Next meeting:
Monday 21st March 1.30pm - 3.30pm
Social meeting. Drop by for a chat, to look
at our library books and meet other members.
Remember to sign in at the door.
There is the usual parking in Green's Road and Primrose Croft.
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Since the start of the new millennium, Professor Puri has been using
natural fatty acids to treat patients with chronic fatigue syndrome.
He has also been actively researching this disorder with colleagues
at Imperial College London, using state-of-the-art electrophysiological
and brain scanning techniques. His treatment approach and research
findings have been described in authoritative medical journals and
in lectures at international medical conferences.
Professor Puri is able to give direct evidence of treating patients
and will describe some almost remarkable recoveries.
In addition to our talk in Cambridge, there is going to be an M.E.
Day in Peterborough on Monday April 25th and Professor Puri will
be giving three talks at this event, which commences at 10.30am.
It will be taking place at the Edith Cavell Hospital and it is organised
by the M.E. Group in Peterborough.
If you want to find out more about Professor Puri's products and
research before or after the meeting, go to www.vegepa.com
One copy of Professor Puri's book is available in the library.
Remember to make a note in your diary or on your calendar of the
meeting in March!!!
Future Meetings dates 2005:
Wednesday 20th April 7pm-9pm
Indian Head Massage – informal talk and demonstration
by Diane and James (committee members)
All meetings to be held at Hilltops Carers' Centre, Primrose
Street, Cambridge.
Remade Birthday cards sold in aid of the ME Group are always
available to buy.
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Free Massages:
James Massey, one of our committee members is looking for volunteers
to help him complete his aromatherapy course. James has been let
down by a few people, so urgently needs volunteers for free massages
- ask friends, relatives, carers, etc. Massages are a lovely way
of soothing aches and pains - for everyone. James has had ME for
some time and so he is sympathetic and adapts his massages accordingly.
All offers gratefully received, but James reserves the right to
decline your offer if medical conditions will be aggravated by massage.
He has a couch and will travel locally.
Anyone interested please contact james.massey@ntlworld.com
or 01638 742095
Children with ME
A full statement and summary of the Guidelines for Paediatricians
can now be viewed on the home page of AYME's Website at www.ayme.org.uk
(bottom right hand corner).
A download of the full Guideline document and the patient pamphlet
is available from the Royal College of Paediatrics and Child Health.
http://www.rcpch.ac.uk/publications/recent_publications/Latest%20news/CFS.pdf
A Young Person's Guide is available from
http://www.rcpch.ac.uk/publications/recent_publications/Latest%20news/Leaflet.pdf
There is also a printed copy of this in the Group Library.
The Power of Support Groups
by Delaine Gately
Source: CF alliance newsletter
During 1993 the doctor said, "You have CFS; there is no treatment,
however antidepressants could help." He suggested I find a
support group. My life had come to a complete stop and that was
all he could say? I had never heard of CFS; all I knew was I couldn't
function. I couldn't work or think. What good was a diagnosis if
there was no way to treat the illness? I crumbled in despair.
My daughter found a support group. She literally dragged me to that
first meeting; the sheer effort of walking was overwhelming. Anxiety
and panic hit. What if CFS was contagious - could my family get
this illness? My daughter swept up every brochure, she talked to
everyone, took names and numbers.
That night was the beginning of my gradual recovery. It opened a
door to treatments, doctors, research, facts, fakes, CFS & FM
associations and networks and survival skills.
That first meeting started my reclamation and education about life
with a chronic illness. The support group stopped my free-fall and
helped me realize I wasn't alone, and that my illness was neuro-physical
not psychological. I learned about disability and benefits, I began
to take control of my illness and addressed my own denial.
If my daughter had not found that first support group I might not
have survived. My ignorance paralysed my recovery. Attending a support
group changed the direction of my illness giving me support, education,
empowerment and new friendships.
In 1996 I became a support group leader. Being active in a group
has been good medicine for my mind, body and spirit.
Life Coaching and ME
I received this as an e-mail from a Life Coach called Alexandra
Barton - here's what she says:
"I work as a Life Coach, but recently decided to reserve two
low-cost places specifically for people with ME. This is because
Life Coaching played a large part in my recovery after many years
of having ME myself.
Life coaching originated in the USA over a decade ago and it is
estimated that in the next few years it will be as common to go
to a life coach as it is to go to a counsellor now. Going to a coach
means concentrating on positive forward action in your life. A Life
Coach takes you from where you are now to where you want to be.
Coaching is ideal for those with ME as it is usually done over the
phone (though it can also be done face to face and via email) -
which means you can be coached from your own bed. The Life Coach
will establish with you what it is you want, which could be anything
from going back to work or just being able to walk 100 yards or
wash your own hair; pacing, getting some fun into your life, finding
new interests, meeting other people, de-stressing, relationship
issues, life balance, finding a clear route forwards towards recovery,
sorting out your priorities, losing weight, exercise, decluttering,
time management, career issues, a way out of anxiety and depression
- anything at all. You will decide on the goal you want to achieve
and each week you will work with the coach to create a plan of action
that will enable you to reach that goal. You will discuss and evaluate
your progress, remove obstacles that come up and adjust as necessary.
The coach is there to keep you focused and motivated and will support
and encourage you along the way.
Coaching is not an on-going process. Most people find it takes four
to twelve sessions (max) to see real, effective change in their
lives and to have the confidence to continue forward alone.
People with ME often feel alone and neglected by the medical profession.
They often feel down and see little hope of a better future. They,
more than anyone, need someone who is firmly on their side, who
can encourage them and keep them focused on a healthier future,
and who can help their tired brains find a clear way forward.
Alexandra Barton is a Life Coach and Nutritionist. She has experience
of ME and understands the issues involved. If you would like to
learn more about coaching, please contact her on:
alex.barton @tiscali.co.uk
or telephone 0117 924 4879."
Last chance to save our supplements!
(Source: IMEGA -e Website)
Unless we act now, many of the vitamins and minerals on which we
M.E. sufferers depend will be banned on 1 August. For example, Magnesium
EAP2 and Magnesium Ascorbate, which are the best forms of magnesium
and vitamin C for many of us, will simply disappear. Boron in any
form will be banned.
This draconian legislation, known as the Food Supplements Directive,
will be debated in parliament at the end of January (or early in
February). There is an urgent on-line petition against it, as well
as a postcard campaign to persuade MPs to oppose it. This whole
campaign is now well supported and has a real chance of success.
See the Consumers For Health Choice Website at www.healthchoice.org.uk
Do read the press releases and sign the petition today!
You are also encouraged to write to your local member of parliament,
protesting against the ban.
CFS RESEARCH FOUNDATION
A couple of years ago, our group donated some money to this foundation
and recently they have appeared in newspapers, explaining their
research and requesting more donations to help further investigations.
"The CFS Research Foundation was officially launched in 1993
to bring together the best minds to meet the challenge presented
by chronic fatigue syndrome, encouraging basic research into the
body mechanisms that lead to and continue the illness. The CFS Research
Foundation has funded or is funding sixteen research projects in
British universities and medical schools."
Current research projects include a study comparing the activity
of genes in people with ME with those in a control group of healthy
people, to discover why the immune system is chronically activated
in patients with ME. So far, results indicate that people with ME
have genes that show problems in various systems, including the
immune system, neurological function and mitochondrial metabolism
(making energy in cells).
The Foundation has over 8 prominent doctors and professors just
on their research committee. They also work with specialists from
many other colleges and hospitals in the UK, and worldwide.
Their research continues, but the CFS Research Foundation is dependent
entirely on donations from grant-making trusts and from individuals.
There is now, at last, every hope that we can look forward to, first
therapies, then a cure for this disease. But we must redouble our
efforts to fund scientific studies to make this possible.
If you are interested in finding out more, or sending a donation
to the Foundation - write to:
CFS Research Foundation
2 The Briars
Sarratt
Rickmansworth
Herts WD3 6AU
01923 268641
Newsletters
Just before Christmas, we changed to a different printing company
to produce our newsletters. We now use The Burwell Community Print
Centre.
They now print, fold, stamp, and address our newsletters - and all
for a cheaper price!
The organisation is set up specifically to "promote independence
and increase self-esteem for adults with learning disabilities in
a stimulating working environment while providing quality community
printing and related services."
ME Stories
Another email we received was from Maxine Nicol - she said:
"I am writing to you for your help.
My name is Maxine Nicol; I am a 21-year-old girl and have suffered
from M.E for ten years now.
I have decided to research individual, personal experiences. By
doing this, I hope to raise awareness through publicity and help
research groups across the U.K fit similar pieces of the puzzle
together.
I would also like to share the stories with our M.E specialist
nurse working in my region, who is currently involved in developing
guidelines for GP's across the U.K about patients with M.E. Also
Chris Clark of AfME, who is helping raise in parliament how the
symptoms of M.E are debilitating and continuous, and is trying for
recognition to help sufferers with financial benefits.
I would be extremely grateful if you could ask members of your
support group, past and present, to send me their individual experiences
via e-mail to
mecfsproject@yahoo.co.uk
Thank you for your time and I look forward to hearing from anyone."
Anyone who is interested but without a computer, let one of the
committee know and we will send you the information. Those with
a computer, e-mail Maxine or Diane, as Maxine has compiled a guide
for people to use if they wish.
Nightingale
John Herd
Source: CF alliance newsletter
The ME/CFS movement embraced Florence Nightingale because many believed
her to have suffered from ME/CFS.
There's another, maybe even more appropriate, reason for embracing
not the name Nightingale but the nightingale bird.
A nightingale, if raised in seclusion away from other nightingales,
will not learn to sing. But if it is then brought together with
other nightingales it will learn to sing, doing so as if it had
been doing singing all its life.
This is a magnificent metaphor for how from one another ME/CFS
patients learn to cope, advocate for themselves, and if they are
lucky to laugh despite the hardships they face.
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Allergies:
Many of us have sensitivities and allergies, and it is often difficult
to get hold of items that suit us.
For food, try:
· Daily Bread at
Daily Bread Co-op (Cambridge) Ltd,
Unit 3, Kilmaine Close, King's Hedges, Cambridge,
CB4 2PH
Tel:- (01223) 423177
www.dailybread.co.uk
Open from 9-5:30 Tuesdays to Fridays, and 9-4 on Saturdays.
In the shop they sell a wide variety of products including organically
grown fresh fruit and vegetables. They also stock a selection of
books on wholefood, diet, and trade issues.
· Organic Health at
Organic Health (Cambridge)
87 Church Road
Hauxton
Cambs
Cambridgeshire
CB2 5HS
Tel: 01223 870101
www.organichealth.biz
Open 9-5 Tuesday to Saturday, and 9-6.30 on Wednesday.
Shop for healthy food alternatives - with over 3000 lines and growing.
For those of you online, try
· The Wheat and Dairy free supermarket at
www.wheatanddairyfree.com
offering 400 wheat, dairy, gluten, yeast, sugar and caffeine free
products, with delivery in 48 hours at £5.95.
The Website lists all their products and the ingredients in them.
· Goodness Direct
www.goodnessdirect.co.uk
which is the website Organic Health (see above) are linked to.
They have 3000+ health foods, vitamins and items selected for those
with special dietary needs.
Also online -
The Healthy House has just launched its new forum for people to
discuss allergy issues.
The Website not only offers products from light boxes to ionisers
to antiseptic sprays, but is also a good place to find out about
allergies, read recent news articles relating to the topic, and
now chat to others who have similar problems.
The forum and shop are found at
www.healthy-house.co.uk
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