Tag Archives: Research

JUST WEEKS AWAY – 6th INTERNATIONAL FIBROMYALGIA CONFERENCE 2015

If you have not booked for our 6th  international Fibromyalgia Conference on April 24/27 2015, at Chichester Park Hotel,  it is not too late but  do not waste time. We have a lot of interest. The hotline to book  0844 887 2512.

Once again the cost is as low as we can make it to enable folks to enjoy the education, research news, make new friends, as well as entertainment, fun and laughter. You will have a chance to talk to the speakers personally 1-2-1 – almost a private consultation as part of the conference weekend and you will be among folk who understand your aches and pains. It has been said, “Conference is a great educational and life changing experience”. We aim to please.

If finding the fee is a stumbling block, you could make payment by using your credit card. Why not add it to your Tesco shopping credit card  as a “lend” and pay off a little each month. Paypal will accept  credit cards with an additional 4% charge. If you need help with the process please ask.

When folks talk about fibromyalgia there are several symptoms most of us suffer and  live with. This includes pain 24/7, chronic fatigue, sleeplessness, cognitive behaviour, IBS, morning stiffness,  depression and many more. This conference our experts will be highlighting some of these symptoms. With a wide and varied programme around the main FM symptoms, we are aiming to help with interesting speakers from the USA, Canada, Australia and the UK.

Iris Weverman, a registered physiotherapist from Canada who specialises in FM, will talk  about chronic fatigue, stiffness and exercise  for fibromyalgia. In her second talk she will discuss trigger points versus tender points … not to be missed.

Dr. Nick Read,  a gastroenterologist psychoanalytical psychotherapist, human nutritionist, interested in FM, will talk about his active involvement in the IBS Network , and integrated medicine.  As a nutritionist we are hoping he will give us a recommended diet for those with IBS.

Andrew Pothecary, a specialist pharmacist in Rheumatology & Biologics at the Royal Cornwall Hospitals NHS Trust, will be  lecturing at The Clinical Pharmacy Congress on the Future of Clinical Pharmacy in London on the Friday. As an old friend, he has agreed to stop over and talk to us on Saturday. We hope to learn more about the medications that our GPs prescribe for fibromites  pains.

Afifah Hamilton, MNIMH Cert Phyt ITEC, GAP practitioner and nutritionist, is an alternative medical practitioner who uses herbal remedies for wellbeing. Afifah is medically trained and a specialist in physical, psychological and conventional treatments with herbal options. She will be discussing sleeplessness  among other symptoms. If you are prone to too  many drugs, you should not miss this presentation.

An American lady with fibromyalgia and a great reputation, will be with us to talk about her commitment for FM. We hope she will include news of research, life with FM in the States and living with fibromyalgia. Jan Chambers is President of the USA National  Fibromyalgia & Chronic Pain Association, founder of the Centre of Understanding, Research and Education of Fibromyalgia (CURE FM) and co-founder of the NFA Leaders Coalition, Executive Committee. Married for 35 years and the mother of 5 children, Jan has had a roller coaster ride with fibromyalgia since 2005. Her background really makes interesting reading and will save a lot of questions if you are coming to conference. This is a lady who commands my highest respect and I am honoured she has agreed to visit us. Try http://www.fmcpaware.org/jan-chambers. “I’ve got my life back, and I love every minute of it” she said.

Another interesting speaker with big claims is Philip Rafferty. Born in the UK he lives  in Australia and travels the world. A specialist in fibromyalgia, chronic pain and CFS he is a kinesiology ‘wizard’. He claims the corrections he teaches fibromites keeps them out of fight/flight/ freeze/survival. What he does he says is different to anything else. He  claims he achieves instant dramatic pain reduction. This I  must see!

We are again pleased to welcome Wes and John with the Benefits & Debt Clinic which will be operating Friday afternoon from 3.15pm. Look at their website – for debt and benefits http://frontlinedebtadvice.org.uk/ – you might find it interesting.

As usual there will also be other attractions. On Friday evening we have the film premier of the documentary movie made at FM Conference 2014. Called ‘Focus on Fibromyalgia’ it includes consultants’ comments as well as the views of those who live with this condition. Be sure to see the film as it is a movie you should not miss. Lasting 65 minutes, it is full of information and you will need to go back and back again to the film to see what you missed. Copies of the film will be available to purchase with a donation from sales  to fibro research.

THERE IS MORE

Jen Lee is back with us again for some light relief and with more Belly Dancing steps to learn. We hope to have all doctors on stage Sunday afternoon for discussions and questions. Do not forget the fun auction of wine and other gifts donated by delegates on Monday morning.

Simon Stuart, a leading member of the FibCon team, who works in the medical profession with the elderly, will be giving a talk about Alzheimers – a hot topic at present. You will also meet Nicki Southwell this time. A name some will know, Nicki has been working with Simon and I for several months as Assistant Co-ordinator. We were sorry to lose Teresa White towards the end of last year, due to her health problems. We understand she is on the mend but taking things slowly. We have a great team of helpers this year who will be wearing their pink badges and should be able to help delegates and answer questions.

To join us for some worthwhile education, fun, laughter,  email Simon Stuart at fibcon2015bookings@gmail.com to check availability and book or ring the HOT LINE 0844 887 2512  to book or email jeanne@follypogsfibro.org. to reserve a room and get a booking form.

This conference will be an action packed weekend as usual – Friday to Monday –from April 24th  to 27th  2015 at Chichester Park Hotel, plus evening entertainment, all included for £220 per person sharing double room – just £55 a day all found. This covers the cost of  food, accommodation,  the conference and entertainment. There are no single bookings now only a waiting list. The food is good and the staff are very helpful. The hotel has an indoor pool, jacuzzi, spa and some  exercise equipment for use of our visitors.

STOP PRESS –  We have been offered  a trial run of the new and exciting ActiPatch. We have a patch for each delegate to try.  If it works for you Boots sell the patches which  I believe is  a forerunner of a Electromagnetic Pulse Therapy device which provide 90 hours of 8 hour treatments (720 hours). We only have patches.

ActiPatch is said to be a highly effective therapy by chronic pain individuals and trials have increased purchases. This reflects the result of the reported benefits of clinically significant and sustained decreases in chronic pain, large improvements in quality of life, and decreases in the reliance of analgesic pain medications including opioid based drugs. We have had news from an American FM group where members used the patch and are excited about it. There is only have a limited number of patches for FM delegates only.

Finally it is worth mentioning the weekend conferences are sponsored by Folly Pogs Fibromyalgia Research. Every booking makes a contribution to fibromyalgia research and the raffle and other paid items contribute to FM research. No one gets paid except the bills. We survive under The Old Pal Act 1845. We beg and borrow to make ends meet.

There is always someone to  talk to at conference if you come alone. You will soon make new friends and meet others at our Friday ‘onesie’ meeting for those who are alone.

We hope it will be another smash hit conference with entertainment, fun and laughter with educational and helpful tips. For more information about this and the last conference  –  see http://fibromyalgiaconference.weebly.com. Hope to see you at conference. Jeanne

car anf flag 4

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Folly Pogs FM Philanthropists

Surprise surprise! Here I am back again – apologies for being AWOL – absent without leave – but these things happen.

Sorry I have neglected you and Twitter, Facebook, MySpace and so many other ‘pies’ I have my fingers in but quite a lot has been going on in my life… for example 2 young grandsons and you all know how much time that can take… not to mention a heavy workload.

To be honest I am here this time to answer a few questions and take you back to 2007/2008 when with dear friend, Sarah,  pre my commitment to FMA UK working as a Regional Coordinator. I persuaded her to help me organise the Folly Pogs Ball. Why Folly Pogs – don’t ask – I cannot remember why but folks remember it…. except the F and P represented Fibromyalgia Philanthropists.

WHERE AM I COMING FROM?

Driven by a passion to get funds for research I wanted to help to find a cure and the cause of this rotten invisible disability called fibromyalgia. As I said I have two grandsons under 5 and 3 children and I would not wish this condition on any of them, although I believe one of  my sons has all the signs. So I had to get off my butt and do something about it.

What Folly Pogs had not planned for was the financial crisis which started to bite in the autumn of 2008. Our event was scheduled for September that year.

We had big plans but sold so few tickets we were advised to give the ticket money back to keep our reputation in tack. We lost money on the entertainment and missed the chance to get the stars of The Calendar Girl stage production to come to the ball with several Page 3 girls. It was a big disappointment.

This is the report FMA UK carried for me as at that time

http://www.fibromyalgia-associationuk.org/latest-news-mainmenu-2/-events-mainmenu-38/311-folly-pogs-lose-their-ball

As you can imagine Sarah and I were both feeling dejected and decided in the New Year to do a Mother’s Day pamper event.  Bad weather and possibly personal celebrations and bad weather  reduced our income from that night to £82 instead of the estimated £500.

Yes it was bad luck.  After the dust settled in the autumn of 2009 I once again pressed my friend rather heavily and got her involved in the first Fibromyalgia Conference & Pamper Weekend in April 2010.

Although my friend was a  ‘normal’ and keen to help a friend, I managed to kill off her enthusiasm for the next conference. In a weak moment on April 26 2010 when vulnerable I had yes I would do it again and had to get on with it.

We could have not find the funding for a cameraman/filmaker to capture the weekend so we can have DVDs and allow some 170 FMA UK groups across the UK to hear the speakers in their own meetings as another means to raise funds for research. Sponsorship is still hard to get.

FMA UK came up trumps and provided the conference bags for which we were grateful and we duly stuffed the bags with all things FMA UK and other bits and pieces. This year we are anxious to find literature and goodies for the bags which may well have been Tesco plastic shoppers – the white recyclable ones that disintegrate after about 4 weeks making an awful mess on the floor. But Labrha, a French supplements company came to the rescue and provided purple bags.

Pam Stewart came to the conference to fly the FMA UK flag with her exhibition stand and helped folks find groups if they did not already belong. This year at the second conference FMS SAS also had an information table  organised by Nicholas Bond GL for Worthing & West Sussex FM SG and a  FMS SAS Trustee.

We knew we wanted to raise funds for research but we also knew we had big expenses to meet, so in April  2010 we dedicated the funds from the raffle, tombola and a charity auction to the Folly Pogs FM Philanthropists research fund then boasting it’s full and more respectable name. The raffle and tombola raised approximate £800 and the charity auction raised a similar amount  £801. With a donation from Nene Valley FM SG and other financial gifts we now have £1770 in the account. More recently we had had further donations totally another £650 plus  – thanks Marie Caroline, Cherry and an anonymous donor. So we are heading in the right direct.

A REGISTERED CHARITY

It was my hope that by now we would have raised £5,000 for this fund to become a charity before the base figure rises to £10,000.  A few of those fibromite who know our background and what we have been trying to do, have agreed to become trustees once we are accepted by the Charity Commission. Currently we are Not-for-Profit but that does not open the doors of grant making trusts. The Trustees will eventually claim funds from grant making trusts and decide how and where the money is spent. Some of these prospective trustees may be your friends.

This year we ran another conference in April 2011 but due to rising costs and the VAT increases, the lack of manpower it is unlikely we will raise as much for research as we did last time, sadly. However the event with 14 speakers, 14 workshops, 6 exercise programmes and pamper tasters and one to one therapies was another success. There were disappointment in the planning and two big  names dropped out after we believed for 9 months that they would come. This was a big disappointment. But my dear ‘normal’ friend Sarah, and my family, dragged me back to work, I regained my sanity,  and it all worked out very well.  My  dear late Mother always said, “Things happen for a reason. As one door closes, another one opens.” I am still waiting for the opening door  but I live in hope. Maybe some kind millionaire will read this and make a  handsome donation. Is that the opening door I am waiting for I wonder?

THE BACKGROUND TO MY PASSION

The background to my passion about research goes back to 2006. I had visited the States for an NFA conference and was overwhelmed by the knowledge they had that we had not heard of.  They were light years ahead of us.

The manufacturer of a topical pain killing substance offered to fund a book if I would write it. I agreed, went home and started researching and writing.  Buy sadly he wrote from the States and said his company was having a bad time and could not the fund the book.

It was thanks to FMS SAS that as a member of their group since 2003 when I was diagnosed, I was able to visit the California conference and produced a comprehensive report for them.

In 2006 I started the book ‘for real’ and began seeking funds wherever possible. I had intended to finish it pre the April 2010 conference but suddenly the April 2011 conference got in the way as well as my work with FMA UK.  There were just not enough hours in the day.

I am now keen to get this done as I have pledged money from sales to the Folly Pogs FM Philanthropist Research Fund UK.

It is my hope the book will be completed soon and will go on and on and the trustees will continue to seek funding for research when I have left this Mortal Coil.

On that happy thought I had better get back to the drawing board,  finish my paperwork and get back to the book.  You never know I might yet fight my way back onto MY Twitter  section which is currently inhabited by squatters.

If you feel as strongly as I do about the lack of  Government funding for research to find a cure and the cause,  and feel like pressing your MP  to ask that question in Parliament, look up your MP on TheyWorkForYou.com and just add your post code and  you have the details. You could ask him if we can have a Fibromyalgia Flag Day – that would help too.

If you are in the mood to do some fund raising  for research on  the INTERNATIONAL FIBROMYALGIA AWARENESS  DAY, MAY 12th and want to donate  your funds to research,  I would love to hear from you.  Once we are regsitered we will  look at Gift Aid.  Email me at  jeannehambleton@me.com  if you want to help and be involved in our research  project. I always have time for fibromites and those willing to back our research project.

Take care, keep well, good luck on May 12th. Fibro hugs Jeanne

What’s in a name? Perhaps more (or less) money

From the Fibromyalgia News Desk of Jeanne Hambleton

March 10 2009

 

Before employers have a chance to judge job applicants on their merits, they may have already judged them on the sound of their names. According to a study published in the latest issue of the Journal of Labor Economics, immigrants to Sweden earn more money after they change their foreign-sounding names.

 

Study authors Mahmood Arai and Peter Skogman Thoursie (both of Stockholm University) found an earnings increase of 141 percent for a sample of African, Asian and Slavic immigrants who changed their names to be ethnically neutral or a bit more Swedish-sounding. The earnings increase is mostly due to individuals within the group who reported little or no earnings before the name change, but significantly more shortly afterwards, the authors say.


“[W]e believe [the name change effect] stems largely from improving one’s chances of being called to a job interview and thus increasing employment probabilities,” the authors write. “Employers might sort out the applicants with foreign-sounding names due to [notions] about abilities and characteristics assumed to be associated with such names.”


Arai and Skogman Thoursie used a sample of 641 immigrants who registered a name-change with the Swedish government between 1991 and 2000. The researchers analyzed earnings in the three years before and three years after a name change using a statistical method that accounts for inflation and differences in earnings related to age or place of residence. The analysis showed that the increase in earnings generally occurred the year after a name change became final.


While the authors concede that there could be confounding factors in the data, they do not believe those factors affect their conclusion.


“It is reasonable to assume that individuals who change names … also try other strategies, such as an intensified job search, in order to improve their chances of employment and earnings,” the researchers write. However, there is a time lag of one to two years between when application is made and a name change becomes final. There would be no reason, the authors argue, not to intensify the job search while the name change application is being processed. “If the [name change effect] is contaminated by … other strategies, we should observe an effect in the year before the actual name change.”


No significant increase in earnings was found in the year before name changes became final.

 


Mahmood Arai and Peter Skogman Thoursie, “Renouncing Personal Names: An Empirical Examination of Surname Changes and Earnings,” Journal of Labor Economics 27:1 

Contact: Kevin Stacey  kstacey@press.uchicago.edu  773-834-0386  University of Chicago Press Journals 

(http://www.eurekalert.org/pub_releases/2009-03/uocp-wia031009.php)