- News archives 2004-
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Archive 2005
Archive 2003
Archive 2002
Archive 2001
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December 2004: A multinational help effort was set up to help David Laing, a reader who wrote in recently with health issues following a bout of Guillain-Barré syndrome. See his email in 'Readers' comments' as well as his case history in the database.
David, who lives in Scotland, wrote to me, located in Denmark, from where his email was rapidly forwarded around the world. Thanks to the support groups and health professionals in New Zealand and the UK, who have collaborated to help him!
This is the latest of several successful help efforts undertaken in 2004, thanks to the internet, and the laypeople and professionals who give generously of their time and knowledge!
David has promised to write and keep readers informed of his progress.
The GBS Foundation has just held its eighth international symposium in Georgia. The report should soon be out, keep watching this spot for more news!
From New Zealand comes a 'recipe' for foot cream that has helped many GBS patients. [more]Still haven't bought all those gifts? Check out the book section for good books on life experiences with Guillain-Barre syndrome!
Merry Christmas to all readers and good health in the coming year! See you again in 2005 for more GBS news from around the world!
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November 2004: The New Zealand Guillain-Barré support group is holding their second GBS conference 22-24 April 2005. The theme is Sharing Experiences, and sufferers, family and caregivers are invited to attend. For more information, please contact Jenny Murray.
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October 2004: The New Zealand Guillain-Barré support group has informed me of a new trial into residual fatigue in post-GBS patients by Dr. Gareth Parry, who is also researching new treatment for this fatigue. Interested? See the 'Research & Trials' page, and talk to your physician about participating in it.
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September 2004: The Karolinska Institutet in Stockholm, Sweden, will be hosting the 1st international conference on rare diseases and orphan drugs 15-16 February, 2005.
The conference will cover Diagnostics, Prevention and Treatment of Rare Diseases. It will also focus on the improved possibilities for the development of novel treatments, following the Orphan Drug legislations in the US and EU. Speakers and participants are invited from academia, pharmaceutical industry, funding and patient organizations, the European Commission, the National Institutes of Health and other policymaking organizations.
Thanks to Ken and Jenny for the heads-up!
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August 2004: Trish Orcutt of Florida sent in her case history. Written very simply, it describes how Guillain-Barré patients experience the syndrome. See 'Case Histories'.
A new website on evidence-based complementary medicine has been commissioned by the New Zealand Ministry of Health, and is under way. Among other features, it has a safety alert system that covers warnings, interactions between herbal medicines, dietary supplements and drugs. There is information on alternative treatment methods, and Kiwis will enjoy the information on traditional uses of NZ native plants.
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July 2004: I received an email asking for suggestions. How can friends help and support families going through the illness of a family member, through Guillain-Barré syndrome? This website contains several suggestions.
However, entire communities can also resolve to help! When Lucia was hospitalised with GBS, local clubs and groups cooked meals and baby-sat the kids, so her husband could continue to work. They held a Benefit and a pancake breakfast to help cover the cost of daycare. And a raffle, with prizes such spa packages and baseball tickets, etc. to help the family. It is my hope that these stories will inspire others.Meanwhile, in Jerusalem, serious flaws in the management of a GBS patient have led to unprecedented criticism in a report presented to the Health Ministry. [more]
I've just become aware of the many illnesses tick bites can cause, among them Lyme Disease and possible Guillain-Barré syndrome. So a good tick spray has become part of my routine when going walking in woods etc. Read up on ticks and how to prevent yourself, family and friends, as well as pets, from being bitten [more].
Campylobacter jejuni causes millions of cases of food poisoning every year. It also causes Guillain-Barré in some victims. Sources of contamination include improperly cooked meat, unpasteurised milk and contaminated salads and water. The bacteria flourishes in summer temperatures and humidity, and if not handled carefully, outdoor buffets and bbqs can cause food poisoning.
Did you know that almost 60% of us do not cook meat thoroughly? And that precooking your meat before finishing it off on the bbq can diminish the risk considerably? Read about the prevention, symptoms and treatment of food poisoning [more].
The good news is that EU programme CAMPYCHECK has been launched to optimise detection and minimise the impact of this bacteria. [more]
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June 2004: An email from Anne, who suffered from MMN, led to the creation of the 'Focus on MMN' page. Check it out!
Vilma Clarke passed away recently. Despite a busy family and the problems associated with being a CIDP patient, Vilma helped hundreds of GBS and CIDP patients in Australia and abroad. She headed the local support group, and when I met her in 2003, was planning Australia's first GBS conference with a mixture of nerves and anticipation. She will be missed a great deal! [Case history]
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May 2004: Ken Sawyer has kindly drawn my attention to a new trial initiated by Bayer. Please check the 'Research and Trials' section for more information.
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April 2004: A Cochrane review shows that patient decision aids help patients take an active role in making informed health decisions.
Learn more about health decision aids, check Ottawa Health Research Institutes website. Its Patient Decision Aids research program was developed to help patients and their healthcare providers make tough health-care decisions that may have many options, uncertain outcomes, or benefits and harms that people value differently. The team designs and tests decision aids and training programs for patients and health practitioners.
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March 2004: A Vancouver study found no connection between high levels of arsenic in some north county wells and what residents considered an abnormally high incidence of Guillain-Barre Syndrome in area residents (see February 2004). The incidence is within national limits, and no link has been found between arsenic and the syndrome.
However, people with wells are urged to have their water tested to avoid problems. Some residents have had to switch to bottled water due to the high levels of arsenic in their groundwater.I have just been contacted by the Double H Hole in the Woods Ranch in the US, which is a camp for children with serious and chronic illnesses. It provides a medically safe and fun summer camp experience at no cost to the family. This year they are inviting families where the camper is ventilator dependent for all or part of every day. Application deadline is 15.04.2004.
Scientists are baffled over New Zealand's rates of campylo-bacteriosis, that are up to 10 times higher than in Canada and USA. Campylobacteriosis is a common food-borne illness associated with infected chicken, infected animals or waterways. It is a recognised cause of Guillain-Barre syndrom, with about 40% of cases being caused by a preceding infection of Campylobacter jejuni. [read article]
Meanwhile, a new Danish study proves that flies invade chicken farms and infect chickens with Campylobacter, causing campylo- bacteriosis. Over 8% of the invading flies were infected. A new study will investigate whether enclosing chicken farms in fine-meshed net will lower infection to under 0.1%, and reduce the rate campylobacteriosis in humans. [more]
Should you care whether your OJ is pasteurised, whether the cake decorator wore false nails? Yes, says this article. Because we are talking about real health risks that can destroy your life, not theoretical risks [more]. Thanks to George B. for both links!
Patrick's case history is the newest in the collection of real-life experiences of Guillain-Barré syndrome. He experiences problems with painful stiffness post-GBS, is there anybody who can offer advice on this subject? Check 'Case histories'.
Pat Barefoot was a weekend artist. After being stricken with Guillain-Barre Syndrome, her paintings and drawings progressed from pastime to physical and emotional therapy that helped her recover. What's more, she is now a professional... [more]
Tyran, an American GI, was stricken by Guillain-Barré syndrome after a series of mandatory military vaccinations. Read more about the issue of mandatory vaccinations for US troops."Doctors told her the sudden, paralyzing illness she contracted had no certain cause nor cure... Doctors called it Guillain-Barré Syndrome, but deep inside, she considered it punishment for placing her husband in a nursing home..."
This opening statement stems from an article about Hispanics attitude towards nursing homes. It sums up the attitude of many patients towards Guillain-Barre syndrome. Depending on their culture and background, they fear, or may even be told that the disease is a punishment for something they've done. Unable to atone, they fear they will never recover. An issue carers and healthcare professionals should be aware of. [Read article]
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February 2004: In Melbourne, thieves made off with Simone's custom-made leg splints, leaving her housebound [more].
No, I am not putting out an international SOS for them! What I have noted is that Simone still requires orthotics 20 years after she suffered from Guillain-Barré. I have heard from many readers who complain their GPs lack information on post-GBS. I am collecting real-life information at 'Focus on post-GBS residuals' - do you have experiences you'd like to contribute? Email me!
In the UK, Oxford midfielder Jamie Brooks has joined Tamworth on a month's loan. He is still recovering from Guillain-Barré, but hopes to make his debut on saturday [more].
Many patients who do not recover fully feel that they are barred from doing the things they loved. Australian bowler Kerkow has not let Guillain-Barré prevent him from winning. Although he still requires a stick to keep himself steady on delivery, this did not prevent him bowling his way to the quarter-finals of the WBT world indoor singles championship! [more]In Canada, Vancouver health authorities are investigating whether a link exists between high readings of arsenic in northwest Clark County wells and a possible spike in the occurrence of Guillain-Barre syndrome. [more]
This will interest patients such as Milt who suspect heavy-metal poisoning as the cause of their affliction with Guillain-Barré syndrome - check out 'Case Histories' for Milts story.This week's case history seems relevant for this time of year and the associated influenza problems around the world. Molly Campbell has CIDP and many associated health issues, perhaps caused by a 'flu vaccine. Read about her positive attitude to life - see 'Case histories'.
Also, do check out "Respiratory Etiquette" to help prevent and control the spread of colds, flu and other respiratory illnesses.
A homecooked dinner can be dangerous, as James Perkins found out! A bout of food-poisoning led to GBS, and paralysis. He explains why physiotherapy is vital to regain movement, and says he "has a lot of living to do" when he recovers. [more]
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January 2004: Cynthias pre-teen son has Guillain-Barré syndrome, possibly CIDP. She writes from the heart about the frustrations of dealing with an ill child and his healthy siblings. Can you offer advice or support? See 'Case histories'.
Linda, wife of thriller writer Terence Strong, was 45 and fit when she was struck by Guillain-Barré Syndrome. Paralysed, it was as if she was buried alive... [more]Scientists suspect bottled water may cause food poisoning, which could in turn cause Guillain-Barre. [more]
The flu is widespread in most US states and the number of deaths due to pneumonia and influenza is now at an epidemic level. Why is the flu such a problem this year, and why should Guillain-Barré sufferers or recoverees learn about the pros and cons of the vaccination? Click on 'Links' and check out the Vaccines section!
Over the years, I have received several queries about a possible connection between anthrax shots and GBS. Many of these came from persons connected to the US military, where such shots were mandatory. This piece of news should be of interest! [more]. Since then, the order barring compulsory anthrax vaccinations for US troops has been lifted . The vaccinations are once again mandatory. [more]
David Lim was struck down by GBS two weeks after leading the first Singapore Everest expedition in 1998. Pre-GBS, he had run two marathons. Post-GBS, permanent foot damage requires the use of orthotic braces, and learning to run was like "running in ski boots".
The disabled climber recently ran his first mini-marathon since GBS, in Singapore. It was "a small mountain to climb in my mind". Why try? "Everyone should live the lives they want to, including doing daft things like running marathons. We should include a go-for-it attitude as an element in defining our personal success in life."
David scaled his personal mountain, shuffling exhaustedly over the finish line. Not content with that, a week later, he spent several days climbing Mt. Kinabalu with participants of a Community Development Youth Adventure program.David Lim is constantly challenging himself as well as mindsets as to the limitations of disabled people. Presently in East Africa, he is on a climb featuring four disabled mountaineers attempting a remote route on the northern icefields of Mount Kilimanjaro (5895m). Read their despatches at Kilimanjaro Challenge 2004. David is an inspiration to patients struggling for normalcy after GBS! [case history].
Guidelines have been developed and published by leading international experts in pain management, to help physicians improve diagnosis and management of patients suffering from chronic neuropathic pain.
It is hoped that the guidelines will improve diagnosis and treatment for the patients, whose quality of life is often severely affected by their chronic pain. [read article]
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© Copyright 2001-2007 S. Marcussen. All rights reserved.
Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk