Welcome

This is the website of the Wellington Region ME/CFS Support Group Inc.

We are pleased to introduce a forum called KiwiCFSME. You can join this forum by going to the forum’s webpage. The support group have started this forum with an aim of providing an online support group for all of New Zealand. We believe that now is the right time to start this, as most people now have access to the Internet.

KiwiCFSME

Visit this group

Once you have joined KiwiCFSME you can post to the forum using email, and posts appear in your email inbox. You can opt to receive one email for each post, or an email digest consisting of that days postings. If you do not wish to receive emails you can choose to logon to the forum at KiwiCFSME.

If you find any errors on this website, or missing pages (404), please email us and let us know

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Co-ordinator / Community Support Worker

The Group has recently appointed a Co-ordinator / Community Support Worker to continue working on the services we offer our members.

Sandra is available:

• By phone or email to work with, and support, sufferers of ME/CFS in the Wellington region. This includes their families and carers;
• To assist members to access services from various governmental agencies, district health boards, and the medical profession;
• To disseminate information to members regarding new and ongoing research projects, talks by educational speakers and items of interest available from the Group’s library;
• To encourage greater membership and more proactive involvement in the Group;
• To produce a quarterly newsletter;
• For home visits

She can be contacted on (04) 977 5654 or via email

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Coping with Phone Issues When Illness Limits Energy

Do you feel you have to answer the phone even when you would prefer not to? Do you have trouble limiting the length of phone calls or feel guilty if you don’t talk to people?

If you experience any of these things, you’re not alone. We recently had a discussion of phone etiquette and strategies, and were surprised at how many people had conflicts about the use of their phone, or who experience phone use as something that intensifies their symptoms.

But the discussion also identified strategies people use to overcome these problems.

More @ ProHealth

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Chronic Pain Control Basics for ME/CFS and Fibromyalgia

Of the difficult but treatable symptoms of chronic fatigue syndrome (CFS) and fibromyalgia (FM), chronic pain is rarely treated adequately. Headaches, lymph node tenderness, muscle pain and joint pain cause considerable long term discomfort – sometimes mild, sometimes severe. There may be fluctuations in the severity of pain.

More @ ProHealth

Filed under: Notice Board , Fibromyalgia

Physical Activity, Sustained Sedentary Behavior, and Pain Modulation in Women with Fibromyalgia

Fibromyalgia (FM) has been conceptualized as a disorder of the central nervous system, characterized by augmented sensory processing and an inability to effectively modulate pain.

We previously reported that physical activity is related to brain processing of pain, providing evidence for a potential mechanism of pain management.

The purpose of this study was to extend our work by manipulating pain modulation and determining relationships to both physical activity and sustained sedentary behavior.

Eleven women with FM completed accelerometer measures of physical activity and underwent functional magnetic resonance imaging of painful heat, administered alone and during distracting cognitive tasks.

More @ ProHealth

Filed under: Notice Board , Fibromyalgia, research

A Tale of Two Viruses: Why AIDS Was Pinned to HIV, but Chronic Fatigue Remains a Mystery

The detection of a new virus called XMRV in the blood of patients with chronic fatigue syndrome (CFS) in 2009 raised hope that a long-sought cause of the disease, whose central characteristic is extreme tiredness that lasts for at least six months, had been finally found. But that hypothesis has dramatically fallen apart in recent months. Its public demise brings to mind an instance when a virus *was* successfully determined to be behind a mysterious scourge: the case of HIV and AIDS. How are these two diseases different—how was it that stringent lab tests and epidemiology ruled one of these viruses out, and one of them in?

More @ Discover

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A Message from CII Director W. Ian Lipkin Regarding the XMRV/MLV CFS/ME Study

Virologist Ian Lipkin, MD, heads Columbia University’s Center for Infection and Immunity. And currently he is directing a project involving 11 investigators who will conduct state-of-the-art analysis to search for evidence of viruses in blood samples from a well-characterized, geographically distributed US cohort of ME/CFS patients – what he calls “the XMRV/MLV CFS/ME study.”

Read more

Thanks to ProHealth

Filed under: Notice Board , research, xmrv

The ME/CFS – Probiotic Connection

A highlight of the American College of Gastroenterology’s 2011 Scientific Meeting was a report on the significant benefits of the probiotic strain Bifidobacterium infantis 35624 “as an anti-inflammatory agent” in a trial including patients with chronic fatigue syndrome (ME/CFS), psoriasis, and ulcerative colitis.

B infantis, a primary inhabitant of the digestive tract of newborn infants, is considered essential for good health in both infants and adults.

More @ ProHealth

Filed under: Notice Board , dietary supplement, Fibromyalgia, research

Inflammation and depression are linked, but how?

Prolonged inflammation is common to many chronic conditions, including high blood pressure, coronary artery disease, diabetes – and major depression. Depression has been linked specifically to a marker of inflammation in the blood called C-reactive protein (CRP).

But does this inflammation contribute to – or result from – depression?

More @ProHealth

Filed under: Notice Board , depression, research

New Mitochondrial Function Analysis Technique to Be Used in ME/CFS Research at U of Liverpool

Researchers at the University of Liverpool will be the first to implement a newly developed lab technique that is more sensitive to identifying mitochondrial function within the muscle’s fibers – a technique they believe could reveal the causes of Chronic Fatigue Syndrome (ME/CFS).

More @ProHealth

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How to Help Your Doctor Understand ME/CFS Disability

The central aspect causing the disability of chronic fatigue syndrome (ME/CFS) is elusive. Patients say that they have fatigue, but physicians do not understand what is so bad about that. Nearly everyone has fatigue. Certainly physicians have fatigue.

Whatever it is that patients with CFS have is different; what is entirely unique is not the fatigue but the activity limitation.

More @ProHealth

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Exciting Research Connects Epstein-Barr to MS Brain Lesions & Potentially Other Disorders Involving the CNS

A new study by researchers at Queen Mary, University of London shows how the Epstein-Barr virus tricks the immune system into triggering an acute inflammatory process and nerve cell damage in the brain.

More @ ProHealth

Filed under: Notice Board , EBV, research