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

Filed under: Notice Board

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

Filed under: Notice Board

June meeting – Note new time!

Hi everyone,

You may have realised that our next scheduled meeting falls on Monday 4th June, which is the Queen’s birthday.

The meeting will therefore be held on Tuesday 5th June, at the Johnsonville Community Centre (Room 5) – starting at 12.30pm.

I hope you can join us for a cup of tea/coffee and a natter. It is a nice warm room, so do come along!

Sandra

Filed under: Meeting Notices

20 Rules for Living with Fibromyalgia

Zona Taylor (FibromyalgiaNervePain.com) decided to share her rules for living with fibromyalgia after reading “Uncertainty About Recovery from ME/CFS & Fibromyalgia – a Patient’s Point of View.” Thank you very much, Zona!

More @ ProHealth

Filed under: Notice Board, Fibromyalgia

Cleaning Up After XMRV

The retrovirus XMRV does not cause prostate cancer or chronic fatigue syndrome — that hypothesis was disproved by the finding that the virus was produced in the laboratory in the 1990s by passage of a prostate tumor in nude mice. A trio of new papers on the virus attempt to address questions about the serological detection of XMRV in prostate cancer, and further emphasize that XMRV is not a human pathogen.

More @ Watching The Watchers

Filed under: Notice Board, xmrv

May 12th – International ME/CFS & FM Awareness Day

To help publicize International ME/CFS & FM Awareness Day this May 12 members of our group and other volunteers will be on the streets of Wellington, Lower Hutt,  Porirua and Whitby seeking donations.

So if you see anyone please smile, and give generously.

This year, 2012, marks the 20^th year for an International May 12th Awareness Day.
The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases). Mr. Hennessy was based in the US but understood that it needed to be an International event.
He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).

May 12 was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.

Filed under: Notice Board

Chronic Pain and Fatigue Trust Launches in New Zealand

Fibromyalgia and Chronic Fatigue Syndrome sufferers around the world are looking forward to May 12th 2012 for their international awareness day. The exciting news is that a new charitable trust is launching here in New Zealand on May 10th to provide services for 120,000 – 220,000 people who suffer in this country.

Fibromyalgia (Fibro) and Chronic Fatigue Syndrome (CFS) are extremely debilitating disorders with symptoms such as extreme fatigue (unrelieved by rest), severe headaches, chronic sore throats, body wide muscle pains and spasms, insomnia, severe abdominal pain and nausea.

After 2 years of preparation and building relationships within the health sector, both medical and not for profits, the Chronic Pain and Fatigue Trust is now ready to start providing no cost services to sufferers throughout the country. Services are aimed at achieving four main priorities;

Raising awareness and understanding in the community

Education of medical communities

Education, self-management and treatment advice and support for those that suffer

Fieldworkers to provide practical assistance for the severely unwell

The official launch is being held at Rannoch House in Epsom (Thursday 10th May) and is being celebrated by medical professionals, volunteers, other not for profit representatives and local sufferers.

All press are welcome to attend. Canapés and drinks from 6.30 onwards.

Contact Details:
Emma Nielsen
Founder & Chair
Ph: 09 282 3865
Cell: 021 607 661

E: Emma@itsreal.org.nz

Filed under: Notice Board, Fibromyalgia, Pain

Fatigue supplements are actually misbranded drugs: FDA

A commercial website for people suffering from symptoms of chronic fatigue syndrome and fibromyalgia is rife with numerous illegal and misleading treatment claims, according to a recent warning letter sent to Dr. Jacob Teitelbaum by the U.S. Food and Drug Administration.

More @ Chicage Tribune

Filed under: Notice Board

May Meeting

Just a reminder that our May meeting is coming up on Monday 7th at St Jude’s hall in Lyall Bay – starting at 12.30.

Autumn is definitely upon us, so wrap up warmly and come along for a chat and a warm cuppa. We do not have any speaker coming this time, so come along for some socialising!

Hope to see you there,

Sandra

Filed under: Meeting Notices

Spoon Theory on Video

We have published the Spoon Theory by Christine Miserandino here before. But now we are able to provide a video of The Spoon Theory presented by the writer, Christine Miserandino.

Filed under: Notice Board

Chronic Fatigue Syndrome Patients Had Reduced Activity in Brain’s ‘Reward Center’

Findings show that patients with chronic fatigue syndrome have decreased activation of an area of the brain known as the basal ganglia in response to reward.

More @ Science Daily

Filed under: Notice Board, basal ganglia, research

The Assault on Chronic Pain in Fibromyalgia and ME/CFS – a Combined Approach

Normally, pain is accompanied by healing and repair, and this involves inflammation. But when things get complicated, as with autoimmune activity, fibromyalgia and ME/CFS, it is almost impossible to tease apart the threads of chronic pain, chronic fatigue and inflammation. And it is a combined approach that gets results.

More @ ProHealth

Filed under: Notice Board, Fibromyalgia