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BBRRAAIINN SSTTOORRMM

-- WWeellll iinnggttoonn RReeggiioonn MMEE // CCFFSS SSuuppppoorrtt GGrroouupp IInncc --

PO Box 14-541

Kilbirnie, 6241 Wellington (04) 977 5654

brainstorm.wgtn@gmail.com 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

johanna@teatimeforthesoul.co.nz

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.

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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

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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

Brainstorm.wgtn@gmail.com

Chairperson

Martin Buck

569 8444 martinbuck@clear.net.nz

Secretary

Shirley Fernyhough

235 5101 fernyhough@xtra.co.nz

Treasurer Dick Fernyhough

235 5101 fernyhough@xtra.co.nz

Webmaster James Eaton 934 1459

cfs@eaton.net.nz

Membership Secretary Jackie Bell 389 6655

jackieb@globe.net.nz

Telephone Tree Co-ordinator

Rosanne Dawson

386 1830

Parents Support Group Convenor

Nicola Kane

237 0810

nicola@love2web.co.nz

The Committee would like to thank the following sponsors who help us to provide our services