Professor Anne La Flamme to speak on ‘When the Body’s Immune system changes from Friend to Foe’ at St Johns in the City Tuesday 9 May: 6:00pm

WellMe is pleased to announce Professor Anne La Flamme as our keynote speaker at its Keynote Speaker Wellington meeting to be held at 6 pm, Tuesday, 9 May at St Johns in the City conference room, Ground Floor, corner of Willis Street, Dixon Street, Te Aro, Wellington 6011.

Professor La Flamme has been in New Zealand for eleven years, and is a Professor in Cell and Immunobiology at the School of Biological Sciences, Victoria University of Wellington. She is also Head of the MS Research Programme at the Malaghan Institute of Medical Research. Professor La Flamme is one of New Zealand’s leading Multiple Sclerosis (MS) researchers and is focused on finding a cure for this immune mediated disease, and in particular aims to find a treatment that will benefit the sub-set of MS patients that do not respond to any existing treatment.

Professor La Flamme received her BSc in Life Sciences from the Massachusetts Institute of Technology and her Masters in Molecular Parasitology and PhD in Immunoparasitology from the University of Washington, Seattle. After receiving her doctorate, Professor La Flamme spent several years at Cornell University studying how parasites alter the host’s immune response and cause immune-mediated pathology.

Recently, Professor La Flamme’s laboratory found that a commonly used anti-psychotic drug is effective at modifying MS in an experimental model of the disease. Through a Neurological Foundation-funded project, she is investigating the potential of this drug to treat MS and the findings will guide future trials of the drug in MS patients. If this drug is effective for the treatment of MS, new insights into immune dysfunction and its contribution to disease pathogenesis will emerge.

Professor La Flamme will talk on ‘When the Body’s Immune System Changes from Friend to Foe and its impact on our health’.

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 

Dr Rosamund Vallings spoke on the latest international research on ME/CFS

In September we held our AGM. Guest speaker Dr Ros Vallings, spoke to the meeting about recent research findings presented at the 11th Invest in ME – Research International conference in London, June 2016 – the theme being ‘A New Decade of Invest in ME – Research’.

Dr Rosamund Vallings: MNZM, MB BS (Lond), MRCS LRCP, Dip Clin Hyp, BA (Massey)

Dr3

Dr Vallings has run a medical practice in Auckland since 1966 which for the past 35 years has specialised in those suffering from Chronic Fatigue Syndrome (CFS/ME)  and related conditions. Dr Vallings has been involved in diagnosing and managing these patients, running regular seminars for these patients and producing an education booklet and a number of information sheets. Dr Vallings has published two books –‘Diagnosis and management of CFS/ME’ and ‘”Managing ME/CFS” a  guide for young people.’

Dr Vallings is the medical adviser to the ANZMES–the national organisation supporting those with CFS/ME and has been involved in GP and student education at the University of Auckland speaking to medical groups around NZ. Dr Vallings has regularly attended international CFS/ME conferences and presented papers.She has visited a number of CFS/ME centres overseas and maintains contact with many overseas CFS/ME organisations

Dr Vallings is a member of the International Association for CFS/ME (IACFS), has reviewed the overseas guidelines for diagnosis and management of CFS/ME for the NZ Guidelines Group, with a view to providing a set of NZ Guidelines. Dr Vallings is also a co-author of the IACFS/ME Physicians’ Primer, and has participated in the international group producing the Canadian and International Consensus Definitions for CFS/ME. She is currently involved with an international group writing a Paediatric Primer for Physicians and has frequently been involved in collaborative research both in New Zealand and overseas.

In January 2008, Dr Vallings was awarded Membership of the New Zealand Order of Merit for services to CFS/ME.

In October 2016, Dr Vallings was presented with the prestigious Nelson Gantz Clinicians Award. The Award is given to a physician each year who emulates Gantz’s clinical acumen, his passion for medicine, and his empathy for people with CFS/FMD. Congratulations Ros!

Dr Lynette Hodges spoke to our group on her fascinating research at our Wellington Support Group Meeting in June 2016

Dr Lynette Hodges, Lecturer in Exercise and Sport at the Massey University School of Exercise and Sport has spoke to our Wellington Support Group meeting in June on the results of her study assessing responses to repeated exercise testing in individuals with ME/CFS, Multiple Sclerosis and healthy age matched controls.

Living Well Counselling Centre
The Venue: Anvil House

The design of Dr Hodges’ study included physiological exercise testing validated by Staci Stevens in California and blood analysis to be used in research by Professor Warren Tate (Otago University) as he searches for a biomarker. Tests also included an arterial stiffness assessment, blood samples, brief neuropsychological tests, exercise testing lasting for approximately 12 minutes on a cycle ergometer and an exercise recovery questionnaire. All these tests have been used safely with people with ME/CFS in the past. Dr Ros Vallings, Staci Stevens, Dr Don Baken (also of Massey University) and Professor Warren Tate were all involved in the design of the study. It has been an exciting opportunity for individuals with ME/CFS to participate in a cutting edge piece of research within New Zealand. It will be an informative presentation.

Michael Turner’s not lazy: he’s just been ‘tired my whole life’

 JOEL MAXWELL – Dominion Post 14 May 2016

Michael Turner, with dog Softy, now studies from home after a diagnosis of fibromyalgia.

 

Michael Turner, 18, has been tired his entire life: even sleep is exhausting. Just don’t tell him he’s lazy.

Each day at home, before he starts his lessons, he does gentle exercises such as kung fu stretches to help beat the “heavy gravity, heavy pain” bearing down on his body.

Turner has become the young face of chronic fatigue, speaking out on Friday to help people understand why he’s not just a lazy teen, and to help other teens with his condition.

The pain kicked in through his body from the age of 10.

“I knew something was up, and that’s when doctors did many tests. All the tests known to mankind basically.”

The diagnosis was eventually fibromyalgia, a disorder that causes pain in muscles and around joints, exhaustion and concentration problems.

Michael Turner, with dog Softy, now studies from home after a diagnosis of fibromyalgia.

“I do sleep a lot, but unfortunately that sleep is not a deep sleep, so I still get tired from that.”

Last year he stopped studying at school, where his condition was not understood. He said school life pushed him so hard that he couldn’t cope with the pain and exhaustion.

He started learning from home on the Kapiti Coast, through correspondence school, which was more flexible.

On a normal school day he’ll get up around nine, have breakfast and then gradually get into his school work. He’s leaning towards a career in IT or web development.

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“Unfortunately when you talk [to people] about the problem, they do believe you, it’s just they don’t take it seriously.”

People with the disorder might seem lazy, he said, but that was not because they wanted to be.

“If you had the same condition you would be taking it easy, because of the pain. We’re listening to our bodies, instead of breaking them.”

Turner said he wanted to help other young people with a similar diagnosis connect with support groups like WellMe in the region.

Dad Darryl Turner said the process of gaining a diagnosis, which took years, was a “real journey” for their family.

He, mum Gundy Turner and their son had to use teamwork to get through the challenge.

“It’s very tough to see a child in pain, and with fatigue issues all the time. Waking up tired and foggy.”

Sandra Forsyth, vice-chairwoman ofWellMe, said fibromyalgia was one of a group of overlapping auto-immune disorders including chronic fatigue syndrome, which was now called ME/CFS.

“Chronic fatigue is not just being tired but absolutely bone-numbingly exhausted. For those who run or swim or train vigorously it is akin to that feeling of lactic buildup and exhaustion that follows a huge training session.”

New Zealand expert Rosamund Vallings said ME/CFS was usually triggered by viral illnesses such as the flu or glandular fever.

That set off abnormalities in the immune system, which produced “a whole lot of chemicals and hormones which cause all the symptoms, including extreme fatigue”.

Chronic fatigue was “a big issue” for young people, she said, with some data suggesting as many as one in 100 were affected after catching common teen disease glandular fever.

“The rate generally for the population at large is four per thousand … but it is definitely more common in young people.”

BONE TIRED

Sandra Forsyth said most people found chronic fatigue-inducing diseases rendered them invisible to friends and the wider community, “as they lack the energy to participate in everyday life”.

“This social isolation is very real and support can be hard to obtain.”

WellMe, has branches throughout the Wellington region.
– Stuff

If you, or your child has  Fibromyalgia or ME/Chronic Fatigue Syndrome and would like to speak with one of our Community Support Coordinators, call free:

0800 632 847 (Claire – Wellington Region)

0800 600 113 (Judy – Horowhenua)

Donate to WellMe and support  the 2000 + people living in the Wellington/Horowhenua Region with ME/CFS & Fibromyalgia.

Account name: Wellington Region ME/CFS Support Group Group Inc

Account number: 03-0521-0243307-00