Fibromyalgia Support Group for Surrey and Sussex

Report on the 8th International IACFS (International Association of Chronic Fatigue Syndrome) Conference on Chronic Fatigue Syndrome, Fibromyalgia and other Related Illnesses.

Held at the Bahia Mar Hotel, Ft. Lauderdale, Florida, USA.
January 9th - 14th, 2007
by Jo Fisher

After a very early start, Clare and I left the UK bound for Miami airport on the 8th January. The flight across the pond was very long but we made it and the Virgin Atlantic Airways staff were brilliant. The food wasn’t that bad either and the drinks just kept coming, albeit non-alcoholic I might add, for us.

We got there in one piece, just about. We were totally exhausted so just rested on the 9th and went to bed early as we had to be up very early in the morning for breakfast, before the Conference Registration opened at 7am! However, we were waking up between 3am and 5am as our bodies were still in UK time, so we were up and about, but very tired indeed.

The 10th arrived and we were really excited about the coming few days. We soon realised though just how much it was going to take out of us both. We did really struggle at times but fortunately they had a room with beds where you could go for a lie down for as long as you needed to. Both Clare and I had to do that a number of times but we tried to take it in turns so that we were able to cover as much of the Conference as possible. The days were very long (over 12 hours most days!) and we made sure we went to bed early every night in order to recharge our batteries for the next hectic day.

We had no time at all for sight-seeing, the only fresh air (it was lovely and warm but incredibly windy!) we got was walking (or hobbling?!) between our hotel and the Conference hotel every day! My husband couldn’t believe it when I got home to tell him we hadn’t gone anywhere else apart from one hotel to another and I hadn’t visited a single shop and bought anything (you can imagine how happy that made him!).

I know Clare was missing her partner George and her cat. But she was really enjoying the whole experience (having only ever flown as far as Ireland before!) and absorbing all the information like a sponge, as she is hoping to provide a more comprehensive report for us later on.

I also missed home and was very anxious as my eldest daughter had been rushed in for an emergency caesarian on Wednesday the 10th (the day the Conference started). I was in a bit of a state as you can imagine. I wanted to be at home to support my daughter but I was over in Florida working for the Group. It was a trying time. I anxiously waited for the call. It was a little boy, but there were problems. My poor daughter’s husband couldn’t attend the birth as he was ill and was told not to go into the hospital for fear of spreading his illness, so my daughter was without her mum and her husband during the operation and for days afterwards. Luckily her friend Kathryn was there to support her but my daughter said she was traumatized from the whole event and missed me and her husband terribly.

Hours after the baby was born he was transferred to another hospital due to breathing difficulties. This took hours as they had to wait for a specialist London team to come down to the hospital and stabilise the baby before he could be moved. He was eventually transferred to Brighton Intensive Care Unit where he was monitored closely for a week. My daughter joined him as soon as she was able to, but she was in a dreadful state as you can imagine. The baby is called Sonney as my daughter said when he was born all of a sudden this ray of sunshine came into the room and shone on him (ah isn’t that lovely!).

Things are ok now thank goodness, so I now have 7 healthy grand children. I am truly blessed, but will be broke at Christmas!

The Conference
This is just a brief outline of some of the things Clare and I covered while we were at the IACFS Conference in Florida. It may take a while to produce a more in-depth report, due to our health, as we will need time to recover from the trip. The Conference had an intense timetable and each day was incredibly long (12+ hours), the lectures starting at 8am. The information we received in this time was staggering.

It was a five day Conference in all, two days for Advocates, sufferers and families and then three days for Health Care Professionals.

There is a great deal to tell you about the Conference. The presentations we heard from doctors from all over the world were very interesting and also very encouraging. It was great to know that all this research and work is being done to find out more about ME, CFS and Fibromyalgia. Some of the talks were very scientific so thank goodness for the handouts and information we received because at times it was so technical it was difficult to grasp, especially for those of us with cognitive problems.

Saying that though it is the work of these doctors and scientists that are proving that these conditions are very real and they are not a figment of people’s imagination but as sufferers we could have told them that ourselves. But, it’s essential to have the backing of the scientific proof. So please be aware of those doctors, government officials, and the wider community who are still of the view that it is all in your head. I don’t believe this will be able to continue for much longer as there is now just too much scientific proof now to say otherwise.

Clare and I learnt a lot in the first two days on how to be good Advocates in spreading the word and working with others to build good working relationships, how to approach the media and work with them. We learnt much about the conditions and what work is being done. We heard from some excellent speakers, one in particular, Patricia Fennell, was brilliant and I am hoping we will be able to work with her in the future and hopefully sell her book and DVDs as they were very informative and very useful. I am in contact already with her Company. She would be an excellent speaker to have over here in the future.

I also spoke with another doctor who did a presentation and she and colleagues are looking at adapting the Expert Patient Programme model and making it more suitable for ME, CFS and Fibromyalgia which I feel would be very helpful. But this is only in its infancy and will depend on finances etc. and it will require many people to put it together.

I did network with many different people and will gradually wade through all the Business Cards and books in the coming weeks.

There was also an exhibition hall and I picked up lots of literature from there too, and made some Contacts, which may bear fruit in the future.

It would appear from all the papers and studies that have been done over the last few years that things are starting to come together and create a definite picture of what these conditions really are. It feels like we are not far away from discovering treatment options that will help Health Care Professionals to work with us and enable us to have a better quality of life for ourselves and for others that are diagnosed in the future.

There were approximately 28 different countries represented at the Conference, all working to understand these debilitating conditions. It will be those doctors that go back to their own countries and share all the information they have learnt and discussed at the Conference. This will hopefully encourage even more research in the future to help patients and Health Care Professionals alike.

Clare and I met some wonderful people who were happy to share information and Contacts. I did get to speak to quite a few of the doctors and in particular one of the Board Members of the IACFS. We spoke for around 10 minutes on the difficulties faced by our members in the UK and he was already aware of some of this and was very interested to hear what I had to say.

He said that the Board would like to do a Conference in the UK next year but needed information on Conference venues etc. Well you only have to mention something like that to me once and my mind was in overdrive! I told him I would contact him when I arrived home which I did and we have exchanged a number of emails since. I have sent him lots of information regarding the Brighton Centre and its facilities with the help of Charlotte, a volunteer working with the Group. This information has now been passed to the Board of the IACFS, so fingers crossed everyone for an International Conference next year. There are no promises but it would be fantastic if it did come off.

It was also great to talk to other sufferers from other countries to see how they were coping and what difficulties they experienced, what treatments were available to them and how they were perceived in their countries by the Health Care Profession and Government Bodies as a whole. It is interesting to see that we all seem to have similar problems but some have far better treatment facilities than others.

I found it really hard seeing and speaking with many of the children and teenagers affected by this condition and to listen to the parents who were desperate for something to help their children. What was great was that many of the parents have got together and started a support network for them and for their kids. The networking that goes on at these Conferences is so important.

Many doctors and Health Care Professionals had come to the Conference to learn all they could to take back to their own countries to educate others on what was happening in the world of CFS, ME and Fibromyalgia which was really encouraging to know. We even met a few doctors and support workers from England.

I have been in touch with one of them since returning home and he has given me lots of information re. doctors in this country that have written papers on Fibromyalgia or have an interest in it so I will follow up on some of these later. One of the other doctors we spoke to was Dr Vance Spence who suffers with ME and he went to the Conference to share his work on ME in the UK. Also there from the UK was Dr Jonathan Kerr presenting his work on genetics. There were also many doctors from Japan talking about their very interesting research which will hopefully help us to understand this condition better.

It was great to see the unity amongst the doctors and total commitment in wanting to find the answers to the questions about these conditions and their underlying causes. It helps to know that things are being done and they are getting somewhere so we have something to feel really positive about and ever hopeful of further treatment options in the future.

I am really grateful to the IACFS for being able to bring all the Advocates from around the world together to meet and discuss issues and to learn from each other so they can go back to their own countries and spread the word and look to a brighter future for everyone.

I would like to thank the Committee for agreeing to send Clare and me to the Conference and to also thank our Funders, without whom the trip would have been impossible. Our very special thanks go to PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy) especially Marly Silverman and Rebecca Artman and the other PANDORA volunteers for their enormous contributions to the Conference and for awarding us Scholarships to attend the Patient Conference and assisting with our accommodation costs.

We hope to share much more with you in the near future.

Pat Fero's report on the IACFS Conference

Cort Johnson's report