SOLIHULL & SOUTH B’HAM

M.E. SUPPORT GROUP

About Us
The Solihull and South Birmingham M.E Support Group is an independent, self supporting group run SOLIHULL & SOUTH B’HAM
informally by the members for the members M.E. SUPPORT GROUP
“supporting sufferers and their families”
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

URGENT CALL FOR
We have monthly meetings six times a year; usually on the second Monday of each month (except Janu- FAIRER PROCESS
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, Shir-
CHARITY and patient ‘partnership
ley groups have spoken out working’, said
New members are always welcome about unfair benefit their group or
Friend of decisions and the problems charity had direct
Tel:O121 689 0777 facing those with invisible experience of
disabilities. negative decisions
And they are calling for on benefits that
Other Support Groups benefit doctors and had gone to ap-
decision-makers to be peal.
equipped with better knowl- Jenny says: “We
Walsall and West Midlands ME LINK:
edge of ‘hard to understand’ were effectively
disabilities or illnesses. saying ‘what part-
www.walsalldisabilityforum.com
SSB attended a Birming- nership working?’
Go to ME Link under member organisations
ham Ipsos Mori workshop The striking thing Complex indeed...
for the DWP. Also present was the similarity in prob-
walsallmelink@btinternet.com fibrowalsall@btinternet.com
were representatives from lems faced by all the groups “All had experienced a
Tel: 0871 7503850 between 9-11am Tuesdays and 4-6pm Thursdays
learning disabilities charity and charities present. Rath- large number of negative
The Rathbone Trust, The bone, Headway and The decisions that went to
Disability Resource Centre HIV community team all appeal. We said benefit
National Groups in Yardley, DIAL in expressed difficulties in ob- doctors and decision mak-
Worcestershire, brain inju- taining benefits when peo- ers should have much more
Fibromyalgia Association The Young ME Sufferers ries charity Headway and ple suffered from ‘hidden’ knowledge and experience
25% ME Group (for severe the Adult and Communities disabilities or illnesses of each of these disabilities
ME): UK: (TYMES) Trust:
0845 003 9002 HIV team, who hosted the which were poorly under- and illnesses.”
01292 318 611 0870 752 5118 event. stood - very much in the turn to page 8...
www.fibromyalgia- www.tymestrust.org
www.25megroup.org Every representative at the same way that people with
associationuk.org Sponsored discussion group, called ME experience. In This Issue...
DIAL UK: 01302 310 123 By:
Action for ME (AfME):
0845 123 2380 ME Association (MEA): Disability Resource Centre MPs NEED YOUR INPUT Group Campaigning
www.afme.org.uk 0870 444 1836 Birmingham: AN inquiry into NHS ser- www.appgme.org.uk/inqu
www.meassociation.org.uk 0121 789 7365 vices for ME/CFS needs iry/inquiry.html and fol- IPOD & Library Launch
www.disability.co.uk you! low the instructions. The
Association of Young Peo-
ple with ME (AYME): The All Party Parliamentary APPG accepts the World Probiotic Research
ME Research UK: Carers Centre Birmingham: Group on ME wants contri- Health Org classification of
0845 123 2389 01280 816115 0121 678 8000 butions - deadline of June ME as a neurological condi- Members’ Articles
www.ayme.org.uk www.meresearch.org.uk www.birmingham- 30.To participate in the sur- tion and wants the NHS to
carers.org.uk vey: as well. So get writing! Your Feedback
JENNY WRITES...
Hello Everyone
Thanks for all your phone calls and emails in
the last couple of months. It’s really good to
hear from you.
I think we have just about covered the A-Z of
ME during this time and it is very clear that,
whatever ‘they’ say, things are not improving
a whole lot for many of us. Definitely, the
benefits are getting tougher to obtain and we
still seem to have a whole raft of GPs and
employers whose understanding of ME is
sketchy to say the least.
“But we won’t get down hearted;
we’ll keep on fighting back!”
First of all we have kept our sense of humour
– thanks for all the laughs on the phone and in
our emails, in spite of all the difficulties and
hardships you are facing.
Secondly, as you can see from this newsletter,
we are continuing to make our voices heard,
and we are helping ourselves and each other to
get through the bad times. I hope that some of
you will be able to get the information leaflets
(enclosed) to your GPs or local libraries, com-
munity centres etc. I know it’s not possible for
everyone, but if we can reach just a few more
people with ME and offer our help and support
then our job for this year’s raising ME Aware-
ness will be done. Thank you!
I am going on holiday for week on June 20-27
just in case you wonder where I’ve got to! I am
really looking forward to the rest and sea air.
In the last few weeks I have had mumps –
which was not at all what I expected at 63! I
am much better and non-infectious now, you’ll
be glad to know.
Enjoy your summer as much as you can –
here’s hoping for some nice warm weather,
not too hot though! And don’t forget to keep
in touch,
Love
P.S. We are hoping that the patients’
questionnaires for the All Party Parliamentary
Group for ME Inquiry into NHS services for
ME/CFS will be available to post out in this
newsletter but, if not, we will do our best to
make sure you get one soon as possible.
Everyone should have their say on this.
Do have a look at:
www.appgme.org.uk/inquiry/inquiry.html
for more information on terms of reference
and how to submit evidence.
Note that submissions of evidence have a
deadline of June 30.
Yes, I know a very short time indeed for us
people with ME. Don’t think we haven’t said
this already but MPs are keen to get this
finished in case there’s a general election soon
- Jenny
Inside This M.E. Central
ISSUE
SOLIHULL & SOUTH B’HAM
M.E. SUPPORT GROUP
This issue has been a real pleasure to put
together. What strikes me most of all is that
it’s a very active newsletter - no mean feat for
people with ME.
But if you flick through you’ll see the group
2 Jenny Writes busy everywhere...raising funds for ME
Awareness on page 5, which features Jo and
Tarsam putting together a brilliant campaign
4 Group News for MPs.
Another fundraiser is planned for June, com-
ing soon to a garden near you (page 14)
6 In Touch
The launch of a new ipod lending scheme
appears on page 7 and a new library lending
8 ME News service on page 26.
Wheelchair services will now have to recogn-
ise ME in their selection criteria - p8.
10 Research News: Probiotics We thank new member Patrick for his article
on being part of a support group, page 6.
12 DWP Assessments Tarsam launches a regular column - we’ve
literally given him the Last Word (p24)
The Countess of Mar, a leading ME cam-
13 Therapy: Acupuncture paigner, agreed to an interview! - see p16
And there’s important research on the bene-
fits of probiotics, plus news on the ME test kit
14 Open Gardens invite
that’s hit headlines recently.
Keep in touch, by email below, or by text:
16 Q&A The number (for text or voice messages only):
07906 466 682
18 Hints and Tips
19 Your Letters
M.E. Central is published quarterly, and
aims to reflect the interests and concerns
20 The Big Read of members of Solihull and South
Birmingham M.E. Support Group. All
22 Research News submissions are subject to editing by the
editorial team. All rights reserved.
We welcome articles and ideas from
23 Comedy Central members, either named or anonymous.
Please email:
mecentralnews@gmail.com
24 The Last Word
jlgriffin@blueyonder.co.uk
26 Book Ends
 ME NEWS...GROUP NEWS...ME NE
Your committee:
from left to right -
Alan, Jenny, Jo,
Louise and
Tarsam
LATEST COMMITTEE MEETING REPORT
Our May meeting was held at
Jo’s house and attended by Jo,
Louise, Jenny and Alan.
Tarsam sent his apologies as
he was not up to travelling on
the day in question.
Correspondence:Letters were
sent out on behalf of the group
to Sustain, Solihull Communi-
ty Fund (Grassroots) and to
Colin Smith of the DBC,
thanking them all for their
help in obtaining our Grass-
roots grant. The final draft of
the letter to be sent to MPs for
ME Awareness Week was ap-
proved. It was decided to post
out letters and info packs to
MPs and to email any known
prospective parliamentary
candidates.
Coordinator’s report: The
committee was updated on
campaigning issues. It was de-
cided that ME Awareness
should be put on the agenda
for a committee meeting well
in advance of next year’s 2010
Campaign to give ourselves
more time to prepare! Jenny
stated she is to attend the next
User Voice meeting and report
back. Jenny also attended (by
invitation) a DWP discussion
group – see separate reports
in this newsletter..
Newsletter report: All feed-
back on the May newsletter
was very positive and Louise
outlined the plans for the June
newsletter. It was decided to
enclose group leaflets and up-
dated doctors’ surgery notices
in the June newsletter for
members to distribute when
and where they could. Louise
has designed a range of ME
group posters, but we deferred
discussion of these until the
next meeting, owing to short-
age of time.
Fundraising: Following our
very successful ME Aware-
ness coffee morning it was
decided to bank any monies
raised through the year and
that members should decide
how to use this at a group
meeting towards the end of the
financial year.
Treasurer’s report: The
money from Grassroots is now
in our account and it was
agreed that this money should
be carefully monitored and all
expenses recorded. We are
now in a position to be able to
provide a library service to
members, and the purchase of
books was discussed. The
grant also allows for the pur-
chase of Ipods which Louise
volunteered to programme
with relaxation tapes. It was
agreed that we will initially
purchase three Ipods. These
will be available, on loan from
the Group, at no charge to
members in the near future.
Charitable Status: Alan ex-
plained the pros and cons of
charitable status for our group.
It was felt that expanding our
fundraising efforts to become
a charity was unnecessary and
potentially beyond our scope,
as it is people with ME who
run the group. The committee
decided that it was probably
unsuitable for us at the
moment.
Democratic process: Jo dis-
cussed how we can receive
feedback from members on all
matters and why this should
be welcomed and encouraged
in any democratic group. The
committee agreed that our
main aim is to carry out the
wishes of the members and
that we should encourage as
much feedback and input from
members in as many ways as
possible. It was suggested that
thought bubbles be available
at all meetings to gather mem-
bers’ thoughts and wishes.
Any other ways of canvassing
ideas from members should be
explored regularly.
Our thanks go to Jo for her
generous hospitality. Next
meeting: July 20. Suggestions
welcome..
ME NEWS...GROUP NEWS...ME NE
GROUP EFFORT FOR
ME AWARENESS
We had a great ME awareness
meeting in May. It was lovely
to see 12 of our members and
some of their families on what
turned out to be a nice sunny
May day.
Jo and Louise did a stall to
raise money for ME research - Patrick, Mary and friends chat over a cuppa...
the cakes and the jams were
delicious! They raised over people with ME. I was a bit
£50. This will be put aside nervous as I don’t really cope Our appeal to MPs
until the end of the year when well with crowds but every
we shall all decide on who to one was really friendly and I’d Jo and Tarsam compiled a
donate it to at a group meeting. encourage more people to letter to MPs, which was put
Jo, our Outreach member, in- come along. Jenny’s house is with the thought bubbles, our
troduced us to ‘thought a lovely, welcoming and com- May newsletter (with the West
fortable place.” Midlands Groups enclosures),
a group leaflet and a blue rib-
bon.
In total, 22 MPs and 21
prospective parliamentary
candidates across the Mid-
lands were contacted. We had
messages of support from
Roger Godsiff MP and Cllr
Deirdre Alden.
bubbles’ – her inspira-
tion for ME awareness week!
Everyone had a piece of paper
in the shape of a thought bub- All in all, a most enjoyable
ble on which they could brief- and productive meeting.
ly write what they would say
to their MP about ME, if they
could speak to them.
Even with all this going on,
we still had time for a good
relaxing chat. It was Louise’s Contribute a thought bubble for future
first time at a meeting. She campaigns! Turn to page 19! Or text
your burning issue to:
said: “It was really lovely to
finally meet some other 07906 466 682
 TOUCH...IN TOUCH...IN TOUCH.. IN TOUCH... IN TOUCH...IN TOUCH
medical profession think pa- “Having thought about and
WHY SUPPORT tient support groups should be rejected various forms of exer- RELAX WITH OUR NEW
GROUPS MATTER! discouraged because they cise (croquet – it’s hard work
spread negative attitudes retrieving the balls from the IPOD LENDING SCHEME
We welcome among patients. I disagree. shrubbery; cycling – all those
new member “They provide emotional and hills; swimming – too cold) Relaxation is known to help get the most out of a daily
Patrick who practical support. Apart from now I’ve just started a tai chi ME sufferers manage their relaxation programme.
shares his losing one’s career, having class. It’s like dancing in slow condition. If demand proves high, we
views on the And it is clear that many of will expand the service. Your Ipod will be posted in a
importance of
ME also leads to loneliness motion.
being part of since most forms of socialis- “I’ve registered with a GP for you benefit from daily medi- Each Ipod has been pro- jiffy bag with stamps for re-
an ME support ing involve physical or mental benefit purposes but haven’t tation practices. grammed with a relaxation turns and a reminder card for
group. activity. I suppose we’re lucky seen him yet. In fact over the An Ipod is a really neat way library of various meditation the return date to stick some-
to live in an age of technology past few years I’ve only seen of keeping all your relaxation and breathing techniques, as where prominent! Please re-
“I moved to Birmingham when we can do so much from a doctor when they’ve called techniques in one place. But well as some relaxing music cycle the jiffy bag by using
from Bristol in March. I was home on the internet. me in to the surgery. I don’t perhaps you’ve not got an for you to enjoy. the return address label.
here at university 20 years ago “I was involved in organizing expect anything in the way of Ipod, or don’t want the hassle Remember, Ipods can only be
and I always thought of Bir- Bristol Group. We had local treatment or support from the of loading one with tracks. All you have to do to borrow programmed at one computer,
mingham as being flat com- subgroups and a contact list. NHS.” We have used some of our an ipod is text the word ipod so please don’t be tempted to
pared to Bristol. Now I have Social groups were tried but Welcome to our group Patrick and Grassroots funding to enable plus your name and address add anything of your own as
ME, there seem to be hills ev- fizzled out after a few months. thanks for sharing your views with members to enjoy daily relax- to: it’ll wipe the rest of the tracks.
erywhere. We tried Needlework, Art us. ation by purchasing three If you’d like anything adding
“I was relieved to see there Group (only group still go- Do you have an idea for an Ipods to lend out to members 07906 466 682 then instead please contact
was an ME support group in ing), Book group, Scrabble, article? Email us at: on a monthly basis. mecentralnews@gmail.com
Birmingham. Some in the Poker. Each Ipod will come with a Or email: We hope you enjoy this new
mecentralnews@gmail.com selection of tracks and an in- service, and would love to
struction booklet on how to mecentralnews@gmail.com hear your feedback!
JUNE: HAPPY DIARY DATES
BIRTHDA MANY THANKS
Jo Taylor Y Open Gardens fundraiser NEW CONTACTS CARD
We are very grateful to the Sundays June 21 and 28,
Wendy Vincent Inner Wheel Club of Solihull 2-5pm: Louise’s house, 7 Keeping in touch with the please use the mobile for texts
Goldsmith Road, Kings Heath group has never been so easy only. Your contacts card also
Judith Jones who presented us with a
Birmingham B14 7EH with this handy contacts card. tells people you are part of our
cheque for £30.
Keep it in your purse or wal- support group, in case we
AUGUST: Members elected to give the
proceeds of their charity col- June 30: Deadline for APPG let, or stick it to the fridge! need to be contacted.
JULY: Mary Denby lection to Solihull and South questionnaire submissions You’ll find Jenny’s main
Birmingham ME Support (see front and page 2) contacts plus the
Lin Cook Phil Evans Group. mobile for
Mary Donelan Mark Holland We are extremely pleased that Next meeting: Monday July texting your feed-
the club chose to recognise us 13, 1pm-3pm at Jenny’s: 59 back, and the
Hilary Jones Stephen Moss and will decide at the end of Cartland Road, Stirchley website and blog.
the year how to use this much- B30 2SD Outreach
Hugh Jones Mary Duncan appreciated boost to our funds. requests should
NO meeting in August always be made
Rebecca Greenhill via Jenny. And
 ME NEWS...GROUP NEWS...ME NE
NHS WHEELCHAIR
SERVICE U-TURN
NHS chiefs look set to pro-
vide power wheelchairs for
Midland people with ME.
Louise, our newsletter co-edi-
tor, has had a three year battle
for a power chair.
On applying for an NHS
wheelchair in 2006, she was
told she qualified only for a
manual wheelchair which she
could not use.
“I was given no alternative,
and was told I couldn’t have a
power chair” she says.
“I had to explain to them that
it wasn’t practical to expect
me or anyone with ME to use
a manual chair, because I
can’t self-propel. In fact what
I needed was an electric out-
door chair.” It is only through
enlisting the help of Birming-
ham Law Centre and her MP
Dr Lynne Jones that Louise
got the chair she needed. She
said: “I see this as a victory
for all, rather than a personal
one. I did very little to win
this battle. My solicitor Faith
BENEFITS EXPERTS NEEDED IN REGIONS SAY GROUPS
from front...
It was suggested that one
‘expert’ for each illness
should be available in every
benefits region.
Everyone agreed that the
communications with the
Pension Disability & Carers
Service are poor and that the
service is too centralised.
Ryan fought on my
behalf, and her ef-
forts show how in-
valuable support
from an advocate
can be in tough situ-
ations.”
Birmingham Wheel-
chair Service
confirmed that a
review of the issues
identified had taken
place and Divisional
Director Marie Ward
said: “ Work is underway for
the service specification for
the overall Wheelchair
Service.”
In a recent letter to Louise’s
MP from Moira Dumma,
chief executive of South
Bham PCT, it was confirmed
that ‘the needs of people with
ME and CFS were not recog-
nised in the existing contrac-
tual arrangements and that the
access criteria for the wheel-
chair service would be dis-
cussed with commissioners
Jenny says: “It was felt there
was no one to access directly
about local issues. New
information or changes in
benefit rules usually have to
be found by the groups or
charities themselves.”
The outreach service run by
Colin Smith of the Disability
The slowest wheelchair ever?
when the contract was due for
review and renewal.
"...Access to wheelchair serv-
ices for people with ME/CFS
has been discussed by the
wheelchair service and com-
missioners and the recently
appointed Director for the
Specialist Services Division
(which includes the wheel-
chair services) undertook a
review of the issues identified
and presented the findings to
commissioners on May 13."
Benefits Centre was the only
partnership working anyone
mentioned.
As a result Ipsos have been
asked to continue this debate
on line. Jenny can be emailed
with your contributions:
jlgriffin@blueyonder.co.uk
ME NEWS...GROUP NEWS...ME NE
NEW TEST FOR ME NOT YET PROVEN
A NEW home urine test kit
purporting to diagnose ME
has been greeted with caution
by experts.
The test developed by Belgian
scientists led by Prof Kenny
De Meirlier is based on the
hypothesis that people with
ME/CFS are producing exces-
sive amounts of a chemical
called hydrogen sulphide
(H2S) and that this abnormal-
ity can be measured by a spe-
cific urine test (that measures
an H2S metabolite/by-
product).The imbalance is
claimed to be due to over-
growth of certain lactate-pro-
ducing bacteria in the gut
BE HEARD...USE YOUR VOICE!
PATIENTS led the way at the
latest User Voice meeting
with complaints about waiting
times and communication
problems with the local
CFS/ME NHS clinic.
The clinic said it is seeing an
extra four patients a week un-
der their new priority system
– brought in due to a near
breach of the rules on waiting
lists. The service has also ex-
panded into Solihull.
Jenny represented SSB at the
meeting on May 27:
“The majority of the com-
ments were about waiting
times, lack of communication
and such irritations as lost
records and delayed blood
tests, all of which contribute
Dr Charles
Shepherd urges
caution
over home test
kit for ME
coupled with the presence of
metal intoxication in the
body. It is also claimed that
the problem in the gut can be
successfully treated through
changes in diet, probiotics and
antibiotics.
The urine home test kit is on
sale for £13. It has to be or-
dered from abroad and is not
Have you used the test? Text us:
available on the NHS.
Dr Charles Shepherd, Medical
Adviser to the MEA says:"I
to rising stress levels and fall-
ing energy levels.”
Sue Clarke, Nurse Therapist
from the Birmingham NHS
clinic explained they now
have a triage system in place
for prioritising patients at the
Barberry Centre, and run self
management courses in Soli-
hull which include pacing,
lifestyle, and a small amount
of CBT, in accordance with
the NICE guidelines.
Jenny adds: “Sue mentioned
they are looking for other
venues for these courses -
particularly venues with
ground floor access, good bus
routes, parking and, if possi-
ble, a coffee bar on site.”
Suggestions welcome. Jenny
says: “I was pleased to note
have looked at the scientific
information upon which this
test is based. While it’s an
interesting hypothesis, the test
itself cannot yet be regarded
as a scientifically proven diag-
nostic test for ME/CFS.
"Until we have further results
from several good quality in-
dependent studies, we can’t
yet say a significant factor in
the causation of ME/CFS has
been discovered and that a
simple urine test is now avail-
able for diagnosing ME/CFS.”
07906 466 682
Or email us:
mecentralnews@gmail.com
that SSB attendance at User
Voice was welcomed by their
new development worker Stu-
art who asked for some of our
leaflets for distribution at fu-
ture meetings.”
Anyone who is interested in
attending future User Voice
meetings (Uffculme Centre,
Kings Heath, last Thursday of
the month, 11am-1pm) can
contact Stuart on: 0121 301
2009 or email:
stuart.talboys@bsmhft.nhs.uk
User Voice means people
with ME can be involved in
how the local NHS clinic is
run. Service users at meetings
can contribute without giving
their name. The clinic can be
contacted on: 0121 301 2290.
RESEARCH NEWS
CAN FRIENDLY BACTERIA
Many people with ME suffer gastrointestinal
disturbance and low mood. But now there’s
a gut feeling on friendly bacteria...
Taking a daily probiotic sup-
plement improves anxiety in
patients with chronic fatigue
syndrome, new Canadian re-
search suggests.
The researchers, led by A.
Venket Rao of the University
of Toronto, found that giving
patients with chronic fatigue
syndrome (CFS) a probiotic
for two months not only
boosted so-called "good" bac-
teria in their stomachs, it also
led to a significant decrease in
their anxiety symptoms.
A probiotic is a dietary sup-
plement, most often in pill or
powder form, that contains
live bacteria such as Lactoba-
cillus or Bifidobacteria. These
bacteria help maintain gut flo-
ra, microbes in the stomach
that perform a variety of func-
tions, including aiding diges-
tion, boosting the immune
system and warding off harm-
ful bacteria.
"We were quite excited with
the fact that these were posi-
tive results and we felt that
probiotics truly have a role to
play in the management of
neurophysiological disorders
such as anxiety, such as de-
pression and other symptoms
associated with that," Rao
said.
"Rather than going into medi-
cations, which may result in
side effects, it's a safe, it's a
very easy way to manage
problems such as that."
The findings are published in
the journal BMC Gut Patho-
gens.
CFS patients often complain
of gastrointestinal problems
and many are diagnosed with
digestive disorders such as ir-
ritable bowel syndrome. Tests
show that they often have low-
er levels of so-called "good"
bacteria in their stomachs,
which can regulate digestive
activity.
The researchers explored links
between gut pathogens and
emotion and anxiety in the
absence of an immune re-
sponse and early findings sug-
gest that bacteria levels may
influence behaviour related to
anxiety and depression.
Researchers believe that pro-
biotics "crowd out" the more
toxic stomach bacteria that are
linked to an increase in de-
pression and other mood dis-
orders.
For this study, the team gave
39 CFS patients either three
www.timesonline.co.uk
Look for the right dose on the bottle
doses of Lactobacillus casei
Shirota a day after meals, or a
placebo, for two months.
They found that 73 per cent of
subjects taking the probiotic
experienced an increase in
levels of Lactobacillus and Bi-
fidobacteria in the gut, which
corresponded with a signifi-
cant decrease in anxiety
symptoms.
In the placebo group, only
37.5 per cent showed an in-
crease in Bifidobacteria, while
only 43.8 per cent showed an
increase in Lactobacillus bac-
teria. The researchers found
no statistically significant
change in anxiety symptoms
among this group.
RESEARCH NEWS
BANISH THE BLUES?
provement in their diges-
tion, experiencing less
bloating and gas and a
reduction in inflamma-
tion.
The findings are "huge,"
Bested said.
"(Subjects) felt less anx-
ious, they felt calmer,
they felt better able to
cope with their illness,
they were sleeping bet-
ter, had less heart palpi-
tations and less
symptoms of anxiety,"
she said.
www.media.skinmdnatural.com Rao explained that the
According to Bested, Bifido- good bacteria produce
bacteria appears to increase "compounds that get to the
levels of tryptophan in the brain and help the brain to
brain, a chemical that "helps manage problems associated
people feel better." with behavioural and mood
Patients taking the probiotic problems, such as anxiety and
also showed a marked im- depression."
Probiotic drinks and supplements Also check the label for prebiotics
are better than yoghurts as they (edible fibres that help pre-existing
contain more friendly bacteria. But healthy gut flora to flourish); you'll
beware, some probiotic drinks are need at least 5g prebiotics a day for
full of sugar. More than 10g per a real effect.
100g is considered high, so if
you're diabetic or watching your Prebiotics will be listed on the
sugar intake, it's best to opt for a
label as inulin or fructo-oligosac-
pill. charides. If you're prone to diar-
rhoea or bloating, don't take
Look for products containing prebiotic-laden formulations
both bifidobacteria and lactoba- without professional advice.
cilli. They don't play vastly dif-
ferent roles, but taken together Make sure the probiotic dose is
they promise a better bacterial high enough; you need at least ten
hit. million live micro-organisms. Rep-
YOUR FINDINGS
Are you interested in taking a
probiotic?
We are keen to hear about
what products you find and
how you get on with them.
Jenny can be contacted for
more guidance on which
products can help, and the staff
at health food stores will be
happy to advise about the
various strains.
Remember, if you have IBS or
diarrhoea, seek medical advice
before taking any probiotic
product.
Let us know how you get on:
Text:
07906 466 682
utable probiotics will list the strain
and number of live microorgan-
isms on the label - most of the
drinks available in the supermarket
will have around this amount.
Always consume refrigerated
drinks before the expiry date as
they're likely to become ineffec-
tive.
You need to take your probiotics
every day to see the benefit - it's no
good leaving days in between hav-
ing them, whether you're taking
them short term or for longer.
 HELP! I’VE GOT A BENEFITS MEDICAL! THERAPY UNCOVERED
At least every three years all people on disabil- the Doctor and the claimant say “This is the oldest style of acupuncture and
and do. Especially note any PINPOINTING ME RELIEF basically categorises people into one of five
ity benefits are required to send in form IB50, aggressive attitude or manner ad- elements - fire, earth, metal, water and wood.
and attend a medical (if they can travel). opted by the Doctor. Note the ex-
These elements exist in nature as one of the
Here’s how to cope should you be called to one: act words spoken.
five seasons summer, late-summer, autumn,
Intervene and ask for the examina-
tion to be halted if the claimant
Acupuncture has been used successfully to winter and spring and each element has it's
So your GP has sent off the also a watch. Take your medicines, becomes unwell or distressed. The alleviate ME, CFS and fibromyalgia. own colour, sound odour and emotion. “
relevant forms...and now and any aids you use, such as a claimant should have a break until It works by literally pinpointing meridians, or Annie and Julie look to see which element
you face a medical. What walking stick or crutches. they feel well enough to continue. acupuncture points and aims to rebalance ener- dominates within a person.
next? You can claim travel expenses for Object to and stop any attempt by gies in the 12 main channels connected with “As acupuncturists we diagnose the one cry-
First, try discussing the reality of going to the examination - but if the Doctor to have the claimant do organs in the body. ing out for help. When we treat this element,
your illness and the limitations you you need to take a taxi you must exercises which could injure or The benefits to those with fibromyalgia have via its associated meridians, then the body
face with someone who knows contact the DWP beforehand. distress them. You should have the been confirmed in a large study - and there are comes back into balance and symptoms ease or
both the illness and yourself well. At the examination... examination stopped if the claim-
ant is becoming ill or distressed for
many parallels in ME/CFS. disappear.
The reality of your illness is what Acupuncture can help restore energy levels The benefit of group treatment is primarily the
must be presented to the doctor You should be aware that the ex- any reason. If the claimant is not
and to the DWP. amination begins on entry to the fit to continue then the examina- and alleviate pain and exhaustion. cost, but also tin creating a feeling of commu-
examination centre and does not tion should be postponed until an- It does not aim to be a cure, but can help with nity and friendship:“If the same people return
You may have been ill for so long end until you leave the centre. An other day.
you’ve forgotten how it affects
symptom management. at the same times with similar ailments then
evaluation of your medical condi-
your daily life. If the claimant's distress is due to But many people with ME are on reduced they might provide mutual support,” Annie
tion does not only take place when
mistreatment by the doctor, stop incomes and are put off by the cost of engaging adds. Acupuncture can help with symptoms
Always have someone ac- you are in front of the examining
the interview, then say that you in alternative therapies. found in ME including:
company you. This is your doctor, but also potentially on your will be making a complaint with a
way into the building, in the wait-
request for an examination at a fu-
The Natural Health Centre in Kings Norton
right. ing room, and on your way out.
ture date with a different doctor. has come up with a solution. muscle stiffness
You are legally required to attend a By seeing several patients at once in a large
The Doctor should: At the end of the examination ask pain
medical, and the information ob-
the Doctor to read back their room (partitioned to provide privacy) the clinic insomnia
tained is used to decide your enti- Spend some time explaining the
tlement - so make sure your legal purpose of the examination. notes.If the Doctor refuses, then hopes to make acupuncture an affordable treat-
note that and what reason he/she ment option.
temperature control
rights are protected. ASK if you are willing to be exam-
gives. If there seem to be any inac- Acupuncturist Annie Pottinger says: “The aim anxiety
If the examination date is not suit- ined.
curacies in the Doctor's notes, of the multibed clinic is to make acupuncture
able get it changed. If you are un- ASK you and give you time to ex-
check with the claimant, then if
able to travel ask for a home visit plain YOUR OWN VIEW of how more accessible.” The first treatment is on a
necessary ask the Doctor to change If you are interested in attending a session with
instead. If you change the arrange- you are affected by your condition.
their notes. If they refuse then one to one basis due to the need for privacy
ments over the phone write to con- regarding medical history, and costs £25 but another group member, contact Jenny on 0121
NOT attempt to 'manipulate' parts make a note of that, writing down
firm the changes. You have the
exactly what they said. the follow ups are in a larger room with 2 or 3 689 0777 to see who else is interested.
right to be seen by a Doctor of the of your body.
same sex. You should: Afterwards... beds and cost £15.
“The appointments are staggered to allow time The Natural Health Centre, 86 The Green,
Meet the accompanying person Make sure the Doctor realises the If the Doctor did anything wrong, Kings Norton, B38 8RS holds multibed clinics
beforehand to discuss what's going then write a letter of complaint to to discuss how treatment is progressing, and
full extent of your illness/ disabili- on a Tuesday morning and early afternoon.
to happen. Before the examination ty, including any other conditions/ the DSS immediately - don't wait then needling is done. If needles are left in
you should be clear it can be halted for the decision to come through. them we might go and treat another patient and Call 0121 459 3535 to discuss further.
illnesses you may have.
to allow you to go to the toilet,
Describe how you feel on a "bad
The letter should be signed by both then come back.
have a glass of water, take a pill, or the claimant and the accompanying “Screens are put up between the couches for This newsletter does not seek to endorse any
day", rather than on a "good day".
if you feel faint or ill. The exami- person. More info on making a modesty, but otherwise conversations can be one therapy over another, but aims to pro-
nation should only proceed if you The person accompanying complaint is in the Disability vide a variety of articles on therapies for
feel happy to continue. Rights Handbook which you can overheard, so I never tend to discuss personal
you should: members information. SSB is not responsi-
borrow from our library (p26). issues unless raised by the patient.
Refuse to do anything that Write down the name of the Doc- Both Annie and colleague Julie Reynolds are ble for any treatments subsequently taken.
hurts or distresses you. tor, the place of examination, the Information originally published Always seek medical advice before trying
start and finish times and any
five element acupuncturists. Annie explains:
by the Edinburgh Coalition new therapies.
The person accompanying you
breaks. Take notes on everything Against Poverty
should take a pen and paper and

As Moseley throws open its doors for Open
Gardens weekend, Louise wonders how
accessible it all is...and finds a neat solution
The open gardens scheme But there is a snag. My son
appeals to me on many levels. and I have visited Moseley’s
As a somewhat inactive gar- Open Gardens since they
dener I enjoy seeing other started a couple of years ago
people’s creativity. And as a and to be honest, not many of
person with ME I cannot them are very accessible.
think of a nicer way to spend Both years I’ve been forced to
a couple of hours than sitting try and do without a wheel-
in the quiet confines of a chair and get between houses
green idyll that’s just minutes on foot. Last year I ended up
down the road from me. Plus getting taxis between venues
I top up my vitamin D levels that were just a stone’s throw
by venturing outside. away from each other.
There are of course many plus
points to plan-
ning a quiet af-
ternoon visiting
local gardens.
There is invari-
ably tea and cake
on offer. Many
have extensive
patios with plen-
ty of seating or
benches dotted
around.
INTO THE GARDEN
THIS SUMMER
w You are cordially invited to
7 Goldsmith Road B14 7EH
Sundays June 21 and 28
So if you are tired
before you even
start, you can get
your breath and w
just admire the
view. And take your camera!
This year, I’m planning on
doing it differently.
I’ll be visiting Moseley’s
gardens in my power chair -
so at least I get to move
around a bit easier.
And I’ve also decided to open
my own garden on two Sun-
days this June because I want
to offer people with ME an
alternative to struggling with
uneven paths, steps galore
and narrow entrances.
My garden is a traditional
long strip at the back of my
terraced house. It is 100 per
cent accessible as it was de-
signed with my wheelchair in
mind. I store it outside as it
won’t go in the house.
The only step is a low one
leading to decking at the top
of the garden. The path I had
put in is wide enough to
w
Louise’s
Open Garden Days
2pm - 5pm
Entry £2 take
a wheel-
All proceeds go to the group chair all
Refreshments will be served w the way
to the
top,
where there is a space to sit
and rest by the pond. There’s a
lawn, my greenhouse, flowers
and vegetables. I’m planning
on doing a small stall to raise
money for the group.
So do join me in June at one
of my own Open Garden
days. Entrance via side gate!
w of varying height, colour and design. Now maturing into a
I’ll still be visiting Moseley
gardens myself and recom-
mend you give it a try too.
Having looked at the
programe for this year, I think
the Moseley Triangle tour on
Saturday June 20 is your best
bet. The triangle offers a
series of accessible (ish)
gardens, that can be done in a
couple of hours. For complete
listings: see
www.moseleyinbloom.org.uk
MOSELEY TRIANGLE Traditional allotments in a
Saturday June 20 beautiful old setting, recently
sadly downsized but still a
Tennis Club, Billesley Lane gem and today holding their
The newly planted orchard , 2009 Open Day
now in its second year, is a
tranquil area behind the activi- 77 Cambridge Road A front
ty on the courts. Rescued from garden only. Another example
a seething wilderness the pos- of how to get the best of com-
sibilities are there for every bining cars and garden and
organic fruit eater! planting to survive a very
windy corner.
49 Greenhill Road
A verdant, sculptural garden 15 Thornley Close (off Cam-
with a continental feel. Ele- bridge Rd)
gant mature shrubs and trees, A small garden, modernistic in
texture give way to a meadow very elegant and beautiful en-
with summer house and herb vironment. (Access to patio
garden. level, series of steps to main
garden) - Please park on Cam-
51 Greenhill Road bridge Road.
Long garden of rooms with a
real country feel evocative of 5 Cambridge Road
the 1930s. Traditional lawned A large garden with wide
area with mature borders, veg- lawns, mature borders but lots
etable garden and wildflower of new planting to enjoy. A
meadow with orchard. rockery made from reclaimed
stone. Greenhouse, fruit and
Billesley Lane Allotments veg areas and a Boules pit.
Q & A...
WE wanted to know what
drives one of the leading
ME campaigners in the
country to keep fighting the
fight. And it seems, fighting
is not always the answer.
The Countess of Mar, a
cross-bench peer in the
House of Lords, is seeking to
buid bridges...Louise inter-
views her by email:
Why did you set up
Forward-ME?
I set up Forward-ME after I
had attended two All Party
Parliamentary Group on ME
meetings. One was beset with
arguments. The other was
calmer but did not get across
the variety of views. I was
extremely sorry that there
were so few MP’s present to
hear them.
This set me thinking…if a
small group who represent a
cross section of the ME com-
munity could come together
with a united front in order to
achieve recognition for the
illness across government,
medicine, research and social
services regardless of differ-
ences of opinion between
some of the members, then it
was worth a try.
What is your own
experience of ME?
I have not had ME, but I was
severely poisoned by organo-
phosphate sheep dips in 1989,
IT’S TIME TO....
had no diagnosis until 1992
and have been through pretty
well every aspect of the disbe-
lief exhibited by the
‘establishment’. I have been
extremely fortunate in that I
have, at last, found sympa-
thetic medical practitioners
who seem to find me credible
and am able to have a fairly
reasonable quality of life,
though much of the damage
done by the OP’s is perma-
nent. Since I started to work
with people with conditions
like OP poisoning, Gulf War
Illness, ME and fibromyalgia
I have met and corresponded
with many people with ME
and their carers.
Additionally, I hate injustice
and I firmly believe that too
many of the people with ME
have had a raw deal from so-
ciety. I have been put into a
position where I am generally
respected and, occasionally,
listened to. Perhaps the OP
poisoning was sent to me for
a purpose!
How seriously is ME taken
in Parliament?
Ministers always state they
recognise that ME is a serious
neurological condition but
there is not enough pressure
put upon them to ‘put their
money where their mouths
are’. I am the only person in
Q & A...
NEWS IN BRIEF...
MOVE Test for CFS?
Differences in gene expression
have been found in the immune
people do not have the time to cells of people with CFS, a discov-
ery that could lead to a blood test
read reams of detail. Again, I
for the disorder and perhaps even
appreciate the fact that it is
The Countess of to drugs for treating it. Jonathan
difficult for people with ME
Mar has been a Kerr's team compared levels of
cross-bench to marshal their thoughts. Do gene expression in the white blood
peer since 1975 not be afraid to ask for help cells of 25 healthy individuals with
and regularly
raises ME but do not give too many per- those in 25 patients diagnosed as
having CFS.
issues in the sonal details. Offer construc-
House of Lords The researchers found differences
tive proposals based on your
in 35 of the 9522 genes they anal-
own experience. Enlist the
ysed using DNA chip technology.
help of GPs, MPs and others
the House of Lords who raises
whose voice might be effec-
questions on the subject at Just Four Quid
tive. Try to make contacts
every opportu- Two charities are launching a re-
personal as round robin cam-
nity. The diffi- cession-busting campaign to raise
paigns tend to be filed in the £1 million for biomedical re-
culty is that no
waste bin. search into ME/CFS.
politician or
doctor likes a ME Research UK and the ME As-
Do you think more could be sociation have started the ‘Just
problem for
How can ME groups and done to raise awareness? Four Quid’ campaign which en-
which there is
charities help to ensure that There’s more of a problem courages donors to take advantage
no immediate solution appar- of weekly money-saving tips, and
there are revisions? with the belief that it is a
ent and we must all acknowl- then give some of the money they
I realise that the illness creates ‘real’ illness. More articles in
edge that ME is not a simple save to the appeal.
a lot of anger and distress in the press and, perhaps, on ra-
disease! The campaign runs for a year and
itself, but no one should be dio, that concentrate on the can be found at
railed at, slandered and insult- scientific facts surrounding www.justfourquid.com
Do you believe there will
ed. I have endured this myself the illness rather than on case
actually be any revisions in Think Tank
and, because of my own expe- histories, moving as they are,
2010 to the NICE guide- Ten leading scientists in Europe
rience have tried to put it to would be helpful.
lines? have formed a Think Tank for
one side. But there are times Talking about ME in an un-
ME. They want to initiate an ef-
when I could cast ME to the emotional but positive man- fective
I cannot speak for NICE.
winds on the basis that I do ner might also work. research effort to find the secret
They are well aware that there
not have to put up with such Listeners are generally more behind the mystery disease that
are many problems with the cripples an increasing number of
treatment. It must be under- receptive to positive, con-
guidelines, but they have to lives. They meet on June 13.
stood that those who are not structive discussion than they
have professional people to
so close to the subject may are to the ‘poor me’ com-
revisit them and, after the ME Talks
well walk away from the has- plaining. The Royal Society of Medicine is
controversies over the origi-
sle, despite their initial sym- “It took 100 years to persuade taking bookings for the latest in its
nal group overseeing the
pathy. the establishment that asbes- series of Medicine and ME meet-
guidelines, it might not be ings on "ME and CFS – Hearing
Your case needs to be pre- tos was not safe. I hope it
easy to recruit new members. the patient's voice" which will be
sented clearly, calmly, courte- won’t take so long to prove
held at 1 Wimpole Street, London
ously and concisely (always the ME case scientifically.”
W1G OAE on Sat, July 11.
remember the 4Cs). Busy
 HINTS AND TIPS...
What works for you?
How do you cope with
daily living with ME?
From responses to our
cooking and exercise
articles to many indi-
vidual observations on
ME, our new Hints &
Tips page sees mem-
bers offer advice to
other members.
After all, we are the
experts!
Quick, nutritious meal...Put 2
slices of bread in toaster.
Open a can of chopped toms,
throw half in a dish and
microwave about 1 min. Put
butter and cheese between
slices of toast to melt, then
pour the toms on top, or, as I
do, put sandwich in dish with
the toms and eat with a spoon.
Love, Wendy
I do a big cook where I boil
lentils and add spices to make
a load of soup, and freeze. I
make enough for five to six
weeks. Although it takes a lot
of energy (it’s a big energy
day) it means that I can de-
frost a container when I run
out and just heat up with an
already cooked wholegrain
(eg rice/buckwheat) and some
protein.
I try to prepare the containers
the night before but have to
leave clearing/washing up til
another day.
Text
If ever I work again I will
insist on working from home
and for myself as a freelance
at my own pace doing stuff I
love and which I have skills
in.
Rain
Re exercise with M.E...I have
come to the conclusion that
for me the whole exercise
thing is a bit of a red herring.
When I was in an upwards
spiral then gentle exercise
seemed to help me improve
faster. When I was in a down-
wards spiral it seemed to
make me worse. Generally I
have found that slowly in-
creasing my physical activity
helps me to a certain point,
then I hit a ceiling that I can’t
pass. I expect this is because
lack of fitness is not the un-
derlying problem.
Elaine
If u r confined to one room,
old-style kitchen trolley with
wheels is fab. Have kettle and
tea-making on tray on top,
food items, soups etc on mid-
dle shelf, spoons n snacks in
drawer, and microwave on YOUR HINTS & TIPS
bottom shelf. If you need a
carer 2 help then everything is Have you discovered some-
in one place!
Wendy
Library services at home 0121
464 1118 do a monthly deliv-
ery of books, magazines etc. I
couldn’t survive without it.
This is a Birmingham service,
we’d like to know if your
council provides it too.
x Jo
Epsom salts in the bath can
address an underlying magne-
sium deficiency. Since I start-
ed using them I have found
that pain levels have reduced,
and I am getting off to sleep a
little earlier. Epsom salts have
been proven in studies to help
people with a multitude of
conditions, including ME and
autism. Plus, the bath water
can be stored in a tub and
recycled around the garden.
Plants love magnesium too!
Louise
Noise reducing headphones,
like the ones used by busi-
nessmen on longhaul transat-
lantic flights are great for
cutting out environmental
noise if you are sensitive to
this.
They work by producing a
low level white noise, so that
the music you are listening to
is clearer. They can also be
used independently of music
for some peace and quiet!
thing that makes daily life
with ME a bit more bearable?
It may be a handy way to save
energy around the house, a
great new device or things to
avoid! Suggestions welcome -
share the knowledge!
Text:
07906 466 682
LETTERS...TEXTS...EMAILS...
We’ve had so many was only one side given in the tips and research. My favou-
emails, texts and com- piece on the Perrin technique. rite part was the feature on
ments! I’d like to see more tips and BRAME (March issue)
advice for day-to-day living Feedback Form
Thank you so much for
with ME.
your thoughts and do Member, by feedback form I got some friendship cards
keep them coming! but who do I know who to post
Here’s a selection: Good easy to read new format. them to? Wasn’t there sup-
More research please. posed to be members’ details
Many thanx for great new Feedback form attached?
mag. I love the text idea cuz I Text
find it hard to phone or get to “I like the fact that the whole Ed - we are looking into pro-
a computer. thing is in type I can read, and viding contact lists for all
Text that text is broken up so members, which needs per-
there’s not pages and pages of mission from all members in
I think that contact lists 4 close print. There’s also a lot the group. We may ask for this
members 2 interact is a great of variety, and not too many when renewing membership.
idea, especially 4 people who articles telling me stuff I al- Letters can be emailed to
don’t have a computer (they ready know.” jlgriffin@blueyonder.co.uk
cost!) and since u can’t always Text mecentralnews@gmail.com
get 2 meetings so talking 2 Or text us!
people by phone for example I would like to see more info 07906 466 682
wud b good. on helpful therapies, health
Text
Thanks very much for featur-
ing Lost Voices in your Spring
Newsletter, it's much appreci-
ated.
Kathleen McCall Invest in
ME
Just a couple of lines to say
how impressed I am with
your new look Newsletter.
Great items, good layout,
most impressive ! ( and I got
a brief mention ).
Send us a thought bubble! Post
Colin Smith MBE to:
Outreach Manager Jenny Griffin
59 Cartland Road
Midlands Disability Benefits
Centre Stirchley
My favourite part was infor- Birmingham
mation on research, but there B30 2SD
 ...BIG READ...THE BIG READ... ...BIG READ...THE BIG READ...

The 20th century saw a rash of epidemics of a

MASS OUTBREAK!
viral illness, and they happened all over the world...
Infectious venulitis, Epstein doctors and ancillary staff. In 50 years ago inform opinion Dr Melvin Ramsay ing derision with which ME
Barr virus, even mass 1956, Dr Melvin Ramsay of to this day. Psychologists remains the Godfa- was met. But it was fuelled as
hysteria...all of these names the Infectious Diseases De- McEvedy and Beard branded ther of ME. The much by the interests of insur-
have been ascribed to what partment names a new the Royal Free outbreak man who put ME ance companies in the States
was later understood to be illness...Benign Myalgic En- ‘mass hysteria’. on the map is also and other misunderstandings
ME. There are similarities in cephalomyelitis. ME was Then for a time, things im- remembered as the of the illness globally.
many of the well documented born. There are further UK proved. The 1970s went on to man who perhaps The worldwide epidemics
outbreaks of the 20th century. outbreaks in the 50s. be ‘halcyon years for ME re- best understood his have at least contributed to
search’ recalls Dr E Dowsett patients, and never advances in research into the
1934 Los Angeles County 1975 Mercy St Juan Hospi- in a 2002 presentation on stopped listening behaviour of viruses.
Hospital A mystery virus hits tal, Sacramento California Chronic Neurological Dis- to them. He refuted It is hoped that one day there
in the middle of a poliomyeli- Mass outbreak of a ‘viral dis- ease. the conclusions of will be a vaccination for
tis epidemic. It was later dis- ease’. Dr Eric Rhyll calls it Top doctors worldwide exam- the psychologists epidemics and new viral diag-
covered that those who had Infectious Venulitis (IVN), ined the outbreaks and estab- McEvedy and nostic tests. And, of course,
contracted the ‘new disease’ and has followed patients ever lished that alongside polio Beard, and directly we hope these advances will
were resistant to polio. since. Some remain affected there had been more than 60 tackled their ‘mass help the rest of us, the individ-
to this day. He recognises outbreaks of atypical non-par- Nurses at the Royal Free became too ill to work hysteria’ claim in a uals who suffer with ME.
1948 Iceland An outbreak of IVN as a variant of ME/CFS. alytic polio, viruses that were letter citing the physical fe- Until then, campaigning for
epidemic neuromyesthenia able to survive persistently in Only in 2002 was there any ver, swollen glands and pal- the respect and understanding
protects Icelanders from a lat- 1984 New Zealand Both the the body. Meanwhile, during confirmation that ME is sies that occurred in a striking displayed by Dr Ramsay is
er 1950s polio outbreak, North and South Islands are Lake Tahoe’s epidemic insur- ‘indeed a longterm seriously number of cases. Sadly he vital.
prompting the theory that the affected by a mass outbreak ers started to become twitchy disabling illness.’ blamed himself for the ensu-
earlier virus was a separate of Tapanui Flu, or ME. about ME. Inundated with
Pauline Ovenden, Honorary the dining room seemed empty, wasn't very pleased. Mind you,
enterovirus. more claims than the AIDS but we were kept so busy with when I started having problems,
President of Herefordshire
1985 North Lake Tahoe A epidemic, they sent claimants work we were too tired to ask those nurses probably stopped
ME Support Group was a
1950s Adelaide, Australia strange viral illness grips In- via doctors who held the view questions. It was only when they me being much worse as I then
nurse at the Royal Free dur-
Researchers inject monkeys cline Village. Researchers that ME was a psychiatric ill- put the whole hospital in quar- found out several were working
ing the 1955 outbreak:
with material from epidemic call it chronic EB virus, but ness making it harder to claim. antine, and we were shut in, that on the sick wards and knew the
patients and find vascular eventually rea- we knew it was something dif- early symptoms.”
damage... lise it has noth- “ I was in accident and ferent.
emergency the morning staff Pauline says Dr Ramsay spent
ing to do with “As at one point so many staff
started falling like nine-pins in the rest of his professional life
1950s-60s America Three Epstein Barr. It were collapsing in the hospital,
our department, and many trying to undo the damage done
separate outbreaks of epidem- is CFS or ME with sometimes nobody finding
phone calls came from outside by the psychologists who
ic phlebodymia (painful them for a while, it was decided
the hospital for staff members dubbed the outbreak mass hys-
to close the nurses home and we
veins) are documented Quite often these teria.
(cleaners, porters etc) who had had to sleep in the empty
outbreaks divid- family collapsing at home too. We’d like to thank Pauline once
wards. I was in with some
1955 Royal Free Hospital ed doctors. In “We all thought it was flu for again for giving us this rare
young nurses who were finding
A serious outbreak of ‘flu’ is fact, misunder- days. I don't think I realised how insight into the Royal Free epi-
it exciting, while I was trying to
recorded affecting 197 nurses, standings from serious it was until at mealtimes demic.
revise for my final exams and so
A typical nurses’ rest room of the 50s
RESEARCH NEWS
WHY WE CAN’T STAND QUEUES!
Researchers in Newcastle are
to look at why people with
ME have problems standing.
Many people report dizziness,
visual disturbance, nausea
and fatigue.
The two year study backed by
ME Research UK will explore
problems with the autonomic
nervous system in people with
ME/CFS.
The autonomic nervous sys-
tem controls cardiovascular,
digestive and respiratory
functions, and has a range of
other important roles. When it
goes wrong, the consequences
can be severe. Since one of
the key difficulties that
ME/CFS patients face is
standing, most especially
standing still, without experi-
encing symptoms such as diz-
ziness, altered vision, nausea,
fatigue etc., the possibility ex-
ists that there could be a prob-
lem with the autonomic
nervous system.
The study marks the third
phase of an ongoing study by
Prof. Julia Newton of the
School of Clinical Medical
Sciences, University of New-
castle.
In 2007 her team examined a
large group of patients using a
battery of tests of heart rate
and blood pressure. The Car-
diovascular Laboratory in
which the tests were done is
one of the largest autonomic
testing labs in Europe, with all
Stand in line? Not likely!
the necessary equipment and
expertise for comprehensive
autonomic testing. Her re-
sults, published in the Quar-
terly Journal of Medicine
(August 2007), showed that in
three-quarters of the patients,
autonomic dysfunction was
present, a very unexpected
finding. Furthermore, in a
separate study, Prof. Newton
has reported that a simple-to-
measure assessment of the
heart rate response to standing
was abnormal in a significant
proportion of patients.
Funding has now been pro-
vided for the next phase of the
work: a two-year project ex-
ploring some of the mecha-
nisms behind these autonomic
problems in ME/CFS pa-
tients. The investigation has
two broad aims. The first is to
examine fully the people at-
tending the Newcastle
CFS/ME Clinical Service,
COMEDY CENTRAL
SALT
Same As Last Time
What do doctors write
about us in our
medical notes? SNEFS
Perhaps we’d Sub-
rather not
Normal,
know. They Even For
certainly don’t
Suffolk
want us to judging
from the following
Picture BBC news ‘codes’... GLM
ABITHAD Good Look- TEETH
and develop a database of pa- Tried Everything Else;
tients who can be followed up Another Blithering Idiot ing Mum
Thinks He's A Doctor Try Homeopathy
over the long term. The sec-
ond is to begin to answer the LOLINAD
question, “Does the autonom-
FF Little Old Lady In No TMB
ic dysfunction in people with Too Many Birthdays
ME/CFS arise in association Frequent Flyer: Acute Distress
with abnormalities of brain, Returns to a medical pro-
muscle and liver, as has al- vider for everything MFC TOBAS
ready been shown in other Take Out Back And
Measure For Coffin
patients with other illnesses?” Shoot
For this, a series of linked FLD
studies will examine muscle Funny Looking Dad NFS
bioenergetics (using state of Normal For Swindon TTGA
the art MRI techniques), Told To Go Away
structural and functional brain FLK
abnormalities (also using Funny O2T NOW IT’S YOUR TURN!
MRI), and structural and Looking Kid Oxygen Thief
functional liver abnormalities Okay...so what would you
(using fibrosis quantification write as an abbreviation sum-
and percentage fat assessment FOS PIP ming up your GP or consul-
by MRI). Full Of ... Stool Pyjama tant?
TCYF perhaps...Totally Clue-
Funding for this study has Induced Paralysis less You’re Fired!
been provided by the John Send us your funnies and
Richardson Research Group, GFPO we’ll print some next issue:
the Irish ME Trust and ME Good For Parts Only PITA
Research UK. Pain In The A** 07906 466 682
 ..LAST WORD...LAST WORD..LA
My old friend Zahoor had come
round after many years – “so
what’s it like, having severe
ME?”
“Well, old pal” I sighed, “how can
I explain adequately? Honestly, I
find there is not the vocabulary for
it yet. It’s like trying to describe a
27th letter. Every time I try to ex-
plain severe ME I end up explain-
ing something else. A writer called
Borges once said there is always a
gap between what we experience
feeling and the language we have
at our disposal to express it. Well,
severe ME certainly falls into that
gap. It’s a slow, relentless torture.
As you know, every good torturer
seeks to reduce the victim entirely
to the body and destroy all spirit
and will. That’s what severe ME
does. It’s a living humiliation.
Picture it with me:
“Severe ME comrades prostrate in
curtained rooms that feel like
tombs. Immobile. Self-quaran-
tined. Pleading silently: ‘How
long?’ ‘How long?’ Wracked in
pain on lumpy mattress, dank per-
fumed.
“So many of them barely find the
strength to lift their heads from
pillows. Reduced to a pulverising
pulse of fevered fatigue. So far
from distant lands of narrative or
meaning. Hostage to their bowels;
gritting furry teeth as they lie
amongst fallen hair. In spring,
cursing lawnmowers who cut
across their flayed nerves like ra-
zor blades dipped in acid. Winter is
like living in a fridge with the light
turned off way past their sell-by
date. Whispering what Najinsky
dared to utter: ‘I have suffered
more than Christ.’
“There’s dust and smells and hairs
and mess. Aches and pains and
strains and stress. Plagued by the
housing, bills and the DSS. Con-
demned to the itinerancy of wait-
ing rooms for illiterate medical
tests. Misunderstood in brute
neglect.
By Tarsam Singh
“After all this, indeed, what for-
giveness? What faith? What god?
What sense of moral order? Where
then Reason with its cloak of neon
progress?
“Let us go back. Way back. Some
time before when water was taken
directly from the well. When profit
was still spelled prophet. When the
many had more need for manna
than money, and sumptuousness
and bounty first sought location in
spirit.
“Let us take up with the old car-
penter who walks and walks,
weeping along his way. His only
son had left home at an early age
and not returned. The old man
searches for him near and far, from
village to village, over sand and
stone, walking and waiting to find.
Patiently he goes. Sometimes with
tears so much in his eyes that they
blur his view but do not fade his
prayers.
“Readily he finds shelter amongst
people who can see he suffers and
understand that to suffer is to exist
near god. Usually whilst serving
food, they ask after his purpose and
he relates the tale of his absent son.
‘You see, he was made not begot-
ten. Yet he was mine and I loved
him such.’ And they are touched
and wish him well and afterwards
remember him fondly. And on he
walks. Always hopeful, with the
same prayer turned brittle upon his
lips. Walking, weeping. Weeping,
walking. Thus he proceeds through
seconds and years. So he dies.
“Let us now join Jesus in heaven as
he attends those newly arrived with
his presence. All before him so sad
and lonely, for as we all know, a
broken heart is the passport to
heaven and uncensored yearning
citizenship to the immortals.
“Seated in a corner, he spies an old
man copiously weeping, bent over
in such deranged lament that Jesus
makes for him forthwith. His palm
reaches out to cover the bowed,
balding, sobbing crown.
‘Why do you cry so, old man?
Don’t you know you are now in a
better place where reward is free
and beauty unbesmirched by mea-
sure?’
“Through films of tears the old
man begins: “Well, I am an old
carpenter whose son left home at
an early age never to return. He
was made not begotten and I loved
him so. I went out to find him,
spent my days looking and now
I’m dead and I don’t know how I’ll
ever see him again.”
Jesus opens his arms, beaming, and
says: ‘Father!’ and the old man
slowly raises his head. So slow as
if he dare not believe it and through
swollen tears cries out:
‘Pinnochio!’”
“That was unexpected” said
Zahoor.
“The unexpected – that’s severe
ME.” I returned. “We expected a
life of justice, productivity, getting
what you give, logic, meaning.
What we got instead is pain, mis-
ery, isolation, an irredeemably irra-
tional illness, despair.”
“You have to keep the faith, T,”
urged Zahoor. “Be gentle with
yourself. There is meaning in your
condition. Those with the least mo-
tivation to live most affirm life by
their continued existence. Remem-
ber your man Jesus: the last shall
be first. It’s the severe MEer’s who
exemplify and amplify the human
spirit by courageously surviving.
The Lifeforce begins with you. It’s
those in the darkest part of night
who push up the dawn every day
for the rest of us.”
..RESOURCES...HELP...ADVICE..
BIRMINGHAM CENTRE FOR LISIEUX TRUST
INCLUSIVE LIVING 184 Sutton New Road Erdington
Birmingham B23 6QU
Birmingham Centre for Inclusive Living is a
Monday – Friday 10 .00am - 4.00pm
third sector organisation and registered
charity. It is run and managed by disabled Information and support on a wide variety of
people. It aims to work in partnership with issues including:
disabled people across Birmingham to
Welfare Benefits
support and develop the aspirations of
individual disabled people (partners) Employment
towards independent and inclusive living. Education
Leisure Activities
Mobility/Blue Badge
0121 415 5500 Independent Living Fund Training
Radar Keys
www.bcil.org.uk
0121 382 6660
07933 473 483
info@lisieuxtrust.org.uk
www.lisieuxtrust.org.uk
Ring and Ride: Birmingham Law Centre: the chance to meet with other
Excellent advocacy work carers.
0121 453 938
across health, social care and The Carers Centre is open to
Optician Visits at Home: welfare issues
the public 10-6pm Mon-Fri
0800 854477 0121 766 7466 with a late evening opening
Library at Home Service: until 7pm each Thursday.
0121 464 1118 DIAL Solihull is a FREE, 0121 675 8000
www.birminghmam,gov.uk impartial and confidential
/libraryserviceathome
information and advice ser- BDRC, Bierton Road, Yard-
(monthly books delivered to
vice for disabled people and ley, Birmingham:
your home; also DVDs; CDs; their carers. The service is
talking books; magazines; run by people with disabili- The Birmingham Disability
jigsaw puzzles etc) ties for people with disabili-Resource Centre (BDRC) is
ties and their carers. an organisation based in
Yardley, Birmingham pro-
Directory Enquiries: To 0121 770 0333 viding a range of indepen-
reg ister for free directory Birmingham Carers Centre dent support services to
enquiries if you are disabled For all adult carers aged 18
disabled people, their fami-
(such as not being able to lift years and over, providing a
lies and carers in Birming-
or handle the Yellow Pages) “one stop shop” for carer ser- ham.
0800 587 0195 vices and support as well as 0121 789 7365
BOOK ENDS...NEW LIBRARY SERVICE
CALLING ALL BOOKWORMS...
We have now got the funds to provide
members with a library service...
We’ve been busy stocking up on ME titles, so
we can provide you with those hard-to-find
books that you maybe can’t borrow elsewhere.
Plus there’s some hard-hitting papers and
DVDs to help you stay informed.
All the below titles are on monthly loan. It’s
easy to order your books, papers or DVDs...
Simply text the title plus your name and
address to:
07906 466 682
Or email:
mecentralnews@gmail.com
We’ll post it right out!
Orders will be posted with stamps for returns.
We encourage reusing the jiffy bag. The
return date will be in the front of the book or
on the DVD inside cover. To reduce risk of
forgetfulness pin stamps to your noticeboard
and put a reminder in your mobile!
Lost books will unfortunately have to be
charged for. And whilst we are fine with
renewals, this is only possible for books not in
demand.
BOOKS
Living With ME Dr Charles Shepherd
ME/CFS A Practical Guide Dr Anne Ma- Lost Voices From a Hidden Illness Invest in
cintyre ME
Better Recovery From Viral Illness Dr PVFS: The Saga of Royal Free Disease: A
Darrel Ho-Yen
Beat Fatigue With Yoga Fiona Agombar
BOOK ENDS...NEW LIBRARY SERVICE
A NEW LIBRARY!
Recovering From ME OTHER DOCUMENTS DVDs
William Collinge Talk to the Dorset ME Group Jan 2009 by
Engaging with ME Professor Malcolm Professor Holgate - the need for a
ME and You Hooper (biomedical perspective) national strategy for CFS/ME research
Steve Wilkinson
The Epidemiology of ME in the UK 1919 International Conference on CFS/ME Bio-
Shattered -1999 Dr Betty Dowsett medical Research May 2008 ME research UK
Lynn Michell
Inquiry into the Status of CFS/ME Re- Energising Biomedical Research in
OT and CFS search into Causes and Treatments Gibson ME/CFS Jan 2006 lecture by Dr Vance Spen-
Diane Cox report 2006 ce Chair of ME Research UK
ME in Children and Young People Dr Alan
Surviving ME Franklin Engaging with ME a lecture by Professor
Joyce Fox Malcolm Hooper
25% ME Group’s Submission to Gibson
Inquiry into Research into ME (severely “I Remember Me” a film by Kim A Snyder
The Complete Guide to Food Allergy... affected pwME)
Brostoff and Gamlin ME/CFS/Fibromyalgia Conscious TV
CMO Report Chief Medical Officer report Interviews Optimum Health Clinic
The Selfish Pig’s Guide To Caring Hugh into ME
Marriot So easy! Just text the title plus your name
RCPCH Guidelines For Children and Ado- and address to:
Living With a Long-term Illness Frankie lescents Royal College of Paediatrics & Child
Campling Health 07906 466 682
A Woman in Your Own Right Anne Dickson Jenny also has a selection of MEA leaflets on Or email:
symptom management, benefits advice, mecentralnews@gmail.com
Young Hearts TYMES Trust poetry by chil- carers advice, pacing, treatments and much
dren & young people with ME more! Call her for details or text us a request. It’ll be posted straight to you!
“The State of Me” novel by Nasim Marie We aim to provide a talking book If you want to review a book you’ve read send articles to:
Jafry library soon on non ME titles.
And we’d love to hear your views mecentralnews@gmail.com
on our selection of books, DVDs
and documents. Any suggestions,
or contributions, welcome. We will publish them here or on our blog where you can
also find the complete resources list for the library
Melvin Ramsay Text :
07906 466 682 www.me-central.blogspot.com