‘Murky Disease” – FMA UK reponds to AP story

From the Fibromyalgia News Desk of Jeanne Hambleton

The Fibromyalgia Association UK responding to the controversial ‘Murky Disease’ article published by Associated Press on February 9, 2009, wrote:

Many charities and nonprofit groups around the world have been struggling to raise awareness of fibromyalgia for over 20 years. Even before it was given that name, people were concerned that the symptoms were causing great distress and hardship to people who were inexplicitly in pain and suffering from profound bouts of fatigue.

One thing people with fibromyalgia are certain about is that the symptoms they feel are real and cannot be dismissed as “a murky illness” as this article suggests. Fibromyalgia was given validity long before the drug companies started their trials to find out if drugs they had developed could alleviate the symptoms. Most of the research into this disease would not have happened if it were not for drug companies supplying funding.

The organisations fighting for swift diagnosis and treatment for fibromyalgia have had very few allies. Certainly the medical services from government level to the doctors and nurses have not initiated plans for improving the situation. Long before the drugs approved in the USA were mooted as possibly bringing relief for people with fibromyalgia we had been seeking funding to help with the campaign for improvement. So this has not been pharma led, but in some cases pharma enabled.

In our case we had funding to print postcards for a campaign that we initiated to bring fibromyalgia to the attention of MPs and MEPs. These were offered to individuals who wanted their representatives to be more aware about the problems they are facing. It made it easier for people to invite their MPs to a coffee morning and the MEPs to a presentation for the recently passed European Written Declaration on Fibromyalgia.

We do not have any approved drugs in the UK or even Europe for the treatment of fibromyalgia. Indeed there are not even any official guidelines for its diagnosis and treatment. We have enquiries from the public and medical professionals asking us for information because they find this is not available when they are faced with a fibromyalgia patient.

We fundraise to be able to afford to print and distribute information and are very grateful to one sponsor who at present prints our general information booklet. This means we do not have make a charge for sending this out to people, which is especially appreciated by those who may have lost their income because of fibromyalgia. We would still publish and send this out without sponsorship: it would mean working harder at raising money instead of putting our energies into raising awareness or cutting back on other publications and support we provide.

If the drug companies did not help raise awareness of the disease and possible interventions, many more people would be left in pain, with a wretched quality of life. Fibromyalgia is not considered a life threatening illness, but we know of people that preferred to end their life rather than go on suffering the pain and fatigue for the rest of their lives. Would we rather that happened than funding was supplied from pharmaceutical companies to help?

Drug makers’ push boosts ‘murky’ ailment – Part 2

From the FMS Global News Desk of Jeanne Hambleton
To the Editor of Associated Press and Business Writer Matthew Perrone

AP Associated Press IMPACT:
re: Drug makers’ push boosts ‘murky’ ailment -Washington on February 8 2009

Dear Sirs,

I read the article and then I was so angry wrote this….

Before I was told I had fibromyaliga I was an auxillary nurse and very active in everything I did. Then one day while at work I started feeling ill and my body hurt so badly, within a few hours it actually made me pass out. I was sent home and the next day felt so ill I booked an appointment to see the doctor.

The doctor sent me to the hospital and I had all sorts of tests even for Aids, all the tests and a lot of other things. The wait for some of them tests was so scarey and took a week – so it felt like forever. I have been pulled and pushed and then told I had a condition called fibromyalgia, of which I knew nothing. Then after that more things to try help sort the pain out…

I am going to now tell you what it feels like for me two have this. I am on a lot tablets including morphine. Some days i cannot walk down the stairs, let alone get back up them. I cannot bath on my own without my husband being there. My children have to finish brushing my hair sometime because my arms get heavier and heavier. That is my children doing this for their mum. It should be me looking after them.

Even with the silly pills I am in pain. Do you people think I like being like this? This pain I feel hurts so much it stops me from doing the things i love and used to love.

It is downgrading for me as a human being to be like this. Do you people not realise that most days I wonder why I just do not end my life as I cannot do the things I used to. Yeah that is what this makes me feel like saying right now.

I was so well and loved life until I got this condition. It is not right for people to say its NOT REAL WELL LET ME TELL YOU!!!! I would not even wish this on someone just so they experience the pain of someone with fibromyalgia; even just to get people to say, ‘Hey they are not lying. It is not in their head. Oh God, we are sorry it real pain these fibromites feel. Okay we are going to help.’

Do people like you not understand what it is like to be called a liar and told OH IT IS IN YOUR HEAD? Do you not know what it feels like for people to disbelive what we go through?

That article is so wrong, so very wrong. Instead of criticizing people with this condition why can’t someone create a bloody cure? Then I would love to go back to being pain free and looking after old people. I would love to go dancing and drinking and out with my children and play with my grandchild that is due in August.

Do you people not understand that when my grandchild born I might not even have the strength to hold that baby? Do you know how that feels? Do you not know how it feels being unable to hang your own washing out or finish cooking a meal or getting a drink? If this is not bad enough for us what about our families who have to see us struggling most of the time or when were having a bad day? What about them seeing the one they love in so much pain? My husband had to sit there watch as I scream with pain and begged him to help me but he does not know how? He has to carry me downstairs or upstairs just so I can use the toilet. Don’t you people understand that we do not like being like this? The pain is so bad sometimes. What do we have to do to make people understand and help us for God’s sake….

Donna Weetch of Portsmouth Hampshire UK.

Editor’s Note: We know we must endure the pain as there is no cure and no Government funding for research in the UK, but if only people understood, if only there was more public awareness- if only more GPs and doctors had been trained with knowledge of fibromyalgia – if only….

We will continue to try to move mountains, seek donations and raise funds for our own research programme and one day – I promise Donna – there will be a cure. Think positive. It can only get better.

If you, the readers, have any bright ideas or want to donate to our funds for research, write tome. Jeanne -fmsglobalnews@me.com