AWARENESS CONFERENCE SEPTEMBER 2004.

The 2003 Awareness was a success and supplied us with a marker for planning for 2004.

The Lord Mayor opened the awareness and gave an excellent speech about Fibromyalgia and its issues. Once more we were supported by MP’s Paddy Tipping, Vernon Coaker, John Heppel, Graham Allen, Nick Palmer and Liz Blackman, Chairman Cllr from Mansfield and Chairman Cllr from Sutton-in-Ashfield,   speakers were Dr. K. Lim Consultant from Kings Mill Hospital, Dr. Kim Lawson Biomedical Research Centre Sheffield Hallam University, Dr. Lim GP and presentations by two group members, one from a patient perspective and one from a carers perspective, these presentations were engaging.

Nick Palmer gave an interesting talk about the Fibromyalgia All Party Parliamentary Groupand his involvement with the setting up of the FAPPG and Dr. Kim Lawson gave an excellent talk, their accounts follow.

Organisations attended, there were guests from the national fibromyalgia organization and our colleagues from the North East joined us to help with the proceedings.

Our sound system worked wonderfully, again a superb buffet was provided and the event was attended by 190 people.

Christine Brown, Awareness Co-ordinator

Nick Palmer MP for Broxtowe, Awareness Conference, Nottingham City Hospital 2004.

I got involved in the whole issue some years ago more or less by accident. A single constituent came to see me to talk about her fibromyalgia and initially, like a lot of people I said, well I am really sorry but I don’t know what it is---you tell me about it, and when she explained I consulted a few people and realized that I wasn’t alone in not knowing what it was and, in fact, one of the most difficult aspects of having fibromyalgia is that it is a relatively little known condition and, firstly it is tedious to have to keep explaining it and, secondly, its frustrating that it doesn’t get the attention it deserves and there isn’t a well defined pattern of treatment.  So if you’ve got, lets say, osteo arthritis everyone understands immediately, their Aunt or their sister had it and they sympathize and its all straight forward. But if you say you have fibromyalgia they hesitate and don’t know quite what to say. So at a personal level, it seemed to me, that there was a lot of scope for people knowing about it. Also, more importantly, so they could recognize it if they had it, because I think there are a lot of people out there who have fibromyalgia who are just suffering and don’t know what is wrong with them. They may think that they have arthritis or something and their GP doesn’t know what’s wrong with them. Just making people aware of the condition was an important objective. Now I discussed with my constituent and a friend of hers how we could address that and we hit upon the idea of a Parliamentary group and what the Parliamentary group is for is really three things. Firstly its to make MP’s aware of the issues of fibromyalgia—what it is, treatment and research issues—and that has been pretty successful as you can see by the fact that we’ve got five MP’s here. I have to say when you organize a meeting on any subject in the House of Commons you get about two people turning up and there’s a sundry of different subjects. So the fact that you’ve got most of the local MP’s in this room reflects that the group have done a good job of stimulating interest and concern and involvement. And when I say the group I mean specifically the Nottingham support group have done a great job of talking to their local MP’s about the issues and encouraging them to get involved and I’d like to thank my colleagues for taking the time to come here and for all their support they’ve been giving the group. The second objective is to promote understanding in the Health Service, on one hand at the highest level where research decisions are made like the Medical Research Council and associated bodies to encourage scientific research into both diagnosing and treating fibromyalgia and hopefully finding ways in which it can actually be prevented. At the moment we are still quite reliant on research from overseas, although it is not always easy to judge how well founded it is, it is very important that we develop a better research programme in Britain. That’s the second objective of the group and the third objective is to get better understanding across the services, because both when it comes to getting benefits and when it comes to getting support a great many people run into the problem that Social Services are really set up on the assumption that you’ve got a continuous condition which is equally severe ever day and if, you know, you’ve only got one leg the Social Services know exactly what to do and they’ll give you all the support you need for a person with one leg. But if you’ve got fibromyalgia, if your lucky, you’re interviewed by the Doctor on the day your actually not feeling too good, you don’t want to lie to him so you tell him how you feel, they say oh that’s not too bad, you go away and you don’t get any support and in general, not just fibromyalgia, the National Health Service needs to be better at responding to people who’ve got illnesses which are intermittently very severe. For some people it’s almost continuous and for some it’s intermittent and it needs to be recognized and we need the flexibility to be able to respond to that and give appropriate support. It is quite difficult to define at a national level. What you really need is for the local Primary Care Trust with the flexibility to respond individually. So those are the three things we have been trying to do and we’ve been working with the national association and with our local groups to try to promote all these things and I think we have come quite a long way. I would guess that most MP’s now at least know what it is and the general issues around it. There are a lot of local groups around the country who’ve been heavily involved and who’ve got their MP’s involved. The current secretary of the group Jayne Griffiths who is MP for Reading  East, or is it Reading West, who works very closely with the Reading group and one of the issues that concerns, I think, all of us is that Jayne is not standing at the next election and it’s very important that the work carries on. If  I’m still there after the election, and this isn’t a re-election speech, but if I’m still there I will do all that I can to make sure that continuity is there and we keep the momentum continuing so that you, individually, can get the support that you deserve. Because it’s not an illness that you asked to have, it is not something you, in any way, want to have. It’s something that hits people out of the blue for which, unlike many conditions, it is impossible to get support to lead an active life. So there’s a great deal to gain both for you as individuals and for society. I am glad that the All Party Parliamentary Group is contributing in our way to make things a bit easier. Thank you.                     

Awareness of Fibromyalgia, Awareness 2004. Nottingham group Nottingham City Hospital.

Dr. Kim Lawson, Lecturer, Sheffield Hallam University, Biomedical research Centre.

Good afternoon everybody and thank you for inviting me to talk today. For those of you who do not know me I am a lecturer at Sheffield Hallam University, and I am also a member of the Medical Advisory Board to the Fibromyalgia Association UK. Over the last two or three years that I have been in that position hopefully I have made a contribution to the Association 

Essentially, I was invited along here to talk to you about awareness of fibromyalgia. Although I am actually involved in research in this area, which includes collaborations with people in this country and in mainland Europe, I am not going to focus on that aspect. The primary subject that I want to talk to you about are the changes I, as a researcher, am seeing occurring with actual awareness of fibromyalgia. At the beginning of July I attended an International conference where we were the only group presenting work on fibromyalgia. That may seem depressing that fibromyalgia is only just breaking ground in a few areas.

When we refer to awareness, to me there are two different sides. There is the side of actually making people aware; of going out there, banging the drum and telling people about fibromyalgia. I do not need to tell you about that, because many of you know more than me about how to do that. And through the Fibromyalgia Association you have activated the processes associated with the All Party Parliamentary Group and such like, which has been very positive. The other side of awareness is how is it working? Is it actually working? All of this effort, all of this hard work, is it actually making inroads and being successful? That is the side that I want to say a little about.

Before I became a lecturer at Sheffield I worked in the pharmaceutical industry, where I still have insights and interests. Over the last few years, that is where I have seen the greatest progress. The majority of you will be taking some kind of medication, the medication that you are taking was probably developed for some other condition and has then been “piggybacked” onto fibromyalgia. It is defined as empirical, on the basis that it has worked on something else similar, so we will try it on fibromyalgia or it seems to be having some sort of beneficial effect so we will continue giving it (for fibromyalgia). The medication has not been designed for fibromyalgia per se. However, in the pharmaceutical industry we are now starting to see drugs being specifically designed and developed for fibromyalgia. That is a significant break through, on the basis that the pharmaceutical industry is a powerful lobby. Just to give you a few figures, to get one drug onto the market- from some one having an idea to actually the point of the public taking it-the cost today is in the order of £600 million. That is a major investment. If we think about it the other way round, pharmaceutical companies have to be prepared to invest £600 million before they see any returns.

During discussion I had with a company in July it was identified that presently there are at least three dedicated drugs being developed for fibromyalgia. Whether they actually make it to the market, as the attrition rate in clinical trials is high, is another issue. The important point is that the pharmaceutical industry has now identified that fibromyalgia is worth the investment of hundreds of millions of pounds. We are primarily talking about companies in America as apposed to in the UK or mainland Europe, but the critical factor is that fibromyalgia is being recognized.

Further there is a company called Cypress Bioscience which is dedicated to fibromyalgia-a pharmaceutical company, which has been set up with a focus towards fibromyalgia. Now I know that people may be wary of the pharmaceutical industry because they are there to make big profits by charging large amounts of money for their drugs. That side should not concern people unduly. The key issue is the fact that the pharmaceutical industry views fibromyalgia is of interest. Cypress Bioscience is developing one of the drugs in clinical trials. In addition, pharmaceutical companies have recognized fibromyalgia as an area for fundamental research. So there are positive factors occurring. The biggest problem is that unfortunately people like yourselves do not always hear of such information. You just go along, see your GP or Consultant, and see how far awareness occurs within that side of the health care system. The other side, those organizations that are trying to produce drugs that will help, sufferers rarely hear anything about.

I now want to tell you about some work being carried out in France associated with talking to GP’s and Rheumatologists. Part of this work was presented at the Myopain Conference, an international conference focused on fibromyalgia in Munich in July 2004. Some really interesting facts came out from one particular study. Some 10,000 GP’s and 2,500 Rheumatologists were contacted of which only 10% replied (about 1,000 GP’s and 400 rheumatologists) to this investigation. But of those that replied, only 3% of GP’s and 3% of rheumatologists did not think that fibromyalgia existed. So awareness of fibromyalgia has been building up to the extent that they accept that it does exist. Now I know I am using France as an example but this is starting to occur across Europe not just in one country.

The slightly disappointing part of the study was that when we look at the GP’s, although 97% thought fibromyalgia exists, one third of them did know how to diagnose it. So when we are referring to awareness, it is not so much convincing GP’s whether it actually exists or not, but education about what fibromyalgia is.

A matter of training the GP’s, the health care workers that you visit first, how to diagnose and ensure that the diagnostic process is correct. When we look at the data on the rheumatologists, only 6% did not know how to diagnose. So the rheumatologists have it right, unlike the GP’s.

The incredible fact that came out of the study was that three quarters of the GP’s claimed that they never had any patients with fibromyalgia. So from the awareness side again, that sort of issue needs to be considered. You are the easy cases because you have quite clear cut fibromyalgia. The people that we do not know about are those who appear to have a partial form of fibromyalgia and how do you diagnose those patients. I am sure you all know about the tender points and the process of identifying 11 out of 18 of the tender points. What happens if someone comes along with 9 or 10 points? Do they not have fibromyalgia and so they can go away?

So the issues, with respect to the type of information that came out of this study, that the awareness has to go beyond just telling people about it but how to actually train health care workers to recognize fibromyalgia. So the diagnostic aspect, understandably, has to be addressed.

Thus, when we are talking about awareness, inroads are being made in the healthcare process and GP’s are starting to appreciate what fibromyalgia is but this area needs to be developed. The fact that pharmaceutical companies are prepared to invest high levels of money in fibromyalgia are definite positive signs. Hopefully that will then filter down to actual patients, but it will take a little bit of time. But at least there are rewards for all the efforts that are going on.

Thank you.