Massey University is looking to recruit volunteers

Dr Lynette Hodges from The School of Sport and Exercise at Massey University is looking to recruit volunteers with ME/CFS

INTRODUCTION TO REPEATED EXERCISE STUDY

Dr Lynette Hodges from the School of Sport and Exercise at Massey University is looking to recruit volunteers with Myalgic Encephalopathy/Chronic Fatigue Syndrome. The study is assessing responses to repeated exercise testing in individuals with ME/CFS, Multiple Sclerosis and healthy age matched controls. The design of the study includes 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 will include an arterial stiffness assessment, providing blood samples, brief neuropsychological tests, exercise testing which will last 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 and Professor Warren Tate have all been involved in the design of the study. It is an exciting opportunity for individuals with ME/CFS to take part in a cutting edge piece of research within New Zealand, which will hopefully answer some of the many unanswered questions about the unique nature of the fatigue. When the results have been analysed participants will be given their individual results if they request these. People interested in participating in the study will be asked to complete the DePaul symptom questionnaire developed by Professor Leonard Jason and then, dependent on their results, will be invited to complete the series of tests at Massey University, Palmerston North campus. More information about the study can be found at the following link.

Massey University Information

ANZMES is supporting Professor Warren Tates Research group that is based in the University of Otago, Biochemistry Department.

TATE GROUP RESEARCH SUMMARY:
Diagnostic Test
• Our goal is to develop a diagnostic blood test for myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS).
• There is no specific diagnostic blood test or effective treatment currently available
• This highlights the urgent need to find specific biomarkers to differentiate ME/CFS from other treatable disorders involving fatigue and to expedite the search for specific therapies.
• For development of a simple and effective blood diagnostic test we are targeting the antiviral immune pathway that is chronically activated in ME/CFS patients.
• The aim of our work is to create a simple informative immunological diagnostic test for ME/CFS.
• a pilot study with 10 ME/CFS patients and 10 matched controls is planned, and then with a larger study of >30 patients.
• If the targeted molecules prove to be successful biomarkers the assay would be developed into an ELISA format suitable for use in diagnostic laboratories.

Therapeutic targets
• We aim to analyse thousands of molecules in the plasma and in the white blood (immune) cells of our recruited patients to determine which molecular pathways in the body are affected
• The human genome activity of patients is to be assessed to look for the presence of new and known viruses compared with age and gender matched controls
• It is hoped that this will determine whether all ME/CFS patients have the same ‘signature’ of disturbed pathways or whether there are subtypes of the illness with different disturbances
• It is planned to follow recruited patients through relapse and recovery to understand what molecular pathways trigger the relapse
• This analysis will reveal more specific biomarkers for ME that can be used for diagnosis of the illness
• Ultimately we hope it is possible to create a diagnostic plate for ME/CFS that distinguishes it from other hard to diagnose chronic syndromes that have remarkably similar symptoms like fatigue, gastrointestinal upset, -for example, irritable bowel syndrome, endometriosis
• Identifying disturbed molecular pathways has the potential to highlight therapeutic targets so patient support to manage the illness might be enhanced

BACKGROUND:New Zealand has an estimated 20,000 people affected by myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), with a significant estimated economic cost of $30,000 – $40,000/year/affected family. Currently, patients are supported by the Associated NZ ME Society (ANZMES),and by individual support groups throughout New Zealand like MEISS in Otago and Southland. Medical practitioners find diagnosis and management of the syndrome challenging. Auckland-based GP and collaborator, Dr Rosamund Vallings, has managed many patients with this syndrome for over 20 years and has seen > 5000 ME/CFS sufferers in her practice. She was part of an international team that established new clinical criteria for ME/CFS (ME International Consensus Criteria)in 2011.These point out that the underlying pathophysiology of ME is so complex that previously some patients with other separately treatable conditions such as anaemia, hemochromatosis, diabetes, cancers, HIV/AIDS, and vitamin B12 deficiency have been misdiagnosed and included in the ME/CFS cohort. A 32 page booklet has now been produced by the international IACFS/ME organization to aid diagnosis for GPs. Dr Vallings has published a comprehensive book on the syndrome in September 2012.Aimed at both patients and GPs,it outlines the abnormalities in many body systems,additional to the well-recognized neurological and immune dysfunction, and emphasizes strategies to manage the illness in the absence of any diagnostic test or effective therapies. A recent International ME Research Collaboration conference emphasized as a priority the need for developing and validating biomarkers specific for ME to help in an accurate diagnosis.

Public Lecture

A PUBLIC LECTURE IS TO BE HELD AT THE

DUNEDIN PUBLIC HOSPITAL

Barnett Lecture Theatre

Guest Speaker – Dr Kathy Rowe

Friday the 7th of November at 1.30 pm

An Overview of ME/CFS Management

and the latest International Research.

 

Australian Paediatrician Kathy Rowe
Australian Paediatrician Kathy Rowe

ANZMES AGM

ANZMES
ANNUAL GENERAL MEETING

Australian Paediatrician Kathy Rowe
Australian Paediatrician Kathy Rowe

All Welcome.
1pm on the 2nd of November 2014
at the Disability Resource Centre
14 Erson Ave Royal Oak Auckland
– plenty of parking
Followed by our Guest Speaker
Australian Paediatrician Dr Kathy Rowe
Afternoon Tea will follow
Dr Vallings will introduce guest speaker Paediatrician Dr Kathy Rowe – a researcher who’s achieved outstanding international recognition for her work in adolescent health. Dr Rowe has been helping children and their families cope with ME for over thirty years. Kathy was instrumental in developing strategies to assist thousands of children in Australia to achieve their true potential while dealing with the debilitating effects of ME. Another area of interest for Kathy is working with children/young people who have food intolerance’s.
A question and answer time will be held after Dr Rowe’s speech with Dr Vallings also available to answer questions.

M.E. and Mobility Scooters – Featured on Campbell Live

Most of us take a trip to the supermarket for granted, but if you have mobility issues modern supermarkets can prove problematic.

For a start they can be huge and sometimes just picking up the basics can be exhausting. Often mobility scooters are too large and powerful to get down the aisles without troubling other shoppers.

So what can you do?

In Tauranga, they think they have the solution, so Ali Ikram visited there to put it to the test

http://www.3news.co.nz/tvshows/campbelllive/mobility-scooters-hit-the-supermarket-2014090920

Podcast lecture that Dr Ros Vallings made at Dunedin meeting on 22nd September.

Dr Ros Valling’s lecture on 22nd September, 2014.

Ros2
Doctor Ros Vallings lecturing.

 

Thanks to Ros Vallings for coming to Dunedin and lecturing medical students. The following podcast was made for ongoing education for medical students.

Doctor Ros Vallings at the Public Meeting in Dunedin Colquoun Theatre 22 Sept, 2014.

Ros trip
Dr Vallings being introduced at the meeting.
Ros2
Dr Ros Vallings lecturing to the crowd.
Debbie
Debbie, ANZMES manager with resources ready to give out.

Doctor Ros Vallings lectured at the Colquhoun Theater in Dunedin on the 22nd September, 2014 to make a Podcast for Medical Students education at a public meeting.
Resources were given to Doctors and Medical Students who attended plus members of the public. There were over a large crowd who turned up on a cold snowy day to listen to the latest information from Ros.

ME/CFS Public Lecture in Dunedin, 22nd September.

 

Dr Ros Vallings - New Zealand Order of Merit
Dr Ros Vallings guest speaker.


ME/CFS PUBLIC LECTURE

Guest Speaker- Dr Ros Vallings

Dr Ros Vallings is going to give an overview of ME/CFS,  Management and the latest International Research.


To be held on Monday the 22nd September
at 12 Noon till 12.55 pm

Colquhoun Lecture Theatre

Dunedin Hospital

 

For more information contact:(03) 4716203 or (03) 4716169 or info@anzmes.org.nz

Sponsored by MEISS  and ANZMES

Responses from the Political Parties

Responses from Main parties to ANZMES query as to what they would do for those with ME/CFS.

Maori Party’s response to enquiry from ANZMES regarding Ministry of Health response to Health Select Committee recommendations on policy re ME/CFS         

Maori Party Reply

 

  The Green  Party’s response to the inquiry from ANZMES regarding their  Health response to Health Select Committee recommendations on policy     
Green Party is concerned that ANZMES reports there appears to have Committee’s recommendations in response to the petition of Wendy Matthews and others.
If the Green Party is part of the Government following the election we will endeavour to ensure that the Ministry of Health prioritises the implementation of the Health Select Committee’s recommendations, both with regard to implementing best practice guidelines for caring for CFS/ME sufferers and with regard to support for the research into CFS/ME being conducted by the University of Otago team headed by Professor Warren Tate.
Regardless of whether the Greens are in Government following the election, we will be happy to engage with ANZMES following the election to discuss how we can best assist in getting the Health Select Committee’s recommendations implemented in as timely a manner as possible.
Authorised by Kevin Hague MP, Parliament Buildings, Wellington

National Party response to the inquiry from ANZAMES regarding their  Health response to Health Select Committee recommendations on policy re CFS/ME
The National Party appreciates the daily and severe challenges faced by sufferers of Chronic Fatigue Syndrome (CFS), which is classified as a chronic health condition.
It is because of our appreciation of the importance of good health and the importance of access to the best possible health services for all New Zealanders that over the last six years spending on public health services has been our top priority. In the last six years, as a result of the Global Financial Crisis reducing Government incomes, many advanced nations have had to freeze or even reduce their spending on social services, including health services.
In contrast, in New Zealand the National Government has taken a more measured, long term approach which has involved maintaining or increasing spending levels on social services funded by borrowing over the last six years, while returning New Zealand to growth and a balanced budget.
While formal responsibility for funding long-term support services for people with chronic health conditions resests with DHBs, the Ministry of Social Development (MSD) provides benefits and allowances that this group can apply for. We understand several hundred people with CFS/ME or fibromyalgia are currently receiving sickness benefit.
If required, people with CFS can access long-term support services through DHBs . The Ministry has written to the Royal NZ College of General Practitioners and the Royal Australasian College of Physicians inviting them to develop CFS guidelines. There is an opportunity for NZ to adapt guidelines on the care of people with CFS developed in the UK by NICE. The NICE guidelines are the best available evidence-based advice for the management of CFS/ME.
Research Research into these areas is being undertaken worldwide, and New Zealand is making its modest contribution, with a small dedicated research programme at the University of Otago, under Professor Warren Tate. There are other small pockets of research elsewhere around the country. Owing to a small health research base and limited funds, New Zealand makes a modest contribution in this area of research. The Health Research Council’s approach is largely
based on responsive research grant funding: investigators and research teams are
encouraged to apply for research grants, which are then awarded on a competitive basis.

The research teams in New Zealand who are interested in expanding their research
activities in this area should therefore be encouraged to submit research grant
applications to the Health Research Council.

Education.
National agrees with better education and awareness of the needs of CFS/ME suffering.
The Royal New Zealand College of General Practitioners is responsible for the training
and continuing professional development of GPs. The College should ensure that GPs
are given up-to-date training and information about how to diagnose and manage people
with long term conditions which, along with a number of other conditions, include
CFS/ME and fibromyalgia.
Finally, I would like to advise of a positive new approach to managing pain at an integrated primary care level that a re-elected National Government will lead.

A re-elected National government will invest $50 million extra of new money over the next three years in a plan to help New Zealanders live free from bone, muscle and joint pain and provide thousands more people with elective surgery.

Experts tell me with earlier intervention we could improve the quality of life for many people suffering from what’s termed musculoskeletal pain, such as osteoarthritis.

We will invest $6 million to create primary care based early intervention teams that will identify patients who are likely to suffer from bone, muscle & joint conditions in the future and support them to make changes to help prevent patients heading down the path towards surgery.

The teams will work with a range of community health services such as GPs, dieticians and physiotherapists and will be coordinated through general practice. There will also be close links with hospital services such as rheumatology, orthopaedic and pain services.

They will provide nutrition and lifestyle advice, assist with pain management and provide education so patients can better manage their condition themselves.
This approach will enable some patients to be treated early enough to maintain independence. Others however will require surgery.

Reducing pain, increasing patient mobility and independence, and increasing elective surgery is a priority for this National-led Government.
Summary. Over the next three years, National will build on the positive progress made in health services, with a particular focus on:
– continuing to invest more in public health services as this can be afforded,
– bringing more health care services closer to home,
– place even more emphasis on primary care and prevention,
– while continuing to deliver more and better hospital services.
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The Labour  Party’s response to the inquiry from ANZMES regarding their  Health response to Health Select Committee recommendations on policy
Labour introduced the Care Plus programme, which subsidises four GP visits and the implementation of a wellness plan for people with long-term health conditions including arthritis or other serious health needs but currently stringent conditions must be met before people are eligible.  
Labour believes that many more New Zealanders with serious long-term health conditions would benefit from the extra care and cost savings offered by Care Plus, so we are expanding it.  Labour will ensure all four GP visits each year in the Care Plus programme are free.  In addition to extending and improving Care Plus, Labour will remove the cost people with long-term health conditions endure due to their high use of prescription medicines. Labour will make prescriptions free for all people with long-term health conditions in the Care Plus programme, regardless of age.  We will also include testing for uric acid in vulnerable populations.

ANZMES AGM 2nd November 2014

Australian Paediatrician Kathy Rowe
Australian Paediatrician Kathy Rowe

ANZMES AGM will be held on the 2nd November at 1pm at the CCS resource Centre in Royal Oak. Guest Speaker will be Dr Kathy Rowe a top Australian Paediatrician. After the AGM Kathy will be visiting many New Zealand main centres to lecture to paediatricians and Medical professionals.

Over the past 44 years, Kathy Rowe has achieved outstanding national and international recognition for her work in adolescent health. She is widely acclaimed as a caring, dedicated consultant physician, in the Centre for Adolescent Health at Melbourne’s Royal Children’s Hospital. She has also held academic appointments in the University of Melbourne’s Department of Paediatrics, involved in teaching, research and clinical work.

She is an expert in the area of chronic fatigue syndrome, having worked tirelessly and championed its cause when it was not fashionable. Prof Leonard Jason referred to her work as “the most elegant and important in the field” and stated that “the entire field has benefited from the precision and rigor of her methods.”She worked hard on the international committee establishing the paediatric case definition and diagnostic criteria for CFS/ME (2006).

ME Day

ME/CFS day is on the 12th of May.
This date was picked as it was the anniversary of Florence Nightingales Birthday.
Florence was thought to have had ME/CFS in the later  years of her life.
To celebrate ME day ANZMES has sent resources including latest Physicians booklets
Childrens Booklets and posters etc to all the Support Group through NZ.

An ANZMES survey of how ME/CFS impacts on sufferers has been compiled and thanks to Don Baken for his help with this. Massey University has helped with a media release of the survey.
Dr Ros Vallings is speaking on Monday Morning on TV about ME/CFS and the ANZMES survey.
Articles are in local newspapers that have been put in by support groups up and down NZ.
Here are some articles from the ME day release.

Phoenix Rising

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