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Breaking News WPI Response to Second UK study |
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International Advocacy
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Written by Whittemore Peterson Institute
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Thursday, 18 February 2010 19:30 |
Breaking News WPI Response to Second UK study
Today at 6:41pm
Breaking News February 18,2010
February 18, 2010: WPI is aware of the recent UK study that was unable to detect the presence of XMRV in any CFS patient samples. Although researchers at the WPI were not involved in this project, our work in XMRV continues with researchers around the world. We look forward to the results of studies which replicate the methods used in the original research described in the journal Science in October, 2009.
Please read more for the full press statement. Reposted on Diagnose Support.
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NL - The saga continues - ME-CFS foundation bewilderd |
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International Advocacy
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Written by Carla
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Monday, 08 February 2010 19:51 |
January 18th the Dutch ME-CFS foundation proudly stated in their press release that our State Secretary of the Ministry of Health, Welfare and Sport (VWS) had adopted the recommendation from the Taskforce "Linschoten" to acknowledge Chronic Fatigue Syndrome (CFS, also known as ME) as a chronic illness, which she was going to discuss in /relay to our parliament shortly. With this recommendation (and the possible motion/change in law), Dutch ME/CFS patients would then be eligible for reimbursements in the framework of the WMO and the Law "Compensation For the Sick and Disabled" (WTCG – Dutch abbreviation). (See translated press release)
A little less then two weeks after the announcement, State Secretary Bussemaker sent in a letter which was published on a press site stating, the recommendation was only meant for children with CFS who were categorised as CFS patients in the pediatric classification list. (read our report of January 30)
The ME-CVS foundation reacted today with a press release stating their (and the Dutch patient community's) bewilderment regarding the retraction of the commitment to people with ME/CFS.....
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Change of leadership for CDC's CFS Research Program |
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International Advocacy
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Written by the CFIDS Association of America
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Saturday, 30 January 2010 00:02 |
The U.S. Centers for Disease Control and Prevention (CDC) has announced that Dr. William C. Reeves, head of the agency's CFS Research Program, will be taking a new position within the agency effective Feb. 14, 2010 and that he will no longer lead the agency's CFS research. Dr. Elizabeth Unger will serve as acting chief of the Chronic Viral Diseases Branch, the unit within CDC that houses the CFS Research Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC's Office of Surveillance, Epidemiology, and Laboratory Services.
The CFIDS Association of America, other organizations and advocates have vocally supported new program leadership to effect a more robust research effort at CDC. This staffing change has the potential to significantly advance CFS research beyond the agency's intramural program and to seize scientific momentum generated by recent discoveries. We are fully dedicated to making rapid progress in this new era of collaboration and discovery in CFS research.
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NL - Task Force Linschoten advice Wtcg criteria for children only |
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International Advocacy
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Written by Carla
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Saturday, 30 January 2010 00:01 |
On a day with such good news (Reeves’ exit and Clara Valverde’s book coming out) I am sorry to have to report a less positive issue. Last week, very enthusiastic, I published the information regarding the State Secretary’s decision to recommend M.E./C.F.S. as a chronic illness in the next parliament session.
There is good news and bad news: In a letter to the press, State Secretary Bussemaker reports that this recommendation turns out to be ONLY for children with CFS. Pediatricians seem to keep a classification list, on which ‘CFS’ appareantly is a category (we now wonder if M.E. is on that list as well, please read on).
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UK - The 5th Invest in ME International ME/CFS Conference 2010 |
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On the Agenda
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Written by Carla
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Friday, 29 January 2010 17:59 |
The British ME organisation "Invest in Me" is hosting a conference on May 24th 2010. When it was first announced, it seemed a million years away, but let's face it, time goes quickly. Last week "Invest in ME" announced their speakers list, which is impressive. The organisation celebrates it's first aniversary with this conference, it's the 5th already. This years slogan is "A New Era in ME/CFS Research", which it truely is. The theme is "Education of Health Care Staff in ME/CFS".
It will be a one day conference, the doors will open at 8 am and it will be a long day. There are quiet rooms available for patients who would like to rest and food and beverages will be provided. The website holds all the details.
This conference is available for patients, patient organisations, health care professionals and researchers. Invest in ME also appeals in particular to members of the government, social services, health departments and education to attend and learn about the truth behind ME/CFS. Patients pay the minimum fee of 35 pounds sterling, rates for other attendees are higher.
If you are contemplating to attend the conference, please be aware that you will have to purchase the ticket in advance and that on average, hotels in the UK provide little comfort for a lot of money. Other than that, the setting is marvellous and if you have the opportunity to go, we would surely recommend it.
Please visit the conference pages on the Invest in ME website for more details.
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January 22nd - Presentation by Dr. Judy Mikovits |
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On the Agenda
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Written by Prohealth, Inc.
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Thursday, 21 January 2010 23:29 |
View the video's of Dr. Judy's presentation in our Video Library.
ProHealth and the HHV-6 Foundation are honored to be hosting this globally webcasted presentation & Q&A session by XMRV researcher Judy Mikovits, PhD.
This Santa Barbara-based event will be Dr. Mikovits' first presentation to patients since publication of the groundbreaking XMRV paper in October 2009. She will take questions from the audience, and has made a special effort to address many that patients and researchers from all over the world have submitted in advance.
Annette Whittemore, Founder and President of the Whittemore-Peterson Institute, will kick off the event.
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NL - Press Release from NL: State Secretary Bussemaker recognizes CFS as a chronic illness |
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International Advocacy
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Written by ME-CVS Stichting - translated by Diagnose Support
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Monday, 18 January 2010 17:30 |
State Secretary Jet Bussemaker of the Ministry of Health, Welfare and Sport (VWS) has accepted the advice of the Taskforce “Linschoten” to acknowledge Chronic Fatigue Syndrome (CFS, also known as ME) as a chronic illness. If the Dutch Parliament accepts her proposal (motion), all CFS patients in the Netherlands will finally be eligible for reimbursements in the framework of the WMO and the Law "Compensation For the Sick and Disabled" (WTCG – Dutch abbreviation).
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Patient Advocacy
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Written by Holly Fraser
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Sunday, 10 June 2007 23:45 |
A local online newspaper in Ohio dared to publish an outrageous editorial in february 2007 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.
After a few months the newspaper published the article and helped to shed a positive light on C.F.S./M.E. As retribution they ran two additional stories, one interview with a local doctor covering some of the medical aspects and an item on the legal issues patients face.
We hear of patients with invisible illnesses being treated disrespectfully all too often. It is only sporadically that something is done about it, because those who fall victim to such disrespect are too ill to put things right. We therefore honour Kathleen and Chris for fighting back.
It is your courage that will help make a difference for our community. Thank you both for the time and energy you have put into this.
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SPARK ! The CDC/CFIDS Campaign to Ignite Awareness |
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International Advocacy
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Written by Carla
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Thursday, 15 March 2007 11:33 |
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About the Campaign, a quote from the S.P.A.R.K. website:
"The first national public awareness campaign on chronic fatigue syndrome was launched June 7, 2006. This multifaceted $4 million campaign is designed to educate both the general public and health care professionals about CFS. The campaign will extend through 2007.
Primary funding for the campaign has been provided by the Centers for Disease Control and Prevention (CDC). The funding came from the health marketing arm of the CDC, leaving their CFS research budget intact. The CFIDS Association of America was selected as the contractor to implement the campaign.
The campaign delivers vital information about who is at risk for CFS, the symptoms of the illness, treatment and management options, the importance of seeking diagnosis and treatment, and the impact of CFS illness on both patients and family members.
This campaign will ignite interest in CFS and spark increased understanding about the illness among the general public, health care professionals, legislators and the media. The campaign also has the potential to increase research funding for CFS from federal, biotech and pharmaceutical sources over the next decade."
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Prickles in the press - Highlighting an invisible illness |
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Patient Advocacy
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Written by Holly Fraser
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Tuesday, 13 March 2007 22:02 |
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{mosimage} 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. Holly first started getting sinus pain at the age of seven and over the years her fibromyalgia has got progressively worse, although it was only recently diagnosed. Some of her symptoms include stabbing pains in her wrists that leave her struggling to write or even hold a glass of water. “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. {mosimage} “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
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Pandora - The Patients Alliance |
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International Advocacy
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Written by Carla
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Tuesday, 13 March 2007 16:12 |
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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. 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.
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Advocacy & Awareness
