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.



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.



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 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


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Want to learnmore about your FM? Don’t miss our Fibromyalgia Conference….17 days and counting


With so  many folk enjoying our  FM conferences and with the last one a sell out and great success, we are  anxious you should know the clock is ticking and there are not many spaces left.

Yes, you are invited to the 5th international Fibromyalgia Conference  on Friday/Monday March 28/31st 2014 at Chichester Park Hotel in West Sussex, UK.

With 4 day 3 night event  dedicated to the education of fibromites with some fun and laughter in the evenings, this is an opportunity not to be missed.   Our objectives are to invite  FM speakers from abroad plus UK  Consultants and specialists,  to share news of research and progress in the fight to find a cure. Saturday and Sunday offers wall-to-wall speakers with 11 specialists sharing their knowledge with you.

Supported by Folly Pogs Fibromylgia Research, the conference was founded in 2009 with the first conference in 2010. The idea was to raise funds for research, sharing education with those suffering with FM and to offer stage payments to those struggling to get to  more FM education at conference.

For the 2014 conference this month we are delighted that Professor Andrew Holman has agreed to join us for the long weekend. We are even happier that he has agreed to give us our first series of four lectures during the conference. This will conclude with  “THE BIG PICTURE: How BJH, ANS, PC3, sleep and dopamine unify FM. Making Sense of the nonsensical.”

Other speakers  during the conference include  Russian Dr Natasha Campbell-McBride, worldwide lecturer and neurosurgeon who specialises in the gut, psychology and nutrition. Also  Dr Peter Fisher, who is the Physician to HRH The Queen of England, is bringing a team of doctors and specialists who represent a new fibromyalgia clinic  in London.  Other speakers will be talking about mindfulness, hypnotic gastric bands,  healing provided by  Mexican hairless dog, new research relating to nerve ends and fibromyalgia and much more. Delegates are looking forward to the very popular informal sessions for  MEET THE PROFESSOR and MEET THE AUTHOR where they can purchased  books signed by the author.

There are a few double rooms available with twin or double beds. …sorry no singles (bring a friend). The  conference with accommodation and full board plus evening entertainment costs just £200 per person sharing a room  for 4 days and 3 night. The fee includes full  board, accommodation, the conference and all that entails plus entertainment.

To book email or 

or ring 44 (0) 8433 828 829

The hotel are offering special rates for extended stays for those wishing to visit the The Mary Rose Tour, and  Nelson’s HMS Victory,  the Submarine  Museum, Fishbourne’s Roman Baths or Chichester’s lovely Cathedral.  

Just email us for a booking form to secure your space for two people. Looking forward to seeing you. We are going to have a great conference this year – yes another one. Our fancy dress topic is EastEnders, our daft dancing competition is back if you want to win a medal,  and our ukulele friends from Southampton are in fine voice with the promise of some jamming. Great excitement too on Friday that is Race Night with a prize for the Top Titfer.  Don’t miss this opportunity. Get ready for an interesting and fun weekend.

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Scientists Identify Clue to Regrowing Nerve Cells

From the News Desk of Jeanne Hambleton

Embargo expired: 11/7/2013 12:00 PM EST
Source Newsroom: Washington University in St. Louis

Newswise — Researchers at Washington University School of Medicine in St. Louis have identified a chain reaction that triggers the regrowth of some damaged nerve cell branches, a discovery that one day may help improve treatments for nerve injuries that can cause loss of sensation or paralysis.

The scientists also showed that nerve cells in the brain and spinal cord are missing a link in this chain reaction. The link, a protein called HDAC5, may help explain why these cells are unlikely to regrow lost branches on their own. The new research suggests that activating HDAC5 in the central nervous system may turn on regeneration of nerve cell branches in this region, where injuries often cause lasting paralysis.

“We knew several genes that contribute to the regrowth of these nerve cell branches, which are called axons, but until now we didn’t know what activated the expression of these genes and, hence, the repair process,” said senior author Valeria Cavalli, PhD, assistant professor of neurobiology. “This puts us a step closer to one day being able to develop treatments that enhance axon regrowth.”
The research appears Nov. 7 in the journal Cell.

Axons are the branches of nerve cells that send messages. They typically are much longer and more vulnerable to injury than dendrites, the branches that receive messages.

In the peripheral nervous system — the network of nerve cells outside the brain and spinal column — cells sometimes naturally regenerate damaged axons. But in the central nervous system, comprised of the brain and spinal cord, injured nerve cells typically do not replace lost axons.

Working with peripheral nervous system cells grown in the laboratory, Yongcheol Cho, PhD, a postdoctoral research associate in Cavalli’s laboratory, severed the cells’ axons. He and his colleagues learned that this causes a surge of calcium to travel backward along the axon to the body of the cell. The surge is the first step in a series of reactions that activate axon repair mechanisms.

In peripheral nerve cells, one of the most important steps in this chain reaction is the release of a protein, HDAC5, from the cell nucleus, the central compartment where DNA is kept. The researchers learned that after leaving the nucleus, HDAC5 turns on a number of genes involved in the regrowth process. HDAC5 also travels to the site of the injury to assist in the creation of microtubules, rigid tubes that act as support structures for the cell and help establish the structure of the replacement axon.

When the researchers genetically modified the HDAC5 gene to keep its protein trapped in the nuclei of peripheral nerve cells, axons did not regenerate in cell cultures. The scientists also showed they could encourage axon regrowth in cell cultures and in animals by dosing the cells with drugs that made it easier for HDAC5 to leave the nucleus.

When the scientists looked for the same chain reaction in central nervous system cells, they found that HDAC5 never left the nuclei of the cells and did not travel to the site of the injury. They believe that failure to get this essential player out of the nucleus may be one of the most important reasons why central nervous system cells do not regenerate axons.

“This gives us the hope that if we can find ways to manipulate this system in brain and spinal cord neurons, we can help the cells of the central nervous system regrow lost branches,” Cavalli said. “We’re working on that now.”

Cavalli also is collaborating with Susan Mackinnon, MD, the Sydney M. Shoenberg Jr. and Robert H. Shoenberg Professor of Surgery, chief of the Division of Plastic and Reconstructive Surgery and a pioneer in peripheral nerve transplants. The two are investigating whether HDAC5 or other components of the chain reaction can be used to help restore sensory functions in nerve grafts.

Funding from the National Institutes of Health (DE022000 and NS082446), the McDonnell Center for Cellular and Molecular Neurobiology, the Hope Center for Neurological Disorders and the National Research Foundation of Korea supported this research.

Cho Y, Sloutsky R, Naegle KM, Cavalli V. Injury-induced HDAC5 nuclear export is essential for axon regeneration. Cell, online Nov. 7, 2013.
Washington University School of Medicine’s 2,100 employed and volunteer faculty physicians also are the medical staff of Barnes-Jewish and St. Louis Children’s hospitals. The School of Medicine is one of the leading medical research, teaching and patient care institutions in the nation, currently ranked sixth in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children’s hospitals, the School of Medicine is linked to BJC HealthCare.

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Exercise Program in Senior Centers Helps Decrease Pain and Improve Mobility of Participants

Hospital for Special Surgery study shows program helps reduce arthritis pain for Asian seniors


Released: 11/5/2013 12:45 PM EST
Source Newsroom: Hospital for Special Surgery

Newswise — Experts say it’s never too late to reap the benefits of exercise, and a program offered in New York City senior centers is improving quality of life for many older adults.

The exercise program, offered by Hospital for Special Surgery (HSS) in senior centers in New York City’s Chinatown and Flushing, Queens communities, has helped decrease pain, improve mobility and enhance the overall health of many participants, according to a study by HSS.

The research, titled “Impact of an Asian Community Bone Health Initiative: A Community-Based Exercise Program in New York City,” was presented at the American Public Health Association Annual Meeting on November 5 in Boston.

The Asian older adult population in New York City grew by 64 percent from 2000 to 2010, and one in four seniors lived in poverty in 2010. “This population is at risk for osteoarthritis and osteoporosis,” said Laura Robbins, DSW, senior vice president of Education and Academic Affairs at HSS. “They are more than twice as likely to have no health insurance coverage compared to other major race and ethnic groups. Cultural and linguistic barriers limit access to healthcare services.”

To address these issues, Hospital for Special Surgery developed the Asian Community Bone Health Initiative, which is comprised of culturally-relevant, bilingual education and exercise classes. The initiative plays an important role in enabling the hospital to meet the musculoskeletal health needs of Asian older adults living in New York City, according to Sandra Goldsmith, MA, MS, RD, director of Public and Patient Education.

Six eight-week sessions of the Arthritis Foundation Exercise Program (AFEP) and three eight-week yoga exercise classes were conducted by bilingual instructors at four senior centers in Chinatown and Flushing, New York. The programs promote self-management of arthritis and other musculoskeletal conditions through exercise.

“Getting seniors to be active in any way will generally improve their quality of life and help them function better in their everyday activities,” said Linda Russell, MD, a rheumatologist and chair of the Public and Patient Education Advisory Committee at Hospital for Special Surgery. “People believe that if you have arthritis you shouldn’t exercise, but appropriate exercises actually help decrease pain.”

The AFEP sessions offered by HSS instructors consisted mainly of chair-based exercises. The yoga sessions featured beginner yoga classes.

The goal was to help Asian seniors decrease musculoskeletal pain, stiffness and fatigue; improve balance; reduce falls; and increase physical activity.

The program was offered between November 2011 and September 2013, with a total of 199 participants. A survey was distributed before and after the exercise classes to evaluate pain, function and other health indicators, and 119 participants responded.

Nearly all respondents were female and age 65 or older. In the survey, many participants reported that their pain intensity dropped and interfered less with their quality of life. The following statistically significant results are noteworthy:

• 48% fewer participants had pain on a daily basis after completing the program
• 69% more participants could climb several flights of stairs after the program
• 83% more participants could bend, kneel, or stoop
• 50% more participants could lift/carry groceries
• 39% of participants felt the program reduced their fatigue
• 30% participants felt that the program reduced their stiffness

“The study results indicate that the hospital’s Bone Health Initiative has a positive impact on the musculoskeletal health of the Asian senior population,” said Huijuan Huang, MPA, program coordinator. “While further research is needed, HSS will continue to offer culturally-sensitive programs to this community to help seniors stay active, decrease pain and improve their overall health.”

About Hospital for Special Surgery
Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 4 in rheumatology, and No. 5 in geriatrics by U.S.News & World Report (2013-14), and is the first hospital in New York State to receive Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center three consecutive times. HSS has one of the lowest infection rates in the country. From 2007 to 2012, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. HSS is a member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College and as such all Hospital for Special Surgery medical staff are faculty of Weill Cornell. The hospital’s research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at




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James Bond Murder Mystery – Late Bookings Do it Now…this Friday

You are invited to our fun dinner party with the option to dress as a Bond Girl, or a Bond Baddie and even Bond himself.  THIS FRIDAY November 22nd at the Chichester Park Hotel, Book your ticket today. Email  all in aid of fibromyalgia research. There will be a prize for the most original costume.

There will be the good food, great company and the Castawaydrama will present their version of 007 at his best.  You will be presented with a delicious three course dinner and coffee, mixed in with murder most foul. You will be encouraged to relax and enjoy a few drinks with friends and linger overnight for a modest difference in the cost of a great evening. There is a prize for the most original costume.

The Chichester Park Hotel staff are unusually  helpful, the Manager is a star and very supportive of fibromyalgia research, and we are really looking forward to a memorable evening and meeting folks like you. The hotel provides all ’mod cons’ with en suite bath and shower, tea making facilities. TV, telephone all in a spacious room with a double or twin beds if you book the optional overnight stay.

 This will be a good opportunity to get away and enjoy some good company and relaxation. On Friday afternoon and Saturday morning you can take advantage of a warm indoor pool, Jacuzzi, spa, steam room, exercise equipment and a beauty salon as an overnight visitor.

Those with a fibromyalgia interest will be pleased to hear every booking contributes towards research for our CAUSE FOR A CURE sponsored by Folly Pogs FM Research projects.

A booking form is available for you and your friends for our fun dinner party from We hope to have a raffle and would welcome any unwanted gifts to help the research project. We look forward to meeting you THIS FRIDAY  and your friends. PLEASE let us know if you are coming. Tele. 08433 828 829. Thanks.


Friday November 22nd – Evening only for dinner and drama  tickets are £40.50 each.

Overnight 2 sharing £49.50 each – 3 course dinner, drama and overnight stay with use of all of the hotel facilities – pool, jacuzzi, steam room, spa, exercise equipment  -  and the murder mystery (just £9 extra for the overnight stay) with a comfy bed, breakfast, with facilities Friday afternoon and Saturday morning before you leave.

We look forward to meeting you. Email for booking booking form and payment details to before Friday,November 22nd 2013. 

Chichester Park Hotel for FOLLY POGS FM RESEARCH   Telephone 08433 828 829

Madgwick Ln, Westhampnett Road, Chichester, West Sussex PO19 7QL
01243 817400

Booking only through Murder Mystery



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By Jeanne Hambleton -fibromite – freelance journalist

While in this column we stray into all things wellbeing and health in general, this is allegedly the home of fibromyagia news (and poor spelling – blame FM and CB).

With this in mind for those who are suffering with fibromyalgia – pain 24/7, chronic fatigue, sleep disorder, depression, cognitive behaviour, IBS, dizziness – shall I go on – there are said to be 100 symptoms – and a compromised immune system, it is time to stand up and be counted.

Well if like me you are fed up with the cold and wet weather making your pains worse, and are very aware there is no cure or Government funding for research into FM, you will feel a bit peeved. There is not a lot going on to find a cure.

So I decided to think about a different type of project which I hope will achieve results.

With the support of Folly Pogs Fibromyalgia Research (the driving force by the national annual Fibromyalgia Conferences – next one March 27/31 2014) we are looking for fibromites who will make a pledge to raise a sum of money for a new research project. The pledge should be an amount you can manage, from a fund raising event, to support this research project.

We could call this THE LOOSE CHANGE FM RESEARCH PROJECT. Yes we want your loose change and research funds from fund raising please – from you, your friends, FM groups and anyone you speak to please who are sympathetic. We will also accept blue and brown notes and cheques.

This project will belong to you – a patient owned FM research project – - if you raise funds you can support this project. This could bring us a step closer solving to the mysteries surrounding fibromyalgia. There will be an award for the most money raised by a group and an award for the individual.

So my letter to Father Christmas this year will be asking for folk to remember charity begins at home and to hear lots of people will be fund raising for our LOOSE CHANGE project. If you are able to support us please email me at

1,000,000 FIBROMYALGIA LIKES Wanted Please

Folly Pogs are so fed up with the lack of progress that they are looking for your support for the 1,000,000 LIKES page on FACEBOOK. Please find time to support this on FACEBOOK.

It was in sheer desperation that Folly Pogs FM Research pushed for a LIKE page on FACEBOOK. We had reasoned if we have the backing of 1,000,000 LIKEs in the social media we just might stand a chance of reinstating the APPG on FM.This is the All Party Parliamentary Group on Fibromyalgia. We have been without an APPG on FM voice in Parliament for three whole years.

At the last election in 2010 most of the former members decided they were too busy with their ministerial duties and opted out. This include two Ministers. As a result the former chair of the APPG on FM, Rob Wilson MP (Reading) and Rosie Cooper MP (West Lancashire) prospective chair of a new APPG on FM, were unable to recruit new members. I had a nice letter from Rosie Cooper MP and if approached by your MPs (when you have badgered him or her) I am sure Rosie Cooper would be willing to start the APPG on FM again.

We are now appealing to ALL fibromites everywhere and especially those who use FACEBOOK, to please write to their MP and ask them to represent you on a new APPG on Fibromyalgia. Log on to‎ to find out who is your MP. If he/she says no – ask why not. Your MP should represent you as a constituent.

With the backing of ONE MILLION FIBROMYALGIA LIKES – voices – we will have a stronger case to get a voice in Parliament reinstated. Personally I do not worry what colour his tie is if he is working for FM funding by the Govt. to find a cure, and the re-instatement of the APPG on FM and maybe even a national Fibromyalgia Flag Day.

Tell everyone you know please. Thank you for your support and the Trustees from both FMS SAS now FMS SES and Folly Pogs FM Research in anticipation of your support. Two clicks and another vote towards our ONE MILLION FIBROMYAGLIA LIKES. THANKS.

Please log on to and just click LIKE in the little box and watch the numbers increase.
Tell your friends and family please. Thank you for your support in anticipation of your help. A very BIG THANKS. Jeanne

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Study Links Intestinal Bacteria to Rheumatoid Arthritis

Findings suggest bacterial disturbances in the gut may play a role in autoimmune attacks on the joints, point the way to novel treatments and diagnostics


Released: 11/5/2013 12:00 PM EST
Source Newsroom: NYU Langone Medical Center

Newswise — Researchers have linked a species of intestinal bacteria known as Prevotella copri to the onset of rheumatoid arthritis, the first demonstration in humans that the chronic inflammatory joint disease may be mediated in part by specific intestinal bacteria. The new findings by laboratory scientists and clinical researchers in rheumatology at NYU School of Medicine add to the growing evidence that the trillions of microbes in our body play an important role in regulating our health.

Using sophisticated DNA analysis to compare gut bacteria from fecal samples of patients with rheumatoid arthritis and healthy individuals, the researchers found that P. copri was more abundant in patients newly diagnosed with rheumatoid arthritis than in healthy individuals or patients with chronic, treated rheumatoid arthritis. Moreover, the overgrowth of P. copri was associated with fewer beneficial gut bacteria belonging to the genera Bacteroides.

“Studies in rodent models have clearly shown that the intestinal microbiota contribute significantly to the causation of systemic autoimmune diseases,” says Dan R. Littman, MD, PhD, the Helen L. and Martin S. Kimmel Professor of Pathology and Microbiology and a Howard Hughes Medical Institute investigator.

“Our own results in mouse studies encouraged us to take a closer look at patients with rheumatoid arthritis, and we found this remarkable and surprising association,” says Dr. Littman, whose basic science laboratory at NYU School of Medicine’s Skirball Institute of Biomolecular Medicine collaborated with clinical investigators led by Steven Abramson, MD, senior vice president and vice dean for education, faculty, and academic affairs; the Frederick H. King Professor of Internal Medicine; chair of the Department of Medicine; and professor of medicine and pathology at NYU School of Medicine.

“At this stage, however, we cannot conclude that there is a causal link between the abundance of P. copri and the onset of rheumatoid arthritis,” Dr. Littman says. “We are developing new tools that will hopefully allow us to ask if this is indeed the case.”

The new findings, reported today in the open-access journal eLife, were inspired by previous research in Dr. Littman’s laboratory, collaborating with Harvard Medical School investigators, using mice genetically predisposed to rheumatoid arthritis, which resist the disease if kept in sterile environments, but show signs of joint inflammation when exposed to otherwise benign gut bacteria known as segmented filamentous bacteria.

Rheumatoid arthritis, an autoimmune disease that attacks joint tissue and causes painful, often debilitating stiffness and swelling, affects 1.3 million Americans. It strikes twice as many women as men and its cause remains unknown although genetic and environmental factors are thought to play a role.

The human gut is home to hundreds of species of beneficial bacteria, including P. copri, which ferment undigested carbohydrates to fuel the body and keep harmful bacteria in check. The immune system, primed to attack foreign microbes, possesses the extraordinary ability to distinguish benign or beneficial bacteria from pathogenic bacteria. This ability may be compromised, however, when the gut’s microbial ecosystem is thrown off balance.

“Expansion of P. copri in the intestinal microbiota exacerbates colonic inflammation in mouse models and may offer insight into the systemic autoimmune response seen in rheumatoid arthritis,” says Randy S. Longman, MD, PhD, a post-doctoral fellow in Dr. Littman’s laboratory and a gastroenterologist at Weill-Cornell, and an author on the new study. Exactly how this expansion relates to disease remains unclear even in animal models, he says.

Why P. copri growth seems to take off in newly diagnosed patients with rheumatoid arthritis is also unclear, the researchers say. Both environmental influences, such as diet and genetic factors can shift bacterial populations within the gut, which may set off a systemic autoimmune attack. Adding to the mystery, P. copri extracted from stool samples of newly diagnosed patients appears genetically distinct from P. copri found in healthy individuals, the researchers found.

To determine if particular bacterial species correlate with rheumatoid arthritis, the researchers sequenced the so-called 16S gene on 44 fecal DNA samples from newly diagnosed patients with rheumatoid arthritis prior to immune-suppressive treatment; 26 samples from patients with chronic, treated rheumatoid arthritis; 16 samples from patients with psoriatic arthritis (characterized by red, flaky skin in conjunction with joint inflammation); and 28 samples from healthy individuals.

Seventy-five percent of stool samples from patients newly diagnosed with rheumatoid arthritis carried P. copri compared to 21.4% of samples from healthy individuals; 11.5% from chronic, treated patients; and 37.5% from patients with psoriatic arthritis.

Rheumatoid arthritis is treated with an assortment of medications, including antibiotics, anti-inflammatory drugs like steroids, and immunosuppressive therapies that tame immune reactions. Little is understood about how these medications affect gut bacteria. This latest research offers an important clue, showing that treated patients with chronic rheumatoid arthritis carry smaller populations of P. copri. “It could be that certain treatments help stabilize the balance of bacteria in the gut,” says Jose U. Scher, MD, director of the Microbiome Center for Rheumatology and Autoimmunity at NYU Langone Medical Center’s Hospital for Joint Diseases, and an author on the new study. “Or it could be that certain gut bacteria favor inflammation.”

The researchers plan to validate their results in regions beyond New York, since gut flora can vary across geographical regions, and investigate whether the gut flora can be used as a biological marker to guide treatment. “We want to know if people with certain populations of gut bacteria respond better to certain treatment than others,” says Dr. Scher. Finally, they hope to study people before they develop rheumatoid arthritis to see whether overgrowth of P. copri is a cause or result of autoimmune attacks.

In addition to researchers from the NYU School of Medicine, investigators from Memorial Sloan Kettering Cancer Center and from the Harvard School of Public Health contributed to the study. Funding for this research comes from the National Institutes of Health, the Howard Hughes Medical Institute, and the American Gastroenterological Association.

About NYU Langone Medical Center
NYU Langone Medical Center, a world-class, patient-centered, integrated academic medical center, is one of the nation’s premier centers for excellence in clinical care, biomedical research, and medical education. Located in the heart of Manhattan, NYU Langone is composed of four hospitals—Tisch Hospital, its flagship acute care facility; Rusk Rehabilitation; the Hospital for Joint Diseases, the Medical Center’s dedicated inpatient orthopaedic hospital; and Hassenfeld Pediatric Center, a comprehensive pediatric hospital supporting a full array of children’s health services across the Medical Center—plus the NYU School of Medicine, which since 1841 has trained thousands of physicians and scientists who have helped to shape the course of medical history. The Medical Center’s tri-fold mission to serve, teach, and discover is achieved 365 days a year through the seamless integration of a culture devoted to excellence in patient care, education, and research

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