....Diagnose Support

Here's a sample "fwd" email about Myalgic Encephalopathy / Chronic Fatigue Syndrome to send to everyone in your address book. If you edit it to make it more personalised to your symptoms, you may receive more response

Here's a sample "fwd" email about fibromyalgia to send to everyone in your address book. If you edit it to make it more personalised to your symptoms, you may receive more response

In February a local online newspaper in Ohio dared to publish an outrageous editorial suggesting that the CDC campaign to increase awareness for C.F.S./M.E. was a waste of taxpayers' money....  

It just so happened that Kathleen Kraft, one of our online friends, caught this article. Kathleen, her husband Chris and over 90 other people responded on-line to the editorial website. Kathy also decided to submit a letter of protest to the executive editor at the newspaper who rectified the situation by promptly assigning a reporter to the case to interview Kathy about her C.F.S./M.E. story.    

If you have not viewed the long version of Holly's fibromyalgia documentary yet, please click on the image to open the full version of the video... 

If you experience any technical difficulties, please click HERE

Pandora stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy. Marly C. Silverman (aka Marla McKibben) founded this organization to help raise awareness for CFS / ME, FMS and related illnesses.

From there a great international advocacy network arose. A quote from the official website:  "One Strong Voice for Many© in our neuroendocrineimmune community. We are lending our voice to create awareness of the plight of individuals suffering with neuroendocrineimmune disorders. Our mission is to address and alleviate many of the issues that affect the quality of life of persons who are diagnosed with Chronic Fatigue Syndrome (CFS, also known as Chronic Fatigue Immune Deficiency Syndrome - CFIDS - or Myalgic Encephalomyelitis - ME) and Fibromyalgia Syndrome (FMS). As part of our outreach program in the community we also embrace persons who have been diagnosed with Gulf War Syndrome, Multiple Chemical Sensitivity (MCS), Multiple Sclerosis (MS) and other related illnesses."

Pandora is globally active in the CFS/ME community and hosted this year's Global IACFS/ME conference in Fort Lauderdale, Florida. Pandora is also organizing an international contest that involves submission of videos that create and raise awareness of the plight of individuals with neuroendocrineimmune disorders such as CFS, fibromyalgia, Gulf War syndrome and multiple chemical sensitivities.

Please visit the website of P.A.N.D.O.R.A for more information. The link is also submitted in the "Advocacy Weblist".

What we have never told you..... Prickles and Carla were awarded a scholarship by Pandora, to attend the conference. Unfortunately, exam schedules, tax deadlines and financial struggles prevented us from scheduling in the trip. Last minute rescue by Rich Carson who offered us a plane ticket could, unfortunately, not get either of us there in time to fly in and rest before the start of the conference. We are grateful to both Marly and Rich for offering the opportunity and we hope to thank them in person at the next conference, which will hopefully indeed be held in Europe.

The tour of schools in Hertfordshire, England began on March 20^th 2007.

Holly (Prickles) has been giving educational speeches to children about fibromyalgia and M.E. (Myalgic Encephalopathy) / CFS (Chronic Fatigue Syndrome).

These speeches also briefly outline Chronic Myofascial Pain, Multiple Chemical Sensitivity, Restless Leg Syndrome and Lyme disease. We are hoping to extend these tours to Germany as well over the next couple of months.

You too can use our materials to give presentations in schools, churches or other venues in your area. Sign up and participate in this campaign to increase awareness. 

A YOUNG fibromyalgia sufferer from Bishop’s Stortford has launched a campaign to help raise awareness of the condition Holly Fraser has been suffering from the illness since she was 14 and is hoping raising its profile will mean swifter diagnosis for other sufferers in the future. 

Fibromyalgia is a chronic pain disorder characterised by musculoskeletal pain, fatigue and multiple tender points. Sufferers may also experience sleep disturbances, morning stiffness, irritable bowel syndrome and anxiety.  

It is caused by a lack of serotonin being produced by the brain during sleep, resulting in the muscles failing to relax. Although there is no known cure, low-dosage anti-depressants can help control it, while a combination of exercise, medication and relaxation can also be beneficial. Magnesium supplements also help. 

“I’m hoping if I increase awareness about fibromyalgia, then other people who suffer from it will be diagnosed earlier on and won’t have to go through that stress for so long,” the 20 year old student said.  

Since launching her campaign, Holly has produced several booklets with up-to-date information on the causes, diagnosis and treatment of fibromyalgia. She has already started distributing them to hospitals, GP surgeries and schools. 

“I realise that it’s very difficult for someone who has never experienced this to understand what it is like to live with an invisible illness day in and day out,” she said. “

But increasing awareness could save someone years of searching for answers and feeling like they’re the only person who suffers with this constant pain.” 

For more information email Holly  (Prickles)

and Fibroconnect feature Prickles in the "Fibromentor" section of their website http://www.fibroconnect.com/successStories.php