Tag Archives: fibromyalgia

 

MORE GOOD NEWS FOR FIBROMYALGIA CONFERENCE

If you have not made your mind up  to come to conference this year we have  new editions to the programme.

An expert  on the mysteries of  our Mitochrondia  and the links with fibromyalgia, Dr. Sarah Myhill, a very busy lady, is making a one day flying visit to conference. She has agreed to take several sessions, including questions, while sharing her extensive   knowledge on this illusive topic.

If you want to know what your Mitochrondia  really looks like just add the word into the  Internet Google search  and it should appear in glorious technicolour. Where it lives  in the body  I have no  idea but I am sure we will learn that at conference. Always a bit of a mystery this…..

On a more informal basis Maxine, a group leader and one of our  regular delegates,  who has struggled to work full time, while living with fibromyalgia, has agreed to host an informal  chat to  share her experiences with folks  in a similar situation or those considering going back to work.

We have already mentioned the Benefits & Debt Clinic from 3pm on our first day only.

Moe help is at hand. We now have a HealthWatch visitor  who will  also be available on Friday afternoon 24th. In the past year we have heard several stories relating to the help HealthWatch has given to local FM groups.  With HealthWatch behind you, it does add quite a  bit of “clout” to your story. This is a great opportunity to talk and find out how the local HealthWatch can help you or  your group and where to find them.  We are also hoping to have a person from the Citizens Advice Bureau to answer some of  those awkward questions  on the Friday afternoon.

If you want more information about the Fibromyalgia Conference, read the earlier article with all the details of the speakers. Log on to jeannehambleton77.wordpress.com.

See you at conference. The weeks are flying by and Simon  <fibcon2015bookings@gmail.com> is very busy with the late  bookings.  You can ring the HOTLINE  to reserve a double room and get a booking form. Tel 0844 887 2512.  Remember April 24/27 2015 Chichester Park Hotel.  See you at conference.  Jeanne

 

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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

A TRUE STORY – IT IS A DOG’S LIFE….

A TRUE STORY – IT IS A DOG’S LIFE….

As a dog lover I found this  story very touching and really think  empty nesters and all fibromites should have a dog including me.  It really is a lovely story and I  do believe it is true.   I have read chapters and verse about the potential wellbeing a dog can bring to those who  are terminally unwell. Sudi sent this to me a while ago and I shared it with Carole – my THUNDER AND LIGHTING reader.  She felt it was beautiful. Maybe I will get the tissues out.

A Father, a Daughter and a Dog

A true story by Catherine Moore

“Watch out! You nearly broad sided that car!”

My father yelled at me. “Can’t you do anything right?”

Those words hurt worse than blows. I turned my head toward the elderly man in the seat beside me, daring me to challenge him. A lump rose in my throat as I averted my eyes. I was not prepared for another battle.

“I saw the car, Dad . Please do not yell at me when I am driving.”

My voice was measured and steady, sounding far calmer than I really felt.

Dad glared at me, then turned away and settled back. At home I left Dad in front of the television and went outside to collect my thoughts….. dark, heavy clouds hung in the air with a promise of rain. The rumble of distant thunder seemed to echo my inner turmoil. What could I do about him?

Dad had been a lumberjack in Washington and Oregon . He had enjoyed being outdoors and had reveled in pitting his strength against the forces of nature. He had entered grueling lumberjack competitions, and had placed often. The shelves in his house were filled with trophies that attested to his prowess.

The years marched on relentlessly. The first time he couldn not lift a heavy log, he joked about it; but later that same day I saw him outside alone, straining to lift it. He became irritable whenever anyone teased him about his advancing age, or when he could not do something he had done as a younger man.

Four days after his sixty-seventh birthday, he had a heart attack. An ambulance sped him to the hospital while a paramedic administered CPR to keep blood and oxygen flowing.

At the hospital, Dad was rushed into an operating room. He was lucky; he survived. But something inside Dad died. His zest for life was gone. He obstinately refused to follow doctor’s orders. Suggestions and offers of help were turned aside with sarcasm and insults. The number of visitors thinned, then finally stopped altogether. Dad was left alone.

My husband, Dick, and I asked Dad to come live with us on our small farm. We hoped the fresh air and rustic atmosphere would help him adjust.

Within a week after he moved in, I regretted the invitation. It seemed nothing was satisfactory. He criticized everything I did. I became frustrated and moody. Soon I was taking my pent-up anger out on Dick. We began to bicker and argue.

Alarmed, Dick sought out our pastor and explained the situation. The clergyman set up weekly counselling appointments for us. At the close of each session he prayed, asking God to soothe Dad’s troubled mind.

But the months wore on and God was silent. Something had to be done and it was up to me to do it.

The next day I sat down with the phone book and methodically called each of the mental health clinics listed in the Yellow Pages. I explained my problem to each of the sympathetic voices that answered in vain.

Just when I was giving up hope, one of the voices suddenly exclaimed, “I just read something that might help you! Let me go get the article..”

I listened as she read. The article described a remarkable study done at a nursing home. All of the patients were under treatment for chronic depression. Yet their attitudes had proved dramatically when they were given responsibility for a dog..

I drove to the animal shelter that afternoon.. After I filled out a questionnaire, a uniformed officer led me to the kennels. The odor of disinfectant stung my nostrils as I moved down the row of pens.  Each contained five to seven dogs. Long-haired dogs, curly-haired dogs, black dogs, spotted dogs all jumped up, trying to reach me. I studied each one but rejected one after the other for various reasons too big, too small, too much hair. As I neared the last pen in the shadows of the far corner, a dog struggled to his feet, walked to the front of the run and sat down. It was a pointer, one of the dog world’s aristocrats. But this was a caricature of the breed.

Years had etched his face and muzzle with shades of gray. His hip bones jutted out in lopsided triangles. But it was his eyes that caught and held my attention. Calm and clear, they beheld me unwaveringly.

I pointed to the dog. “Can you tell me about him?”

The officer looked, then shook his head in puzzlement.

“He’s a funny one. Appeared out of nowhere and sat in front of the gate. We brought him in, figuring someone would be right down to claim him. That was two weeks ago and we have heard nothing. His time is up tomorrow.”

He gestured helplessly.  As the words sank in I turned to the man in horror. “You mean you are going to kill him?”

“Ma’am,” he said gently, “that is our policy. We do not have room for every unclaimed dog.”

I looked at the pointer again. The calm brown eyes awaited my decision.

“I’ll take him,” I said.

I drove home with the dog on the front seat beside me. When I reached the house I honked the horn twice. I was helping my ‘prize’ out of the car when Dad shuffled onto the front porch.

“Ta-da! Look what I got for you, Dad !” I said excitedly.

Dad looked, then wrinkled his face in disgust.

“If I had wanted a dog I would have gotten one. And I would have picked out a better specimen than that bag of bones. Keep it! I do not want it.”

Dad waved his arm scornfully and turned back toward the house.

Anger rose inside me. It squeezed together my throat muscles and pounded into my temples.

“You’d better get used to him, Dad. He’s staying!” I said,

Dad ignored me.

“Did you hear me, Dad ?” I screamed.

At those words Dad whirled angrily, his hands clenched at his sides, his eyes narrowed and blazing with hate. We stood glaring at each other like duelists, when suddenly the pointer pulled free from my grasp. He wobbled toward my dad and sat down in front of him. Then slowly, carefully, he raised his paw..

Dad’s lower jaw trembled as he stared at the uplifted paw confusion replaced the anger in his eyes. The pointer waited patiently. Then Dad was on his knees hugging the animal.

It was the beginning of a warm and intimate friendship. Dad named the pointer Cheyenne . Together he and Cheyenne explored the community. They spent long hours walking down dusty lanes. They spent reflective moments on the banks of streams, angling for tasty trout. They even started to attend Sunday services together, Dad sitting in a pew and Cheyenne lying quietly at his feet.

Dad and Cheyenne were inseparable throughout the next three years. Dad’s bitterness faded, and he and Cheyenne made many friends. Then late one night I was startled to feel Cheyenne ‘s cold nose burrowing through our bed covers. He had never before come into our bedroom at night.. I woke Dick, put on my robe and ran into my father’s room. Dad lay in his bed, his face serene. But his spirit had left quietly sometime during the night.

Two days later my shock and grief deepened when I discovered Cheyenne lying dead beside Dad’s bed. I wrapped his still form in the rag rug he had slept on. As Dick and I buried him near a favourite fishing hole, I silently thanked the dog for the help he had given me in restoring Dad’s peace of mind.

The morning of Dad’s funeral dawned overcast and dreary. This day looks like the way I feel, I thought, as I walked down the aisle to the pews reserved for family. I was surprised to see the many friends Dad and Cheyenne had made filling the church.. The pastor began his eulogy. It was a tribute to both Dad and the dog who had changed his life.

And then the pastor turned to Hebrews 13:2. “Do not neglect to show hospitality to strangers, for by this some have entertained angels without knowing it.”

“I have often thanked God for sending that angel,” he said.

For me, the past dropped into place, completing a puzzle that I had not seen before: the sympathetic voice that had just read the right article… Cheyenne’s unexpected appearance at the animal shelter ….his calm acceptance and complete devotion to my father. . and the proximity of their deaths. And suddenly I understood. I knew that God had answered my prayers after all.

Life is too short for drama or petty things, so laugh hard, love truly and forgive quickly. Live While You Are Alive. Forgive now those who made you cry. You might not get a second time.

But do share this with someone who maybe needs a dog’s devotion. Lost time can never be found. God answers our prayers in His time……..not ours.

Dogs can also be good companions for those who  are disabled, unable to see or suffer as a fibromite . For some folk dogs act as service dogs, fetching, carrying and sharing great  affection. They go to war, help solve crimes and really are man’s and woman’s best friend.

MY COMMENTS

I had a Great Dane just like Cheyenne. My dog was destined to spend her life in kennels because she was not perfect enough for Crufts Dog Show. But I took her and loved her until she died in 2002. It was just months later I was diagnosed with fibromyalgia. The experts suggested losing my Great Dane could have contributed to the stress that triggered my health problem. I would do it all again given the chance with better health.

COMPANION DOGS

Every breed was created for a reason, and the companion dogs are no exception. Their job is to keep people company, perhaps the most important work a dog can do, claims http://www.dogtimecom With pictures an details about breeds this site is all you need right now to help you decide what sort of dog might suit you.

The sites tell us some potential pets are miniaturized versions of working dogs. Some were created solely as beautiful lap dogs–but without exception, they are all dog.

Often lady owners pamper small dogs with ribbons and these are carried about in their own handbag. The tiniest of them have no idea that they are not as big or strong as other dogs, and they have the heart and courage of a Mastiff concealed in their small bodies.

That is an endearing quality, but it also means they need to be protected from themselves. Often little dogs will take on bigger dogs or even human intruders and can easily be injured or killed for their trouble.

In size they range from tiny four-pounders to sturdier 20- to 40-pounders. As a group, they are housedogs, unsuited to living outdoors. Their main goal in life is to be with their people and they will wilt if left to themselves for long hours day after day.

Some small dogs need grooming by an expert – wash and shampoo and maybe a trim.  Big dogs you turn the hose on, lather them and hose it off on a warm sunshine day.

Give some serious thought to the size of the dog you like. Will a dog big and strong to protect you, pull you over.  Are you up to regular walking to exercise him or would you prefer a handbag pet that usually gets enough exercise around the house.  Will you have a pedigree pet or save some poor dog from possible death in a dog’s home.  If you adopt a dog you do need to know his history and ask if he barks a lot – worried about the neighbours.

We moved house, as we loved our dog, an English setter, more than we did our neighbours. Trouble was the dog’s breed led them to “sing” if you can call it that.  As soon as we left the house to go to work, she would start singing and stop immediately we drove up the drive.  She must have had a built in time clock.

Our neighbours were not fond of her singing voice.  If you are working, leaving a dog all morning is asking for trouble. Another English Setter bit through the cold water feed to my washing machine about 9.30am. How she got around the back is still a wonder. At lunch time the whole ground floor was flooded and we were under insured.

We reached a climax sort of. Him indoors said heatedly, “Either the dog goes or I go”.

The dog did not pay the bills sadly so she went to farm to work where she was much happier and able to sing in the farmyard without offended anyone. She was a gun dog and needed o work.

If you take in a female dog do remember you should not take her out when she is on heat or you may end up in the middle of a dog fight.

There is a lot to thing about. Without a doubt the dog’s companionship is really worthwhile but looking after and being responsible for a dog needs some thought.

If you have family willing to take your dog for walks when you are under par or exhausted, this would certainly be a plus. Maybe the husband of your neighbour who has always wanted a dog but the wife said ‘no might volunteer.  He might be your knight in shining armour.  Might be wise to mention the dog to your neighbours.

OTHER THINGS TO BUY

You will need a good collar and lead, feeding bowl, drinking bowl, brush to keep the dog’s body coat clean, dog’s bed – bad practice to let them sleep with you if the dog is big. My Boxer slept against the wall in my single bed and I often finished up on the floor as she stretched and stretched even more. It was that or she did more damage in the kitchen overnight. Puppies like babies do have teething troubles and they teeth on things that belong to you.

Your dog must learn to obey you and a little biscuit will always serve as a reward for getting it right. You will need to locate your nearest vet should you need one.

Some folks have a small identity chip inserted under the skin of the dog.  It is relatively painless I am told but helpful if your dog gets lost.  A scanner will soon know who your dog belongs to.

Yes they bring a lot of love and a lot of work – dog’s hairs on the chairs, in the car, in the butter, on the bed covers – everywhere. If you wash them in the bath, you will have a dirty tub.

You should also think about pet insurance in case of theft or accidents.   If you travel abroad for holidays and plan to take your dog I guess the dog will need a “passport” or the necessary papers.  Plan ahead if that is what you hope to do. A vet will put you right on the required injections for the dog’s injections depending where you are going on holiday. .

If you are leaving your dog behind you may need a sitter. I am telling you all these things as a non dog owner.

BED AND BREAKFAST FOR DOGS

I now think I should have asked my good friend Teresa to write this as she is really up to speed. Teresa Jane White has 5 dogs and is amazing with pets of all shapes and sizes.  She knows everything there is to know about dogs and is always looking for a docile Great Dane for me to love.

If you are off for a long romantic weekend and do not want your other ‘sleeping partner’ to know – the dog – Teresa will look after your pet with tender love and care. Her dogs have an enormous green grass play ground -no long rows of kennels. All her dogs are family whether they are with her for one day or a month.  A stay with Teresa’s  ‘family’ is really a dog’s holiday. They make new friends, have meals together, chat a lot and let of a bit of steam with wagging tails, and it is a real holiday.  If you are enjoying yourself, you would hope your dog is having a good time too I am sure.

This is the bit from the website that I like: What your dogs have at home they can have here as well, so if you have a pooch that sleeps on the bed, then they can share our bed here as well; or if they prefer a quiet kitchen / living-room for their nights, then that is available too!!

To contact Teresa’s telephone is 01243 670783, her mobile 07530709061, or a text if that is easier and email tjswhite1954@live.co.uk, website http://teresasdogs.weebly.com/contact-page.html

She also does B&B – bed and breakfast for dogs only. Teresa does insist no uncastrated male dogs, after the age of 9 months, especial not even for B&B.  Talk soon. Jeanne

 

May 12 International Fibromyalgia Awareness Day

Hi –

What are you doing on  Saturday May 12th  2013 – our special FM day? Tell me if you are doing anything spectacular -would love to add it to my news.

Did you know this is Florence Nightingale’s birthday.

It is said  after she returned from her nursing work (the Lady of the Lamp) during the Crimean War she took to her bed with a condition  like fibrositis  renamed in 1990 as fibromyalgia.

We commemorate her birthday and International Fibromyalgia Awareness Day on May 12th together with those who suffer  with ME/CFS.

If you are doing some fund-raising please don’t forget the Folly Pogs FM Research fund – we all need a cure.

Donations gratefully received – email me please – at jeanne@follypogsfibro.org. and see http://www.follypogsfibro.org 

Take care FH Jeanne

FOLLY POGS IS ALIVE AND WELL

Hi Folks
Apologies for my absence – life is so hectic hardly time to even contemplate. Contemplate what I have not thought about.

But The Folly Pogs Fibromyalgia Research UK is on the verge of getting that illusive registered number – you know what I am talking about – the Charity Commission number (if they will have us with this silly but memorable name).

A Canadian website even called us “The Folly Pogs of England”….food for thought.

We are at last within reach of the ultimate bank balance to satisfy the “CC” with thanks to those who have made donations ‘quietly’ but in the hope we will achieve great things. We are trying to move mountains slowly but walking on water needs skill.

Our latest donor is a man called Rick Prior whose wife Karen is a fibromite. This lovely lady and her very supportive family have organised raffles and Rick and his son Mark ran in the Great South Run in Portsmouth in October. His sponsors with Karen and Maisie, her daughter, shook their collecting bucket on the day. Their efforts look like raising £500 – the sum we needed to for us to legitimately apply for registration. They had great fun and I am waiting for photographs of the runners with orange and blue hair. I will then have to learn how to upload. Watch this space

A big big thanks to the Prior family and others who have made all important donations in the past. Thanks for believing in us.

My friends will know I am passionate about raising funds for research to find a cure. There is no Government funding and unlikely there will be any in the foreseeable future. I believe we all really want a cure if only for the next generation –our children and grandchildren.

Our next big fund raiser is the 3rd annual Fibromyalgia Conference during Easter weekend in Chichester. If you want more details –email fibrowhat@me.com

These are memorable weekends, great for networking and making new fibro friends and talking to the experts. This one will be different with Olympic ‘style’ challenges including one for ‘knitting’ – yes knitting – that knit one, purl one, pastime you do with two knitting needles and wool – and another for that VIP Fibro Duck.

If you want to come and listen to 12 keynote speakers, we enjoy the unusual workshops, fun and laughter in the evening, better book soon – not many beds left.

Talk again soon – I promise -honest engine
Jeanne – Folly Pogs

May 12 International Fibromyalgia Awareness Day

Hi – What are you doing on Thursday – our special FM day? Tell me if you are doing anything spectacular -would love to add it to my news.
If you are doing some fund raising please don’t forget the Folly Pogs FM Research fund – we all need a cure. Donations gratefully received – email me please – jeannehambleton@me.com. Take care FH Jeanne

Heard Through the Grapevine: Test kit for XMRV to be available from Reno-based VIP Dx

From the  FMS Global News Desk of Jeanne Hambleton

Courtesy of ProHealth

Copyright © 2009 ProHealth, Inc.

 

 

Rumor on the ProHealth Message Boards has it that Viral Immune Pathology Diagnostics (VIP Dx) in Reno, Nevada (www.redlabsusa.com), will soon make available a test kit for the XMRV virus – the retrovirus which most of the world knows by now is thought to be a biomarker for a large proportion of chronic fatigue syndrome (ME/CFS) patients.

 

According to the buzz, ME/CFS patients and their physicians will be able to order VIP Dx kits as soon as pricing is established – and that was due to be Friday, Oct 16, according to a ProHealth ME/CFS Message Board user who has already arranged to receive a kit when they become available for shipment. According to her, “They send it to you by FedEx and you have to have a Dr. sign off and take it to a lab. [VIP Dx] pays for it to be sent back.”

 

This cannot  be offered in Europe. As of Oct 14, a Co-Cure listserv poster reported that Marguerite Ross, Director of Marketing & Client Relations at VIP Dx, indicated to him “we cannot offer the test in Europe because of the time difference and temperature changes the sample would experience,[which would render it]unsuitable for analysis.” In the same communication, she stated “the test will be available in the USA in about 3-4 weeks as it is undergoing final validation and licensing.”

 

According to the initial news on the VIP Dx test – posted Oct 9 on the CFS Warrior blog (http://cfswarrior.blogspot.com), there is “a PCR test for the XMRV virus itself. Another test kit recommended by Dr. Paul Cheney is the NKCP & LYEA test… If you want to be tested call the lab at 775-351-1890 and they will ship out a kit to you. Your doctor has to sign off, then take it to a local lab to get the test done and then it gets shipped overnight back to VIP Labs. It takes about two weeks to get the results. The woman I spoke to was very nice. They are swamped with calls but expected it.”

 

VIP Dx is the new name of the former REDLABS USA, launched years ago with the assistance of Belgium-based ME/CFS researcher Dr. Kenny De Meirleir, who has no financial interest in the venture. It was named after De Meirleir’s own R.E.D. Laboratories, a biotechnology company in Belgium focused on “developing clinical diagnostic tests and therapies for chronic immune diseases.” VIP Dx is located geographically near the Whittemore-Peterson Institute, which is part of the University of Nevada, Reno. VIP’s medical director – Dr. Vincent Lombardi, PhD – was recently hired from the UN-Reno School of Medicine, and reportedly played a role in the WPI testing.

 

Test Availability from Whittemore-Peterson?

 

Meanwhile, according to the XMRV FAQ at the WPI website, “The WPI has developed a blood test for the detection of XMRV. The test is currently undergoing clinical evaluation and validation. We hope to have a clinical test available to the public within the year.”

 

 

NEWS FROM  http://www.redlabsusa.com/  states:

 

VIP Dx - Viral Immune Pathology

News Icon LATEST NEWS: XMRV TESTING


Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome“, please go to (www.sciencemag.org). We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).

VIP Dx 5625 Fox Avenue, Suite 369  Reno, NV 89506  Phone: (775) 351-1890  Fax: (775) 682-851 E-mail: info@vipdx.com 9:00 a.m. – 5:00 p.m. (PST)

Press Releases

October 23, 2009, Reno, Nevada

It is with great pleasure that Viral Immune Pathology Diagnostics (VIP Dx) announces the introduction of its family of diagnostic tests for the Xenotropic Murine Leukemia Virus-like Virus for XMRV associated neurological disease (XAND).

XMRV is a gamma retrovirus and replicates in dividing cells. Low-level latent infections are best detected in activated, dividing cells; to activate a latent virus takes additional cell culture. Productive infections are more easily detected without special treatment of the specimen.

Each XAND specimen must have an XAND acceptance code on the test requisition. The XAND acceptance code is assigned by our staff and will arrive on the test requisition in your specimen kit. Specimens sent without the appropriate acceptance code may result in the delay or inability to perform the diagnostic test. The diagnostic tests available for XAND* are as follows:

XAND by PCR for XMRV active infection: Test Code XAND ($400)

XAND1 by virus culture for XMRV latent infection: Test Code XND1 ($500)

XAND2 by PCR for XMRV active infection and virus culture for latent infection: Test Code XND2 ($650)

We are accepting XAND tests on Tuesdays and Fridays only due to the incubation period required for proper analysis. Therefore, you must have your blood drawn on Monday or Thursday and ship immediately back to us by priority overnight FedEx for receipt by us on Tuesday or Friday.

For XAND testing you must use the coded test requisition provided with your kit. Refer to the updated specimen guidelines in the right column of the test requisition for proper blood draw.

No special preparation is required for specimens; ship specimens at ambient (room) temperature. Specimens must be received within 24 hours for proper analysis. Collection and shipping instructions are included in each kit along with all required specimen tubes. The return clinical envelope and overnight airbill are also included.

To order you test kit, please e-mail your full name, address and telephone number toinfo@vipdx.com. There is a 4-6 week back order. VIP Dx is committed to having everyone tested who wants to be tested. Please accept our sincere apology for any delays. We thank you for your support and patience.

Please visit our website at www.vipdx.com for more information on VIP Dx and our tests.

Please visit Whittemore Peterson Institute for FAQ on the XMRV virus at www.wpinstitute.org.  On behalf of the VIP Dx team, we thank you for your continued support.

* The XAND tests were developed and their performance characteristics were determined and validated by VIP Dx. These tests have not been approved by the U.S. Food and Drug Administration (FDA) for diagnostic purposes. Medical expertise is required for XAND test interpretation.

 

….ends…..