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SOLIHULL & SOUTH B’HAM

M.E. SUPPORT GROUP

About Us SOLIHULL & SOUTH B’HAM


The Solihull and South Birmingham M.E Support Group is an independent, self supporting group run M.E. SUPPORT GROUP
informally by the members for the members
“ s“uspuppoprot ri nt ign sgusfuf e
f freerres ras nadn d
t htehi e
r ifrafmaim
l iiel ise”s ”
We are the only ME support group in Birmingham and Solihull at the present time

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

COMMITTE Shirley Harris, a


October 12: Shirley, 7.30pm:
Kay Donaghy from Solihull
teacher and member ENABLE is coming to Shirley
Jo, Tarsam, Alan and Jenny become committee members more efficient. See box below of our support to give us a short talk on
attended the July 21 meeting. in 2010. Another major new for ideas. group, has raised a social services direct
Louise sent her apologies as development is the Tarsam proposed that we set staggering £125 at a payments.(See Help page)
she was unwell. We heard introduction of a contacts list up a working party to prepare school fundraising
reports from Jenny on for members. how to put together a SSB event. November 9: 59 Cartland Rd,
campaigning issues, It was proposed that the Dec contact list for members, She organised a 1-3pm
correspondence to the group, newsletter would include a which he had suggested at a Victorian tea room
fundraising events and membership renewal form, previous meeting. Jo and in her classroom at Dec 14: Christmas Social:
donations. The committee voting slips for committee Tarsam are on this working Perryfields High School, ing to raise money for such a 7.30pm, Shirley –everyone
congratulated Shirley on her members, notice of the group party. The committee also Oldbury, in June to raise good cause made me proud to welcome!
splendid fundraising day at AGM and a contact list agreed to send out a Swine flu money for ME research. On be their teacher.”
Perryfields School (see p5) invitation/permission form. leaflet as soon as possible. the day she also did an Jenny and Alan were invited Message from Jo: “If anyone
which raised £125! The Alan reported back on the Many thanks to Tarsam for information stall, with blue to the year 9 assembly in July would like a lift to meetings
library service and ipod group finances which are hosting the meeting and ribbons for sale and posters to receive the cheque from get in touch on 0121 444 5177
service are up and running holding up well this year. Jo making us all feel raising awareness of ME. head teacher Mr Meredith. (Sunday to Friday 12 – 7pm)
with a very good response so proposed the use of working comfortable and relaxed! Shirley (pictured with pupils) Jenny says: “We met some of and I will see if I can help.
far. The committee thanked parties to encourage new Next meeting Oct 19. said: “It was a really worth- the year 9 pupils and staff., Nothing guaranteed but worth
Louise for her hard work on input of ideas and proposals Interested in becoming a while exercise; not only did and so we were able to thank a try!”
setting up these new services. from members outside of a committee member in 2010? we manage to raise a fair sum them in person – especially
It was decided to publish a normal committee meeting. We would like to hear from of money, but staff and pupils Connor and his brother, Zac.” Thanks to Patrick who
full newsletter in September Findings could be presented you! To chat about what’s gained insight into an illness A big Thank You goes out agreed to feature in the
which would include an to the committee for involved phone which they knew so little from all of us to Perryfields Solihull News, highlighting
invitation for consideration, which would Jo: 0121 444 5177 about before. The way in High School for making us the work of our group for the
members to nominate hopefully make meetings or Jenny: 0121 689 0777 which the pupils in particular part of their charity day. And Handmade Burger Co’s chari-
themselves or others to threw themselves into want- special thanks to Shirley! ty campaign. It prints Sep 25.
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ME NEWS...GROUP NEWS...ME NE ME NEWS...GROUP NEWS...ME NE
“LP Doesn’t Work for
ME” NEW VOLUNTEER BENEFITS UNDER THREAT
John Sayer has created a web A government green paper on also including long-term for extra cost of living
page recording experiences of
the Lightning Process at:
FOR GROUP the future of care for adults is
ringing alarm bells in the ME
illnesses. Steve says: “The
green paper suggests that the
incurred through disability.”
The final deadline for all
www.sayer.abel.co.uk/LP.ht Our new volunteer Bernadette ing, who was a member many community. government plans to stop surveys and comments is
ml Contributions should be attended the September years ago. Ron has trained as Many fear the government is paying Attendance Allowance November 2.
emailed to: meeting in Shirley. a holistic therapist and has going to stop paying and the care component of The survey is available at
john23@sayer.abel.co.uk Bernadette became a just brought out his DVD on Attendance Allowance and DLA and give the money to www.afme.org.uk/news.asp
volunteer through SUSTAiN QiGong and he is justifiably the care component of social services to administer Click on care consultation. To
and we were introduced to her very proud of this. At the end
Invest in ME via Manjit, who helped us so of the meeting Ron did about
Disability Living Allowance as part of a personal budget receive a paper hard copy of
Conference 2009 much with our grant earlier in and 20,000 people have instead.” the survey please contact
10 minutes of basic QiGong signed an online campaign. In response to this alert, admin@afme.org.uk or call
The 4th international the year. We have asked with us and we all discovered
conference had an impressive Bernadette to attend and help Steve Donison of the Benefits Action for ME has set up a 0845 123 2380.”
how to channel and increase and Work website drew survey on its website. An The Benefits and Work
list of speakers, including Dr out with the Shirley meetings our energy flow.
Chia, Dr Kerr and Professor to provide cover for when attention to the contents of AfME spokesperson said: campaign can be found at:
Ron pointed out that nearly all the paper, called Shaping the “We need to know what www.benefitsandwork.co.uk
Kenny De Meirleir. Hilary Jenny is unable to make it. the people that attended
Johnson (who wrote Osler’s Jenny says: “Now we will Future of Care Together, last people with ME think about Click on disability living
(except for Jenny and month. The paper sets out these proposals, in case the allowance, then click again on
Web) gave a pre-conference have Bernadette to make sure Bernadette) were male.
talk on how ME has been proposals for a National Care Government phases out some DLA and AA threat from the
everyone is welcomed and Jenny adds: Service for adults in England, or all of the cash entitlement lefthand menu.
manipulated by a government looked after. For the time “In my usual ME way I
agency. This talk and all the being we will both be at the focusing on older people but
hadn’t noticed! I think this is
presentations at the conference Shirley meetings while we all a first. Several members
are now available on a set of get to know each other.”
DVDs which can be ordered Bernadette said she learned a
turned up (well done!) and we LIGHTNING RESPONSE TO SEMINAR
had one new member – from front... “The presentation by
from Invest in ME (£12) lot about ME from our first welcome to George!” Dr Shepherd argues that both its proponent will be followed
www.investinme.org meeting! It was good to also See p 5 for diary dates. sides need to be presented: by a response by Professor
or borrowed from our library. see Ron Prescott at this meet- “Those present also need to Peter White, and questions to
be aware of any negative a number of experts.
OBITUARY: MARTIN DUNN aspects and concerns that are
being expressed - people who
raised my concerns through
the Forward ME Group.”
“The issues raised with us
by patient groups will be
Martin Dunn passed away on were killed in a horrific car a lovely easy manner about
September 21 after a long and accident in 2007, the shock him. He got on well with have been persuaded by the A spokesman for GOSH said: discussed.
very courageous battle of which he never really got everyone, he was always promotional material, spent a “Our annual chronic fatigue “It is wholly appropriate for
against cancer. Martin and his over. willing to talk to others and lot of money, and not gained study day, aimed at professionals to have the
wife, Freddie, were loyal Martin was a skilful was a sympathetic listener; all any benefit from a treatment. professionals, has a varied opportunity to be informed
members of our group for carpenter and he wrote of which made him very pop- “This should then result in programme looking at various about different approaches for
many years. poetry, often inspired by his ular in the group. He also had a critical and informed treatments. treatment if they are also
Martin developed ME after Q love of nature. We hope to a great sense of humour discussion taking place. “We have included Lightning aware of controversies around
fever - though rare, there was publish some in future which we all enjoyed and he “This is even more important therapy which some of our those options.
well documented local newsletters. will be missed by us all. when a behavioural treatment families have tried or are “A disclaimer stating we do
outbreak in 1989. He was a Many of you will remember We send all our love, support such as this is being aimed at interested in trying. We are not endorse or recommend
great lover of nature and his Martin attending our group and deepest sympathy to children and young people. I fully aware patient groups treatment and management
very favourite place was meetings in Shirley with Freddie and all their family – was not convinced that this have concerns with this thera- outside NICE and RCPCH
South Wales. Tragically, it Freddie. Martin was a very our thoughts are with them at was going to be the case at the py and will explore it in an guidelines will be made to all
was here that both his parents down to earth person and had this very sad time. GOSH conference and so appropriate way. participants.”
CONFERENCE NEWS CONFERENCE NEWS
WHEN DOCTORS DON’T LISTEN...
Catriona Courtier has had ME for 20 years. She is There is a belief that we are CBT is designed to change sleeplessness, anxiety, de-
trustee of a support group in West London. suffering not from a physi- negative beliefs. What is a pression, nausea, dizziness
cal illness but from an ill- negative belief? and so on. But we do also
She has a daughter with ME so severe that for years ness belief. It depends what the therapist want treatments which will
she was too weak to have her hair washed. considers negative. In the ap- directly address the illness.
This is at the root of all the plication of CBT to ME, it is The recent Invest in ME
She wanted “to give a voice problems we experience: the often the patients' experience conference which attracted
to the severely affected as lack of resources, the that exercise makes their medical experts from across
they can't come to hostility and disbelief from symptoms worse that is con- the world showed the interest
conferences and are not seen some doctors, and in the very sidered a negative belief that in antibiotic, anti-viral and
by doctors. Their experience worst cases, the imposition of should be challenged. In spite immune modulatory treat-
is not always understood psychiatric treatment against of research pointing to the ments as potentially effective
even by people with ME who the patient's wishes. contrary patients are told therapies for our illness. I
are less ill.” So she decided In 2002 the working group of their symptoms are due to though they still remain ill. believe Dr Kerr has said there
to speak out. the Chief Medical Officer lack of fitness and can be But pacing is not a therapy or are existing drugs which
said: "ME is a chronic illness reversed by exercise. Pa- a treatment. People can pace could turn off some of the
As Michelle Obama said: a lot of money. In part, that is meriting significant NHS tients are told there is nothing themselves diligently and still upregulated genes he has
"We are only as strong a reflection of the vacuum resources." to stop their bodies gaining deteriorate. identified. Of course trials are
as the weakest among that exists within the NHS. But an editorial in the Journal strength and fitness. I think we have to accept needed but when are these
Some people come to realise of the Royal College of The ME Association survey there is not currently a cure trials to be carried out? We
us." how little treatment they are General Practitioners asked people with ME about for the condition. However are constantly told about the
offered for their ME when questioned the validity of the 25 different therapies. GET we cannot wait for a cure need for evidence based
Here, we print extracts from they develop another illness. CMO's report. It described
came bottom as least helpful before we receive treatment. treatment but without re-
her speech given to the RSM One of our members devel- patients with ME as suffering and most harmful. Another A West London group search how can that evidence
conference on ME and CFS oped diabetes and described from persistent unexplained
survey by the 25% group proposed to the APPG that be provided?
in July. For the full article go her experience at the diabetic physical symptoms and stat-
showed that 82 per cent of patients with ME should be I began by describing the
to clinic at her local hospital: "I ed: "illness belief and severely affected patients had medically reviewed once a severely affected as the
www.mecentral.blogspot.com
am regularly monitored. I am behaviour do not amount to been made worse by GET. year; a review the patient weakest among us. In some
listened to and what I say is proof of physical causes and Some had not been severely would be offered rather than ways they are the strongest. If
My first thought about treat-
taken seriously. The clinic is there are gains involved in affected before they tried it. having to ask for, with a people climb mountains or
ment was - what treatment?
well staffed with senior adopting victim status". This Pacing means doing what doctor who is knowledgeable sail round the world single
Because most people with
doctors. Diabetic sisters was in spite of numerous you can, doing a little more about the physical symptoms handed they are praised for it,
ME experience a lack of
make visits to severely research findings showing when you are feeling better, of ME, who can discuss the but to live for many years
treatment. They are
affected patients in their physical abnormalities in doing less when you are feel- patient's current symptoms, with an illness like ME is
diagnosed. They feel relief.
homes. There is a weekly subjects with ME. ing worse. Activity can be carry out investigations also a huge feat of human
But rather than diagnosis
drop in clinic for any I have been told by a broken down into where necessary and offer endurance and courage but is
being the start of a journey, it
niggling worries." This consultant physician that manageable chunks. It symptomatic treatment. seldom recognised as such.
is the end of the journey.
would be beyond the wildest ME is by definition an illness enables patients to enhance Treatment can be offered for People with ME at all levels
Many people turn to alterna-
dreams of most patients with where there is nothing physi- the quality of their life, even many of the symptoms of ME deserve to be respected. They
tive therapies, often spending
ME. cally wrong with the patient. including pain, allergies, deserve to be listened to.
EVERYDAY LIFE... ...EVERYDAY LIFE...
Shopping 4 Energy

Don’t shop when


overtired, whether
in a wheelchair, on
How many days until Christmas? We’re trying of preparing a list is that you foot, on the phone
not to count. will undoubtedly save money. or online - errors
Try and jot down any special will be made
offers you see advertised -
But ‘tis the season to at least try to shop with any time from October these
energy top of the list! Lists, lists and more
days!
Presents are a different lists are what get
Many of us used to love But it doesn’t exactly keep matter. It helps to have a you through
shopping... in fact some of us the fridge stocked. “mission control” approach to
wonder privately if it was part And it does very little for the festive season, co ordinat- Sit down with some-
of our undoing. your wardrobe. ing everything as you lie on one without ME to
These days, it’s commonly And let’s not even go there sofa or bed with carefully
viewed as the last thing you where Christmas is concerned
plan your food
honed lists for food, presents,
want to spend time on. (collective groan). shopping
and all the things you would
Supermarkets are hell on So what are the options? otherwise forget.
earth - a nightmarish Whether you are pacing Present lists need to be done Consider a box
combination of fluorescent carefully and managing your early. By October. Bought scheme - not only
lighting, unruly toddlers, energy levels, perhaps gradually and without panic will you get fresh,
beeping tills and chilly aisles still managing to work, or in November, and wrapped organic produce but
(and if in a wheelchair at severely affected and unable perhaps one a day in
chiller cabinet level the blasts to leave the house, shopping there will be less of
December.
can be positively arctic). is for most of us way down once it’s ready, just pick up Organic box schemes are Stocking fillers can be bought a shopping list each
Clothes shops become part of the list. And yet kind of the phone. another way to avoid lists and whilst you do your food shop. week
distant memory, so unsuitable essential unfortunately. You get through to a friendly computers. And they can be Or there are some good
are they for the ME befuddled There are alternatives. member of staff who will run surprisingly economic. When nostalgia toy websites if you
brain and exhausted body. For those of you bracing through your list with you, a box of fresh ingredients put nostalgic toys into google. Plan present shop-
Fighting your way through yourselves for a breezy inputting it online and turning shows up every week, you Of course, one of the nicest
the racks of sales bargains, suggestion to get online and it, effectively, into an online
ping in advance and
tend to cook with what ar- money-saving tips of all is to
jostling at the tills, reaching sort it all out under the glare order. pace the wrapping
rives. There is very little make your own.
up, bending down...well it all of a computer screen, you This is then processed in the waste, and it means you are From Christmas tree
becomes strictly the preserve may be pleasantly surprised. normal way. They help you left with just fridge and decorations to main presents,
of the healthy. A recent conversation with choose a delivery time and cupboard essentials to get. a home-made gift means so An ebay search for
And to be honest, when we our Outreach co ordinator Jo before you know it, your Where Christmas is much more. clothes works
really think about it, is not revealed a little known fact. shopping is at your door. concerned, it always helps to None of this sorts out your wonders. Don’t
shopping such a bad thing? Sainsbury’s do telephone The number is: sit down with someone with a wardrobe though...
Becoming purer of thought, orders! waste your precious
clearer head and just ask: One solution is to put your
high-minded in your rejection Yes, without having to go 0800 328 1700 “What do I need?” favourite labels into an ebay
energy battling the
of all things consumerist is near a computer, you can do Two, or even three, heads are search and your size. You’d hordes.
one of the hidden bonuses of your best compiling a list and better than one and the beauty be amazed at what comes up.
life with a chronic illness.
NEW CARD
SELECTION
Pack A FOR Pack B
CHRISTMAS!
Why not buy a pack of our
Christmas cards and raise
much-needed funds for the
group?

You can choose from Pack A


or Pack B, or a mix of both.
Also, remember to order
some friendship cards for
sending letters over the
festive season!

Use the order form below or


call Jenny to place an order.
Card Order Form
Please indicate quantities in the boxes below and remember Our friendship cards are
to make cheques payable to Solihull & South Birmingham ME Support Group: good to send to people any
time of the year!
CHRISTMAS PACK of 12 Assorted: £6 a pack (£10 for 24) Tick box above to
express an interest in
Pack A Pack B Mix Pack A & B Send A Card scheme ME Research UK Christmas Cards are also now available.
Just go to MERUK’s website www.meresearch.org.uk and
click on Christmas cards
Alternatively ring MERUK on 01738 451 234 and ask for a
CHRISTMAS PACK of 6: £3.50 a pack
Christmas card order leaflet.
Pack A Pack B In Fr
SEND COMPLETED FORM & CHEQUE TO: iendsh
ip The ME Association are also doing Christmas cards this year
Louise Palfreyman and these can be ordered from the Book Order Form on their
7 Goldsmith Road
website: www.meassociation.org.uk or phone 0870 444
Kings Heath
Bham B14 7EH 1836 to ask for help if you don’t have a computer
FRIENDSHIP CARDS PACK of 4: £2 a pack
ship
.
nd
rie And don’t forget, even if you don’t buy Christmas cards, you
Blue Sky Deckchairs Your name...............................
I nF can still help - see details of MERUK and the ME
Your address.............................
............................................ Association’s “Just Four Quid” campaign to raise money for
biomedical research at www.justfourquid.com
TOUCH...ME NEWS...IN TOUCH... ME NEWS...GROUP NEWS...ME NE
Diary Date
WATCH ME CLIPS October 17
RUSHED INQUIRY
Hints on daily life with ME
are now available in short
France Quirin, Perrin Tech-
nique practitioner, is giving
free one to one chat sessions
CONDEMNED AS
videos on the NHS Choices
website and YouTube.
Dr Charles Shepherd, medical
about your ME and what may
help you at Head To Toe ‘DISORGANISED’
Health, Kimballs Walk, off
adviser to the MEA can be ME groups have slammed the
Knowle High St. Book in
seen discussing how to come government’s organising of
advance on
to terms with the illness and an inquiry into services.
Dr Charles Shepherd
obtain help in a video on at The All Party Parliamentary
01564 771 616
www.nhs.uk/conditions/chr Go to www.youtube.com Group held an Inquiry on
onic-fatigue-syndrome and put the words Ellen NHS services for ME in June.
He says: “It’s important to
If you click on the real stories Goudsmit into the search They invited submissions,
have a personal talk and as-
tab Annette Barclay, who has field. Then click on NICE and sent out questionnaires
sessment by a therapist first.”
had ME for 25 years, gives review The CFS/ME for patients, Health Authori-
There is no obligation to have
some tips about how not to let Guidelines Judicial Review ties and service providers.
any treatment.
the illness completely rule Part 11. Jenny says: “SSB sent a
your life. Part 11 explores the Do you need help with a submission of evidence from The SSB submission conclu- responsibilities – financially
ME on YouTube “Envelope theory”: avoiding fundraiser for ME? We can our group but have had no sion reads: “There was a great and morally.
Short videos made by char- over and under exertion and supply blue ribbons, posters, acknowledgement”. deal of anticipation and hope “No one enforces the National
tered health psychologist Dr the precise difference be- and awareness leaflets. The hearings took place over for the new NHS services for Standard Framework and
Ellen Goudsmit - are now tween graded exercise and Text: three separate days in July. CFS/ME but this has been consequently many Health
available at YouTube. pacing. 07906 466 682 Very few people were invited followed by a great deal of Authorities fail to meet these
to give personal testimony disappointment. The services requirements. Meanwhile the

NHS CHIEF URGES SUPPORT Jenny adds: “The overall


feeling is that this inquiry was
disorganised and rushed.”
are chronically underfunded.
“They lack impetus and drive
to improve.
patients continue to suffer and
many lead lives of
unimaginable deprivation and
Charities not supporting NHS of the CCRNC meant sup- produce evidence to effect a
guidelines for ME care may porting the NICE change in the guidelines. In There has been no feedback “Any improvement must isolation without any hope.
not have a say in the training guidelines. order to join the from the inquiry as yet. come from the top down: “We genuinely hope that the
of NHS professionals. Jenny explains: “Dr Charles collaborative, charities would Jenny said: “Many people there should be a real effort to new initiative at the MRC to
West Midlands ME Groups Shepherd of the MEA asked be expected to sign up to the said their PCTs, local services unify programmes to increase promote good quality
have campaigned long and whether, in the light of the evidence based approach.” etc had not received their real knowledge and not be research and engage with
hard about NHS conferences widespread opposition to the The evidence-based approach questionnaires and the patient satisfied with just patients via the NHS services
and training overseen by the NICE Guidelines, charities is namely Graded Exercise questionnaire was hard to providing any old service as for CFS/ME and the local ME
CFS/ME Clinical and that were opposed to them Therapy and Cognitive Be- understand, to say the least!” long as it ticks the boxes for support groups is successful.
Research Network would be invited to become havioural Therapy, as sup- The SSB Submission of the DoH, regardless of “Without this the services are
Collaborative. members or associates of the ported by NICE guidelines. evidence is available for whether the patients are no more than a token gesture
The CCRNC chair, Dr Esther CCRNC executive. WMMEG is currently in a anyone to read at our blog: satisfied or not. to thousands of sufferers of
Crawley, and training “Dr Crawley acknowledged lengthy correspondence with www.me-central.blogspot.com. “The services lack ME - a gesture which began
manager Hazel O’Dowd, that, whilst the NICE Guide- Dr Crawley. We will report Or ask Jenny for a paper accountability, transparency with high hopes and goodwill
were invited to the July lines were flawed, they were back on the outcome! copy. and a real desire to listen to but sadly failed to meet its
meeting of Forward-ME.They a start. There was a need for The full minutes of this Call her on 0121 689 0777 the grassroots patients. Health expectations.”
made it clear that being part all to work together to meeting are available at: authorities are only too
www.forward-me.org.uk anxious to offload their
THERAPY UNCOVERED COMEDY CENTRAL
Ron has adapted QiGong for ME to rule out
SLOW BUT SURE the possibility of experiencing serious fatigue We’ve all seen them,
after sessions. but never been quick
“You can do it sitting or standing and the enough to capture
principle is that doing something slowly in a them on time. We
repetitive form is like meditation and helps bring you the best
calm the mind.” corkers from the
QiGong gradually works on energy levels,
world of signs
raising them slowly by moving muscle groups
slowly. “If we move muscle groups fast we
create energy but it drains very quickly,” Ron In a Paris hotel elevator...
adds. In a Moscow hotel,
By following the form, Ron says it is possible across from a
Ron Prescott began to train in alternative to find relief from ME symptoms. Outside a New Mexico dry Russian Orthodox
therapies when his ME started to improve. Jenny experienced a taste of Ron’s QiGong Please leave your cleaning store... monastery...
A former member of SSB, he is now a Tai tuition at our September meeting and says: values at the
Chi master and has just brought out a DVD “At the end of the meeting Ron did about 10 front desk
aimed at ME sufferers called “The Smile ME minutes of basic QiGong with us and we all You are welcome to
Cure Programme”. A trailer is on YouTube, discovered how to channel and increase our visit the cemetery
under the search term Smile QiGong. energy flow.
The DVD aims to offer a drug free holistic “I have to say that Ron immediately spotted Thirty-eight years on
the same spot. where famous Russian
solution to symptoms and is a specially my very tense and painful neck when I was and
adapted programme which can even be done doing the QiGong. In front of a church...
Soviet composers,
sitting down! “After the meeting, following a minor artists, and writers are
Ron says: “Tai Chi and QiGong are one and discomfort while it unlocked, my neck has buried daily
the same but QiGong is static in the lower been so much better – almost pain free and
body and uses just the upper body. much more relaxed, so that was a great bonus Don't give up. Moses except Thursday.
“With Tai Chi you are moving all the time. for me! was once a basket In a hotel in Athens...
QiGong is the grandfather of Tai Chi and is case.
better for ME.” For more information go to
Ron explains how Tai Chi and Qi Gong are of www.solihulltherapies.co.uk On the menu at a Swiss
particular benefit to those with ME: “In Tai Visitors are expected restaurant...
Chi we get energy created but not used up; DVDs are available at a reduced price for to complain at the
you can recharge your batteries. members by calling Jenny. Bucharest hotel lobby... office between the
“People doing aerobics may burn out their Ron also holds classes at Olton Reservoir on hours of
stress but they are also burning out their Friday mornings 10-11am. Call him on: 9 and 11 A.M. daily. Our wines leave you
energy.” 0121 745 4084 for more information about nothing to hope for
Ron started attending classes in 2001 whilst these classes, or the DVD.
he was still recovering from ME. The lift is being fixed Outside a New York con-
“I felt like a duck on water, like I’d found This newsletter does not seek to endorse for the next day.
something I connected to.” valescent home...
any one therapy over another, but aims to
He admits that at first he was quite tired but pro- vide a variety of articles on therapies During that time we
adds: “I knew it was right, I knew it would for members information. SSB is not re- regret that you will be For the sick and tired
make me better and have a positive effect.” sponsi- ble for any treatments subsequent- unbearable. of the Episcopal church
ly taken. Always seek medical advice
before trying new therapies.
LETTERS...TEXTS...EMAILS... IN TOUCH...
Thank you as ever for all your in bed. Great for relaxation interaction between members
texts, emails and letters. Do though. Available at Amazon. and help with sharing lifts.
keep them coming via the Maybe some who’d like to
normal routes. You can text Since having severe breathing come but haven’t got
our ME group phone on problems caused by transport. I’d find it easier,
07906 466 682. Or email Jen- intolerance to medication, just a thought.
ny at Propranolol in 2007 then
jlgriffin@blueyonder.co.uk wheat/gluten allergy I have Member, by text
or the newsletter email at been taking pro/prebiotics -
mecentralnews@gmail.com prebio 7 - two per day. Editor: Our committee report
They are expensive but have on page 4 tells of plans to
Re the test for ME featured in certainly improved my IBS introduce a contacts list in
our June issue: too. I also now take a product our Christmas issue. People
called periobalance. One per can give their consent when
“I tried out the test a day, to help protect my gums. they renew membership to go
couple of days ago and came Though I have severe ME the on the list. The list will only Take a look at our new poster range...
out a definite NEGATIVE. improvement in my IBS and go to those members who These are just three in a selection of publicity posters that can be adapted to suit an event
On the website it dose say if breathing has helped in have consented to be part of you may hold, or just for general release. Shirley used the one on the left at her recent
you have taken any antibiotics managing my other symptoms the scheme. school fundraiser and said what a difference it made!
or Probiotics in the previous 6 better. Love Wendy x It seemed to be quite a conversation starter.
weeks this will affect the Try 0800 328 1700 for
results – and I have been Sainsbury’s phone shopping. If you have any ideas of how we can use these posters text or email us:
using probiotics for years as I Select the online option, they 07906 466 682 or mecentralnews@gmail.com
have found them very useful, Have read Tarsam’s piece. It take a few details, then just
I am still very interested in
the idea that it is the resulting
gas coming off from the
so wonderfully captures the
life lost of ME and is so
beautifully written.
give the operator your order,
they will give you details of
their service and arrange a
GIVE AN iPOD A HOME...
Our new iPod lending service Each iPod comes with a
bacteria and not the bacteria His intellect and insight is delivery time. Jo x has got off to a swinging start booklet explaining the key
itself that are the problem.” apparent despite with all three iPods loaned controls and how to get the
serious out in the first three months. most from relaxation tracks.
Kevin, by email illness. I re-read it We now have two of them Your iPod will be posted in a
often. back again, so please do take jiffy bag with stamps for
Is there any info on noise re- advantage of this new returns and the return date
ducing earphones? Company Member, by text scheme. inside the leather case. Please
names and phone numbers? The iPods have been recycle the jiffy bag by using
Can you sleep wearing them? Re Louise’s programmed with a selection the return address label.
Thanks comment that more of relaxation resources and Just text IPOD to Remember, iPods can only be
people should music and are designed to programmed at one computer,
Member, by text go to meetings help members with a daily 07906 466 682 so please don’t be tempted to
(group fundraising rest period that will leave you add anything of your own or
Reply: Sennheiser PXC250 drive, June issue, feeling extra refreshed! With your name and address it’ll wipe the whole thing. If
which are about £50. They p 5) if a contact list Relaxation has been proven in the text or email: you’d like anything adding
are over ear headphones so were available it in studies to help reduce the then email
unless you lie on your back might encourage severity of ME symptoms. mecentralnews@gmail.com mecentralnews@gmail.com
all night they won’t be comfy more friendly So what have you got to lose?
RESEARCH NEWS BOOK ENDS
“Functional characterization of
muscle fibres from patients with FIND OUR LIBRARY LIST ONLINE
chronic fatigue syndrome: case- Dr Darrel Ho-Yen who is a
Many of you have been making use of our new
co-author of the below study
control study.” is best known for his book library service.
Chronic fatigue syndrome is a disabling Better Recovery...which is To make it easier to browse our huge selection
condition characterized by unexplained available to loan from our
chronic fatigue that impairs normal activities. we have decided to put the entire list up at
Although immunological and psychological our blog. You’ll also find extended articles
aspects are present, symptoms related to from the newsletter and are welcome to leave
skeletal muscles, such as muscle soreness, comments. Go to:
fatigability and increased lactate “Learning to cope with chronic
accumulation, are prominent in CFS patients. illness. Efficacy of a
www.me-central.blogspot.com
In this case-control study, the phenotype of multi-component treatment for
the same biopsy samples was analysed by Jenny is happy to send a postal copy of the list
people with chronic fatigue
determining i) fibre-type proportion using to those of you unable to access it online.
myosin isoforms as fibre type molecular
syndrome
marker and gel electrophoresis as a tool to
The aim of the study was to determine the ‘FIGHTING FATIGUE’ TOO NARROW IN FOCUS
separate and quantify myosin isoforms, and nosed patient, whose main used to stabilise the condition.
efficacy of an out-patient, multi-component
ii) contractile properties of manually symptoms are fatigue, However, the version reminds
programme developed for patients with
dissected, chemically made permeable and memory and concentration me of the those I've read in
chronic fatigue syndrome (CFS). Twenty-two
calcium-activated single muscle fibres. problems stress and sleep dis- psychiatric textbooks, and I'm
patients were assessed before and after six
The results showed that fibre-type proportion turbance. There's little on pain not persuaded that it's more
months of treatment. Findings were com-
was significantly altered in CFS and sore throats, let alone effective than the less
pared with 22 individuals on the waiting list.
samples,which showed a shift from the dizziness (dismissed as a complicated strategies
The programme offered medical care as well
slow- to the fast-twitch phenotype. Cross result of stress) or bladder advocated by Jason and
as information and counselling to help pa-
sectional area, force, maximum shortening disturbances (ditto). If you myself. Arguably, the most
tients to understand, accept and cope with
velocity and calcium sensitivity were not “Fighting fatigue. A practi- have ME, you will probably useful chapters are those on
their illness.
significantly changed in single muscle fibres cal guide to managing the not recognise yourself in this memory and concentration
At six months, there were significant
from CFS samples. symptoms of CFS/ME.” Ed- book. The approach to and dealing with others.
differences between the groups for fatigue,
Thus, the contractile properties of muscle ited by Sue Pemberton and management is CBT, there's Finally, there is a summary of
self-efficacy and anxiety. Overall, 82% of the
fibres were preserved but their proportion Catherine Berry. nothing on history or benefits. coping with relapses, which is
treated patients reported feeling better and
was changed, with an increase in the more This is the latest self-help As for causes, viruses are fine for the newly diagnosed,
23% had improved to such a degree that they
fatigue-prone, energetically expensive fast guide aimed at patients with merely triggers and the and a short guide for carers.
were discharged from the clinic. The gains
fibre type. Taken together, these results sup- CFS, where the latter is de- subtext is that CFS is As a whole, this self-help
were maintained at twelve months.
port the view that muscle tissue is directly fined in terms of the 1994 perpetuated by maladaptive guide has a very narrow view
The authors concluded: the programme was
involved in the pathogenesis of CFS and it CDC case definition. To be (unhelpful) beliefs and of CFS and its management
found to be both helpful and acceptable and
might contribute to the early onset of fatigue specific, it's actually directed behaviours. and I would not recommend it
may provide a useful first-line intervention
typical of the skeletal muscles of CFS pa- at a subset, namely, those who The first chapter covers except for patients with a his-
for many patients with CFS and that short,
tients. have not yet learnt to pace pacing and is clear and easy tory of unhelpful beliefs and
pragmatic programmes may be as effective as
cognitive behaviour therapy. themselves and have ended up to follow, even when in a behaviours and a preference
Pietrangelo T, Toniolo L, Paoli A, Fulle S, in a boom-bust pattern of ac- relapse. Although NICE for thought-by-thought in-
Puglielli C in: tivity. might not have been aware, structions.
“Patient Education and Counseling”
www.ncbi.nlm.nih.gov/pubmed/19505395 In a nutshell, this is a basic pacing has been part of CBT Dr Ellen Goudsmit, psychol-
(Goudsmit, Ho-Yen, Dancey.)
primer for the newly diag- programmes for years and ogist and ME sufferer
..LAST WORD...LAST WORD..LA ..RESOURCES...HELP...ADVICE..
The ongoing debate amongst the clear::“UNUM stands to lose mil-
ME community on the primary By Tarsam Singh lions if we do not move quickly to
BIRMINGHAM CENTRE FOR LISIEUX TRUST
purpose of a support group has address this increasing problem”
identified two main camps: the and in the same document INCLUSIVE LIVING 184 Sutton New Road Erdington
first being that such groups should ME/CFS is described as “Neurosis Birmingham B23 6QU
be a befriending and support with a new banner” - a red rag to Birmingham Centre for Inclusive Living is a Monday – Friday 10 .00am - 4.00pm
network for ME sufferers, the psychiatric job creation. third sector organisation and registered
second that the group’s priority This is not conspiracy theory but
should be political campaigning reality theory. If we remain just a charity. It is run and managed by disabled Information and support on a wide variety of
for greater NHS provision, better befriending, feel good factor group people. It aims to work in partnership with issues including:
State funding for research and wel- these lobbying groups will walk all disabled people across Birmingham to Welfare Benefits
fare and promoting greater public over us whilst laughing all the way support and develop the aspirations of
awareness and social recognition. every newsletter and leaflet we to the bank. Employment
individual disabled people (partners)
Of course, it’s a no brainer – there compose and distribute. It is bit by We have to be brave and accept towards independent and inclusive living. Education
is room for both. However, I bit, drip by drip, inch by inch with this responsibility. Members join
would like to posit here the argu- such commitment that we will the groups for not just emotional Leisure Activities
ment that political campaigning make ME a mainstream illness support but organised representa- Mobility/Blue Badge
must be the core priority because thoroughly resourced, tion of their opinions and needs to
there is actually a cause and effect bureaucratically recognised and change official policies and atti- 0121 415 5500 Independent Living Fund Training
in operation: The reason new with a positive social profile. tudes in favour of ME. I know this Radar Keys
members turn up at the group is This will not be easy. We have to sounds dreary and dull yet who
partly the direct result of the sys- be real. Power is not given but else but us, will carry the fight for www.bcil.org.uk
temic mistreatment and negligence seized. ME occurs in a context of ME rights and advancement? We 0121 382 6660
of ME sufferers that prevails. limited resources, lobbying power- can’t leave this up to the officials 07933 473 483
People’s isolation and weariness is ful by vested interests and popular or politicians because they don’t info@lisieuxtrust.org.uk
not only caused by ME but also as media sensationalism. This is the really understand what is involved; www.lisieuxtrust.org.uk
an effect of the institutional abuse way the world works. ME has to similarly, the NHS practitioners
they experience for having ME. It compete with all kinds of other have no real incentive and it is out-
follows, therefore, that we can on- needy groups and illnesses. This side of their remit. It is only us
ly prevent this occurring by fight-
ing and campaigning for ME rights
involves a sustained combat and
scrap with drug companies, insur-
who can really move forward ME
demands.
ENABLE-SOLIHULL
on a long term, organised and con- ance groups and psychologist in- It is my belief that in a hundred
certed basis. terests who all have important years ME will be treated entirely Enable-Solihull is working in partnership with care and support organisations in Solihull
In the light of the stunningly incor- lobbying priorities to maintain differently and no longer as a to prepare service providers and individuals for the introduction of new personalised
rect High Court decision that there presence and profit portfolios “controversial” condition but in- management of social care provision.
judged in favour of endorsing the within the NHS and Welfare are- deed a mainstream illness. Who
current NICE guidelines on ME nas. knows they might even have found
this campaigning becomes even For example, GPs receive on aver- a cure for it. Either way, this cur-
more important. Make no mistake, age four visits per month from rent era of distress and maltreat- A unique voice in Solihull bringing together over 30 disability support organisations,
friends, this appalling decision has drug reps and five promotional ment ME sufferers experience representative of a diversity of disability needs. Networking and signposting organisation
set back our cause dramatically. It drug mailing every week. One in from the white collar and white for disability support groups
is imperative that we do not de- four are sponsored to attend con- coat brigade will be looked back
spair and relax our political efforts ferences all expenses paid by drug upon with horror. Thus, we must Member organisations include those representing people with physical and sensory
and retreat into the social and life- companies. Coincidentally, antide- assume the only honourable histor-
style side of group focus too far. pressants current prescription costs ic position available to us now
disability, users of mental health services and of learning disability services and the needs
We must continue to fight the are over £3 billion which is third which is to fight with all our hearts of carers.
good fight in every letter we write of the entire mental health NHS and minds for the ME cause. We
to our MP, poster we get put up on budget. have to be brave and accept this Set up with support from the Community Fund, Solihull MBC and from the Lloyds TSB
our local surgery or Library wall, The UNUM Provident insurance responsibility. Foundation
every meeting we attend, every company is heavily involved with Tarsam has asked us to make it
fund raising activity we engage in, the DWP and the UK welfare sys- clear that these are his personal
every report we compile, every
protest and petition we embark on,
tem. UNUM’s “Chronic Fatigue
Syndrome Management Plan” by
views and that he welcomes any
responses to his article via the
0121 788 1554
every research we help facilitate, Dr Carolyn L Jackson makes this usual newsletter contacts

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