcome. You do not need a diagnosis to attend. The Fibromyalgia and Chronic Fatigue Self-Help Group meets monthly except July and August. It is run by the members on a donation basis only and Quest-4-Life donates space for the meetings. The focus is on Positive Self-Help for members. January’s meeting will be Thursday, January 7th, 2008 at 7:00PM at Quest-4-Life. For more info, call Lindy Wilcox at 828-754-2064 or Nancy Clay at 828-758-2156.

“In everything give thanks for this is
God’s will for you in Christ Jesus.”
I Thess. 5:18

Good morning Members of Parliament

by Jeanne Hambleton © 2007
NFA Leader Against Pain – Advocate

I have taken the liberty of writing to you as you have either shown an interest in the withdrawal of co-proxamol and/or fibromyalgia by questions in the House or you are a member of the APPG for Fibromyalgia. Thank you for your time.

I would ask you please to log on to the address below, consider the article and the comments at the bottom which have appeared in the first 24 hours of posting. Thank you. If you have any questions I am happy to answer them. If you have any comments I can print, I would be more than delighted to use them as given. Many thanks.

http://fmsglobalnews.wordpress.com/2007/11/26/co-proxamol-uk-withdrawal-debate/#comments

For the record you can Goggle me. I am a UK journalist FMS, diagnosed 2002. Since that time I have been prescribed co-proxamol to help me deal with the pain and disability. Very recently I fell and have 3 fractures of the pelvic bone and a fractured wrist. I am prescribed bed rest for 3 months to allow the bone to deal, no weight bearing and living on the maximum dose of c o-proxamol for almost two months to deal with the constant pain plus fibromyalgia. .

I have been following its ‘descent’ of co-proxamol over the past months and now worry if M&A, who appear to be the main manufacturer making the painkillers I am prescribed, will be carrying on after January 1st. I am not due to end my bed rest until the end of January.

The comments in the co-proxamol story (found at the above address) raise several important questions for fibromites, those who suffer with CFS/M E, arthritis, long term chronic illness and the other 72,000 who have used this safe 50 year old painkiller. What has changed? The people who commit suicide? There are hundreds of drugs folk could use to do this – why ban co-proxamol…especially now, according to a certain new book, it seems poor Dr Kelly did N OT take an overdose of these capsules.

If our doctors are unwilling to prescribe this pain killer for risk of legal action, is it not possible that the last manufacturer will find it uneconomical to continue producing this drug for a small minority who have persuaded their doctors to prescribe because they are reliable, sober, and in serious pain. .

We do need a review of this whole ridiculous situation. Can it be made available under normal prescription again if patients sign a disclaimer to abide by the dosage and alcohol requirements?

PLEASE can you raise it in the House of Commons again – Gordon Brown has made enough mistakes by himself – he does not need this one as well. The nation will be even more miserable than it is now with 72,000 patients suffering from withdrawal symptoms due to the disappearance of co-proxamol. Even Arthritis Care agree with me.

Thank you for your time an I look forward to receiving your comments.

Kind regards

Jeanne Hambleton

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

CO-PROXAMOL UK WITHDRAWAL DEBATE

by Jeanne Hambleton © 2007 – Fibromite
NFA Leader Against Pain – Advocate
Dateline: November 2007

(This is a long document for which I make no apologies. It has entailed much work but it is my hope that readers will be encouraged to take action. No copyright infringement is intended as this is not written for financial gain but for guidance and in the hope of some action and hopefully ‘without prejudice’.)

The painkiller, which so many UK fibromites and millions of other people rush to take to relieve pain, co-proxamol, is scheduled to be withdrawn from general prescription from New Year’s Day. Only named patients, who have tried alternatives and failed to find relief from other drugs, will be considered by some GPs for a special prescription. It is hoped this may continued after the end of 2007 subject to the availability of stocks, as some manufacturers have already stopped producing this drug.

As a writer and reporter I claim no medical qualifications but to help people understand the problems surrounding the distribution of co-proxamol, or lack of it, I have drawn together, from a number of sources, background information and comments from those who have a special interest in the withdrawal of co-proxamol.

Already many patients are being told that this medication can only be prescribed under special circumstances – your GP must decide you are a suitable and trustworthy patient and that you will read and abide by the instructions. Alcohol and co-proxamol are literally a deadly combination and can be fatal. This is the reason given by the “powers that be” for withdrawing co-proxamol, which is a combination of the analgesics, dextropropoxyphene and paracetamol. There is little doubt that by the end of the year obtaining co-proxamol on prescription may be more difficult – unless things change. I am told that some years ago paracetamol faced withdrawal in a similar battle – which was won!

HOUSE OF COMMON DEBATE

Many people who take co-proxamol have been complaining about the withdrawal of this painkiller, which was highlighted in the House of Commons in a debate way back in 2005 following an announcement in the press early that year. The debate appears to continue with no solution in sight as we enter the final stages of withdrawal – one month away.

In 2005 according to the Hansard report on the debates in the House, Anne Begg, Labour MP for Aberdeen South, called for an Adjournment Debate on the availability of co-proxamol. The MP said she had a personal interest as she had been prescribed these tablets for some years and took four a day. A number of her constituents who relied on the drug had contacted her about the withdrawal – hence the debate.

Hansard reported that Anne Begg spoke about specific patients who relied heavily on co-proxamol. In some cases the painkiller was the relief that enabled patients to carry on working, sleep well and keep mobile. She related stories with which many of you will be familiar – patients being taken off co-proxamol and given alternative painkillers. Patients found they were unable to sleep well, felt unwell all the time and were unable to continue at work.

The MP told the House that the drug was not being withdrawn because it was ineffective – those using the drug found it very effective. It was not due to side effects – patients felt it gave them less problems than alternative analgesics or other drugs. Co-proxamol had not been connected with the incidence of strokes, heart attacks or other major health problems.

The then Secretary of State for Health had confirmed to Anne Begg, “That some people might abuse the drug and use it to commit suicide,” said the Hansard report. The Department of Health claimed between 400 and 500 suicides annually were connected with co-proxamol.

The MP reported that all drugs carry some sort of risk, which in theory could mean practically every drug would be unavailable. Those relying on co-proxamol were upset that the drug had been singled out for withdrawal. Anne Begg said there had been a similar debate about paracetamol several years earlier and this remained controversial for a long period.

Co-proxamol users claimed this drug was superior and that it led to a feeling of wellbeing. It was said this was due to destropropoxyphene, which is used in the medication.

Anne Begg said GPs were recommended to prescribe paracetamol or a non-steroidal anti-inflammatory medication such as ibrufen. However ibrufen was not without risks for those with gastric problems. The alternatives went on to include a very strong analgesic, which has severe side effects to amytriptyline, a drug often prescribed for patients who have been involved in suicide attempt.

News of the withdrawal of co-proxamol was originally announced in January 2005 but it had taken six months for this to be debated by MPs. Anne Begg claimed this was because patients who had been offered a change in prescription had taken time to discover the alternatives did not work. She made reference to informed choices and referred to other drugs effective in dealing with arthritic pains and fibromyalgia, that had been withdrawn due to other dangers to health.

The MP said although she did not normally go against medical opinion, with co-proxamol she felt the Government should reconsider the advice of one of its committees. She expressed concern and recommended the Government should review the prescribing arrangements for co-proxamol and asked why some responsible patients should be penalized. GPs should be able to prescribe co-proxamol to a patient who was aware of the risks if misused or left accessible to others. It was suggested a change in the packaging in smaller quantities could help – this had been done with paracetamol. A strip of 10 tablets might be considered an overdose, where eight co-proxamol would be safer said Anne Begg.

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.

IN RESPONSE

Hansard reported that the Parliamentary Under-Secretary, Department of Health, Caroline Flint said the Department had, at that stage, received 130 letters from Members of Parliament writing on behalf of their constituents.

Caroline Flint claimed the co-proxamol decision was made after a full risk-benefit assessment, extensive public consultation and with the Committee on Safety of Medicines advice. Other specialists and experts were invited to comment including the Government’s Independent Scientific Advisory Committee on Medicine Safety. The Parliamentary Under-Secretary said co-proxamol, that was said to be very toxic, could result in an overdose from only a few tablets beyond the recommended dose. Patients could die before they arrived at hospital, as unlike paracetamol, there is no antidote for co-proxamol poisoning.

There had been a comprehensive review in 2004 by the Committee on Safety of Medicines, said Caroline Flint and the public was invited to provide comments on the advantages and risks over a 12-week period. Hansard reported that many large organisations including healthcare professionals, patient groups and stakeholders had received letters. Having considered the evidence the CSM felt the risks outweighed the benefits and manufacturers were recommended by the MRHA to withdraw the drug over a period of 36 months – by December 2007.

Caroline Flint reported a reduction in the amount of co-proxamol being prescribed, with the 50% of the total reduction made in the first six months following the announcement about the withdrawal. It was reported by Hansard that one doctor had decreased the number of patients using co-proxamol from over 400 to just 20 but the GP did acknowledge there was currently no acceptable option for this small minority of his patients.

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.

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”.

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

Hansard (the Official Report) is the edited verbatim report of proceedings in both Houses of Parliament. Reports contain Written Ministerial Statements and Written Answers. Daily Debates are published on the following website the next working day at 8 am. http://www.publications.parliament.uk/pa/pahansard.htm

ARTHRITIS CARE

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
http://www.arthritiscare.org.uk/Campaigns/Currentcampaigns/Co-proxamol states

The Arthritis Care website shows that MPs Anne Begg and Howard Stoate are working with the organisation to press for a review on the withdrawal of co-proxamol.

Reporting on the current situation the campaign website states, “The MHRA anticipates that after 2007, co-proxamol will be available on a ‘named patient’ basis only, subject to stocks.

THE BACKGROUND AND PLAN OF ACTION

When the MRHA announced the withdrawal of co-proxamol on January 31 2005 it was stated, “A recent consultation looking at evidence for the safety and effectiveness of co-proxamol found that the benefits of the medicine did not outweigh the risks and that it should be gradually withdrawn from clinical use. Co-proxamol is associated with 300-400 intentional and accidental fatal overdoses each year.”

It is estimated that 1.7 million GP patients each year receive 7.5 million prescriptions for co-proxamol.

At that time the Chairman of the Committee on Safety of Medicines (CSM), Professor Gordon Duff said, “Co-proxamol will be phased out of the market place gradually to give patients time to discuss their treatment with their doctor and change to a suitable alternative. There is no need for panic or concern and if patients have been taking co-proxamol continuously for a long time they should not stop without consulting their doctor.”

In January 2005 the Chairman of the Medicines and Healthcare products Regulatory Agency (MHRA), Sir Alasdair Breckenridge said, “Whilst the risks of co-proxamol are well known to health professionals, the latest evidence is that the measures to strengthen the labelling of co-proxamol have been ineffective in reducing the high fatality rate involving both intentional and accidental overdose. The MHRA and CSM have considered further evidence gathered during a public request for information on the risks and benefits of co-proxamol and have decided that the benefits of the continued availability of co-proxamol do not outweigh the risks and that co-proxamol should be withdrawn from the market.”

At the same time The Times newspaper reported it had learnt and printed the following,

“One of Britain’s most commonly used drugs is to be withdrawn over concerns about the high risk of accidental death from slight overdose and its frequent use in suicides.

“Co-proxamol, prescribed to hundreds of thousands of Britons every year, is to be the subject of a staggered withdrawal because of evidence that it can cause death if patients exceed the maximum recommended dosage by as little as two tablets……

“A recent study found that the medication, whose effects are increased by alcohol, was responsible for 18 per cent of all drug-related deaths and 5 per cent of all suicides. David Kelly, the Government’s weapons adviser, is believed to have taken up to three packets of co-proxamol shortly before his death in 2003.

“Last year eight million prescriptions were issued in England and Wales for co-proxamol, which has been a mainstay in British healthcare for more than 40 years.”

CO-PROXAMOL WEBSITE

In March 2005 Dr Martin Kittel of Windsor launched a website about co-proxamol in which he claimed no widespread consultation had taken place and that doctors were as surprised as patients when the announcement was made.

The Doctor suggested, “Unless something extraordinary happens, co-proxamol will be withdrawn from the market and millions of patients suffering chronic pain will have to switch to another drug.”

The site, http://www.coproxamol.org.uk/ which was funded by the Doctor, is apparently no longer available.

Prior to the site’s disappearance, Dr. Kittel suggested the choice of alternative drugs was very limited and many patients would be left without an equally effective pain killer or will have to take higher does of alternatives, which may lead to other complications including constipation.

He pointed out that, “Co-proxamol by experience is just a lot more effective than other equal drugs and for many patients causes less side effects. Co-proxamol is highly cost effective and its withdrawal will not only harm patients, but also harm the health service. The NHS will pay a lot more for equally effective pain relief, strapping it of cash badly needed in fighting other diseases. Arthritis sufferers recently had to change drugs, when Cox 2 inhibitors were related to heart disease and one of them was withdrawn (Vioxx).”

Dr. Kittel stresses the website is not funded by any drug company and he urges all co-proxamol users to write to the local councillors, parish, district and county, MPs, and MEPs, asking the Houses of Parliament for a review on the withdrawal of co-proxamol before the scheduled withdrawal at the end of 2007. The simple website he recommends identifying your MP, using only your postcode, can be found on: -
http://www.writetothem.com/

Alternatively your Yellow Pages telephone book (Members of Parliament – Political Organisations and Representatives) should give you your MP’s address to post a letter.

When writing to your MP on-line, it may be helpful if you first type what you want to say off-line and then copy and paste it in the letter/message area when you enter the above website. This will save “on-line time”.

PATIENTS’ POINTS OF VIEW

Some time ago I looked at the Patient UK website and searched for co-proxamol. The site has since been “redeveloped” and although there are supposed to be two references to the painkiller, they were not easily available.

http://www.patient.co.uk/

In March one patient had written, “The situation of co-proxamol withdrawal is a very woeful one and it seems immoral and unethical to allow people to suffer by removing this medication from their lives when there is no suitable alternative to be found. This drug has been in use for many years by millions and its effects and side effects are well documented.

“I agree that this matter is now one to be fought about at the highest level of Government possible (i.e. letters to MPs etc. – especially those who are medically trained).

“I suggest that those users who have been taking this medication for many years with no ill effects; for whom there can be found no suitable alternative; whose quality of life is enhanced by the freedom from pain that it can bring and who are not found to be suffering from any accompanying depressive illness or disposition to drug abuse or attempting/completing suicide; and for whom there are no contradictions medically due to polypharmaceutical complications or existing medical conditions, should be given the option of doing the following:

“Sign a document declaring that they have been fully informed about the possible risks involved in taking this particular medication and that in the event of any unfortunate consequences as a result of taking co-proxamol in the way normally prescribed by a medical practitioner, they will not hold the prescribing doctor (or the General Practice where the doctor may be working) to be legally liable.

“This medicolegal course of action is undertaken every day in the case of people giving their consent to surgical procedures under anesthetic by signing a document permitting surgery (and the need for any further treatment if necessary whilst under anesthetic).

“Of course, in the case of medical negligence – if found proven – there may be case for blame, thus by signing a similar document concerning one’s daily medications there would be created a situation for some thinking and debate.

“However, I believe that this may be a suitable way around this difficult matter and am sure that many patients who are finding co-proxamol to be a life enhancing aid in the daily difficulties of chronic medical conditions causing much pain and distress, would be happy to give their consent to taking some responsibility for informed participation in their medical treatment – instead of having, as it were, the ‘rug pulled out from under them’ – for such is the effect of this draconian measure concerning the issue of prescribing co-proxamol for many years and then suddenly stopping.

“In some cases there has not even been a gradual period of readjustment to other analgesia given – leaving patients in a worse state than before. This goes against the doctors’ ethical code of “first, do[ing] no harm.”

“In a ‘worst case scenario’ it is possible that some patients, unable to find adequate alternative pain-relief would fall into depressive states (chronic pain can do this) and some, even, eventually resort to attempting/completing suicide – thus the declared medical objective of reducing the number of deaths from prescribing this drug might well end up causing a higher number from not prescribing it. Hardly an intelligent, desirable solution to the problem.

“If then, as a patient you find this medication to be essential to your life, please do fight for your rights to as pain free an existence as possible and get writing to your GP practice managers and Members of Parliament.”

TV DOCTOR ADDS HIS SUPPORT

Dr. Hilary Jones, the GMTV medical professional, also came out in support of the battle to save co-proxamol.

In an interview with Jim Pollard of Arthritis News, Dr. Hilary said many of his patients were asking what alternative painkillers they can use but he did not have the answer. His patients said other painkillers make them sick and were not as effective. Dr. Hilary, who had taken co-proxamol, claimed the painkiller was a safe drug.

Like others Dr. Hilary urged those in need of co-proxamol to write to their MPs to have the decision reversed.

The article outlining Dr. Hilary’ views on co-proxamol appeared in the August/September 2006 issue of Arthritis News.

E-PETITION

In September 2007 when supplies of co-proxamol seemed to suddenly become unavailable the complaints came thick and fast. To help I launched an e-petition but those who complained failed to support this. Whether a rush in the last month will have any effects, remains to be seen.

http://petitions.pm.gov.uk/DISAPPEARANCE/

It is somewhat out of date now, as it seems supplies seem to be currently available. If you feel strongly enough to launch your own e-petition asking about the future of co-proxamol, please let me know and I will sign it and mention it on my weblog.

I did in fact submit a further e-petition but this was rejected – the web team may have thought it was too political. Nevertheless the contents of the e-petition are certainly worth reading.

It does in fact present the perfect ‘excuse’ should a GP feel he does not wish to prescribe this painkiller for you. Had it been accepted it would have read:

Will the Prime Minister Gordon Brown please reverse the ban on prescribing the 50 year old painkiller CO-PROXAMOL due to come into effect in December 2007 and instead make it controlled drug under Schedule 3 of the Misuse of Drugs Act 1971, before it is too late and it all becomes a shambles.

Dr. Howard Stoate (MP Dartford) speaking in a House of Commons debate in May 2007, according to TheyWorkForYou.com and the Hansard report, suggested co-proxamol should become a controlled painkiller, as the GP would then be free to prescribe it without having to walk a legal tightrope to do so. Few GPs, if any, will wish to expose themselves to the possible threat of litigation by doing so, however strong the patient’s need for the drug. In practice, the solution amounts to a comprehensive ban he said.

THE PRESS RELEASE

In August 2007 I contacted the Press Office of the MHRA (Medicines and Healthcare products Regulatory Agency www.mhra.gov.uk/) and apart from a long and detailed background to the decision – an increase in the number of suicides with folk taking co-proxamol and the dangers of alcohol with this painkiller – the Press Officer wrote:

We recognise, however, that there is a small group of patients who are likely to find it very difficult to change or where there is an identified clinical need; when alternatives appear not to be effective or suitable. For these patients, continued provision of co-proxamol through normal prescribing may continue until the cancellation of the licenses at the end of 2007. After this time there is a provision for the supply of unlicensed co-proxamol, on the responsibility of the prescriber which in effect means it will still be available, for as long as you need it, should your doctor deem it suitable for you. If you wish to go down this route may I suggest you discuss this possibility with your doctor?

So is there light at the end of the tunnel?

SO BE IT

We are now on count down to December 2007 at the end of this week and understandably the big date for this month for most folk is the 25th – and on the 31st when co-proxamol is due to disappear, people will be celebrating the arrival of New Year.

It will be interesting to see the public reaction if suddenly co-proxamol is no longer being prescribed in January.

Try as he might, my dear GP always tell me my painkiller is being discontinued and I should use this or that…I quote MP Caroline Flint’s promises in the House of Commons saying that one manufacturer WILL continue to manufacture and supply co-proxamol. I give him my affirmation that I am a responsible fibromite and as a long-term reliable fibromite I am able to be a named patient and have co-proxamol. The dear man eventually gives in, bless him.

I think I would be up the wall now with my 3 fractures in my pelvic bone and fractured wrist without co-proxamol…either that or I would be in the divorce courts for sure…

I imagine many more doctors will be offering alternatives and there will come a time when it is no longer economically viable for the one remaining manufacturer to continue making co-proxomal together with the pressure from the powers that be. That is, unless we can all become named patients and are prescribed co-proxamol regardless of what we might have to sign to say we will behave responsibly and not overdose.

It is beyond my understanding why some medical quango has not produced a suitably worded form for us to sign relieving our GPs of any responsibility legally.

Is it not time that for those suffering with fibromyalgia, chronic fatigue, ME, arthritis and other long-term pain problems take up the challenge before it is too late?

I believe there has been no recent mention about co-proxamol in the House since May 2007. It must be good time to write to your MP and encourage others who take this painkiller to do the same. There is a chance that you may save co-proxamol from being withdrawn from general prescription. Tell your MP about your pain and suffering – why you need this painkiller (fibromyalgia?) to be available to you – they need to know – but do not forget the message – we need a review on the withdrawal of co-proxamol, a change of policy, a U turn.

If your MP is a member of the All Party Parliamentary Group on Fibromyalgia (APPG for FMS), ask him or her to raise this at their next meeting and to take the question of a review forward for debate. This would also apply to arthritis, ME and all long term chronic pain.

To find the name of your MP look in your telephone book, or Yellow Pages or try TheyWorkForYou.com and search for ALL MPs.

As of October 2007 the MPs who are members of the All Party Parliamentary Group for Fibromyalgia are: Rob Wilson (chairman); Dr Nick Palmer (vice chairman); Philip Davies (treasurer); Ian Austin (secretary).

Members: Russell Brown, Paul Clark, Gerry Sutcliffe, Adrian Bailey, Natascha Engel,
Rosie Cooper, Jim Devine, Ian Lucas, Andrew Dismore, Richard Burden, David Cameron,
Robert Key, Graham Brady, Tim Boswell, Shailesh Vara, Dr Julian Lewis, Andrew Pelling,
John Gummer, Henry Bellingham and Norman Lamb.

I am sure you all know what to write about – co-proxamol, a review and funding desperately needed for fibromyalgia research.

Between ourselves the email address of most MPs is their surname initial@parliament.uk – ie camerond@parliament.uk. However there are exceptions. Try this website for a lot more detail. The alphabetical list of MPs will lead you to websites, biographies and email addresses.
http://www.parliament.uk/directories/directories.cfm

Not wishing to sound like a wet blanket (I have never listened to a wet blanket, have you?) all MPs are generally only required to reply to correspondence from their constituents – those who voted them in locally. I have been rebuffed (knocked back) several times even with press enquiries. If they are a member of the APPG, you should mention this and stress this is why you are asking the questions – as a member of the APPG for FMS – and in the hope they will answer it – and copy your request to your own MP and let him know who else you have written to.

It might be a good idea to copy your emails to MPs Anne Begg and Howard Stoate who have already raised questions in the House about co-proxamol. It is said Anne Begg has taken co-proxamol. Your emails will give the MPs some ammunition to raise this problem again.

begga@parliament.uk stoateh@parliament.uk

This Doctor is according to the website was the Vice Chairman of the APPG for Medical Research.

ALL PARTY PARLIAMENTARY GROUP FOR FIBROMYALGIA

May I suggest you look among the names of the members of this APPG for FMS and you will see a certain distinguished name? I understand he has been a member of this Group for a considerable time – before other commitments made big demands on his time. With enough pressure he just might help – who knows.

Lastly as recently as October 2007 the chairman of this APPG Rob Wilson had written questions heard in the House, according to the Hansard report and TheyWorkForYou.com.

He asked the Secretary of State for Health

(1) what recent steps his Department has taken to raise awareness of fibromyalgia among (a) the general public and (b) health professionals;

(2) what progress is being made in improving NHS (a) diagnosis and (b) treatment of fibromyalgia;

(3) what recent representations he has had and received on fibromyalgia.

Hansard source reported that Ann Keen (Parliamentary Under-Secretary (Health Services), Department of Health) had replied saying,

• “We have made no assessment of the progress being made by the National Health Service into improving the diagnosis and treatment of fibromyalgia.

• “We have taken no recent steps to raise awareness of fibromyalgia among the general public and health professionals.

• “We have received three recent Downing Street e-petitions on fibromyalgia, as well as correspondence from individuals and their members of Parliament.”

What kind of answer is that when the Government is trying to get fibromites back in the work place to reduce the benefit bills?

One other fact to emerge from this reply is that the e-petitions are obviously reaching the Department of Health even if they appear to be ignoring them. I wonder does the PM ever see them?

Better get writing to your MPs in double quick time, even if you are an ex-pat somewhere else in the world.

Do let me have your comments – have you written?

I have read and re-read this until I am seeing double – please excuse any typos – fibro fog is the culprit!

Jeanne Hambleton © November 2007

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FIBROMITES DO HAVE A SENSE OF HUMOUR

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

MEN – This is about women’s things – read it at your peril, unless you are one of those men who lie when your wife asks. “Do I look big in this?”

For all of those who thought all fibromyalgia forums are full or doom and gloom, you are wrong. And indeed, maybe contrary to popular belief, fibromites do have a sense of humour. They love to laugh and many of us accept that laughter IS the best medicine.

For my sins I am the moderator of a lively little forum sponsored by the UK FaMily magazine. On ukfibromyalgia.com/forum folk are chatting about a huge range of topics, anonymously, and laughing their heads off.

I recently discovered after I had visited the doctor complaining about the tingling in my arms, that it may not have been inflammation after all, as was diagnosed, but a fibromyalgia symptom. Lots of fibromites had tingling arms. I should have checked the forum first. You learn something everyday.

Log in and have a look at some interesting theories about FMS, how some live with their problems, what to do when… and if you want a giggle look at the Make Me Laugh under the heading UKFM General Chat. (Rib ticklers for rainy days!) If you become a member you can share some of your funny moments with us.

It is a good clean friendly site with eyes everywhere to spot any mischief, which is unwelcome – if you know what I mean. I am sure other forumers will have had problems with websites imported from abroad and causing embarrassment. Hopefully we have it buttoned up enough to avoid that.

Last June 2007 we thought about injecting some joy and jokes into the forum. When I checked the forum at the weekend I had a real good laugh at the problems Ally faced – or so she would have us believe.

I am sure a lot of people can identify with Ally’s plight. It is just hysterical. The worse part of very personal shopping is with sales assistant popping her head around the curtain, leaving it wide open (as you stand there barely clad) and asking, “Are you alright?”

It is bad enough your family seeing you in an embarrassing situation when you wear the article, without a compete stranger sharing her views with colleagues in the staff room.

When I read this story from a fibromite I was looking for ‘hot topic’ to write about for my column for FaMily, but felt I had to share this one with the world. It was too funny to keep to myself. Enjoy this story. I did.

BATHING SUIT SELECTION

I have just been through the horrifying pilgrimage of torture and humiliation known as ‘buying a bathing suit’.

When I was younger, in the 1950s and 1960s, the bathing suit for a woman with a mature figure was designed for a woman with a mature figure — boned, trussed and reinforced, not so much sewn as engineered. They were built to hold back and uplift and they did a good job.

Today’s stretch fabrics are designed for the prepubescent girl with a figure carved from a pencil. The mature woman has a choice. She can either front up at the maternity department and try on a floral suit with a skirt, coming away looking like a hippopotamus escaped from Disney’s Fantasia – or she can wander around every run-of-the-mill department store trying to make a sensible choice from what amounts to a designer range of fluorescent rubber bands.

What choice did I have? I wandered around, made what I thought was the only sensible choice for me and entered the chamber of horrors known as the fitting room. The first thing I noticed was the extraordinary tensile strength of the stretch material. The Lycra used in today’s bathing costumes was developed, I believe, by NASA, to launch small rockets from a slingshot, which given the added bonus that if you manage to actually lever yourself into one, you are protected from shark attacks. The reason being that any shark taking a swipe at your passing midriff would immediately suffer whiplash.

I fought my way into a bathing suit, but as I twanged the shoulder strap in place, I gasped in horror — my boobs had disappeared! Eventually, I found one cowering under my left armpit. It took a while to find the other. At last I located it flattened beside my seventh rib. The problem is that modern bathing suits have no bra cups.

The mature woman is meant to wear her bosom spread across her chest like a speed bump. I realigned my speed bump and lurched toward the mirror to take a full view assessment. The bathing suit fitted all right, but unfortunately, it only fitted those bits of me willing to stay inside it. The rest of me oozed out rebelliously from top, bottom, and sides. I looked like a lump of play dough wearing undersized colored cling wrap.

As I tried to work out where all those extra bits had come from, the prepubescent sales girl popped her head through the curtains, “Oh, there you are!” she said, admiring the bathing suit. I replied that I wasn’t so sure and asked what else she had to show me.

I tried on a cream crinkled one that made me look like a lump of masking tape.
I tried on a floral two-piece, which gave the appearance of an oversized napkin in a serviette ring.

I struggled into a pair of leopard skin bathers with ragged frill and came out looking like Tarzan’s Jane, pregnant and having a rough day.

I tried on a black number with a midriff and looked like a jellyfish in mourning.

I tried on a bright pink two-piece with such a high cut leg I thought I would have to wax my eyebrows.

Finally, I found a suit that fit…a two-piece affair with shorts style bottom and a loose blouse-type top. It was cheap, comfortable, and bulge friendly, so I bought it.

When I got home, I read the label, which said, “Material may become transparent in water”

I’m going to wear it anyway…

I wonder on what beach she is going to wear this creation? I love to be a crab in a rock pool when she does. Thank you Ally – it was funny, enjoyable to read, beautifully written and boy can I identify with the problems. Best to swim fully clothed I reckon or just not bother.

Happy holiday Ally.

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FIBRO E PETITION FOR GOVERNMENT FUNDING – PLEASE SIGN

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

Like most of us, I am sure that anyone who uses the Internet and receives emails these days has been asked to sign and support an e-petition. Oddly enough that is just what I am about to do, if you are an ex-UK-ier or are still hanging on and living in this country hoping thing will improve.

I am not sure if Kitchener still needs you – you know who I mean – the military man with a white topped peak cap and a very pointing finger who you see on posters – but I need you or at least I need your help. I hope it feels good to be wanted, as I would like your attention now.

I am always rattling on about fibromyalgia, lack of government funding for research and people who say Fibro what? I bet Gordon Brown would “Fibro what” if I met him face to face. I might bet my bottom dollar (if I had one) that he has never heard of fibromyalgia or has no idea of the pain, anguish, fatigue, sleeplessness, isolation, depression and cognitive problems we suffer, even though there have been a number of e-petitions.

I will say again, I am so fed up with the lack awareness about fibromyalgia that I have spent almost two years getting together a self help book about fibromyalgia, and raising funds to self publishing, so that the sales money from the book can go to research – yes a labour of love by all concerned – and may I say here I am truly grateful to all those who have donated and helped, especially Penny Jarritt who has read chapter after chapter looking for typos. Watch this space for news of

PAIN 24/7 The Fibromyalgia Jigsaw©

I first heard about e-petitions when someone wrote and asked me to sign four of FMS e-petitions all created by different people. In no time one expired and I was so incensed that the fibromyalgia community was being left ‘out in the cold’ I thought I would submit an e-petition myself asking for more funding.

When I started it went well and now about one signature a day is added to the list – currently 534 – but it really needs to reach 1,000 if the petition has any chance of even being taken seriously by the web team responsible for vetting these petitions, presumably before our PM sees them – if indeed he does.

You will find my petition under

http://petitions.pm.gov.uk/FIBROFUNDING/

You are asked for your name, email and address (which is not published) and you will receive an email to your desktop asking for confirmation of your support. It only takes a minute but I really would like another 500 signatures if you will tell your friends, family, business acquaintances – anybody – folk in the bus queue – I am not proud. Let us move a mountain this time.

The e-petition reads:

We the undersigned petition the Prime Minister to allocate funds to help FIBROMYALGIA with research, finding a cure and raising awareness. We implore the new PRIME MINISTER to listen to those suffering with fibromyalgia, for which there is NO CURE, and provide financial help for them to survive – (as the Government has for ME). Who else can we ask for help?

The e-petition website tells us that, “Downing Street is working in partnership with the non-partisan charitable project, mySociety, to provide a service to allow citizens, charities and campaign groups to set up petitions that are hosted on the Downing Street website, enabling anyone to address and deliver a petition directly to the Prime Minister.”

I was interested to read, “mySociety runs many of the UK’s best-known non-partisan political websites, such as HearFromYourMP.com and TheyWorkForYou.com. mySociety is strictly neutral on party political issues, and the e-petition service is within its remit to build websites, which give people simple, tangible benefits in the civic and community aspects of their lives. For more information about mySociety and its work, visit its website.”

http://www.mysociety.org/

It has a great website called a PledgeBank. You can write and offer to undertake a litter pick if 10 other people will assist you – or something like that. The mySociety website “PledgeBank is about reassuring people who want to do something altruistic or socially beneficially that they will not be alone in their actions. It allows users to create pledges, which say “I will do something, but only if 10 other people will do something”, for example “I will clean up the banks of my local river, but only if 5 other local people will pledge to come and help.”
There are lots more sites to look at including FixMyStreet, HearFromYourMP, WriteToThem, TheyWorkForYou and NotApathetic. It is worth a look. Try -

http://www.mysociety.org/projects.php

It all began
The e-petition site was launched in November 2006 “to offer a modern parallel” to those who delivered petitions to No.10 by hand.
You might find the following information interesting?
· Over 29,000 petitions have been submitted, of which over 8,500 are currently live and available for signing, over 6,000 have finished and 14,601 have been rejected outright.
· There have been over 5.8 million signatures, originating from over 3.9 million different email addresses.
· The most common reason for rejection is duplication – many users have commented that there are petitions on similar subjects clogging up the site. We are trying to eliminate too much duplication or overlap, although we need to balance that with the need to allow for the nuances of similar petitions.
· The other common reasons for rejection are: legal issues, offensive language, party political content and issues outside the government’s remit.
· If a petition is rejected, petitioners are given a chance to reword their petition. Some users choose to resubmit their petitions, some prefer not to.
Humour
Originally the e-petition team accepted humorous e-petition but this expanded rapidly with the risk of offence or including something in bad taste. It was then decided to discontinue acceptance of these e-petitions.
Honours
MySociety also receives petitions proposing people for honours. These petitioners are advised to use the downloadable forms on the honours website.

http://www.honours.gov.uk/

This site is an education and certainly gives you guidance if you believe someone you know is deserving of recognition for contributions to some cause. This will guide you through the type of Honours, how to nominate, case studies, the process of nomination, and Emblems for Honours.

Thank you for reading my ramblings. Please sign the petition. Take care.

Jeanne.

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:

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

THE BEST DAYS OF YOUR LIFE?

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

I’m fed up with this weather – not great for a fibromite – wet and cold today were I am in the UK and I hate it and feel SAD. So I decided to brighten my day and look at some funny emails. I must thank Linda for the rude ones and this one – it made me laugh out loud…… I wonder if there is any truth in it?

And they say schooldays are the best days in your life…somehow I do not remember any of this. I think I must have had a sickie that day or been standing outside the classroom for some misdemeanour. But it does make you think.

I enjoyed reading this missive – whether it is true or not… but between ourselves I would not want to be a teacher these days … not for all the tea in China …and as a fibromite I would be lost without my cup of tea. It helps my get-up-and-go and I have enough trouble with that without being deprived of my cuppa.

Having been a news reporter for many years I always had a cup of tea on the desk when I was writing …albeit hot or cold. Nothing changes except they say caffeine is not good for fibromites… but who cares.
 
 
Subject: You will love this one!!! But it is alleged and without prejudice

SCHOOL ANSWERING MACHINE

This is the message that apparently a Secondary School staff in the Midlands voted unanimously to record on their school telephone answering machine.

This is the actual answering machine message for the school.  It came about because they implemented a policy requiring students and parents to be responsible for their children’s absences and missing homework.

The school and teachers are now being threatened with legal action by some parents who want their children’s failing marks changed to passing marks – even though those children were absent 15-30 times during the term and did not complete enough schoolwork to pass their various key stages.

(I have not read about this in the newspapers, have you?)

The outgoing message:

‘Hello! You have reached the automated answering service of your school. In order to assist you in connecting to the right member of staff, please listen to all the options before making a selection:

· * To lie about why your child is absent – Press 1
·
· * To make excuses for why your child did not do his/her work- Press 2

· * To complain about what we do – Press 3

· * To swear at staff members – Press 4

· * To ask why you didn’t get information that was already enclosed in your
Newsletter and several other letters posted to you – Press 5

· * If you want us to bring up your child – Press 6

· * If you want to reach out and touch, slap or hit someone – Press 7

· * To request another teacher, for the third time this year -Press 8

· * To complain about bus transport – Press 9

· * To complain about school lunches – Press 0

· LASTLY: If you realize this is the real world and your child must be accountable and responsible for his/her own behaviour, class work, homework and that it is not the teachers’ fault for your child’s lack of effort: Hang up and have a really wonderful day! If you want this in other languages, you must be in the wrong country. This is England.’

What can I say? In my day you got three strokes of the cane for bad behaviour and all that stuff. Believe me after that you would not have been able to sit on any ‘naughty spot’…. if you now what I mean. Do you think this is unreasonable behaviour by teachers even if it is not true?

Would love to see your comments?

Jeanne

CONGO GETS TEMPORARY REPRIEVE WHILE JUDGE RECEIVES DEATH THREATS

by Jeanne Hambleton © 2007
Without prejudice

Those of you who made the effort to save the life of Congo, a two-year-old German Shepherd Dog, will be delighted to hear he has a temporary reprieve and is back home with his family. Thanks to all those who telephoned, wrote and sent emails in answer to an earlier response to save this dog who was doing what you would expect – protecting his home and family. Although confined to his own home and gardens Congo has been given a temporary stay of execution.

It is alleged Congo fought with a landscaper after the female GSD and their puppies became the victims of an assault and the lady of house had been pushed to the ground.

According to The Times newspaper in New Princeton USA on Friday November 16 2007, and their writer Linda Stein, Congo appeared in court, muzzled and full of high spirits. He had been detained in the town’s Animal Shelter called Save a Friend since the alleged attack early in June – five months ago. At the weekend Congo was reunited with the James family and the female German Shepherd bitch.

Inside the court Congo was pleased to see his family and was keen to rekindle his friendship with the eldest son, Brandon, who is 14 years old.

Earlier a lower court judge had ruled Congo was a vicious dog, which meant an automatic death penalty. But Superior Court Judge Mitchel Ostrer sanctioned a consent order giving the family pet a reprieve order subject to an appeal of the lower court judge’s ruling that Congo should be put to death.

The Superior Court Judge ruled that while Congo waits for the final outcome of the appeal, he must wear a muzzle and a leash outside the home of the James family. Fortunately Congo has a 10 acre garden and subject to the fencing being secure he will still have room to roam but only on the family’s land. Should he require medical treatment Congo will need the court’s permission to leave home?

But these inconveniences are a small price to pay while his life hangs in the balance. The notice of appeal of the Municipal Court Judge Russell Annich Jr.’s ruling has already been filed according to Linda Stein’s report.

Mercer County Assistant Prosecutor Doris Galuchie, who also signed the consent form for Congo’s release, said realistically she did not expect a date would be set for the appeal hearing before January. A transcript of the two day Municipal Court hearing had been requested by Ms Galuchie. It is said the Prosecutor owns a pet dog.

She assured the press that Congo would get a fair hearing but that all the relevant laws would need to be considered before the appeal was heard. Until then Congo would remain under “house arrest” with the James.

The Times reported that Municipal Court Judge Russell Annich Jr. continued to uphold his ruling relating to Congo regardless of the death threats he had received and hundreds of emails, letters and telephone calls with 100 protests from animal and dog welfare supporters.

There is little doubt the laws relating to dogs who fight off an attack on their own home ground while protecting the family and their property, need to be carefully looked at and if necessary amended. Some would say this dog deserved a medal for his bravery and selflessness.

Some years ago I had a black Labrador bitch that was ready to lay down her life for my son and her family. Her nose and face were badly cut as she broke the inside glass panel of the double glazing on the front door while an intruder tried to force the lock, unsuccessfully thankfully. I too would have fought through the courts to save that dog’s life. She was protecting my 11 year old son, who was in the house on his own at the time.

Oddly enough until then we did not regard her as a guard dog – just a big old softie who rolled around the floor with the children giving rides and being dressed in the kid’s clothes by the children. This Labrador was always a placid and even-tempered dog. I would make the same claims for my Great Dane, my last dog, although finding her the other side of the front door would be a rude awakening for an intruder. She was also unlikely to bark to make you aware of her presence either.

These days I have a burglar alarm linked to the police station. It is cleaner, (no pooper scooping), less effort and walking (but I do miss the exercise and the admiration she received) and it is also soul destroying (I do miss her companionship). Nothing can replace the welcome, wagging tail, and the pleasure a dog can bring when you arrive home. They do not even ask where you have been or how much you have spent….. The downside to owning a dog is when it dies. It hurts for a long long time and nothing replaces the emptiness.

Starting from when I was a child I have owned about ten different breeds of dogs. I am hoping when I get to Heaven (perhaps I should have said ‘if’) that they will all be waiting wagging their tails and be pleased to see me. I will get plenty of exercise then. Folk would have you believe there is a doggie heaven….I have no proof to the contrary…do you?

I hope Congo wins his battle and enjoys a long and happy life with his family.

What do you think? Would you stand by your dog for protecting you or your child? Do you think the laws should be changed or amended for dogs that are protecting their family and their home regardless of what damage they do to the offender? Surely the intruder or those making an assault should be punished – not the dog.

Let us hear from you with your views? Maybe we can change some opinions – who knows?

Jeanne

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