This meeting was held on 12th May 2008 from 10.00am to 12noon in the Atlee Suite, Portcullis House, Westminster, London.

This was not a formal meeting but a time for sufferers and MPs to meet to discuss the problems we encounter living with fibromyalgia.  As MPs are very busy people, most were unable to stay for the whole two hours but took the opportunity to come and meet their constituents during part of the morning. 

It was good to meet up with groups from around the country as well.Rob Wilson, MP for Reading East and Chairman of the All Party Parliamentary Group on Fibromyalgia welcomed everyone and said that he hoped there were awareness events taking place all over Europe today because fibromyalgia is one of the ‘Cinderellas’ of the health business. 

Rob acknowledged that a number of people had to get up very early in the morning to get there and thanked everyone for making the effort to come along. Rob was greeted with cheers when he announced that maybe in future we would have a coffee afternoon rather than a coffee morning!

Rob went on to say that this coffee morning was being hosted by the All Party Parliamentary Group on Fibromyalgia, of which he is the chairman and introduced the other MPs who were present thanking them for giving up some of their valuable time.

Rob then introduced Pam Stewart, Chairman of FMA UK who had just been to Brussels lobbying the European Parliament and who was going to speak to us about what has been going on with FMA UK nationally.

Pam thanked the MPs for attending and giving of their time and explained that the diagnosis and treatment of fibromyalgia is known but is very difficult to obtain.  People sometimes wait years for a diagnosis and treatment centres of excellence are in the minority still.

Pam went on to explain that she had just returned from the Fibromyalgia Round Table Discussion at the European Parliament in Brussels where Pfizer presented the results of their Global Fibromyalgia Impact Survey which was aimed at Primary Care Physicians (PCPs) and Specialists.  This survey was conducted across Europe and included Korea and Mexico as well.  The UK did not come out of this survey very well so, in addition to the anecdotal evidence we receive from fibromyalgia sufferers, we now have a survey completed by physicians themselves highlighting the problems they face dealing with fibromyalgia. 

[Unfortunately, the results of this survey cannot be made public just yet but we will publish them separately just as soon as we receive permission.]

A European Declaration was prepared last week to help raise awareness of the condition; to obtain access to information; to develop a community strategy on fibromyalgia and encourage member states to improve access to diagnosis and treatment.

The Declaration was written by MEPs, and will be formally presented to the European Commission in September 2008.  It then has 3 months in which it must obtain 401 MEP signatures.  This will not be easy as not every member state has fibromyalgia organisations so it’s no good thinking that if every country manages to get half their MEPs to sign up we’ll be alright, that won’t be enough because the member states that haven’t got an organisation will not be able to pressurise their MEPs.  This means that the member states will need to encourage all their MEPs to sign the declaration if it has any chance of being adopted.  Once the Declaration is signed, it will then begin the discussion phase, which could take 2 years so the sooner we start that process the sooner something will happen

Pam asked the MPs present if they had links to their MEPs to encourage them to support this for us and she asked everyone else at the meeting to try and make personal contact with their MEP.  Invite them to an event or go and meet them so that we can get them on our side so that when this Declaration arrives they will say, ‘Yes we must sign that’.  A personal contact has far more impact than writing a letter.

The postcard campaign has had some success and there was applause when Pam reported that Rob had said that 20 new MPs had joined the APPG as a result of that campaign so well done it’s extremely good news.

Pam then went on to the bad news.  There wasn’t a single MEP from the UK at the presentation in Brussels last week and not one single reply with an apology for absence.

There were two members from Ireland so that was good.  However, this is probably the first time they have heard of fibromyalgia so we need to raise awareness with them.  Pam spoke about her ‘law of at least three’ meaning that nobody does anything until they have heard about it three times, so maybe our campaign was the first they had heard of fibromyalgia.

We are at the start in Europe so if we can get the European Declaration accepted, that will have a knock on effect on each member state.  Yet another angle to add to the pressure we are already putting on parliament and as you know we try as many angles as possible. 

So watch this space.  There will be more information from the survey about the UK answers and we will make those available to everyone by sending something round to all the groups and putting it on the website.  We will also send it to Rob to send to the MPs so that everyone will be aware of how dire the situation is in the UK.

So keep going and thank you very much and well done for the postcard campaign.  The office sent out 5,000 of both postcards, so that’s great and keep up the good work.  Jean said that at least the postmen were aware of fibromyalgia now!

Pam then asked if there were any questions.

Rob then suggested we break for coffee and take the opportunity to speak to the MPs present.  He went on to thank Pam and everyone for doing what we do; for attending the event and also for sending off those postcards without which we wouldn’t have gained those extra 20 members for the All Party Parliamentary Group so it’s very very important the work we are doing and it’s very very important we attend events like this.  Rob also thanked Pam for all the hard work she is doing for FMA UK at the international level and Pam received a round of applause.

Rob said that finally, as a result of today, he will put down an Early Day Motion about fibromyalgia and ask some of the MPs there to sign, which will enable them to promote the problems and awareness of fibromyalgia more widely amongst all MPs

Sir Nicholas Winterton suggested that the Association sends brief details of what we are doing, particularly the European Union Declaration to MPs so that they can send a copy of that to MEPs in their regions asking them to support this Declaration.  Sir Nicholas saw this as a very positive way forward and it is one way in which MPs can help. 

Rob thanked Sir Nicholas for his very helpful suggestion and Pam confirmed that FMA UK would follow this suggestion up.

Rob thanked everyone for coming and urged us to keep up the good work it’s really really important.

FMA UK would like to thank Rob Wilson for hosting this event and a special thank you to Gemma Anslow, PA to Rob, for arranging this event which everyone agreed was very productive.