Annual General Meeting 2017 Wellington Region ME/CFS Support Group Incorporated (WellMe)

To be held on: Tuesday 5th December 2017 

Commencing at 12.30pm – Meeting Room 2, Level One, Anvil House, 138 – 140 Wakefield Street, Wellington

 Afternoon tea will be provided followed by Guest Speaker: Phillida  Bunkle 

Phillida will talk about the personal and family impacts of ME: deficits in care, the importance of family care for the sick, and its impacts on the other members.

I would like to touch on the practical difficulties of nursing the severely affected because they are barely acknowledged.

Phillida will also talk about attending the Invest in ME conference earlier this year and the importance to her personally. She will talk about the shifts taking place in the research community leading to better public attitudes and the importance of maintaining a healing environment not really addressed in scientific research.

Throughout her career, Phillida has been involved with many aspects of patient protection including patient advocacy, health consumer representation and policy development particularly concerning women’s health, and the care of people with ME/CFS and cancer. On four occasions she has been a delegate to WHO world summits on Women’s Health.

Most noted for co-writing ‘An Unfortunate Experiment at National Womens’ with Sandra Coney leading to a Commission of Inquiry headed by Dame Silvia Cartwright that helped strengthen patients’ rights and saw the establishment of a national cervical screening programme, Phillida has published widely and won a number of awards recognizing her contribution to health consumer protection. These include the New Zealand Health Industry Distinguished Public Service Award, and the New Zealand Governor General’s Special Award of Excellence in Journalism, and being made a life member of the National Distribution Workers Union (NZ).

Phillida Bunkle is qualified in many branches of massage and bodywork and is a former patron of the New Zealand Massage Institute. She also holds practice certificates in reflexology, foot care, cancer care and health coaching and currently divides her time between caring for family members with ME in New Zealand, and running a small private health coaching practice in nutrition and bodywork in Central London.

 

 

 

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Breaking News: NICE decides to Fully Update its guideline on ME/CFS!

The National Institute for Health and Care Excellence (NICE) announced yesterday  they are  to begin a review of its 2010 guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) following a recent public consultation with patient and professional groups.

According to the ME Association in the UK, ‘they will now commence a FULL REVIEW of the guideline for ME/CFS, effectively overturning previous expert advice not to update it’.

Sir Andrew Dillon, NICE Chief Executive, said: “The strong message from stakeholders was that the continuing debate about the causes of this condition and the best approach to treatment argued for a review of the current guideline.”

“We will now recruit a guideline committee which will include people with the condition and their carers, the healthcare professionals who treat them and the organisations which commission that treatment. As with all the guidance we produce, we will also ensure that stakeholders have the opportunity to provide evidence and insights throughout the development of the guideline.”

Further details about the review, including a scope outlining what it will cover and information about recruitment to the guideline committee, will be published on the NICE website as they become available.  

To view the full article go to :

https://www.nice.org.uk/news/article/nice-to-begin-review-of-its-guidance-on-the-diagnosis-and-treatment-of-cfs-me

For the ME Association announcement go to

http://www.meassociation.org.uk/2017/09/breaking-news-nice-decides-to-fully-update-its-guideline-on-mecfs-20-september-2017/

This is excellent news for people with ME/CFS both in the UK and in New Zealand. This review comes at a time when research is yielding promising results. Most relevant to the NICE guidelines review, is the research into the impact of exercise on the disease being conducted here at our own Massey University and in the US.  Our Ministry of Health very much looks to the UK for clinical models and guidelines, so we hope that this review will result in better outcomes for people diagnosed with ME/CFS.

Dr Charles Lapp on our radiowaves following warm reception in Wellington

Dr Lapp and WellMe
Sandra Forsyth, Vice Chair, Annie Judkins from Continuing Medical Education, Dr Charles Lapp, Catherine Kunz-Entwistle, Chair of WellMe after Dr Lapp’s lecture to first year registrars

Dr Lapp’s comprehensive lecture was very well received and WellMe is pleased it has been instrumental in educating the doctors who will provide the future care of its members.

To fully optimise the short time Dr Lapp would be in Wellington, WellMe worked tirelessly to arrange a lecture on ME/CFs/Fibromyalgia to first year Registrars.

Further to his tour, Sandra Forsyth, Vice Chair of WellMe has arranged for Dr Charles Lapp to be interviewed on Radio NZ’s Nine to Noon program on Tuesday 4th April.

Dr Lapp is a world renown ME/CFS/Fibromyalgia expert and a Director of the prestigious Hunter-Hopkins Centre a US clinic specialising in the diagnosis and treatment of ME/CFS and Fibromyalgia.

Dr Charles Lapp, Physician and Medical Director of Hunter Hopkins Centre in North Carolina, to visit Wellington as part of his Lecture Tour of New Zealand

Dr Charles Lapp, Physician and Medical Director of Hunter Hopkins Centre in North Carolina, USA will be undertaking a brief lecture tour of New Zealand between 26 March and 6 April.

Dr Charles Lapp
Dr Charles Lapp, Physician and Medical Director of Hunter  Hopkins Centre, Noth Carolina USA

Dr Lapp is recognised both nationally and internationally for his expertise in Myalgic Encephalopathy Society/Chronic Fatigue Syndrome, Fibromyalgia and related conditions.

Dr Lapp will be speaking in Dunedin, Wellington, Hamilton, Napier and Nelson with a final lecture in Auckland on 6 April.

In an order to maximise Dr Lapp’s time and expertise, WellMe, after much negotiation, has been able to arrange for a lecture to first year Registrars which will form part of their Continuing Medical Education programme.

WellMe is very pleased with this outcome, believing it vital that doctors who will be treating our members in the future have a better understanding of ME/CFS and Fibromyalgia.

The lecture will take place on Thursday, 30 March. Although this is a closed meeting, WellMe has been able to invite selected medical professionals and researchers with expertise in ME/CFS and Fibromyalgia.

A recording of a Dr Lapp lecture will be made available to our members in due course.

WellMe raising awareness of MECFS with the Hon Anette King

Sandra Forsyth and Annette King Waikanae 2 March

WellMe has a long term strategy for the raising of public awareness around ME/CFS and the advancement of better outcomes for our members.

As part of that strategy, and WellMe’s ongoing lobbying and active relationship building, Sandra Forsyth, Vice Chair and Eileen Brodigan, Special Projects Manager, attended a recent Labour Party meeting on health.

While there Sandra and Eileen discussed with Annette King our members inability to access the public health system and the financial devastation caused by chronic illness with further discussions to take place. 

Photo: Sandra Forsyth, Vice Chair of WellMe with Hon Annette King former Minister of Health, current opposition spokesperson for Health, member of the Select Committee on Health and MP for Rongotai 

Administrative Coordinator Hours

Hello Lovely Friends,

The Administrative Coordinator telephone office hours have been set as Monday, Tuesday, Thursday &  Friday from 10:30am to 2:00pm. You can contact me by phone on 0800 632 847. Any urgent requests are free to come outside of office hours.

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As always, for questions and information you can get in touch with me via email, or if you are looking to book a time with Claire, you can contact her directly through her WellMe email address.

I look forward to seeing at you our 3 March Support Group meeting with Dr. Rosamund Vallings.

Jen Purvis
Administrative Coordinator

Study suggests some chronic fatigue syndrome patients may benefit from anti-herpesvirus drug treatment

Many experts believe that chronic fatigue syndrome (CFS) has several root causes including some viruses. Now, lead scientists Shara Pantry, Maria Medveczky and Peter Medveczky of the University of South Florida’s Morsani College of Medicine, along with the help of several collaborating scientists and clinicians, have published an article  in the Journal of Medical Virology suggesting that a common virus, Human Herpesvirus 6 (HHV-6), is the possible cause of some CFS cases.

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