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Hi Everyone,
Isn't it amazing at this time of year? Every day there are new
flowers, trees with leaves and blossom sprouting, and everything
is growing so quickly. Hopefully it's the start of a lovely, long
summer.
Last year Action for ME encouraged members to take part in a lottery
called 'The Cause is Right'. For just £10 for a year, with
half the proceeds going to research, there is the opportunity to
win a small cash prize each month. Well, since the beginning of
this year, my father has won two prizes!! But he has decided to
donate his second winnings back to Action for ME. (Visit the Action
for ME website to find an application to take part).
Next meeting
Wednesday 16th May 7pm - 9.30pm
ME Awareness Evening
(ME Awareness week is 7th -12th May)
Bring & Buy Sale and other Awareness Activities. Everyone
welcome - families, children, carers, friends.
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Recent Meetings
Back in February, we had our first social afternoon at the Cambridge
Cancer Centre. Anne, from the centre, kindly opened up for us and
was very helpful in settling us in. She mentioned that their planning
application for a new centre at Scotsdales has finally been approved
so when it's built we've been kindly invited to move our Monday
meetings with them to their new premises. All those who attended
enjoyed the change of venue, especially the very comfortable sofas!!
We felt there was a very relaxed and peaceful atmosphere to the
centre.
April's meeting was also an enjoyable social afternoon at the Cancer
Centre.
In March we had a rather disappointing turn out to hear Andrew Entecott
from Cambridge Online speak to us about Computer adaptations. Hopefully
it wasn't the subject matter that put members off, but rather that
it was snowy and there were lots of flu bugs around at the time!
Andrew told us about various simple programmes that are available
to perform a variety of tasks, such as reading the words on the
screen for you or typing what you say (voice recognition), or just
predicting the words you are writing. He also brought along a number
of adapted keyboards - a mini one for use on a lap tray, one with
big keys, one with highly visible keys and one that was virtually
indestructible:you could spill on it and bend it, and it was fine!!
He also displayed various computer mice - ones for bigger or smaller
hands and ones that were brightly coloured.
All these items are available to try and buy through Cambridge Online
and if you're not sure what you need, they provide free one-to-one
sessions where they assess your computer needs - they'll even home
visit if necessary. Cambridge Online is a local, volunteer-based
charity situated at the Hester Adrian Centre on Hawthorn Way. Most
of the tutors have a disability, so they have a good understanding
and they aim to provide a fun, informal service.
For more information call 0845 4580192 or 01223 300407 or visit
www.cambridgeonline.org.uk
For more general computer help, Andrew suggested www.abilitynet.co.uk
for a range of factsheets. And for a free text reader, download
Thunder ScreenReader from www.screenreader.net.
Remember to make a note in your diary or on your calendar of the
following meetings:
Future Meetings Dates 2007
Monday 18th June 1.30pm - 3.30pm
Social Afternoon at Cambridge Cancer Centre
Wednesday 18th July 7pm - 9.30pm
Summer Party - Place and Time to Be Confirmed
NO MEETING IN AUGUST
Wednesday 19th September 7pm - 9.30pm
AGM and Lightning Process Talk. Speakers include an LP Practitioner
& group members who've tried LP.
The Library, including Group & Clinic
Information Leaflets, will be at meetings.
We will have BRAME blue ribbons for you to buy. There will
also be a collection tin.
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A lot of our members have Multiple Chemical Sensitivities so please
can members who attend meetings try to avoid wearing hair spray,
body spray, perfume or any strong smelling scents.
For more information about MCS visit www.chemicalfree.co.uk
New rooms
Please remember, Monday afternoon meetings are now at the Cambridge
Cancer Centre, 1A Stockwell Street, Cambridge, CB1 3ND (at the back
of Mill Road Baptist Church).
Travelling by car down Mill Road out of Cambridge, turn right immediately
after the Railway Bridge into Argyle Street. Follow this round until
you enter Stockwell Street. The car park for the centre and the
church is then on your right shortly before the church.
Wednesday night meetings will still remain at the Carers' Centre.
Committee
You may remember from the last newsletter that our co-ordinator
had resigned, so since then we've been searching for someone to
take on the roll.
Thanks to a bright idea from one of our members, we've decided to
share the role within the committee, so that each member will hold
the role for 6 months. So from February 2007 to September 2007,
Sarah Minchin is our co-ordinator - thanks Sarah for stepping up
to take it on first!!
We'd also like to wish Maggie well as she is about to move away,
and thank her for all her help on the committee.
If anyone is interested in joining the committee, please contact
a current committee member. Also if anyone can volunteer to open
up meetings at the centre occasionally, we'd welcome the offers.
Donations
As I'm sure you are aware, we are funded entirely by small grants
(of which there's no guarantee from one year to the next) and your
subscriptions. Occasionally we receive donations or hold a fundraising
event, depending on energy levels! So in an effort to increase group
funds, Linda Foley has put together a 'donations' letter (which
is included with this newsletter). The idea, if you are able (please
don't feel pressurized), is to send it to your friends and relatives,
drop one in at your neighbours or ask a partner to take it to work.
Even if people aren't interested in donating, it'll raise the awareness
of the group and the illness, and maybe people will get back to
us with donations in the future.
Personality Types
After reading a small article in an old Action for ME InterAction
magazine from last summer, I became interested in finding out more
about Personality Types. The article talked about the various things
the writer had done to aid her recovery. In researching her own
and others' types, she felt she could then work on her strengths
and understand others better - not getting so frustrated and stressed
by their actions. There are always times when someone does something
so alien to us that we can't understand why.
In this InterAction Article, she talked about Myers-Briggs Typing
- this was developed in the early part of the last century, with
a strong basis in Jung's Psychological Profiling. There are no right
or wrong types, they don't depend on intelligence or health or IQ,
but all have their own strengths and weaknesses. To give you a brief
summary: they developed 4 categories with 2 options in each, so
there are a total of 16 types. It is believed that people can exhibit
characteristics from most of the categories, but they will always
have a preference or stronger leaning to some more than others.
So the basic categories and options are 'Extrovert or Introvert';
'Sensers or Intuitive'; 'Thinkers or Feelers'; 'Judgers or Perceivers'.
The different combinations of these categories then give a specific
personality type. In knowing this we can learn what jobs may suit
us better, why we have the friends and partners we have, why we
react in a certain way and how we can improve ourselves by working
to our strengths and overcoming our weaknesses.
Any book on this subject will elaborate further and help you categorise
yourself and others. Try 'Gifts Differing' by Isobel Myers-Briggs
or 'Knowing Me, Knowing You' by Goldsmith & Wharton. There is
also no end of information and there are free tests to determine
your type on the Internet (just type Myers Briggs into a search
engine).
The Myers-Briggs tests seem to be used a lot in businesses and team
building these days, whereas the other sort of personality typing
I've read about is more spiritual.
Alex Howard from the Optimum Health Clinic in London introduced
me to the Enneagram. This has roots way back through history including
Pythagoras, Dante and Chaucer.
Here, there are 9 different types: The Perfectionist, The Giver,
The Achiever, The Performer, The Observer, The Questioner, The Epicure,
The Boss and The Mediator. Each type has very specific qualities,
but in times of stress or security one type will lean towards other
ones, determined by the way the Enneagram is represented. It is
drawn as a circle with The Mediator at the top, and linked to The
Achiever and The Questioner by a triangle, while the other types
are all linked by a 6 pointed star. This linking then indicates
how the types relate to each other.
Although all the types are equal, there does appear that there are
more people with ME who are a Perfectionist, an Achiever, or a Questioner
(also called Worrier/Warrior) just due to the nature of these types.
Again, the internet is full of information about this, and there
are many books on the subject which help you identify your type
and suggest how you can develop within that category. Try The Enneagram
by Karen Webb, or The Enneagram for the Spirit by Mary Horsely.
ME Awareness Week
ME Awareness Week will be 7th - 12th May 2007.
During this week, there will various activities happening around
the country with local and national ME groups.
Action for ME's campaign this year is 'Men & ME' - although
statistics show that women are three times more likely to get ME
than men, men have a significantly harder time getting a diagnosis.
As we know, early diagnosis can have a big impact on the development
of the illness, so it's important that men get the same recognition
that women do. Action for ME developed a survey at the start of
2007 specifically for men, and from this they will focus on their
particular needs. They have also recently contacted local newspapers
suggesting they do articles on Men with ME, so keep your eyes open.
Last year, Invest In ME held their first International ME/CFS Conference,
bringing together many key speakers from the world of ME (DVD in
library - this DVD was distributed to over 20 countries around the
world).
On 1st May 2007, Invest in ME will hold the second International
ME/CFS Conference. (They are holding conferences over 2 days - the
first day being ME Awareness & Support Day - open to individuals,
ME Patient Groups & Healthcare staff, and the second day is
Professionals Day - for clinicians, GPs, Occupational Therapists,
researchers and academics.)
The key-note speaker will be Dr Ian Gibson, who will have an up-to-date
report on his Parliamentary Inquiry into increasing biomedical research
in ME.
Others speakers include Professor Malcolm Hooper (Emeritus Professor
of Medicinal Chemistry who has co-produced a number of publications
regarding ME), Dr Byron Hyde (Nightingale Research Foundation, Canada),
Dr Jonathon Kerr (Senior Lecturer at St George's Hospital and key
researcher into gene expression in ME), Dr Vance Spence and Dr Neil
Abbot (from ME Research UK), Dr Abhijit Chaudhuri (Consultant Neurologist
from Essex Centre of Neurological Science), Dr Nigel Speight (Consultant
Paediatrician at University Hospital of North Durham and member
of Chief Medical Working Group on ME/CFS), and other leading experts
and researchers on ME from around the world, including key centres
in Norway, Washington, and Nevada.
One of our members is intending to be present and will hopefully
report back for a future newsletter. No doubt Invest In ME will
produce a DVD again, which we can purchase for the library.
On May 10th there will be The ME People's Day Event in London: it
includes a presentation to Downing Street and the Department of
Health - with placards, and then the afternoon at the House of Commons
where MPs can be lobbied. For those interested in finding out more
about the timetable or the presentations or how to get involved,
please contact M.E.PeoplesDayEvent2007@hotmail.co.uk
or call the Peterborough ME & CFS Group on 01733 552 872.
On Saturday 12th May there will be a social event in Regents Park,
London, running from 11am-3pm. During the day there will be poetry
readings from various people, a message from Garry Frankum - well
known ME Campaigner, and an opportunity to meet others from the
ME Community while relaxing with a picnic lunch. For more information
contact the Peterborough ME & CFS Group (as above).
National News
(info taken from InterAction No.59)
There have been several big investigations into ME recently: NICE
(the National Institute for Health and Clinical Excellence) produced
a questionnaire and then a draft guideline for the recognition and
treatment/management of ME during last year. They then asked stakeholders
to submit feedback to these guidelines. The response was substantial
in volume and comments, as the guidelines were somewhat controversial,
so the scheduled publication date of the guidelines has been moved
from April 2007 to 22 August 2007.
Also at the start of this year, the Gibson Inquiry was published.
This was an inquiry by Norfolk MP, Dr Ian Gibson into the progress
of scientific research into ME. It was a very positive and well
received report, stressing that biomedical research was much needed
into the causes of ME. A further inquiry is now taking into account
international research.
Not only did the Gibson inquiry investigate research into ME, but
it also raised concerns about the above NICE guidelines and brought
to light the difficulties people with ME experience when trying
to claim benefits. A summary of the report can be found at www.erythos.com/gibsoninquiry
A joint statement by national ME organisations Action for ME, BRAME,
25% Group, ME Association, Young ME Sufferers Trust, and various
leading doctors was produced in response to the DWP (Department
of Works & Pensions) Guidance document for ME, issued in January.
This statement expressed gratitude that it had been recognised that
there were many problems for people with ME trying to claim benefits,
but unanimously rejected the guidance document as being not fit
for purpose, as it was inadequate in many areas. The DWP responded
to the statement by saying they would take a closer look and it
is expected that there will be a fuller response shortly.
Members' comments
James discovered this website www.entitledto.co.uk
which is a very short and simple way of working out what benefits
and tax credits you are entitled to. James says "I've just
tried this website, it works like a dream and is easy to use."
Maggie told me about the Disabled Parents Network! On the website
is a wealth of information about being a disabled parent. Call 08702
410450 or visit www.disabledparentsnetwork.org.uk
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