AWARENESS WEEK FOR FIBROMYALGIA SEPTEMBER 8/15 2013

by Jeanne Hambleton

In recent years it has become traditional for those suffering our invisible disability (fibromyalgia) to endeavour to raise awareness during the appointed dates. This year it is from Sunday September 8th to the following Sunday,  the  15th according to the NHS calendar.  

 

In the past up and down the country groups have had tables in  shopping malls or superstores with leaflets  and answers about the problems we live with after diagnosis of this Cinderella disease. The Cinderella terms relates to being ignored as we are mostly forgotten by the medical profession and indeed by Parliment and our MPs.  We are glad to see health stories from time to time about FM in the national press but there are still folk who say ’Fibro what?’ We have a long path to tread ahead of us.

 

HOW LONG HAS SHE GOT?

If you are asked to explain what fibromyalgia is, often the listener’s eyes will glaze over as you talk. If you could read their thoughts, they may be thinking, “I wonder how long she has got?” Guess we all know what that means.

 

Well it is time we could expect to live much  longer time and  with less aches and pains if someone could find a cure.

 

In the recent months FMS SAS Trustees have taken a young research charity under their wing and are supporting their events. Our Trustees are also involved with volunteering to help raise funds for Folly Pogs Fibromyalgia Research charity UK and the CAUSE FOR A CURE.  

 

Our FMS SAS Trustees are also among the 14 selfless volunteers who help the national FM conference to be a big success and run smoothly. Every booking for conference contributes to research. The Trustees are all passionate about finding a cure especially for the unborn babies of fibromyalgia mothers.

 

GOVERNMENT’S RESPONSIBILITY

FM is hereditary. While the Government is failing to provide millions of pounds for research as they did for ME some 5 or 6 yeas ago. So is Parliament is condemning the next generation of children to our aches and pains? Can you imagine having children with all your health problems and a compromised immune system? FM is now being seen in three generation.  Mothers and daughters as well as sisters are seen at conference, all with FM.

 

NOT NEW

Fibromyalgia is not a new condition and as you may know Florence Nightingale (the Lady with the Lamp) is shown on list of celebrities who had fibromyalgia. She was born in May 12  1820 which is why we celebrate the May Day event. Hopefully everyone knows she took nurses to the Crimean War to nurse wounded soldiers. When she returned home it is said she took to her bed with what has been described as today’s fibromyalgia.

Our condition only became known as fibromyalgia in 1990 when the American College of Rheumatology with a number of top consultants in the States, setting a criteria for the tender points diagnosis. They also renamed fibrositis as fibromyalgia.  In Florence Nightgale’s time widespread pain was often used to describe the condition as fibrositis did not emerged until the early 1900s.

 

But to get back to September Awareness Week what are YOU going to do?  After reading the following you may feel you have a number of options.

APPGS and PARLIAMENT

 

I wonder how many of you know that our Parliament has a number of voluntary APPGs. These are ALL PARTY PARLIAMENTARY GROUPS. The MPs join these groups to support the wishes of their constituents.

 

Before the last election in 2010 MP Rob Wilson (Reading East), then Chairman of the APPG for Fibromyalgia, arranged coffee mornings in London, instigated by FMA UK and fibromites were invited to join these events.

 

This opened up the opportunity for those visiting to ask MPs to raise specific questions in the House. Much good work for FM was done by MP Rob Wilson and his APPG team, whose members included our PM David Cameron, Kenneth Clark MP, Norman Lamb MP.

 

I was very recently advised by MP Rosie Cooper (West Lancashire) who was prepared to chair the new APPG on FM after the 2010 election, with Rob Wilson as vice chair, that……

 

“Each year APPGs must re-register with the Office of the Commissioner for Parliamentary Standards to be recognised as an active group. In 2010 APPG members, including the Prime Minister, were unable to continue as members due to their ministerial work. Sadly, there were not enough supporting members to enable the group to re-register. Therefore the All Party Parliamentary Group on Fibromyalgia does not exist as it stands and I am no longer Chairman. I am sorry that this is a disappointing reply but I trust this clarifies the situation on APPG on Fibromyalgia.”

 

SEPTEMBER AWARENESS ACTION

 

As the previous APPG members were unable to continue and we have been without a voice in Parliament all that time. A really worthwhile September Awareness effort could be to take some action to change all this.

 

No we do not want your marching the streets with a banner like Sister Anna or pushing leaflets in every letter box. Fibromites often do no have all that energy for such activities. We were thinking of something less energetic and simple.

 

Why not PLEASE write to your MP and ask him to join Rosie Cooper MP to consider forming an ALL PARTY PARLIAMENTARY GROUP ON FIBROMYALGIA.

 

If we are to make any progress with funding from the Government for research to find a cure we must be vocal in the ‘corridors of power’. These are the people who CAN ‘move mountains’.

 

We need their help and we NEED an APPG on FM.  Now we NEED your help please. If enough MPs talk to MP Rosie Cooper and agreed to support FM on your behalf we will prove we do have the power to make changes and even move a little mountain or two. We really need your help please.

WE WANT YOU to help and write to your MP

If you do not know who your MP is and where to find him/her look at www.theyworkforyou.com/‎ and click on MP. On this page enter your POST CODE and your MP’s detail will appear on the page. Now click the first blue line  ‘Send a message to (your MP). This www.writetothem.com will lead to another page. Complete your personal details and enter your message (prepared before you enter this page so you can cut and paste or copy before the time expires). You can email your MP by linking to this same link..

 

QUESTIONS AND ANSWERS

If you are wondering what to write about other than the all  important APPG situation the following may inspire you to get the job done.

 

1.  You could ask for support for Government funding for research to find a cure for our unborn babies born to fibromyalgic mothers. This condition is hereditary.

 

2.  You could ask for education for the untrained GPs who are still telling patients that the pains are imaginary and all in the head?

 

3.  You might suggest as FM diagnosis has taken 2.2 years, would it be better to support research wherever to find an FM cure and save the huge financial drain for the NHS while reaching a diagnosis? 

 

4. A national  flag day for fibromyalgia would do much to raise awareness for us – ideally May 12 or a Saturday in September Awareness Week?

 

 

FACEBOOK LIKES FOR FOLLY POGS

Please also join LIKES FACEBOOK page.  If you are a FACEBOOK fan we are aiming to reach ONE MILLION LIKES on FACEBOOK to show the Government we are the voice of fibromyalgia.  Please log onto our Folly Pogs FACEBOOK and click the LIKE button. Once again we  need your support please.

 

https://www.facebook.com/FollyPogsFibroResearchUk

 

Thank you for your anticipated support. Need any help, got any questions write to  chair@fms-sas.co.uk or ring 0844 828 829. Thanks for listening. Chair.

 

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About jeanne hambleton

Journalist-wordsmith, former reporter, columnist, film critic, editor, Town Clerk and then fibromite and eventer with 5 conferences done and dusted. Interested in all health and well being issues, passionate about research to find a cure and cause for fibromyalgia. Member LinkedIn. Worked for 4 years with FMA UK as Regional Coordinator for SW and SE,and Chair for FMS SAS the Sussex and Surrey FM umbrella charity and Chair Folly Pogs Fibromyalgia Research UK - finding funding for our "cause for a cure" and President and co ordinator of National FM Conferences. Just finished last national annual Fibromyalgia Conference Weekend. This was another success with speakers from the States . Next year's conference in Chichester Park Hotel, West Sussex, will be April 24/27 2015 and bookings are coming in from those who raved about the event every year. I am very busy but happy to produce articles for publication. News Editor of FMS Global News on line but a bit behind due to conference. A workaholic beyond redemption! The future - who knows? Open to offers with payment. Versatile and looking for a regular paid column - you call the tune and I will play the pipes.
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