Annual General Meeting 2016: Wellington Region ME/CFS Support Group Inc.

To be held on: Tuesday 6th September 2016 

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

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 AGENDA      

  1. Apologies from Members
  2. Confirmation of the Minutes of the AGM held on 1 September 2015
  3. Chair’s Report
  4. Marketing Strategists Report
  5. Approve the audited financial statements for the period ended 30 June 2016
  6. Ratification of Annual Subscription Fees
  7. Election of Executive Committee
  8. Election of Office Barers :
  9. Chair b)  Treasurer  c)  Secretary
  10. Appointment of Auditor
  11. Proposed amendments to the Constitution
  12. General Business
  13. Close of Meeting.

 We will break for afternoon tea Followed by Guest Speaker: 

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

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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.

Nominations for the Executive Committee

Your Vote is Important: Any individual member shall be eligible for election to the Executive.

Each financial member present, whether individual, family or organisational, shall be entitled to one vote. All members will be sent a list of nominees by email or post. If you do not receive the nominee list, please contact the secretary below.

If you are unable to attend the meeting, you are encouraged to provide a written vote by proxy. This may be done by email or post but must be received by the Secretary by 12.00 pm on Friday 2nd September 2016.

Post to:  The Secretary                                         Email to:  information@wellme.org.nz
WellMe
P.O. Box 13-029, Johnsonville,
Wellington 6440

Dr Lynette Hodges to report on her fascinating research at next Anvil House meeting

Date: Tuesday, 7 June

 Venue: Level 1, Anvil House, Wakefield Street, Wellington – there is a public carpark directly across the road
 Time: 12.30 set – Dr Hodges will speak from 1 pm to 2pm
Great news: Dr Lynette Hodges, Lecturer in Exercise and Sport at the Massey University School of Exercise and Sport has agreed to talk to our Wellington Support Group meeting on Tuesday, 7 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

May International Awareness Week: Dr Marion Leighton to speak on “Sugar and its impact on our bodies” Monday evening 9th May at 6:30pm, St Johns in the City, cnr of Willis St and Dixon St, Wellington

For May International Awareness week we pleased to be hosting a public seminar with guest speaker: Dr Marion Leighton, Consultant Physician, Internal Medicine MBBS, MRCP, FRACP

Dr Leighton will be speaking on  “sugar and its impact on the body”.

Dr Leighton is a Specialist Physician meaning she is an expert in diagnosing conditions and managing chronic and complex medical problems.  Her practice involves making a diagnosis and advising on treatments. WellMe members will remember her fascinating overview of ME/CFS at our Support Group Meeting late last year. Dr Leighton has agreed to return to speak about sugar. This time, she will be giving an evening seminar.

The meeting is open to the general public. There will be a door charge to cover the cost of the venue and to  contribute to our fundraising for our crucial Community Support Coordinator service.

  • $5 general public
  • gold coin donation for WellMe members

Dr Leighton has practiced as a Consultant Physician at Wellington Hospital since 2007 and taken leadership roles in clinical governance, laboratory testing and the development of clinical IT systems. She has worked in a variety of New Zealand and Australian Hospitals and as a result has a breadth of knowledge and experience of the health systems across Australasia. She works in private practice in Wellington and as a consultant at Wellington Hospital and the Mary Potter Hospice.

Dr Leighton graduated from medical school in Newcastle-on-Tyne in the UK in 1998 and gained her MRCP (Edinburgh) before moving to New Zealand. She completed her advanced training here and became a Fellow of the Royal Australasian College of Physicians (RACP). She completed a Post-Graduate Diploma in Clinical Education at Auckland University and was an Intern Supervisor for the Medical Council of New Zealand.

Doors will open at 6:00pm.

 

NEXT LOWER HUTT WELLME SUPPORT GROUP MEETING TUES 12 April 2016 1pm – 2.30pm

Ground Floor, Room One, Russell Keown House, formerly Apex House (three storey building on corner of Queens Drive and Laings Road).

Merav Reid (Medicinal Food Specialist) will be speaking at this month’s meeting. Merav suffered from ME/CFS for many years but manages life very well now and she’s going to talk about how she got to this place. Merav has 35 years research into the biochemistry (Pharmacognosie) and botany of quality Life Healing Food; a Pharmaceutical Dispensary Qualification, Charge Nursing experience; Advanced Massage training. She works alongside results focused, quality medical and science based practitioners.

Come along and share your tips and coping mechanisms. Family and non-members are welcome to join in.

Tea/Coffee/Herbal teas and light gluten free refreshments will be available. A reminder that meetings are ‘fragrance free’ and for you to come and go according to your needs.

If you are not a member and you would like to come along to a meeting, please ring Claire  on 0800 632 847

The venue is one block south of the Queensgate bus stop which is the end of the line for ‘The Flyer’ airport bus. On opposite corners are Rebel Sports & Briscoe’s and the Civic Gardens adjunct to Hutt City Council buildings currently under reconstruction.
There is all day off-street parking to the left of council building, opposite the Dowse Museum. Cost is $1 per hour. Parking on the street is $1.50 – $2 per hour for a maximum of 2hours. There is also a car parking building on Queens Drive.

Warm wishes and I look forward to seeing you there – Claire Laurenson

Next Kapiti Support Group Meeting, Wednesday 20 April, Waimea Cafe, Waikanae: 11.00 – 12:30pm.

WellMe’s next Kapiti Support Group meeting is Wednesday 20 April 2016: 11:00 – 12.30pm, upstairs at the Waimea Cafe, 1 Waimea Rd, Waikanae Beach

Come along and share your tips and coping mechanisms. Family and non-members are welcome to join in. The first hour will be a facilitated discussion lead by Claire, our Community Support Coordinator. The final half hour is time for social mingling, or having a private chat with Claire if you wish.

The friendly staff are familiar with our group meetings and the needs of our members. Please purchase your beverages when entering the cafe. The staff will deliver to our table. There is no pressure to do so, but if you wish to purchase lunch, please order from the front counter and staff will deliver food at approximately 12:00pm.

If you are not a member and you would like to come along to a meeting, please ring Claire  on 0800 632 847

We hope to see you all there.