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1
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
JUNE-JULY 2012
CONTENTSCONTENTSCONTENTSCONTENTS
UPCOMUPCOMUPCOMUPCOMING MEETINGSING MEETINGSING MEETINGSING MEETINGS
Fundraising Dance and
Show (Sat. August 4th) p. 2
ME Awareness Day p. 3
Condolences p. 4
Increase in membership
fees p. 5
Mindfood article p. 6
NZ Lottery Grants p. 9
Recipe: Minestrone soup p. 10
Visual problems p. 11
Committee contacts p. 12
Our August meeting will take place
at the Johnsonville Community
Centre on Monday 6th August
(from 12.30-2.30pm).
The September meeting will be on
Monday 3rd September in Lyall
Bay (St Jude’s church hall, 12.30)
The October meeting will be back in
Johnsonville on Monday 1st
October from 12.30, and we have a
guest speaker lined up: Jake Munz,
a holistic acupuncturist.
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FUNDRAISING BENEFIT FUNDRAISING BENEFIT FUNDRAISING BENEFIT FUNDRAISING BENEFIT ---- DANCE AND SHOW DANCE AND SHOW DANCE AND SHOW DANCE AND SHOW
All profits from this uplifting event will go to the Wellington ME/CFS
Support Group and to supporting Ella Kane, an inspiring 15-year-old who is
chronically ill with CFS and Fibromyalgia.
Details of the event
Prepare for a heartwarming evening of music by Mana blues, dancing,
supper and entertainment. The entertainment showcases award winning
dances, uplifting music and inspiring speeches. There will be a silent
auction for some of Ella Kane’s beautiful artwork and a number of raffles
with chances to win some great prizes.
Date: 4th August, 7.30pm - 12am
Location: Polish Community Centre, 257 Riddiford St, Newtown (plenty of
parking available)
Tickets: $30 (Group bookings available)
Note: BYO drinks
Tickets To book tickets please contact Johanna 027 416 5406
Donations
If you are unable to attend but would like to make
a donation you can transfer your donation into the
account below. Please contact Johanna if you
require a receipt for your donation.
CFS Fundraiser - C/O Johanna Lowe 06-0582-0249489-09 Reference - Donation
Thank you all so much for all your support. It really will make a
difference!
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INTERNATIONAL ME AWAINTERNATIONAL ME AWAINTERNATIONAL ME AWAINTERNATIONAL ME AWARENESS DAY RENESS DAY RENESS DAY RENESS DAY ---- 12TH MA12TH MA12TH MA12TH MAYYYY
We held our first-ever Street Appeal on Saturday
May 12 th, in 4 locations: Cuba Mall, Westfield-
Queensgate mall in Lower Hutt, the Whitby Mall,
and Countdown in Porirua.
Our main goal was to raise awareness, so we had
plenty of flyers and information available, as well
as blue ribbons for people to show solidarity with us.
It was sobering to hear so many stories from people who either knew
someone with ME, or were battling with it themselves. The public –
particularly those in Porirua - gave generously, and we raised $1250 to
enable us to continue our work.
Many thanks to the following people who volunteered their time on the
day: Nicola Kane, Catherine Kunz-Entwistle, Rosanne Dawson, Martin
Buck, Anita Moshenrose, Lara Bell, Shelley Parker, Linley Braaksma,
Shirley and Dick Fernyhough, Brent, Steve & Chris Jupp, Margaret & Tony
Parker, Michelle Reidy, Dave, Renee & Becky Hawthorne, Birgitt Hoen and
Mary Kenderdine.
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CONDOLENCESCONDOLENCESCONDOLENCESCONDOLENCES It is with sadness that we mark the passing of Robin Clearwater, husband
of Judith Clearwater, who is one of our founding members and a long-
standing editor of this publication. Judith is a great poet, and wrote this
wonderful poem telling us the story of their fortuitous meeting.
MY VALENTINE The true story of how we met
‘Twas the night before Valentine’s a long time ago
When a friend said that she and I dancing should go
I didn’t want to go and I wanted to say no
But somehow I said yes, so a-dancing did go
I sat at a table with my friend at the end
She arose and departed a penny to spend
Just then the dance music came to a pause
The dance was a snowball, the pause was because
Each person dancing must then ask another
A tall handsome man who was dancing thought “Bother
Most women are dancing, leftovers are few
I suppose that the one at that table will do.”
He asked me to dance and so that’s how we met
It was only by chance that asked me and yet
When the music stopped next we just danced on together
And ever since then in life’s storms and fair weather
We’ve gone on together. Yes, you can believe
This story of romance on Valentine’s eve.
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INCREASE IN INCREASE IN INCREASE IN INCREASE IN MEMBERSHIP MEMBERSHIP MEMBERSHIP MEMBERSHIP FEESFEESFEESFEES Those of you who receive our emails will be aware that the Committee
recently voted to increase our annual subscription rate. This has been set
at $10 per year for the Group’s entire existence.
There has, however, been a significant inflation of currency and the
services that we offer have also improved dramatically. In keeping with
other support groups around the country, it was decided that future subs
shall be $20 for waged and $15 for unwaged members.
This takes effect from the 1st of July 2012, which is the start of our
financial year. We believe these amounts will not be unduly burdensome
for our members, and will have the added benefit of demonstrating to our
financial backers that we are making all possible efforts to be self-
sufficient.
We realise the cost of living is constantly rising, and many of our
members are on benefits or pensions, so if you will have difficulty paying
the increased cost, please have a quiet word with Sandra. We wish to
provide the best possible value to our members.
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Be who you are and say what you feel, Be who you are and say what you feel, Be who you are and say what you feel, Be who you are and say what you feel,
because those who mind don't matter because those who mind don't matter because those who mind don't matter because those who mind don't matter
and those who matter don't mind.and those who matter don't mind.and those who matter don't mind.and those who matter don't mind.
-------- Dr Seuss Dr Seuss Dr Seuss Dr Seuss -------- ������������������������������
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CHRONIC FATIGUE SYNDCHRONIC FATIGUE SYNDCHRONIC FATIGUE SYNDCHRONIC FATIGUE SYNDROMEROMEROMEROME BY RACHEL ELDRED (MAY 2012)
Reproduced with permission from MiNDFOOD magazine.
For more stories, please go to www.mindfood.com.
MiNDFOOD speaks with Dr Richard Schloeffel about his work treating chronic and complex disorders, including diagnosing patients with chronic fatigue syndrome.
Though there is a call to distinguish between the disease myalgic
encephalomyelitis (ME) and the syndrome CFS, many with a diagnosis of
CFS do not have ME.
What is your definition of chronic fatigue syndrome (CFS)?
CFS is an umbrella term, which means every patient has a slightly
different disorder. Many patients have disorders in common, and, yes,
there are protocols for their treatment. However, there is not one protocol
for their treatment, because you are dealing with multiple manifestations
of different illnesses, which are similar but may need totally different
treatments. The response to treatment with every patient is different, too.
CFS fills many boxes. It’s not a ‘here, do this test, make this diagnosis, do
this treatment, patient gets better’, type syndrome, and because of that
we have to think in a very broad sense.
Also, CFS is not about fatigue. Fatigue is the response of the body to all
these significant disruptions in various body functions: brain, heart,
muscle, joint, gut, bladder, sleep cycle, cognitive function, autonomic
nervous function.
What is your approach to patients who have been given a diagnosis of CFS?
Because I think there are multiple conditions and multiple causes, I treat
the symptoms, but also try to understand the cause and treat the cause.
You have to be enormously careful with the treatments, and every
individual has to be treated individually.
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I’ve treated over 2500 patients with CFS, and I’m writing an 800-page
book on the disorder. I’ve tried to look at the causative agents and the
dominant features of the type of CFS the patient has. The predominance
of my patients have an infection that is active, such as Lyme disease,
which is a true, measurable infection.
Anyone who tells someone with CFS that it’s in their mind, has made a
huge diagnostic error – it’s a criminal, negligent offence against the
patient.
Do you feel someone diagnosed with CFS can dig further to find a more specific condition?
Absolutely, and I do a number of tests to diagnose all different conditions,
all giving the same symptoms, all needing different treatments.
There are tests available for every individual who has this illness, and
every individual deserves the right to be tested for the appropriate things
that their history and examination would guide the practised physician
towards selecting. Diagnostic criteria and diagnostic tests help ascertain
whether a patient has a particular form of CFS. That’s why I’m writing a
book on corrected diagnoses, as opposed to labelling them all under the
one heading.
Part of the problem is, the doctors who treat CFS have to be extremely
clever clinicians. We have to be the old diagnostic physicians. Now those
sorts of specialities are dying out. As a GP, I trained as a diagnostic
physician, so my whole passion was diagnosis, and you can’t make a
treatment unless you make a diagnosis, but others don’t have the time to
spend, like I do, on making a diagnosis.
I simply can’t do it without spending lots of time with people. It’s not a
five-minute diagnosis: “Oh, you have chronic fatigue, take this and you’ll
get better.”We need doctors trained in this, we need clinics, and we need
to have this as part of undergraduate training.
8
In your experience, can people who have been diagnosed with CFS ever fully recover from the condition?
Fifty per cent of my patients have fully recovered. I think it’s absolute
nonsense to suggest to people when they present with CFS that they don’t
recover.
About 50 per cent fully recover, about 20 per cent are significantly better,
20 per cent are still very unwell, and 10 per cent get worse. Occasionally
patients die from CFS. They die because they get metabolic failure and
heart failure. And that’s why there’s an organisation called the Alison
Hunter Foundation. Alison Hunter died in the 1990s from metabolic and
heart failure after they tried to treat her for CFS. I’ve had eight patients
die on me in the last few years … some by suicide because they couldn’t
live any longer with the illness, and definitely some, unfortunately, by the
neglect of the medical professional in understanding the complexity of
their medical condition.
What do you think needs to be done to better educate the public about CFS and how debilitating it can be?
There is a lot of unfortunate mismanagement and misdiagnosis because
it’s called CFS. People are devalued in the diagnostic process and the
treatment process because they’ve got this label that stigmatises them,
and we have got to get rid of this. CFS has nothing to do with fatigue.
Fatigue is the underlying response to all of the other dysfunctions that are
occurring in the body.
We need more good quality research with proper diagnostic criteria done
by qualified medical people who are in the field. People like me need to
publish articles, we need to publish everything we find in the patients we
are seeing, and we need to have it verified.
Most of the funding for CFS goes to the people who are looking for
psychological causes, and they treat it with graded exercise and Cognitive
Behaviour Therapy, which is wonderful if you’re in recovery, but makes no
9
difference to someone who is profoundly ill. Generally, people in Australia
will know someone with this disorder. That’s the nature of it. Every GP
has them in their practices, and every GP should know how to diagnose it.
We also need to have very good CFS organisations set up and run by
people who don’t have CFS themselves, but have the passion … with
professional workers, counsellors, and nurses to give advice. It may
include people who have recovered from CFS, but also people with some
insight into medical conditions and social justice issues, to run these
organisations, produce newsletters, raise funds … to fund doctors and
people who have clinical experience and treatments in CFS, fund research,
and try to improve the profile of CFS. And we need special clinics in
hospitals for people who are disadvantaged, on low income, and don’t
have any money.
Finally, we need to use the media. The media is the greatest way to
disseminate information. We need to be on TV, we need to be on radio.
I’m very vocal about this condition. I know a lot about it, but I don’t think
I have all the answers. We should be interviewing everybody [with
knowledge on CFS]. Let’s get more information out there.
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NZ LOTTERY GRANTSNZ LOTTERY GRANTSNZ LOTTERY GRANTSNZ LOTTERY GRANTS
We are very pleased to announce that we
have received $6,980 from the NZ Lottery
Grants Board. This will help us to cover
some of our salary, administrative, travel
and volunteer expenses for the 2012-2013
period. Thank you!
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HEARTHEARTHEARTHEARTY MINESTRONE SOUPY MINESTRONE SOUPY MINESTRONE SOUPY MINESTRONE SOUP
• 2 onions finely chopped
• 3 carrots chopped
• 3 stalks celery chopped
• 2 large potatoes chopped
• 100g green beans chopped
• 250g cabbage shredded or just chopped thinly
• 125ml olive oil (or cooking oil)
• 3 tbsp butter / margarine (45g)
• 1,25 litres water
• 3 beefstock cubes
• 2 tins peeled chopped tomatoes
• 1 tin cannellini or kidney beans
• Salt & pepper to taste
Heat oil & butter in a large pot, add onions and cook till soft. Add carrots
& potatoes and cook for 2 - 3 mins. Add the celery cabbage, water and
tomatoes, then break up the stock cubes and crumble them into the pot.
Bring to the boil and then reduce heat and let it simmer covered for 60 to
90 mins. The soup should be fairly thick at this point. If it’s not, take the
lid off and simmer for another 15 mins.
Add the kidney beans, season with salt & pepper if required, and simmer
another 15 mins.
Serve with garlic bread and parmesan.
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VISUAL FUNCTION IN MVISUAL FUNCTION IN MVISUAL FUNCTION IN MVISUAL FUNCTION IN ME/CFSE/CFSE/CFSE/CFS
People with ME/CFS frequently report problems with their vision, including
sensitivity to light and dullness of vision. Yet, there is very little formal
evidence in the scientific literature that these symptoms exist, despite the
fact they greatly affect quality of life and, moreover, can be easily
measured.
There have been a few studies researching ME-related eye problems over
the past 30 years, but because no attempts have yet been made to
quantify objectively the nature or extent of the visual symptoms, there
remains no solid empirical evidence-base to back up the patients’
individual reports of disabling visual disturbances.
Two groups in the UK - ME Research UK and the Irish ME Trust – have
provided joint funding for Dr Claire Hutchinson from University of
Leicester to assess the visual functioning of ME/CFS patients.
Based on the most-commonly reported visual and vision-related
symptoms, Dr Hutchinson’s investigations will be primarily concerned with
two main categories of visual impairment:
• heightened visual awareness, of which hypersensitivity to light and
difficulty suppressing irrelevant background visual information are the
main subjective visual symptoms;
• eye-movement problems, of which difficulty focusing on images or
tracking objects are the major subjective visual symptoms.
As well as ophthalmic examinations, patients will complete a variety of
outcome measures, including symptom severity and quality-of-life
measurements, allowing associations to be examined between clinical
status and any objectively identified visual deficits that are uncovered.
The results might surprise us all, and might also help delineate ME/CFS
from other chronic illnesses and further aid diagnosis.
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COMMITTEE COMMITTEE COMMITTEE COMMITTEE CONTACTCONTACTCONTACTCONTACT LIST LIST LIST LIST
Co-ordinator Sandra Lal lemand
977 5654
Chairperson
Martin Buck
569 8444 [email protected]
Secretary
Shirley Fernyhough
235 5101 [email protected]
Treasurer Dick Fernyhough
235 5101 [email protected]
Webmaster James Eaton 934 1459
Membership Secretary Jackie Bell 389 6655
Telephone Tree Co-ordinator
Rosanne Dawson
386 1830
Parents Support Group Convenor
Nicola Kane
237 0810
The Committee would like to thank the following sponsors who help us to provide our services