At the end of June this website will cease to exist. Do not worry we have a new website at wellmecfs.wordpress.com. Please update your bookmarks.
Shortly content on this website will disappear but it has already been copied to the new Wellington Region ME/CFS Support Group Inc. website.
Please come and visit our new home.
James - March 17th, 2010
Hello,
As an MSc student at the University of St Andrews, I am currently researching the experiences of those with ME/CFS, with particular emphasis on the role of patient-provider communication. I have an online questionnaire which aims to look at whether there is any direct impact from the experiences ME/CFS sufferers may receive from their primary health care contact. The questionnaire should take approximately 20 minutes and contains four different sections and all responses are kept completely confidential. There has been a substantial amount of work conducted within the area of patient-provider communication and its ’ impact on those with ME/CFS.
However, this study aims to provide a clear and concise analysis linking two factors together and hopefully providing adequate feedback to health practitioners that might ultimately be useful in highlighting the needs of ME/CFS sufferers.
The website for my questionnaire is: www.surveymonkey.com/s/CFSonlinesurvey
The survey will be running until 01.07.10.
I really feel that this is an area that, given enough responses, could provide substantial results to better the treatment patients receive by their doctors and therefore, feel the study is valid and of benefit to your readers.
Ceara Hayden
James - March 14th, 2010
I’m starting to feel like a broken record — a third study European study has failed to uncover a link between XMRV and chronic fatigue syndrome. Is this the nail in the coffin of this theory? Was all the hype and excitement for nothing? Are we back to square one?
Not in the least. This Dutch study, like the 2 British ones before it, didn’t even attempt to replicate the original XMRV study from the Whittemore Peterson Institute (WPI). It was the first to use similar testing methods, but the inclusion criteria were rather different — which could mean that we’re looking at 2 radically different populations.
James - March 9th, 2010
The next meeting of our Wellington Region ME/CFS Support Group Inc will be held on Monday 8 March, at the usual time, 12:30 to 2:30pm, in the room off the hall behind St Judes Church, 68 Freyberg St, Lyall Bay.
Following our Special General Meeting last month, we need to plan for the year ahead, including applications for funding and the need for more publicity, so we’ll have plenty to talk about. But we’ll also have time to catch up with each other’s news and meet and greet any new members or visitors.
James - February 26th, 2010
“In my practice I see many youngsters with fibromyalgia, often children of a parent with FM or connective tissue disease,” writes Dr. Pellegrino. But fortunately, he has found, those who are diagnosed and learn to manage their FM earlier in life tend to be among the two-thirds of fibromyalgia patients whose symptoms stabilize or improve over time.
James - February 25th, 2010
People with fibromyalgia and/or “chronic fatigue syndrome” (ME/CFS) often have problems maintaining blood pressure in an upright position.
Near-syncope is the result of the dysfunctional autonomic nerves that cause fluctuations in our blood pressure, especially when we go from a sitting to a standing position. (The autonomic nervous system maintains the “automatic” bodily functions performed by many organs, muscles and glands, and drives responses to physical or emotional stress – fight or flight.)
People with near-syncope and FM and/or ME/CFS do not have loss of consciousness (true syncope), but we get a lightheaded feeling as if we are about to faint but we don’t actually faint.
James - February 25th, 2010
Researchers investigating UK samples have found no association between the controversial xenotropic murine leukaemia virus-related virus (XMRV) and chronic fatigue syndrome (CFS). Their study, published in BioMed Central’s open access journal Retrovirology, calls into question a potential link described late last year by an American research team.
More @ Science Daily
James - February 22nd, 2010
For the second time in as many months, researchers have been unable to replicate a controversial study which showed that many patients with chronic fatigue syndrome carry a virus that might be linked to the disease. Researchers are now trying to figure out whether the discrepancies result from studying different patient populations or from fundamental problems between the laboratories involved.
James - February 22nd, 2010
At the Special General Meeting of our Wellington ME/CFS Support Group on 8 February 2010 the following officers were elected:
Chairperson – Martin Buck
Deputy Chair – Judith Clearwater
Secretary – Shirley Fernyhough
Treasurer – Richard Fernyhough
Deputy Treasurer – Robert Chung
Appointed Auditor – Keith Kenderdine
The Executive are:
Gerda Smit
Janice Roseingrave (Newsletter Editor)
James Eaton (Webmaster)
Ross Cooper (Asst Webmaster)
Roseanne Dawson (Telephone Tree)
Jackie Bell (Membership Secretary)
Appointments:
Tim Spargo agreed to continue as Librarian and Minutes Secretary
Birgit Hoen agreed to assist with the project to apply for funding.
James - February 22nd, 2010
“Throughout life the brain creates a million new connections every second! This means there is huge potential for healing and repair – it is simply a case of moving things in the right direction. But the brain has to have the energy supply to allow this process to happen.”
What allows the brain to work quickly and efficiently is energy supply. If this is impaired in any way, then the brain will go slow. Initially the symptoms would be of foggy brain, but if it progresses one will end up with dementia.
James - February 11th, 2010
Individuals views expressed in Brainstorm (The Web Site) do not necessarily reflect those of the Wellington ME/CFS Support Group.
Any information provided is not intended for use as, or to replace professional medical/diagnostic advice. If you have medical issues you should consult a physician.
Brainstorm (The Web Site) and the Wellington ME/CFS Support Group assumes no responsibility for the choice or outcome of any treatment by its readers.
Open Door is a unique form of community-based television that allows groups or individuals to apply to make a documentary programme about an issue that concerns them. This 'M.E'. episode looks into the lives of people suffering from Chronic Fatigue Syndrome. Despite 'normal' outward appearances syndrome sufferers are affected by debilitating exhaustion and 'brain fog', and can face long-term bed-ridden isolation, job loss, and skepticism about the reality of their illness.
Everybody is welcome to join Gerda every Friday between 11:00-12:30 at 27 Mexted Terrace, Linden, Tawa (Tawa Art and Craft Society Inc building)
Fine art, painting, poems, craft, scrapbooking, artist trading cards etc. It is about creating something with people to whom you don't have to explain about ME/CFS. Bring your art project or come a long and get some ideas what to do. If you just want to pop in for a coffee you are most welcome to.
For more information email the group, or contact Gerda.
Download the Groups information leaflet.
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