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BBRRAAIINN SSTTOORRMM
-- WWeellll iinnggttoonn RReeggiioonn MMEE // CCFFSS SSuuppppoorrtt GGrroouupp IInncc --
PO Box 14-541
Kilbirnie, 6241 Wellington (04) 977 5654
[email protected] www.wellmecfs.wordpress.com
OCTOBER 2012
CONTENTSCONTENTSCONTENTSCONTENTS
UPUPUPUPCOMING MEETINGSCOMING MEETINGSCOMING MEETINGSCOMING MEETINGS
Petition presentation at The
Beehive p. 2
Ros Vallings in Wellington p. 3
Links to interviews p. 4
Useful tips p. 5
AGM report-back p.6
Women and fibromyalgia p. 8
Holistic acupuncture p.10
New committee contacts p.12
Our November meeting will take
place on Monday 5th November in
Lyall Bay (St Jude’s church hall, 68
Freyberg St) (from 12.30-2.30pm).
Our last meeting for the year will be
in Johnsonville on Monday 3rd
December from 12.30. We will have
a pot-luck lunch, so if you are able
to, please bring along something to
share.
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ROS VALLINGS & WENDYROS VALLINGS & WENDYROS VALLINGS & WENDYROS VALLINGS & WENDY MA MA MA MATTHEWS AT THE BEEHIVTTHEWS AT THE BEEHIVTTHEWS AT THE BEEHIVTTHEWS AT THE BEEHIVEEEE
On Wednesday 19 th September, Dr Ros Vallings and Wendy Matthews met
with the Parliamentary Health Select Committee to present the petition
that approximately 6000 people signed.
This petition was to ask the House of Representatives to support the
following outcomes for sufferers of ME/CFS and Fibromyalgia:
1. To establ ish dedicated research, assessment, treatment and respite care facil it ies.
2. To provide support and funding for patients and carers.
3. To promote education for both health professionals and the public, thereby
rectifying the misunderstanding that many with these il lnesses are experiencing,
due to the lack of appropriate information regarding the cause and treatment of
these il lnesses.
4. To rectify the misconception that these are psychological i l lnesses and to
acknowledge and validate, the enormous physical and emotional suffering of those
affl icted with them.
Wendy and Ros presented the petition
to National MP for Hunua, Paul
Hutchinson and a Committee of 10
people who were really receptive and
interested in learning more. They will
be reporting back to the Minister of
Health.
If anyone has any further thoughts/
suggestions they would like the
Committee to consider, you can email
Remember, it is the squeaky wheel that gets the oil!!
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TALKING TO OUR GROUPTALKING TO OUR GROUPTALKING TO OUR GROUPTALKING TO OUR GROUP It was a very busy day for Ros and Wendy - after their meeting with the
Select Committee, they came to talk to our group!
The first thing they announced was the final confirmation that the much-
talked-about XMRV results definitely could not be replicated. Although the
link between XMRV and ME/CFS has been queried for quite some time, it
was not until the largest study on the topic – by Ian Lipkin of Columbia
University – was wrapped up that this theory could finally be laid to rest.
It has been assumed that the initial results were in fact due to a lab
contaminant. While this is ultimately a disappointing outcome, it has, at
least, sparked international interest and research. Locally, Professor
Warren Tate in Dunedin has built a brand-new research laboratory
specifically for ME research.
Dr Vallings went on to tell us about a conference she recently attended in
London called “Invest in ME” (June 2012). She ran us through some of
the latest research being undertaken, including the importance of a multi-
disciplinary approach, pain in ME/CFS, neuro-inflammation, the search for
a bio-marker and the possibil ity of ME/CFS being an auto-immune
condition.
Our members then had a chance to ask questions, so all-in-all, it was a
very successful get-together, and we would like to thank Ros and Wendy
for fitting us in to their busy schedule.
For those who are interested in more detailed information from the London
conference, please contact Sandra, who can send you a summary of the
talks.
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LILILILINKS TO INTERVIEWSNKS TO INTERVIEWSNKS TO INTERVIEWSNKS TO INTERVIEWS For those of you who missed Dr. Ros Vallings’ appearance on TV1's 'Good Morning' as well as on the Radio NZ National's 'Saturday Morning.' …
She appears on Good Morning here: http://tvnz.co.nz/good-
morning/tuesday-11-september-5071311, and; on Saturday Morning here:
http://www.radionz.co.nz/national/programmes/saturday/audio/2531261/r
osamund-vallings-cfs
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USEFULUSEFULUSEFULUSEFUL TIPS TIPS TIPS TIPS
One of our members, Diane Nicol, kindly sent in these tips to share with you all. They are useful for those on a limited budget, and especially if you have extra storage room… During the summer, when you’re saving on your heating costs, try and stock up on goods for the winter months i.e. paper towels, cleansers, toilet paper etc and anything else you can think of that would useful to tide you over. As we cannot always shop whenever we need things, I have found that it is possible to store bananas in the fridge, by wrapping them in a paper
towel, and placing in a sealed plastic bag. The skin may discolour, but the interior remains ok for up to three weeks. Bananas that are past their best can also be frozen, and then mashed and used in baking muffins or banana bread.
Storage of berry fruit can be lengthened a little by lining the containers with a tissue. All stored veggies can be helped by wrapping them in paper towels and plastic rather than just placing them in the 'crisper'. So that all this paper is not wasted, I place the used pieces in a medium-sized box and once dried out, use them for mopping up spills of which there are a few more these days. (Aging process, coupled with ME!) If one is prone to headaches, before taking any medication, try rubbing the forehead with, preferably the Homebrand Chest Rub (much cheaper than Vicks and a little more effective) or Vicks. I have found that by using this method it has worked amazingly well. The fumes may make the eyes smart a little, but that wears off very quickly. If one accidentally gets it in one's eye(s) after it has been on for a while, there is no stinging whatsoever. For itchy eyes - gently pat on a used damp teabag. Very effective and also useful for cleaning the lens of glasses, and then dried off afterwards.
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AGM REPORTAGM REPORTAGM REPORTAGM REPORT----BACKBACKBACKBACK
Thank you to everyone who attended the AGM, and stayed for the
interesting talk by Jake Munz, holistic acupuncturist, afterwards. Some
information from Jake appears on Page 10.
There have been a few changes in our Committee for the upcoming year,
and the details of our new (and old) members appear on the back page.
CHAIRPERSON’S REPORT
First, I'd like to congratulate the Committee and Coordinator for another
year of progress and development. We have had a number of inspirational
guest speakers, and our meetings have been fun to attend.
There are a couple of issues that will affect where we go from here.
The present Government intends to recreate the benefit system. Part of
that process is transferring Invalids beneficiaries en masse onto the
Supported Living payment, sometime in July next year. From what I have
read, this will happen automatically, which will probably mean there will
be some hiccups. We will have to be alert to the problems created for our
members during this time. Also, everything will have to fall into line for
this to happen. Sadly, the record for the current Parliamentary term does
not show a happy record for the passage of intended legislation.
Secondly, there have been some changes in personal circumstance for our
wonderful Co-ordinator, Sandra. She has taken on another part time job,
which limits the hours she can devote to our particular needs. This will
not reduce her effectiveness, nor the extent to which we rely on her to
keep us going. There will however, be some effect on how she can help
members deal with issues with Work and Income and doctors. It may be
necessary for Committee members to be able to help out in this area if at
all possible, depending on their availability, health etc.
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Cost will also be an issue, and expenses would be reimbursed. Sandra
would still coordinate any of these activities.
In the words of JFK, "Ask not what my country can do for me, ask what I
can do for my country". Let's just see how we can manage this situation,
it's very important that we encourage especially new members, and people
transferring in to our area.
With the importance of science in determining progress in the field of ME
and FM, it may seem we can do little on our own.
We have many decades of collective experience and wisdom to draw upon
as a group, every opinion is valuable and appreciated, and we really enjoy
your attendance at our meetings.
Let's hope we go on to greater things in the coming year, overcoming
difficulties and finding those victories, however small, which make life
better.
Martin Buck, Chair
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WOMEN AND FIBROMYALGWOMEN AND FIBROMYALGWOMEN AND FIBROMYALGWOMEN AND FIBROMYALGIAIAIAIA
TORONTO, Sept. 25, 2012 – Women suffering from fibromyalgia
who exhibit perfectionist traits tend to have poorer health than
their non-perfectionist peers, according to new research out of
York University.
The study, published by the Journal of Psychosomatic Research, is based
on a sampling of 489 women diagnosed with fibromyalgia, a condition that
predominantly affects women and is characterized by chronic pain and
fatigue. It is the first large-scale investigation of fibromyalgia and
perfectionism, and illustrates the toll perfectionism can take on those
living with chronic illness.
Participants answered questionnaires measuring personality and
perfectionist traits, along with overall health. Researchers found that
those who reported either self-oriented or socially prescribed perfectionist
tendencies (those who put impossibly high standards on themselves, or
feel pressure to be perfect from those around them) admitted to poorer
health than non-perfectionists. They reported more stress, more difficulty
performing daily tasks and higher levels of pain.
“Chronic illness is difficult enough, but even more so for perfectionists,”
says Gordon Flett, a psychology professor in York University’s Faculty of
Health and Canada Research Chair in Personality and Health. “For women
coping with fibromyalgia, there is often feel immense pressure to live up
to others' seemingly impossible standards and they feel frustration,
shame, and high levels of stress when they cannot meet these
expectations.”
The study also found no evidence supporting the belief that perfectionism
is more prevalent among women with fibromyalgia compared to the
general population. However, for the subsection of fibromyalgia
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sufferers who ranked high in either self-oriented or socially prescribed
perfectionism, intervention and behaviour modification are key to ensuring
they maintain their health.
“It is clear that women with fibromyalgia who are elevated in
perfectionism have greater coping difficulties,” says Flett. “They should
benefit greatly from interventions designed to enhance their coping skills
and ability to engage in appropriate self-regulation. Otherwise they will be
frustrated by their inability to strive tenaciously, and if they still go ahead
anyway, will likely exacerbate their pain experience.”
The study, “Perfectionism and health functioning in women with
fibromyalgia”, was led by York University’s Danielle Molnar, a Social
Sciences and Humanities Research Council postdoctoral fellow, working in
collaboration Professor Gordon Flett and Brock University’s Professor Stan
W. Sadava and research associate Jennifer Colautti.
Source: http://news.yorku.ca/2012/09/26/perfectionist-pressure-means-
poorer-health-for-women-with-fibromyalgia/
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HOLISTIC HOLISTIC HOLISTIC HOLISTIC ACUPUNCTUREACUPUNCTUREACUPUNCTUREACUPUNCTURE
Our guest speaker in October was Jake Munz (MNZRA, Dip Ac, BA), and he
provided us with the following information:
ME is a condition well-suited to treatment with Acupuncture. Since the
illness has such a diverse range of symptoms and presents so differently
from person to person, a holistic approach treating each individual's
underlying causes and triggers is essential. Looking for a one-size-fits-all
solution is misguided, I believe.
Symptoms are only the tip of the iceberg. Obviously we want relief, but a
lasting fix will have to address underlying disharmony. The beauty of this
approach is that when the root causes are addressed, things start to come
right in all areas – physically, mentally and emotionally - even our “spirit”
picks up again after being fatigued by chronic illness – we feel “alive”
again. As we treat the whole person at this deeper level the results can be
profound and lasting as our whole system moves back into balance and
symptoms decrease and disappear.
A Registered Acupuncturist (as opposed to a GP or a Physio who may
sometimes use needles) has many tools available to diagnose and treat at
a deep level. Acupuncture is a complete system of medicine which is
superb at treating chronic illness and we are trained to see connections
that doctors do not. For example, Small Intestine digestive issues are a
feature of many ME cases, but only an acupuncturist will realise that this
may be more than a food issue, and can extend to the sorting and
processing of ideas - leading to confusion, muddled thinking and a sense
of being overwhelmed. In extreme cases it can be hard to even
understand what other people are saying.
I personally think that acupuncture's sophisticated understanding of the
role of “stress” and emotional disturbance as a major contributing factor
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to (and result of) illness is still far in advance of Western medicine. This
is one reason why I see the results that I do in the clinic.
Ph: 021 382 855, [email protected], www.jakemunz.com
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DR DR DR DR ROS ROS ROS ROS VALLINGSVALLINGSVALLINGSVALLINGS’’’’ BOOK BOOK BOOK BOOK
Paper Plus in Porirua stocks this book for $40 (ask for Richard), but
other Paper Plus stores currently do not.
Or you can purchase your copy ($40 + $5 delivery in NZ)
by phoning (09) 624 5674 or emailing [email protected]
Our support group owns several copies of
this book, so please contact Sandra if you
wish to borrow one of them.
This newsletter is a great way of sharing information and ideas about
ME/CFS with members.
All articles and opinions are those of the authors and do not necessarily
represent those of the Wellington ME/CFS Support Group committee.
Any advice, either explicit or implied, is not intended to replace qualified
medical advice and the committee does not accept any responsibility for any
treatments undertaken by readers.
Please seek professional advice before making any changes to your
treatment.
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COMMITTEE CONTACT LICOMMITTEE CONTACT LICOMMITTEE CONTACT LICOMMITTEE CONTACT LISTSTSTST (FROM OCTOBER 1(FROM OCTOBER 1(FROM OCTOBER 1(FROM OCTOBER 1STSTSTST 2012) 2012) 2012) 2012)
Chairperson
Martin Buck
569 8444 [email protected]
Deputy Chair Catherine Kunz-Entwistle
232 4033 [email protected]
Treasurer/Secretary Dick Fernyhough
235 5101 [email protected]
Committee member
Shirley Fernyhough
235 5101 [email protected]
Committee member
Linley Braaksma 232 2577
Committee member
Jay Vivian
972 7090 [email protected]
Committee member
Hayley Chi lds
021 077 2088 [email protected]
Webmaster James Eaton 934 1459
Telephone Tree
Co-ordinator
Rosanne Dawson
386 1830
Co-ordinator Sandra Lal lemand
977 5654
The Committee would like to thank the following sponsors who help us to provide our services
