Professional Documents
Culture Documents
Membership costs £5 a year and includes this quarterly newsletter STORM OVER
We have monthly meetings six times a year; usually on the second Monday of each month (except Janu-
ary and August). We alternate between group co-ordinator Jenny Griffin’s house and Room 3, Shirley
Community Centre (next door to Burger King and opposite Shirley Police Station), Stratford Road,
GREAT ORMOND
Shirley
New members are always welcome
Friend of
CONFERENCE
Tel:O121 689 0777 SSB has alerted the ME native therapies
community to a should not be
conference at Great promoted in NHS
Ormond Street Hospital circles.
o 0121 444 5177 Sun - Fri 12 noon - 7pm that appears to promote When Jenny
Jo will visit members who live within a reasonable distance of Kings Heath. She continues to be the Lightning Process to spotted the GOSH
interested in setting up occasional daytime meetings. NHS health profession- meeting she
als. alerted Dr Charles
Claire 01283 217 398 weekdays 11am-4pm (Claire feels she might be most useful to newly diagnosed The treatment, known as Shepherd, medical
members but is happy to chat with anyone)
the LP, generally costs advisor of the
£600 a course and has MEA: “I told him
Member’s news, thoughts or articles for our newsletter are very welcome. Articles can be sent to Jenny: received mixed feedback. we felt it was Photo: NOAA
59 Cartland Road, Stirchley B30 2SD or emailed to Many ME sufferers unacceptable and
mecentralnews@gmail.com or jlgriffin@blueyonder.co.uk claim to have been cured exploiting children and of alternative treatment
after the two-day parents to include an such as this, which have
Tel: 0121 689 0777 Text: 07906 466 682
intensive course. But unproven therapy which not been assessed for
National Groups equally, there are reports was also very expensive safety and
of people relapsing at an NHS conference.” efficacy in good quality
25% ME Group (for severe Fibromyalgia Association The Young ME Sufferers
following the process, Dr Shepherd raised the clinical trials, are
ME): UK: (TYMES) Trust:
which involves instantly issue at the July meeting presented to professional
0870 752 5118 0845 003 9002
01292 318 611 blocking any negative of Forward-ME. meetings.” cont p 7
www.fibromyalgia- www.tymestrust.org Sponsored thoughts and resuming
www.25megroup.org Dr Shepherd said: “I
associationuk.org By: ‘pre-ME’ activity levels. don't have any problem In This Issue...
DIAL UK: 01302 310 123
Action for ME (AfME): The talk at Great with health professionals
Ormond Street is entitled learning about Fundraising Success
0845 123 2380 ME Association (MEA): Disability Resource Centre
“From Assessment to and debating new and
www.afme.org.uk 0870 444 1836 Birmingham:
Recovery: Holistic possibly controversial Group Campaigns
www.meassociation.org.uk 0121 789 7365 Approaches to Working approaches to treatment
www.disability.co.uk
Association of Young Peo- with Young People with that are clearly being Research Latest
ple with ME (AYME): ME Research UK: CFS/ME” and includes aimed at vulnerable peo-
Carers Centre Birmingham:
0845 123 2389 01280 816115 an introduction to the ple with ME/CFS. Your Feedback
0121 678 8000
www.ayme.org.uk www.meresearch.org.uk Lightning Process. SSB “My concern lies in the
www.birmingham-
believes that costly alter- way that expensive forms
carers.org.uk
JENNY WRITES... Inside This M.E. Central
ISSUE
SOLIHULL & SOUTH B’HAM
M.E. SUPPORT GROUP
were pleased to welcome Bernadette at our
September meeting (see meeting news). As
Phew, there’s some big topics in this issue.
you can see on page 4, the committee’s
Jenny has her finger on the pulse as always,
thoughts have been turning towards our AGM
and we’ve got some fine investigative work to
next year and we hope that some of you will
report regarding the Lightning Process. Also
think about becoming a committee member
2 Jenny Writes the APPG inquiry that we wanted members to
and /or volunteering for a working party:
contribute to last issue looks in danger of
details are on our committee news page. We
becoming a whitewash (p 15).
are also trying to plan in advance for ME
4 Group News There’s urgent news on how those of us on
Awareness Week in May next year, having
benefits need to fight to protect them by taking
found out that when you have ME it is a
part in an AfME survey (p 7). And a show-
really good idea to start early as a last minute 6 ME News stopping speech from an ME conference is
rush is quite exhausting! So if you have any
condensed on page 8 (the full version is online
Hello everyone ideas or would like to volunteer to join this
working party, even if you could only 8 Conference Focus or available from Jenny). Meanwhile Tarsam
raises the issue of what support groups are for
I hope that you have enjoyed your summer in contribute by phone or email, we would be
on p 22. Well done to Shirley, who raised
spite of the fact that we didn’t exactly get the happy to hear your thoughts. 10 Real life: Shopping £125 for the group (p 5). And please do read
‘barbecue’ summer that the weather men
our committee report for ways we’d like
predicted! I was very lucky as I went on “We want you all to feel part of
12 Christmas Card Range members to become more involved either by
holiday with my family in June and I think the group and your input is becoming committee members themselves or
we had the best weather then. It was really
invaluable.” by opting to start or join one of our new
nice to have a break in Cornwall and it’s 14 ME News working parties on a range of themes designed
always surprising to discover that the pace of
The committee is only there to put in place to increase your input into the group.
life is so much more relaxed and slower down
what you, the members, want so speak up and And, as this is the issue that concerns the
there than it is here. Even with ME, when you
then we’ll know if we are doing the right
16 Therapy: QiGong run-up to Christmas, there’s a light-hearted
would think we are mostly out of the rat race,
things or what we can do to make the group look at shopping (p 10), plus our new card
you notice how much more peaceful it is and
how people have more time to chat.
even better for you! 17 Comedy Central range (p 12).
I really hate to mention this, but Christmas is Keep in touch, by email below, or by text:
not too far away now and we have included The number (for text or voice messages only):
Thank you to everyone who got in touch over
some information on where to buy some ME 18 Your Letters
the summer, it’s been good to hear your news
Christmas cards. It is good to get your cards 07906 466 682
and how you are getting on. It always seems a
early and then you can pace yourself and 19 In Touch
long time in between meetings as we have
write a few at a time. If you are like me M.E. Central is published quarterly, and
August off, so I am always pleased to know
though, you will be full of good intentions aims to reflect the interests and concerns
that you are all still out there! Some of you 20 Research News
and then forget to do it until December - just of members of Solihull and South
have had a good summer which is nice to
like last year! But at least you will have the Birmingham M.E. Support Group. All
hear, but some of you have not been having
cards handy when you do remember J submissions are subject to editing by the
such a good time and I hope that things will 21 Book Ends
get better very soon for you. Remember we editorial team. All rights reserved.
Take care of yourselves, We welcome articles and ideas from
are always here, if it all gets too much.
Love 22 The Last Word members, either named or anonymous.
In the meantime the group has been moving Please email:
on and many of you have taken advantage of 23 Sources of Help mecentralnews@gmail.com
our new library service and our relaxation
iPods, which Louise has put in place – lots of jlgriffin@blueyonder.co.uk
thanks to her for doing this. We have also
taken up the offer of an outside volunteer and 3
ME NEWS...GROUP NEWS...ME NE ME NEWS...GROUP NEWS...ME NE
E LATES T SPELLING IT OUT
DIARY DATES