SOLIHULL & SOUTH B’HAM

M.E. SUPPORT GROUP

About Us
M.E. Central
The Solihull and South Birmingham M.E Support Group is an independent, self supporting group run
SOLIHULL & SOUTH B’HAM
M.E. SUPPORT GROUP N e w s l e t t e r E x t r a
informally by the members for the members
“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 FUNDING JOY FOR GROUP
We have monthly meetings six times a year; usually on the second Monday of each month (except Janu- WE have some very good Aware-
ary and August). We alternate between group co-ordinator Jenny Griffin’s house and Room 3, Shirley news for our group ... ness
Community Centre (next door to Burger King and opposite Shirley Police Station), Stratford Road, Our application for a grant drive for
Shirley
New members are always welcome
from Grassroots was 2009.”
Friend of successful! Funding for We
Tel:O121 689 0777 three years of £4961 has would
been secured - to be like to
released in three stages, thank
with £2198 for this year. every-
Other Support Groups Jenny says “No need to one at
tell you how much this the
Walsall and West Midlands ME LINK: will mean to us - no more Solihull A good natter at one of our typical monthly meetings
worrying about how we Community Foundation endless patience and kind-
www.walsalldisabilityforum.com were going to keep going, (who provide Grassroots ness. And thank you to
Go to ME Link under member organisations especially through the re- Community Grants) very Tarsam who contacted
cession when costs were much indeed. Special Maria of Shirley CAB last
walsallmelink@btinternet.com fibrowalsall@btinternet.com rising. Not only does this thanks to manager Sharon year to get help with
Tel: 0871 7503850 grant provide us with our Pinnock who assessed and printing, and Maria her-
running costs, but we can presented our application self, who put us in touch
plan ahead a bit, and bring to the Grassroots commit- with SUSTAiN. We have
National Groups in things to help us all and tee. Thanks also to Manjit written to thank her and
to raise awareness of M.E. Johal at SUSTAiN who invite her to give us a talk
in our community. More guided us through the on Shirley CAB.
25% ME Group (for severe Fibromyalgia Association The Young ME Sufferers news on all this in our whole process with
ME): UK: (TYMES) Trust: June newsletter but see
01292 318 611 0870 752 5118
www.fibromyalgia-
0845 003 9002
www.tymestrust.org
inside for our M.E. THE FIGHT WILL GO ON
www.25megroup.org M.E. campaigners Kevin raise awareness on some
associationuk.org In This Issue...
DIAL UK: 01302 310 123 Short and Douglas Fraser of the risks associated with
Action for ME (AfME): Spon- lost their case last month GET and CBT, treatments
0845 123 2380 ME Association (MEA): Disability Resource Centre sored Campaign Special against NICE guidelines available on the NHS rec-
www.afme.org.uk 0870 444 1836 Birmingham: which govern M.E. treat- ommended by NICE.
Research Extra ment. The Countess of Mar, who
www.meassociation.org.uk 0121 789 7365
www.disability.co.uk They argued the guide- recently launched a new
Association of Young Peo- M.E. Awareness Day lines are unfair and irra- group, ForwardME, raised
ple with ME (AYME): ME Research UK: tional. A High Court judge concerns in the House of
Carers Centre Birmingham:
0845 123 2389 01280 816115 0121 678 8000 Your Feedback ruled against them. Lords just days after the
www.ayme.org.uk www.meresearch.org.uk www.birmingham- Despite the blow, organi- hearing. See pages four
carers.org.uk sations have continued to and five...
JENNY WRITES... Inside This M.E. Central
ISSUE
SOLIHULL & SOUTH B’HAM
M.E. SUPPORT GROUP

There were lots of positive reactions for the

first edition and some great suggestions and Welcome to Jenny’s excellent May Newslet-
feedback, so we will take all this on board ter Extra.
and, hopefully, reflect all your wishes in the There’s always a lot happening in the world
forthcoming editions. of campaigning, politics and research but
Of course, the application for funding has 2 Jenny Writes not all of us can keep up with developments.
brought about some changes for us as we now And yet, there’s no doubt that what happens
have to have a more formal committee set up up and down this land and around the world
4 ME News is HUGELY important for us all.
and a constitution, but this doesn’t mean any
change in who we are and how we all support Without campaigning, lobbying and research
and care for one another. 5 Group News many of us simply wouldn’t have a voice,
We want to reassure you that everything our and the decision-makers would ride rough-
committee does is for and on behalf of the shod over us.
Hello Everyone members, so please keep telling us what you
6 Campaign Special So get stuck into your Newsletter Extra (&
want, what you like and dislike, how you are campaign letters enclosed) and support M.E.
Awareness with our group drive on p5!
This edition is a Newsletter Extra for M.E.getting on and any comments that you want 8 Research Focus You’ll find coverage and analysis on p6 of
Awareness Day, May 12. to make. We are not people with titles (!), we
The content is more focused on M.E. news are still what we always were - people with the recent High Court challenge by two M.E.
and research this time and we plan to bringM.E. and we love to hear from you! One of 11 Feedback Form sufferers. Plus on p7 our support group has
us will always be at the meetings and you can
you this special focus each year in May. Your been involved in opposing NHS training on
Blue Ribbon for M.E. Awareness is enclosed,talk to us any time using all the ways that are M.E.
now available to us – the group’s usual phone
so don’t forget to wear it with pride! Inside is There’s research into post exertional ma-
news on how we can all do our bit this yearand email, and the newsletter’s new text TO MARJORIE laise on p8-9, and news about Vitamin D
KS
THAN
for raising awareness. service, email feedback and blog site. Our deficiency and more research on p10.
We look forward to seeing as many of you constitution is just a formal way of saying We’ve enjoyed getting your messages via
who can make our M.E. Awareness coffee what our aims and aspirations are as a group - We have received a cheque for £100 from the group mobile. It’s given us feedback on
just putting into words what we have always
morning (well, make that a coffee afternoon – Marjorie, which was the total of her final articles and suggestions for the group so
we do have M.E!) on THURSDAY, MAY 7 done and believed in since we started, so that fundraising year at Grosvenor Court where keep using it! The number is (for text or
from 12 noon until 2pm at my house. All areother people outside of our group can under- she lives. For many, many years she has voice messages only): 07906 466 682
very welcome, your friends, relatives and stand what we do, why we do it and how we made marmalade and sold greetings cards to Read on!
carers. do it. raise funds for the group. During this time
As I write this the sun is shining and we have she has raised many hundreds of pounds
some lovely warm Spring weather at last. I which has been invaluable in keeping the M.E. Central will be published quarterly,
“ME is still our top priority and and aims to reflect the interests and con-
hope this will make us all feel better after the group running. Sadly for us, she is finally
very long and cold winter that we had this
this group is all about us!” retiring as she is now 86. Marjorie says she cerns of members of Solihull and South
year. Many of you reported that you were not will continue to be a member, but nowadays Birmingham M.E. Support Group. All
Take care, all of you as an armchair supporter! submissions are subject to editing by the
feeling too great after the prolonged cold
Love Thank you so much, Marjorie, for all the editorial team. All rights reserved.
spell, so let’s hope for better things and a
lovely summer for us all! time, support and hard work you have put We welcome articles and ideas from
I hope you are all as pleased as I am about the into the group over the past 20 years or so. members, either named or anonymous.
new funding. It’s such a relief not to have to The group would not have kept going with- Please email:
worry about how we are going to keep going, out your contribution – so we all owe you a mecentralnews@gmail.com
isn’t it? We can do more things for us and very big vote of thanks. We all hope you
continue with our nice ‘new look’ newsletter. will continue to come and see us at meetings jlgriffin@blueyonder.co.uk
whenever you can.
2 3
 ME NEWS...NATIONAL NEWS... ME NEWS...GROUP NEWS...ME NE
NEWS IN BRIEF
NEW SCIENTIST FURORE PLEASED TO too. We know times are hard
but feel that a slice of cake or
Kevin Tripp Verdict A controversial figure in their activities beyond what MEET YOU a plant bought in aid of M.E.
Awareness is money well
M.E. medicine has caused is necessary and getting frus-
Two people accused of the waves on the New Scientist trated or demoralised. This WE are planning a very spent! Jo, our Outreach mem-
manslaughter of a London ME pleasant May meeting to raise ber, is also inviting people at
website with more than 500 causes more symptoms, more
sufferer who was killed in a money for M.E. Awareness the meeting to note down
supermarket rage attack have
responses to an article. concerns and more physical
This huge number is consid- changes, so much so that on Thursday May 7. their burning questions for
been found guilty. Tony Versa- Please note it’s not Monday local MPs. It’ll be a quick
mi, whose punch caused Kevin ered by many in the M.E. what started it all off is no
community to indicate the longer what is keeping it go- as previously stated. and easy way to make sure
Tripp to fall to the floor and be
strength of feeling against his ing.” So wear your Blue Ribbon your concerns about health
fatally injured, was sentenced
to four years in prison. His views. These and other remarks on and come along! Bring your care or wider issues are re-
partner, Antoinette Richardson, Professor Simon Wesseley, the ‘psychological factors’ relatives and friends... every- corded for May 12 and acted
who phoned Versami and then who founded the Kings Col- and ‘years of inactivity’ in- one is welcome. on hopefully in the near fu-
pointed out the wrong man in lege Chronic Fatigue Syn- fluencing those suffering For this extra special May ture. So, one more time,
the queue, was given 18 drome Research and severe CFS (sic) prompted meeting we are inviting that’s: Our cards will be on sale at meeting
months. Whilst it is good that Treatment Unit, says of hundreds of responses. members to help raise money THURSDAY MAY 7 at 59
these people have been impris- for M.E. Awareness. Cartland Rd, Stirchley B30 DIARY DATE
ME/CFS in the recent article:
oned for their vicious and un- A selection of items will be 2SD 12noon – 2pm
“Often there is an organic So what do you think? Read Our June meeting is on
provoked attack on an innocent on sale. And members are Hope to see you there!
man, many felt that they had
trigger like glandular fever. the article and be sure to add MONDAY JUNE 8
That's the start, and usually your comment to the debate more than welcome to bring
got off lightly. Sadly, nothing items along. Remember to If you can’t join us please visit: Shirley Community Centre
will bring Kevin back to us. most people get over it, albeit at: 7.30pm
after some weeks or months. http://www.newscientist.co bring a few pennies with you www.me-central.blogspot.com
But others can get trapped in m/article/mg20126997.000-
IiME Conference vicious circles of monitoring when-illness-is-mostly-in- MARCH COMMITTEE MEETING REPORT
their symptoms, restricting the-mind.html?full=true THE meeting was attended by other fundraising issues in- Finally Tarsam brought up
The fourth International IiME Jo, Louise, Jenny, Tarsam cluding charitable status - the issue of balance, suggest-
conference is on May 29. MUM RUNS BELFAST MARATHON and, at the end bit, Alan. Alan is to report back at our ing that newsletters should
They have a great line up of Firstly Jenny spoke on the next meeting on this complex certainly contain lighter fea-
speakers including Dr Chia andM.E. supermum Antoinette plex physical disorder of the
Christie is to run in the Bel- nervous/immune systems, grant application (which was issue. We all looked at organ- tures, which were much en-
Dr Jonathon Kerr. SSB sent an
fast Marathon on May 4. possibly with viral cause. to be sent in) sending a dona- ising our committee meetings joyed, but should be balanced
invitation to Dr Rickards offer-
ing to sponsor two health pro-The mother of 15-yr-old “Very little help is available tion to BRAME for blue rib- in the best way for pwME. with ME campaigning, poli-
fessionals from the B’ham sufferer David is raising on the NHS and sufferers & bons (approved) and a Tarsam raised the potential tics and research issues vital
ME/CFS clinic to attend this money for ME Research. their carers are usually left to campaign report (see your for member contact lists and for members who may be un-
conference but, despite remind-
Antoinette said: “The reason cope on their own whilst their enclosed inserts). we examined ways of reach- aware of what was going on
ers, we have received no ac- I am taking part once again in lives fall apart.” We then had a newsletter re- ing out to all members (Jo to otherwise. He suggested half
ceptances. the Belfast Marathon with my ME Research UK funds high- port from Louise. Feedback report back on this). and half where possible for
Shropshire ME Group husband Paul, son Paul, sister quality scientific (biomedical) from the new newsletter was We discussed ways of mark- the quarterly newsletters. All
Conference Jeanette and a few friends is investigation into the causes, very favourable and the new ing ME Awareness and it was agreed.
to raise much needed aware- consequences and treatment easy to read format was very suggested that posters and Next meeting: May 11
Dr Vance Spence from ME Re- ness and funds into bio-medi- of M.E. much appreciated. Jenny pro- leaflets could be printed and All comments or sugges-
search UK will be speaking on cal research into ME. To donate go to: posed an extra newsletter for sent out in the June newsletter tions welcome beforehand.
ME: A diagnostic & research ME Awareness in May with for members to distribute if,
“There is now much scientific http://www.justgiving.com/
challenge Lord Hill Hotel, blue ribbons enclosed and where they could. These
Shrewsbury 7.00 - 9.00 pm,
evidence that M.E. is a com- antoinettechristie Text us your views:
(approved, subject to receiv- could be sent to other organi- 07906 466 682
Wed May 13. ing funding). Louise raised sations as well.
4 5
 CAMPAIGN COMMENT...CAMPAIGN
REACTIONS IN BRIEF
SHOCKWAVES FELT
TEN days after Kevin Short
and Douglas Fraser lost their
High Court battle, the 25%
Group resigned from For-
ward-ME , a group set up to
unite the M.E. community by
the Countess of Mar.
Simon Lawrence stated: “We
are no longer going to work
with any organisation that
supports the NICE Guidelines
on ME/CFS, which primarily
holds the belief that CBT and
GET will help people with
this neurological disease.”
Who are Forward-ME?
Forward-ME consists of the
following organizations in-
vited to date by the Countess
of Mar to meet and discuss
issues: AfME, AYME, Re-
MEmber, the ME Associa-
tion, The TYMES Trust,
Invest in ME, ME Research
UK and BRAME – and (up
until March 23) the 25%
Group. The aim is to bring
parties together.
Why the split in opinion?
Many in the ME community
are frustrated by AfME and
AYME’s continuing support
of the NICE guidelines for
CFS/ME and of the NHS
services - particularly train-
ing (see opposite). AYME
actually states in their De-
cember 2008 Link newsletter:
– "We promote the NICE
guidelines as being the docu-
ment that must be followed
alongside the RCPCH guide-
line".
6 srd/text/90318-0013.htm
What is happening with
AfME and AYME? We
need to be examining why
they are so out of step with
all other national groups and
charities (who have con-
demned the guidelines as to-
tally unfit for the purpose)
and why they have a virtual
monopoly of patient repre-
sentation on the development
of NHS services for M.E.
Neither charity has voting
rights for members, nor have
either asked whether sub-
scribers are satisfied with
their endorsement of the
NICE guidelines, NHS serv-
ices or the CCRNC confer-
ences.
It is known AfME received
government grants to develop
patient involvement for NHS
services. They refer to them-
selves as a ‘critical’ partner
but, so far, their self per-
ceived ‘influence’ has effect-
ed little change in the
apparent psychosocial bias
that the NHS has towards
ME/CFS.
Jenny says:Whilst it is sad
that The 25% group have de-
cided to leave, since it cuts
them off from having a
“voice” on Forward ME, it is
entirely understandable given
their long struggle to get any
recognition or treatments for
the severely affected.
For more coverage see:
www.nicemecourt.co.uk
WE SAY: The court result means
that NICE Guidelines for CFS/ME
will be used to shape and define the
NHS services you receive until a
review in a few years time. So,
more of the same for us with CBT
and GET being the only treatments
recommended by NICE.
NICE SAYS: Professor Peter Lit-
tlejohns, NICE Clinical and Public
Health Director responded to the
High Court judgment saying: "We
are pleased to have won convinc-
ingly on all counts in this
case…today's decision means that
the NICE guideline is the gold
standard for best practice in manag-
ing CFS/ME." Extract from: NICE
statement on CFS/ME judicial re-
view outcome
ME ASSOCIATION: "Despite the
Judicial Review failing to result in
the withdrawal of these potentially
dangerous guidelines, the evidence
relating to both clinical and cost
effectiveness does not justify the
emphasis and optimism being given
to these two treatments."
25% GROUP: "This is certainly a
very sad day for everyone with neu-
rological ME. A disease that dev-
astates the lives of sufferers and
their carers, a disease that not only
strips sufferers of their livelihoods,
but that often leaves them totally
reliant on carers for their everyday
needs”
COUNTESS OF MAR: “The
guideline was published amid a
barrage of criticism from the ME
community. Criticised... because
the only “treatments” recommend-
ed by NICE on the basis of very
limited and strongly criticised sci-
entific evidence were CBT and its
twin sister, graded exercise therapy
or GET.” The Countess said the
assertion made by Professor Peter
Littlejohns (left) was “not accu-
rate.’ Extract from Hansard:
http://www.publications.
parliament.uk/pa/ld200809/ldhan
SPECIAL...CAMPAIGN SPECIAL...
FURY AT JOURNAL VIEW
AN article in the British Med-
ical Journal about the High
Court challenge has sparked
fury from M.E. campaigners.
Clare Dyer stated in the BMJ:
“Several patients disagreed
with the guidance, and a pa-
tient member of the group
resigned in protest.”
Annette Barclay, founder of
the nice me court website
said: “Clare Dyer must have
been at a different High Court
hearing to the one I attended.
“The courtroom was full of
ME patients...they sat in
wheelchairs or on small fold-
ing chairs huddled over in
pain. Outside the court a
mother of a young child with
ME unfurled a banner with
dozens of photos of people
OPPOSITION TO CONFERENCE
SSB has united with other
groups to challenge the
content of health training.
The West Midlands M.E.
Groups, or WMMEG, issued
a statement about the NHS &
ME/CFS Education and
Training Conference held in
April in Milton Keynes. The
conference is run by the Clin-
ical Network & Research
Collaborative - the group
overseeing education and
training of NHS professionals
- in partnership with AfME
and AYME.
Jenny explains: “Keynote
speaker is Professor Mansel
Aylward, Director of the Un-
with the
disease.
Hardly a
few
patients
unhappy
with the
NICE
Guideline
on
CFS/ME!
“Some of
the great- Remember this? More than several, don’t you think?
est support
came from grassroots level but experienced enough to
support groups all over the notice the suffering that
country. Nearly 90 per cent NICE Guideline had brought
supported the Judicial Review in their area. They represent
and were against the NICE over 18,000 people with ME
Guideline. These were group and CFS.”
leaders often too ill to take Read the BMJ article at:
an interest in medical politics http://www.bmj.com/cgi/eletters/
338/mar17_1/b1110
um Centre for Psychosocial A senior CCRNC representa-
& Disability Research Cardiff tive will be invited to speak
University. and answer questions at the
“His speech is on Pathways next Forward-ME meeting.
to Work – which is in fact his The Countess of Mar will ask
own back to work scheme. in the House of Lords when
“Our statement was sent to NICE will formally review
the All party parliamentary the ME/CFS Guideline. Con-
Group on ME. After scant cerns about the insurance in-
consideration our concerns dustry's attitude to ME/CFS
were “noted” by Andrew following the NICE case have
Stunnell MP but he said the been raised in a Countess of
APPG “were not able to inter- Mar letter to Lord Darzi. As a
vene”.” result, Department of Health
Undeterred, WMMEG sent officials are writing to
the statement, plus a letter Health-Insurance News about
supported by 27 groups, to the inaccurate comments re
Forward ME, read at their ME/CFS on their website.
Apr 21 meeting. The result: 7
 ...RESEARCH FOCUS...RESEARCH
THE TROUBLE WITH...
Research has been focusing lately on testing for post
exertional malaise in ME/CFS patients. This is a defining
criteria for ME, and a good area to look for differences
between ME and other chronic fatigue states…with the
hope of finding a diagnostic test for subgroups.
THERE exists a very basic
and still widely misunder-
stood aspect of ME/CFS...
Why do patients have so
much trouble with exercise?
Staci Stevens, the founding
Executive Director of the Pa-
cific Fatigue Lab, explains:
“Many researchers look at
ME/CFS patients when
they’re at rest- at baseline.
“But as any ME/CFS patient
knows, the real problems
occur when their systems are
under stress due to too much
activity. We’re taking a close
look the physiology of CFS
patients as they undertake the
most stressful activity of all –
exercise.”
The Lab has created a new
exercise testing regime, two
exercise tests two days in a
row and other tests (known as
the Stevens’ Protocol).
The post-exertional problems
reported by ME/CFS patients
for so many years now have a
chance to show up – and
indeed they have.
Lab results are both profound
and disturbing. About half of
the ME/CFS patients they’ve
tested do, in fact, ‘fail’ or
8 when assessing new study
significantly under perform
in the first single exercise
test – they cannot generate
normal amounts of energy
even when they’re ‘rested’.
“It’s the rest of the patients
that are so intriguing,
though” Staci adds. “ When
you give these patients a sec- derstand format
ond test a day later many of
them will fail as well, and
fail spectacularly.”
The amount of impairment
the Lab sees can be astonish- Story section, one of many areas
ing - some patients suffer as
much as a 50% drop in their
ability to produce energy the For more information go to
next day. Ms. Stevens spoke
of a man in his 20s whose
next day exercise tests were
worse that those of a healthy these two groups should be
85 year-old. In a hospital set- separated in research studies.
ting his cardiopulmonary ex-
ercise profile would suggest This article is an extract from the
he had heart failure.
The Pacific Fatigue Lab’s
results suggest that the Cana- PRJan09Pacific.aspx
dian Consensus group is cor-
rect. During either the first or
second exercise test a large
subset of patients showed
significant physiological ab-
normalities in their ability to
produce energy. Another sub-
set of patients did not. The
Lab’s findings suggest that
The Pacific Fatigue Lab in
California investigates exercise
in people with ME/CFS . It is
run by three exercise physiolo-
gists, Dr. Christopher Snell
(Ph.D), Dr. Mark Van Ness
(Ph.D) and Staci Stevens
(M.A.), a researcher with
ME/CFS.
Phoenix Rising provides up to
date information on the latest
research and treatment news
on ME/CFS in an easy to un-
Anyone with an interest in
ME/CFS is invited to take a
look and contribute in the Your
inviting comment and discussion
www.aboutmecfs.org
Phoenix Rising newsletter (Jan
09) by Cort Johnson:
http://aboutmecfs.org/News/
What happens to you when
you have tried to exercise?
Text us:
07906 466 682
FOCUS...RESEARCH FOCUS...
...
exercise test onsymptoms,
Post-exertional an patients. The researchers’
including pain and ‘malaise’,
electronically braked cycle hypothesis is that patients
are characteristic of ME, but with confirmed ME/CFS plus
objective ways of measuring post-exertional symptoms
them are lacking. Modern
will have a decreased
medicine likes to ‘measure’
complaints and tends to performance (as measured by
devalue or discount those it maximum oxygen
cannot. consumption) on an exercise
test completed 24 hours after
There is an urgent need to the first as compared with the
have objective tests for initial test. By contrast,
ME/CFS. Physical exertion is
control subjects (matched for
difficult, but it has been
age and chronic activity
suggested that repeat testing
with a graded exercise test level) will have similar
might show quantitatively that performance on the two tests.
patients do not recover as If successful, the pilot data
quickly could be key to a successful
as would be expected. application for funding for a
larger comprehensive study
If this is the case, then dual
to better define, measure and
graded exercise tests separated differentiate the symptoms of
by 24 hours might indeed be a
useful element in diagnosing
patients with ME/CFS from
those with other medical
conditions.
IN Britain, a study looking ergometer while connected to Have you tried to explain to
into exercise tolerance is be- a metabolic cart through a friends or medics what happens
ing backed by ME Research mouthpiece. Effort in each when you overdo it?
UK. test will be assessed from
A pilot investigation, blood measurements of peak Whether Graded Exercise
Therapy or your own findings
Exercise Tolerance in blood lactate concentration.
after a busy or unusually active
Patients Diagnosed with The team will examine
day.
ME/CFS is being led by Prof. patients using the Canadian
Brian Macintosh (Professor Consensus Criteria for We’d love to hear your findings.
and Associate Dean of ME/CFS (2003) as well as A follow-up on the trouble with
exercise is planned for June.
Kinesiology at the University the standard 1994 CDC
of Calgary) and Dr Ellie criteria.
Email your stories to:
Stein. This is a basic assessment
The study will require each step which ME Research UK mecentralnews@gmail.com
subject to perform a is requiring all its prospective
jlgriffin@blueyonder.co.uk
symptom-limited incremental grant-holders to undertake
9
 ...RESEARCH FOCUS...RESEARCH
Chronic Pain Linked to Low Vitamin D
LACK of vitamin D may be a little
recognised source of increased pain and
impaired neuromuscular functioning
according to researchers.
"Physicians who care for patients with
chronic, pain that seems musculoskeletal -
and involves many areas of tenderness -
should strongly consider checking vitamin-D
level," Michael Turner, MD, from the Mayo
Clinic in Rochester, Minnesota, said.
"For example," he added, "many patients who
have been labelled with fibromyalgia are, in
fact, suffering from symptomatic vitamin-D
inadequacy. Vigilance is especially required
when risk factors are present, such as obesity,
darker pigmented skin, or limited exposure to
sunlight."
Dr. Turner led a study published in the
journal Pain Medicine in November 2008.
The work suggests a correlation between
inadequate vitamin-D levels and the amount
of narcotic medication taken by chronic pain
patients. Read more on this at:
http://www.medscape.com/viewarticle/590
151
The Psychologist News:CBT & CFS
Researchers at Stony Brook University, New
York have questioned a key assumption
underlying cognitive behavioural approaches
to chronic fatigue syndrome (CFS). Patients
treated with CBT tend to report feeling better,
a benefit that is thought to come about via a
gradual increase in their activity levels. In
turn, this activity increase is considered to
help calm patient fears of symptom flare-ups
and to reverse the physical de-conditioning
associated with CFS.
However, in their study (Journal of Clinical
Psychology) of 11 people with CFS who
were treated with CBT, Fred Friedberg and
Stephanie Sohl found a mismatch between
what participants reported and actual meas-
ured outcomes.
10
Many of the participants reported feeling bet-
ter, but an actigraph attached to their waist,
which measures movement, and a six-minute
walking test revealed that some of these
'improved' participants were actually less or
only equally active after treatment compared
with before. One possible explanation is that
CBT is effective not through increasing activ-
ity levels as such, but rather by helping peo-
ple achieve a healthier balance between
activity and rest – for example performing
mild exercise in the place of activity that is
more work-related.
Jenny says: The PACE trial – an ongoing
study in the UK on ME/CFS, which compares
the efficacy of using Adapted Pacing Therapy
(APT ) or CBT or GET as treatments for
ME/CFS– is not using actigraphs.
IACFS/ME Conference, Reno, Nevada
This was attended by 167 ME/CFS research
scientists and clinicians from 17 countries
around the world. Oral presentations were
made by 61 research scientists and clinicians
during the professional sessions and 54 poster
presentations of research papers. Some
common themes in the research presentations
were:
Ÿ Subgrouping patients by symptom
clusters and positive findings
(infection, autonomic problems, etc.) is
the way forward for CFS and will help
to make treatment more effective
Ÿ Evidence pointing to problems with
energy metabolism is "hot" again
Ÿ Infections with viruses and other
agents (like Lyme) are important, but
the science is still not "mature"; tissue
culture tests are more meaningful than
antibody tests, but are harder to get
done well
For a really good overview see:
http://www.cfids.org/cfidslink/2009/040103.asp
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