From the News Desk of Jeanne Hambleton
JUST enjoyed our 5th FibCon with rave reviews from delegates AND the speakers who came from overseas and the UK. A very big thanks to the Team, Teresa White, Leanne Daniel, and Simon Stuart and to an army of volunteers (to many to mention) who made the ‘wheels go round’. We also have a new Folly Pogs Trustee and treasurer Peter Crabtree who deals with policies and our funds while Simon deals with bookings for the conference.
Our thanks to everyone who helped including our lovely friendly speakers and the delegates for their support. Each year we strive to bring something new and more exciting to our long weekend break – 4 days and 3 nights Friday/Monday. We even offer stage payments so you have nothing to pay when April 24/27 2015 comes round except for the fares and spending money,
We invited some experts for our first Benefits Clinic and provided some interesting workshops with Roz Macarthur and her Fitter Sitters, Veronica Pettifer with lymph drainage and reflexology, Kim Lovelace with his Qiqong and another regular Lisa Sturges from Laughterlines Coaching in Bosham. Sue Horton (USA) ran three physical therapy workshops. She provided free physical therapy for fibromyalgia aches and pains in the neck, back and where it hurt. Both Prof. Andrew Holman USA and Sue have said they will come back again next year. They were certainly both a big hit with the delegates – so approachable.
Had a great letter from a delegate in France, who travelled alone and joined in everything. She was amazed at what she learned about fibromyalgia and really enjoyed talking to the professionals – as good as a free private consultation and all-inclusive in the conference. We offered Meet the Doctor sessions for close up and personal meetings and book signing by our Professor who is also an author Dr. Natasha Campbell-McBride, worldwide lecturer on guts and psychology. Prof. Andrew Holman, our keynote speaker who gave our first series of 4 lectures, ended with the final presentation on the last day. This was all about the Big Question – of course FM. Others included Professor Trudie Chalder from Kings College, an expert who talked about CFS. Dr. Andrew Dilley from Brighton & Sussex Medical School enlightened us about peripheral neuropathy and the links with fibromyalgia.
We welcomed Colin Eveleigh responsible for Everyday Mindfulness, which was a great success, and he has already been invited to visit FM groups to give them a talk. Good luck Colin. Debbie Barnes, a hypnotist talked about hypnotic gastric bands. Patients do undergo the operation “in their mind” visualising the operating room. I think this is the secret of the success. What do they say? No pain. No gain.
Nancy Gordon from the USA charmed the Brits with her stories about Xolo Mexican Hairless dogs that ease fibromyalgia pain and are easily trained as service dogs. Getting a Xolo dog from Mexico (they have a great history) would be a task but with Nancy’s help maybe not. A very persuasive lady. The delegates really enjoyed the change from medicine.
Another big attraction was the Sunday morning sessions all devoted to the fibromyalgia clinic at the Royal London Hospital of Integrated Medicines in Gt. Ormond St. London. It was organised by the well-known Dr. Peter Fisher, homeopath and rheumatologist. He is also physician to HRH The Queen. Dr. Fisher brought his London team for us to learn what treatments are available. An interesting morning with NHS promise.
We are hoping Prof Holman having met Dr. Fisher will be able to help him to set up a UK clinic at the Royal London Hospital for Integrated Medicines FM clinic for those suffering with PC3 using MFi scans linked with fibromyalgia under the NHS. We have our fingers crossed for him and hope Prof Holman might be in London again before next conference making plan to set up this much needed clinic. A bit of patient pressure might help if you want to try this amazing treatment and share the knowledge.
At a previous conference speakers from London and Southampton, dining together, decided to collaborate and were able extend the expensive MFi treatments to more FM patients allowing for further research. So even the unexpected can happen at the London hospital – we hope. The alternative is a flight to Seattle in the States with a fat wallet. I am told PC3 can be sorted with surgery.
Our conference finale was Doctors on Stage for a round table discussion with the remaining speakers including Prof. Holman, Sue Horton. Dr. Fisher and Dr. Sharman and two local GPs, Dr. Gregory Tamlyn and Dr. Manor Bhatt. Both GPs treat patients with fibromyalgia at the Witterings’ Health Centre.
KEEPING A RECORD
With this conference now done and dusted and heading for the archives, we are hopeful we might at long last find someone to make saleable DVDs films from our presentations to make them available on line. The set up costs are worrying and we would love a sponsor. This is just talk at present but we have high hopes for the New Year. After costs the sales money will go to fibromyalgia research through Folly Pogs FM Research.
(No we never stop wondering how to raise research money.)
Eventually we hope we can include other important speakers from earlier conferences maybe including Prof. Mohammed Yunus, the ‘godfather’ of FM.
We wish to extend our grateful thanks to Glenda Philpott who for years has remained in the background diligently filming what was being said. A big thanks to Glenda for her part in what we hope will be a worthwhile money-spinner for FM research.
THE SHAPE OF THINGS TO COME
So what is happening at FibCon 2015?We have a hotel booked and a date – April 24/27 2015 with a possible pre treatment day on the 23rd by ticket – an optional addition for fibro research as requested by Prof. Holman and Sue. We hope the Chichester Park Hotel will offer special overnight stay costs for dinner, bed and breakfast…subject to confirmation.
We also have speaker who has said ‘yes’. A former neurosurgeon with a big big reputation, originally Doctor, Devin Stanlanyl. Devin has a huge FACEBOOK fan base and we are expecting many of her fans to make the journey to conference – so book early or you might be late for the comfy beds. We have fewer than 200 places. Devin who seldom leaves her American home near the borders of Canada, is following her conference visit with a trip to her French fans where she is making a one-day appearance. We delighted she has said yes. Devin has recently published a new book about myofascial pain which may already be available on the Folly Pogs website. If not please write to me direct.
On the “ I would like to come if I can,” list we have FM expert USA Prof. Daniel Clauw, very familiar with the Gulf War experiences and Director of Chronic Pain & Fatigue Research Centre, He is also teaching at the University of Michigan. I first met Daniel at the American NFA FAME conference and he was a great friend of Richard Usher, former founder of the online FMSGLOBALNEWS. I was the UK correspondent in those days. When Rick died suddenly some years ago, while writing music to sell for research, I became the News Editor and still try hard to keep up to date….not easy with so much going on in my life. The conference is so time consuming and takes up almost a year of my life. Dan is a nice man and I look forward to seeing him again.
We have chased Patrick Wood, MD and researcher, who has been to an Ireland conference but not to Chichester yet as he who recently opened his own clinic in March in the States. Patrick and Andrew Holman worked together on the first MFi brain scans of fibromyalgia patients and found differences in our grey matter and chemical imbalances. Ultimately with Patrick working with Andrew and with brother, Storme Wood, DVD film producer, made “Show me where it hurts”, a famous hour long USA DVD FM film. We are delighted Storme sent some copies of the DVD to the UK for Folly Pogs to sell for research. These are believed to be the only copies in the UK other than personal copies.
With Andrew Holman’s help we are now chasing Patrick and Storme to visit in 2015. Andrew has also suggested we invite – if he will come – Prof. Harvey Moldofsky, M.D., Dip. Psych., F.R.C.P.(C) who I also met at that conference. Synonymous with the National Sleep Foundation, well known at his Toronto clinic, he is one of the original researchers working with fibromyalgia sufferers FM sleep disorders.
Also Dr. Jacob Teitelbaum has made promises to come but with a year’s notice we hope we can persuade him to make it this time. He is also a good friend of Devin’s so we hope he will say yes.
So we are hopeful we could have a full house of American researchers and news of recent developments – best yet. We say that every year but 2015 is looking promising. We have no guarantees but we have ‘promises’ and I will do my best on your behalf to see they keep their promises.
Email me if you want to come to conference – which is an experience in itself even if you do not have FM. If you wear a yellow badge we know you have FM. Wearing another colour you may be family, a friend, presenter or one of our helpful volunteers. A great weekend at around £200 or £220 per person, depending when you book, comfy bed, great food, good chef, staff unusually helpful, nice modern room, a pool, Jacuzzi, spa, steam room, exercise equipment – all available for guests, plus a Beauty Parlour on site for a quick massage or face lift.
This next conference will take a bit of organising but it will be worth it and fun as every booking contributes to fibro research as Folly Pogs Fibromyalgia Research backs conference. I really want a cure – not only for my family and grandchildren but the unborn babies of tomorrow. I can struggle along but they will live with our pains. For more conference information or offers of sponsorship to become part of the Folly Pogs Fibro Family (and we will love you to bits if you sponsor Folly ~Pogs) email me Jeanne@follypogsfibro.org or ring 44 (0) 8433 828 829.
Two weeks after conference we will be knee deep in the UK General Election on 7th May 2015. We thought about inviting Ukip Nigel Farage to our conference as that Party appears to keep their promises and they are looking for a big lead – but would we get money for FM research from the new Government.
We need someone who is destined for the next Parliament to convince me. The UK Parliament is dissolved on March 30th 2015 . What happens in the following 5 weeks if we need an urgent decision. The date for the new Parliament to return has not been announced….I might rest easier if President Obama would pop over and fill in briefly…. a flight of fancy? This would be better than nothing without getting political. But as long as they will not give us money for research for FM while ME got millions, we are destined to be political.
You should book conference now especially if you want a single room . These are only available in single figures so act now but it is cheaper to share. Take care. Jeanne