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Autumn Newsletter 2011

SSB Contacts: Like to talk to someone?

Jo: 0121 444 5177 Sun - Fri 12 noon - 7pmJo will visit members who live within a reasonable distance of Kings Heath.

Jenny: 0121 689 0777 Text only 07785 958 872

And don’t forget you can now:� join Facebook (Solihull and South Birmingham ME Support Group)

� get in touch with someone on your SSB Contact ListRead the latest news on the new website: http://ssb4mesupport.weebly.com/news.html

Member’s news, thoughts or articles for our newsletter or website are very welcome. Postto Jenny Griffin:59 Cartland Road,Stirchley B30 2SD or email to jennylg@live.co.uk

or just give us a ring on the numbers above

Your next newsletter will be in DecemberTake care, Jenny

Forget-me -not

SOLIHULL & SOUTH BIRMINGHAM ME SUPPORT GROUP

Partner group of The Young ME Sufferers TrustGroup Friend of ME Research UK

Member of the West Midlands ME Groups ConsortiumSOLIHULL & SOUTH B’HAM

M.E. SUPPORT GROUP

Disclaimer:Solihull & South Birmingham does not endorse or recommend anytreatment/therapies/practitioners but merely reports on discussions or in-formation received. The views expressed do not necessarily reflect theviews of the group. The reader should always make their own enquiries

before acting on any information contained in this newsletter.

National Organisations:ME ASSOCIATION 01280 818 968 www.meassociation.org.uk

The MEA ‘me connect’ helpline is 0844 576 5326. (Available every day of the week - phone between these times: 10am-12noon, 2- 4pm and 7- 9pm.)

The 25% ME Group (severely affected) 01292 318 611 www.25megroup.orgThe TYMES TRUST (young pwme) 0845 003 9002 www.tymestrust.org

INVEST in ME 02380 251719 www.investinme.orgME Research UK 01738 451234 www.meruk.org

ACTION for ME 0845 123 2380 www.afme.org.uk

Local OrganisationsBirmingham Disability Resource Centre (Yardley) :

0121 789 7365 www.disability.co.ukCarers Centre Birmingham: 0121 678 8000

www.birmingham-carers.org.ukPrincess Royal Trust Carers Centre Solihull: 0121 788 1143

Freshwinds (includes local DIAL office) [Selly Oak]0121 415 6670 www.freshwinds.org.uk/

DIAL Solihull 0121 770 0333 www.dialsolihull.org.ukDisability Info & Resource Centre (Erdington) -

Lisieux Trust (including DIAL office): 0121 382 6660[DIAL provides a FREE, impartial and confidential information and advice service for disabled people and

their carers. The service is run by people with disabilities for people with disabilities and their carers.]Shirley & Solihull Citizens Advice Bureaux - advice line: 0844 826 9716

Birmingham Law Centre ( provides legal advice and caseworkservices to individuals and communities in need). 0121 766 7466

Home visits available. www.birminghamlawcentre.org.uk

Monday September 12th Solihull & South Birmingham ME Support Group,

O on behalf of the West Midlands ME Groups Consortium, announce that our guest speaker will be -

Professor Derek Pheby speaking on

“Two ways to help people with ME”� the National Disease Register

(why do we need it & how can we participate?)� the RESUME CFS proposed GP pro forma

(how to get more help from your GP!)The meeting starts at 7.30pm and will be held at

the Shirley Community Centre, Stratford Road, Shirley B90 3ADLight refreshments will be available.All are welcome – admission free.

There will be short Question & Answer session after the break.Read more on pages 4 & 5

Please note!!!We have a NEW website and group email address

http://ssb4mesupport.weebly.com/Email: ssb4me@live.co.uk

See more about this on page 19

'Vicious campaign' against ME researchersWhat’s been going on in the media? Who said this?

See pages 10 & 11

The launch of our SSB “Feelings Book”Want to know more...?

See page 9

2

How are you all? As well asyou can be, I hope.

We’ve had another mixedsummer for weather butnothing too extreme, thankgoodness! It’s been a busysummer in the group as youwill see. We have beenworking hard to get the web-site and the Schools bookletfinished before September.

It was the first time I haveever done anything like awebsite and after a bit,when I began to unravel themysteries of how to do it, Iquite enjoyed it. Only trou-ble was that it took me ages- all those links - and I neverdid anything else. It wasn'tuntil all my ironing fell outof the cupboard one day,

that I realised quite how ob-sessed I had become!George has now agreed tobe a co-editor, especially forthe U25 page, so that willbe a help & stop me twid-dling all day!

I would like to thank Benvery much indeed for look-ing after our old website forso long. It has served uswell over the years and it’samazing how many peoplehave found us through thatsite. We hope that Ben willnow have more time tospend with Elaine and Toby,and that our new websitewill be half as successful.

We have enclosed the latestcopy of the ME ResearchUK’s magazine

‘Breakthrough’, as weknow many of you like toread about the latest re-search. A reaaly good edi-tion this time and we wouldlike to thank MERUK forsending us all these copiesfor our group.

News on the Library service,and an updated Contact Listare also enclosed. Lots go-ing on in the newsletter thistime - it was hard to cram itall in and I am bound tohave left something out!

I hope that lots of you willbe able to contribute to ourgroup ‘Feelings Book’ (seep 7) It would be nice tohave a record of what ourmembers have been think-ing and feelings over theyears.

Sorry that I have changedthe group email address aswell, but I would have tohave changed it eventuallyas my dear old desk top PCis finally grinding to a halt!Don’t worry though, I willbe keeping on my old emailaddress for a while so Iwon’t miss anyone who istrying to contact me or thegroup on my old email.

Take care & keep in touch,

As always, many thanks to my newsletter working party partner, Gurminder,for all her help and support - Jenny

KEEP IN TOUCH!For any thoughts, feedback, comments, ideas or just to have a chat

you can contact us:By phone: Jenny 0121 689 0777

Jo: 0121 444 5177 Sun - Fri -12 noon - 7pm

By email: jennylg@live.co.uk

On Facebook: Solihull and South Birmingham ME Support Group

By textphone: 07785 958 872

By post: 59 Cartland Rd Stirchley B30 2SD

Extract from:

The Autumn

Go, sit upon the lofty hill,And turn your eyes around,

Where waving woods and waters wildDo hymn an autumn sound.

The summer sun is faint on them —The summer flowers depart —

Sit still — as all transform’d to stone,Except your musing heart.

How there you sat in summer-time,May yet be in your mind;

And how you heard the green woods singBeneath the freshening wind.

Though the same wind now blows around,You would its blast recall;

For every breath that stirs the trees,Doth cause a leaf to fall.

Elizabeth Barrett Browning

Poetry Corner

APPG = All Party Parliamentary GroupBACME = British Association of CFS/ME(formerly the CCRNC = CFS/ME Clinical Research Network Collaboration)CNCC = Clinical Network Coordinating CentreDLA = Disabled Living AllowanceDoH = Dept of HealthDWP = Dept of Work & PensionsESA = Employment and Support AllowanceIB = Incapacity BenefitICC = International Consensus CriteriaLMDT = Local Multi Diciplinary TeamMRC = Medical Research CouncilNICE = National Institute of Clinical ExcellenceNIH = National Institute of Health (USA)PACE = A comparison of Adaptive Pacing Therapy (APT), Cognitive BehaviourTherapy (CBT), Graded Exercise Therapy (GET)PWME/pwme(s) = Person(s) with MERCGP = Royal College of General PhysiciansRCPCH = The Royal College of Paediatrics and Child HealthSSB = Solihull & South B’ham ME GroupWMMEG = West Midlands ME Groups (a con-sortium of West Mids ME support groups)

Inside This

ISSUE

2 Jenny writes

3 Poetry Corner

4 Group News

7 In Touch - your news

10 In the media - it’s all ME ME ME

12 U25s Page

13 ME News

15 Comedy Central

16 Research News

18 Committee News

SSB LIBRARYYour Library List update is

enclosed with thisnewsletter

3

4

...group news ...group newsMEETING DATES

SEPTEMBER 12thTalk by Professor Derek PhebyAt Shirley Community Centre

7.30 pm

OCTOBER 10thAt Shirley Community Centre

7.30pm

NOVEMBER 14thAt 59 Cartland Road B30 2SD

1pm

Group meeting onSeptember 12th

If you can't attend and have any questions that youwould like to ask you can send them to Jenny before-hand. We will do our best to get as many questions

asked as possible.Disease Register application forms, Guidance notesand GP Evaluation pro formas can be downloaded

from http://www.resumecfs.org.uk/links.htmlThis meeting will be filmed by Resumecfs and somecopies of the DVD will be available to all the grouplibraries of those groups who are members ofWMMEG to provide a opportunity for the informationto reach all those pwme who may not be able to at-tend. A follow up written report will also be availablefor newsletters after the event to make sure we reachas many of or WMMEG members as possible – espe-cially the severely affected.

Our May ME Awareness Coffee Morning

Alison , Diane, James and LynnWe held another very enjoyable and successful

coffee morning in May Awareness Week.There was good turn out and we sold lots of

SSB cards and cakes. We all loved the cakes -George sent some home made scones, yummy!

We raised £150 in all for ME Research UK. Thiswas doubled by our supporter Martin’s firm, Na-tional Grid, so that made a whopping £300donation for biomedical research!Lots of good chat and everyone was pleased tosee Mary turn up looking much better- it turnedout that she had done the Lightning Process.There was much interest in this and it ledto her coming to the June meeting to tell us allabout it, as our original speaker, Jo C,wasn’t able to come in June after all.

It was lovely to see so many of you there and es-pecially nice to see two of our long standingmembers, Marjorie and Anne, who we hadn’tseen at a meeting for ages .Needless to say the chat went on and on and wewere still catching up on all the news when mytwo little granddaughters arrived home fromschool. They joined in the event with enthusiasmand rapidly persuaded their Great Grandma(Marjorie) to buy them a cake each!

Many thanks Diane, who was a fantastic help -not only doing all drinks and selling cakes and-cards, but most of the washing up as well! And

thanks to Jo, Steph, Mary and Bridie who help edwith the washing up and contributed greatlyto the interesting chat session in the kitchen!

L to R : Mark, Jo, Bridie, Tony and Mary

. ...group news ...group newsAbout Professor Pheby

Professor Pheby is currently Visiting Professor of Epidemiology at Buckinghamshire New Universityand has had a long-term interest in ME/CFS. He was, successively, a member of the National Task

Force, the Chief Medical Officer’s Working Group, and more recently, the Medical Research Council’sExpert group on ME/CFS. He was the Project Coordinator of the National ME/CFS Observatory where,

a three-year multi-faceted programme of epidemiological and qualitative social research, including aNational Disease Register for ME/CFS : Report of the Pilot Study can be seen at:

http://www.biomedcentral.com/content/pdf/1756-0500-4-139.pdfIt is worth noting that Professor Pheby used, along with other criteria, the Canadian definition which

defined more precisely a subset of these patients.After the completion of the National ME/CFS Observatory projects, Professor Pheby was keen to con-tinue to support the development of a National Disease Register of people who have unequivocal andmedically-confirmed ME/CFS - and are willing to consider taking part in research studies. To this endhe set up, along with others (including Alistair McLachlan, one of SSB’s members), RESUME CFS - acharity formed to promote research into the Epidemiological and Social aspects of ME/CFS. RESUME

CFS are in the process of adding those people with severe ME who participated in the CHROMEproject (and who have given their consent) to the National ME/CFS Disease Register and are currently

making contact, including via local ME Support Groups,with more potential volunteers.

http://www.resumecfs.org.ukPS We understand that Prof Pheby has also been involved in the setting up of the new Biobank (p 17

Meetings News June Meeting

The topic for discussion at this meeting was theLightning Process (LP). Just to make it clear, thiswas most definitely not a meeting to promote LPand a disclaimer was given before the meetingsaying that SSB did not endorse any therapies/treatments etc, but merely provided a forum formembers to discuss various topics of interest tothem.Our original speaker, Jo C, was unable to attendso we asked Mary Donelan, one of our members,to speak to us about her experience with the LP toavoid disappointment. Mary, who had only justtold us at the May meeting that she had done LP,agreed to step in at the last moment. She bravelysaid she would speak for a few minutes on herpersonal experience and then answer questions.Mary told us she had had ME since 2004. It tooktwo years to get a diagnosis. She was very ill andwas looked after by her mother. She read aboutLP in 2008 and finally decided to go in 2010. Shesaid that LP was not a cure, which surprised us.She said that the process involved visualisationand saying words. She said the course lasted threedays (10am - 3pm) and it cost about £526- 600.

She added that the course was quite hard workand was an ongoing process. The LP put forwardthe theory that it helped to control the dysfunction-al adrenal responses in ME patients. She said itwas no good going if you didn’t believe that itwould help you. She believed that it had been atremendous help to her and that even if it had costa million pounds she would have felt it was mon-ey well spent.We then opened the meeting to questions and dis-cussion. The first question asked was - can youtell us how it works? Mary said she couldn’t, asthe LP therapists say it won’t work without atrained therapist. She agreed she had to sign aform to say that she would not disclose the actualcontents of the process.Mary was then asked by another member how onearth she could do this course if she was so ill, asher daughter couldn’t even contemplate it as shewas severely affected? Mary said her problemwas more one of delayed fatigue so she rested forthree weeks before going and then she wasable to get through those 3 days, however, othersshe knew did not make it to the course. Continued on page 6

5

....group news ...group news ....Continued from page 5This member said she didn’t believe that this waspossible. Another member said that her daughterhad done LP two years ago and she was now verywell and was working full time.Others discussed that it may be similar to CBT orother such mind therapies that were available onthe NHS (Mary said not) and one suggestedMindfulness as an alternative. We discussed thebenefits of relaxation in relation to adrenal stress.We then discussed the dangers of LP if you had aphysical illness . One member said that he hadbeen diagnosed recently with Addison’s Diseaseand that he thought that doing LP could be veryharmful to him. Everyone agreed that it highlight-ed the need for full and proper diagnoses, beforeundertaking any such therapy.Someone asked if Mary still had to practice theLP and why. Mary agreed that it was an ongoingprocess and she had to use it if she had setbacks -such as after attending the last group meeting inMay. She said it took her a couple of days to getback to where she was before. A member thenquestioned whether the LP could rightfully becalled a cure if the person was still experiencingsymptoms, and he said that at the May meetingMary had said it was a cure and he was relievedto hear that she had now said, in her opening talk,that it was not. Mary agreed that she had sincechanged her mind about this. This member thensaid that he believed the LP was more a way ofcontrolling the symptoms/illness rather than anactual cure - e.g if it was a drug therapy then itwould work more in the same way as insulin doesfor diabetes, rather than, say, an antibiotic in cur-ing an infection. Mary agreed that this could bethe case.We thanked Mary very much for her giving us avery interesting talk and answering all the ques-

tions. She did very well and it was clear that shewas much improved in health from the last timewe saw her (around 2 years ago), but she lookedquite tired after all that effort. Most of the mem-bers there could see that she was not yet fully re-stored to her former health before she had ME.There was very good attendance at this meeting,showing the high level of interest in this subject.Contrary to some people’s expectations, the gen-eral feedback from those who attended was thatthe LP was not for them at this time.After the talk and question time, we met and chat-ted with Sue, whose daughter, Grace, had ME.This was her first meeting and we explained itwasn’t usually this ‘busy’! Grace has now joinedand we are very pleased to welcome her to ourgroup.

July MeetingAt this meeting we welcomed Karen Hunt, whospoke about the benefits of Aloe Vera, and SerinaKelly, who spoke about her postgraduate work indesigning clothes that were suitable for peoplewith ME. Karen spoke about how Aloe Veracould help with all sorts of things such as diges-tion. It is very good to apply on burns. It can bemade into drinks, creams, gels etc. Serina told us that her mother had ME and shewanted to do something helpful for people withME because of this. After a break for refresh-ments, Serina had a chat with many of us sepa-rately about our views and experiences ofwearing clothes that were both suitable and com-fortable when you had ME. She had some goodideas like velcro fastenings instead of buttons orzips etc. We were very pleased to meet Michelleand her sister, Mary, for the first time. Welcometo the group, Michelle!

Message from Cathy Cook, Solihull Carers Centre“I have recently been recruited to the role ofYoung Adult Carers Support Worker in Solihull.

This is a new project that has been created to iden-tify and support young adult carers aged 18-30(with primary focus on 18-24 year olds) make asmooth transition into adulthood. Many carers inthis age group are hidden in society, and do not

have access to the same life opportunities as theirpeers due to their caring responsibilities. (We

can also support them if they are living out of theSolihull area but the person that they care for

lives in Solihull). If you would like further infor-mation about Solihull Carers Centre*,

the website is www.solihullcarers.org.Please feel free to call me on the number below

if you have any further questions.Many thanks for your time - Cathy Cook”Young Adult Carers Support Worker

0121 788 1143 07519 557867*Leaflets are available from Jenny

or download from our new SSB website:http://ssb4mesupport.weebly.com/contacts-

and-links.html6

In touch...your page...your news JO’S TRANSPORT

If you would like a lift to ameeting, please phone Jo Taylor on

0121 444 5177.We will do our best to arrange this.If you can offer a lift to meetingsplease phone Jo on 0121 444 5177

Message fromthe Contact ListWorking Party!

Clare B has sent us a photo of Amelia ather christening earlier this year.

It is very nice to see that Amelia isthriving. Isn’t she gorgeous?

Unbelievably Amelia will be one onSeptember 4th

Happy birthday, Amelia!

ME RESEARCH UK

ARE NOW ON SALE!tel: 01738 451234

(using a debit or credit card)or go to:

www.meresearch.org.uk/support/cards.html

We have enclosed a full updatedcopy of the Contact List with

this newsletter.This is because there have been

some new members and quite a fewupdates in information.

We thought it would be helpful tohave a completely new version rath-er than lots of updates on various

little bits of paper!Don't forget if you are going to

dispose of your old Contact Listdo it safely - either shred it or burn it,

but just be careful!

� It is FREE to join!� To get on Facebook, google Facebook

and follow the guide for joining - youwill need an email address and a pass-word� If you are new to Facebook there is a

link on the Facebook page which willgive you easy to follow step by stepinstructions on making the most out ofthe website.� To find the group page type Solihull

and South Birmingham ME SupportGroup in the search box.� When you get to our page, pressing the‘like’ button will enable you to be auto-matically registered as a member ofour Facebook group if you are a mem-ber of our group.� On joining the group you will receive a

welcome email which will tell you howto go about the site

JOIN OUR FACEBOOK!

7

SSB Cards on Sale

In touch...your page...your news

We have a few packs left of the Solihull & South B’hamFRIENDSHIP and THANKYOU cards

To order these cards fill in the ORDER FORM enclosed with your last newsletteror get in touch with Jenny via the usual contacts.

All cards £3.99 for a pack of 5 (including envelopes)

Thank you Card 1

Solihull & South Birmingham ME Support Group

Friendship Card 1 Friendship Card 2 Thank you card 2

SSB Library “Would it be useful to prospective

readers to encourage user reviews? Saybrief 20-25 words max summaries of natureof contents, ‘readability’ and (personal)

relevance. I know I would have foundthis very useful indeed.”

To order a book from ourlibrary you can:

Fill in a library form and post it toJenny Griffin

59 Cartland Road Stirchley B30 2SD

[Books/DVDs/Documents will beposted out in jiffy bags with the return

postage stamps enclosed]

Ring Jenny on 0121 689 077Text on 07785 958 872

Email: jennylg@live.co.ukCome to a meeting at Cartland Rd

*See Library List

http://ssb4mesupport.weebly.com/about-our-group.html

Book reviews

http://ssb4mesupport.weebly.com/all-about-us.html

on our new SSB website

Answer:We agree, Steve! You will

find our first issue of reader reviewsso far enclosed with this newsletter along

with an updated Library List. Please keepsending in your reviews - we hope to

have a second issue soon.(PS Just books at the moment)

Happy Birthday to:SEPTEMBER – Karen Byfield; Adrian Earle; Clare Burton; Maggie Scott; John Drinkwater;Nayyar Areehy

OCTOBER – Sue Guy; Jemma McAuliffe; Marianna Puzzo; Jill Izenstain; Sue Mitchell; Lucinda Troth

NOVEMBER – Dawn Harris Nina Saeed; Gillian Caine; Doreen Gardner; Steve Lund; George Beech; Donna Reeves; Sandra Line

8

In touch...your page...your news

How do you feel?Happy? Frustrated? Excited?

Anger? Love? Hate? ...

An initiative that was put before the committee ear-lier this year was the idea of a feelings book,which I have mentioned in a previous newsletter.As a group we know that there are times when wewant to tell someone something, let out our emo-tions and, for those who are lucky enough, sharethat amazing day or few hours out that we are rare-ly able to do.But how do you express how you feel?Together as a group we are going to produce ourown “Feelings Book”, an ongoing project, but

something to be published around M.E Awarenessweek 2012. A book, which will be collated intosomething visually engaging and emotive in itstexture and appearance, expressing life with M.Ein a different form - my artistic side clearly resur-facing here a little!In your newsletter pack you have been allocated asheet of A4 paper to get you started. If this paper isnot suitable you can use whatever variant you wishas long as it is A4 in size. You can either post oremail your feelings contribution to Jenny Griffin -or bring them along to one of our meetings whereyou can either hand it in, discuss it with anothermember or share with the group on how you havebeen feeling. There is no limit on your number ofsubmissions. You can put your name on it or it canbe anonymous.

Paint?Pencil?Pen?Computer?Photographs?

How will you express your feelings?

The launch of our SSB “Feelings Book”

Member’s suggestion:“Can we please have a list of commonly

used abbreviations in the newsletter? I keepforgetting what they all mean!

Answer:Of course, I should have thought of this before!The new Abbreviations List is on page 3. If you

have any more suggestions of abbreviationsthat could be added, please let me know -

Message from members:A couple of members have asked me to tell youthat they have been tested and found to havelow Vit D levels. However they both found thehigh dose Vit D medication given to themmade them feel a bit unwell.Jenny - Maybe it is worth asking your medicaladvisor if you can start off at a slightly lowerlevel?

Solihull Shopmobility

There is now a new service atChelmsley Wood shopping centre

To hire a wheelchair or electric scooter inadvance (Mon - Fri 10am -4 pm)

Tel: 0121 704 6017

Solihull Drury Lane(Mon - Sat 9am - 4.30pm)

Tel: 0121 711 8701

Solihull Touchwood(Mon-Sat 9.30am - 5pm & Sun 11am - 4pm)

Tel: 0121 711 4231

9

In friendship

In the media - it’s all ME ME MEDuring the last few weeks there has been anastonishing amount of media coverage fo-cused on ME. Sadly, before those of you whosay any publicity is better than no publicity,none of it was good for people with ME. Fol-lowing our look at how ME became CFS inour May newsletter, we take a look at howthe same people who changed the name,talk about us in the media. This article isjust an overview of the recent media cover-age - the full interviews, letters etc can beseen on our new website ‘news page’, and asmaller collection with members’ commentscan be seen on our Facebook page.

When did it start?It all started with an interview on the Radio 4

‘Today’ on July 29th when (seemingly out of theblue) Tom Fielden (Science correspondent on theToday programme) highlighted “the torrent ofabuse hindering ME research”. During the courseof this programme we heard taped interviewsfrom Professor Simon Wessely, Dr Esther Craw-ley and Professor Myra McLure. Much later in theprogramme we heard a response from Dr CharlesShepherd of the ME Association.

What did they say?Scientists working on Chronic Fatigue Syndrome(CFS), or ME, say they are being subjected to acampaign of vicious abuse and intimidation that ishampering research into the causes of the condi-tion.

Professor Simon Wessely, of King's College Lon-don, said: "It's direct intimidation in the sense ofletters, emails, occasional phone calls andthreats..." He went on to say it appeared to him:

“that some ME campaigners would rather have anincurable virus than a potentially curable disor-der”.

“Sadly some of the motivation seems to come frompeople who believe that any connection with psy-chiatry is tantamount to saying there is nothingwrong with you, go away, you're not really ill,"says Dr Wessely. "That's profoundly misguided.

They fall victim to the label, and believe that themere involvement of psychiatry denigrates themand denigrates the condition.". Professor Wesselywent on to say he felt safer in Iraq or Afghanistanthen in Britain doing ME research.

Dr Esther Crawley said that she had been targeted when she an nounced that she had received fund ing for a pilot study into the Light ning Process and children. Some extracts from protestors were read out, one of which she said shebelieved was a ‘death threat’.Professor McLure said she received a torrent ofabuse after failing to replicate an XMRV study.She said: “It really was quite staggeringly shock-ing, and this was all from patients who seemed tothink that I had some vested interest in not findingthis virus,". She went on to say that she would nolonger be doing any research in this area.ME Association's Dr Charles Shepherd condemned theabuse of researchers, but said sufferers had a justifiablecomplaint that almost no government-funded re-search was looking at the bio-medical aspects ofthe illness. He said: "The anger, the frustration, isthe fact that all this effort, all this government-funding, has just been going to the psychologicalside," he said. Dr Shepherd also pointed out:thereare an estimated 250,000 people with ME in theUK and only a tiny minority were involved in thissort of behaviour. Dr Shepherd added that themedical profession had renamed and redefinedME to CFS which was a much wider group of clin-ical presentations involving a whole spectrum ofpatients. He said it was rather like putting every-one with a chronic headache ranging from mi-graine to brain tumour and saying they have

‘chronic headache syndrome’ and saying they allhave the same cause and they all have the sametreatment.A synopsis of the radio 4 interview canbe heard herehttp://news.bbc.co.uk/today/hi/today/newsid_9550000/9550992.stm

What happened next?Naturally the press all picked up on this and itwas widely reported in most of the daily newspa-pers the following day.There then followed a steady drip, drip, drip of

10

...or is it?articles and further in depth interviews with Pro-fessor Wessely in the Times on Aug 6th and inthe Observer on Aug 21st.On July 31st, in the Sunday Times, columnistRon Liddle wrote a rather unpleasant article un-der the banner headline of “Shoot the medical mes-senger - see if that will cure you”. The author hadobviously spent some time surveying the ME As-sociation website and Facebook as this becamethe main thrust of his discourse - to quote:

“Indeed, such is the foaming paranoia on this sitethat you begin to suspect that if ME does have aneurological basis, it’s probably going to be theleast of their mental worries.”.In a spirited response Neil Abbot of ME Re-search UK wrote: “Rod Liddle was as immoder-ate as the outrageous behaviour he wascriticising . There are around 193,000 myalgicencephalomyelitis (ME)/ chronic fatigue syn-drome (CFS) patients in Britain, and most havenever threatened scientific researchers. So whypaint a picture — “malingering mentals”,

“foaming paranoia” — tarring thousands with theactions of a few?”On August 4th David Aaronovitch, also a regularcolumnist in the Times, just had to mention MEin his article (‘Don’t take it ill, but there’s no medi-cal utopia’) stating “It is the contention of manysufferers of these debilitating conditions(overwhelmingly women) that there is a directbut undiscovered physical cause of CFS/ME, andthat lack of resource, care and commitment iswhat stands between them and a possible cure orprevention. The problem, as they perceive it, isthat the medical profession has hung its hat onthe belief that this often nebulous collection ofsymptoms is more likely to be a manifestation ofan internal problem, located in the mind. This, tothe sufferers, appears to relegate their disease

“merely” to a psychosomatic condition, puttingthem in the same unliked group as depressives orschizophrenics.”On August 7th, Prof Colin Blakemore, formerChief Executive of the Medical Research Coun-cil, popped up in ‘The Times’, defending Wesse-ly et al under the heading ‘Disease of the brain,not the mind, has no stigma’, saying ; “reuniteneurology and psychiatry and chronic fatigueextremists will stop their attacks”.So what was that all about?A first reaction - after the shock - would under-standably be “Who knows?”. What it certainly

was not about was attracting new scientists toME research. Any self respecting new researcherwould run a mile after reading all this.It appears to be a attempt to brand us all as mad,bad and dangerous to know - see the constantreferences to us being fanatical, obsessed withhaving a physical illness, being prejudiced

‘against’ mental illness and the constant linkingof ME and CFS, with ME dominating in somecases. And even a ‘mostly women’ [= hysteria?]from AaronovitchLooking at the wider context we see that severalthings have happened in the ME world recently.Firstly an overwhelming backlash about the ve-racity of the PACE Trial - with many saying ithas little or no relevance to ME. Secondly thepublication of the International Consensus Crite-ria (ICC) a document written by a host of interna-tional ME experts which came out clearly infavour of separating ME from CFS (see p 14).Thirdly the announcement of the MRC to encour-age biomedical research and asking for new re-searchers to come forward for the available £1.5million of funds.Do we have a knee jerk reaction from the psychi-atric school of thought to reinforce and justifytheir ownership of ME, at a time when theirviews are being seriously challenged?One thing which is undeniable is that the choiceof language and the implications of these inter-views and articles, set out to denigrate peoplewith ME. The fact that Wessely et al have beenattacked for their views is not new - Wessely hasbeen whining on about this for many years.I have been to two medical conferences and thebiomedical researchers, Dr John Gow and DrVance Spence, were given a resoundingly warmwelcome by pwme. So it’s not all researchersthen...

Seen on Twitter - (about SW’s interview inthe Times on Aug 6th - Clare Gerada isWessley’s wife and chair of the RCGP )Sam Lister Times @clarercgp ‘worth buying thepaper tomoro (from a family perspective)... SW shdbe in glorious technicolour!’Clare Gerada @fentonaw @SamListerTimesDear Sam. ‘I gather . Hope it is friendly fire - he hashad a difficult week.’

As one long term ME sufferer on the messageboards put it: “He has had a difficult week ??!I have had 1024...” 11

ME news...ME news...ME news

14

*** NEW International Consensus Criteria for ME New doctors’ guidelines are published inJournal of Internal Medicine, 20 July 2011The consensus panel, including the authors of theCanadian Citeria and other eminent ME scientists,are developing Physicians’ Guidelines, whichwill include diagnostic protocol based on the In-ternational Consensus Criteria and treatmentguidelines that reflect current knowledge Theysay; “these guidelines are designed specificallyfor use by the primary care physician in the hopeof improving rapid diagnosis and treatment byfirst-line medical care providers.”Strong support for METhey say:

“ The label ‘chronic fatigue syndrome’ (CFS) haspersisted for many years because of lack of knowl-edge of the etiological agents and of the diseaseprocess. In view of more recent research and clini-cal experience that strongly point to widespreadinflammation and multisystemic neuropathology,it is more appropriate and correct to use the term

“myalgic encephalomyelitis”(ME) because it indi-cates an underlying pathophysiology. It is alsoconsistent with the neurological classification ofME in the World Health Organization’s Interna-tional Classification of Diseases (ICD G93.3).

“Individuals meeting the International ConsensusCriteria have myalgic encephalomyelitis andshould be removed from the Reeves empiricalcriteria and the National Institute for Clinical Ex-

cellence (NICE) criteria for chronic fatigue syn-drome.”See more and find a link to the summary of the newguidelines at:http://www.meassociation.org.uk/?p=7173

Diagnosis begins with assessment of post-exer-tional neuroimmune exhaustion (PENE), ratherthan fatigue. “Post-exertional neuroimmune ex-haustion is part of the body’s global protectionresponse and is associated with dysfunction in theregulatory balance within and between the nerv-ous, immune and endocrine systems, and cellularmetabolism and ion transport. The normalactivity/rest cycle, which involves performing anactivity, becoming fatigued, and taking a restwhereby energy is restored, becomes dysfunction-al.”In addition to the required feature of PENE, theindividual must have seven other symptoms: threethat demonstrate neurological impairment; threethat demonstrate immune impairment; and onethat demonstrates energy production/transportimpairment. (from CFIDS comment July 25th)http://www.meassociation.org.uk/?p=7213

Editors comment: The ICC offer a great opportu-nity to separate out ME from CFS for once andfor all, and it is to be hoped that everyone whorepresents ME patients will be pushing hard toget these criteria accepted.

Dr Sarah Myhill has all restrictions on her licence lifted by the GeneralMedical Council (GMC). She says she will now be holding the GMC toaccount over “a number of failings” in the treatment of her case. Dr Myhillsaid: “The GMC never had a case in the first place and in its prosecution ofme broke the laws of the land including the Data Protection Act, the 1983Medical Act and the Human Rights Act,”On August 19th, in the Western Mail Cardiff and the Shropshire Star, DrMyhill described the GMC as “showing all the symptoms of advanced se-nile dementia”.Dr Myhill has spoken out following a series of GMC hear-ings. The hearings followed complaints about the content of her websiteand her management of a patient. In a statement issued today, Dr Myhillsaid: “The GMC has been incompetently prosecuting me since 2001. In do-ing so it has broken its own procedures and the laws of the land.” Full story at: http://www.meassociation.org.uk/?p=7697

Good news for Dr Sarah Myhill - (and for us)All restrictions on her licence lifted by the GMC

UNDER 25s... By George Beech

I would like to start off by saying a very personalthank you to Jenny for all her hard work of late.She has been working along side myself on ourU25 initiatives and we have produce some amaz-

ing new facilities for the group.

Firstly, our new website looks great!Its there for all our members to enjoy and will be

constantly updated and added to. As U25s wehave been allocated our own slot on our websitewhich I anticipate will be full of amazing stuff

and soon to house the U25’s information booklet(PDF) for your attention. Although co-edited byJenny and myself, this is the group’s website andis there to be both informative and enjoyable for

both inside and outside members.

On a personal note I would like to thank bothLucinda and Laura for their participation into our

U’25s booklet, which is now looking amazingthanks to your input. But also thank you to anyother U’25’s that wished to take part but were

unable to, as I appreciate that not everyone wasable to take part in this at present. However the

booklet is complete and ready to be published inSeptember this year.

It’s been quite a month, not only with all this hotweather but also the struggle of daily living. Asyour U25 coordinator, I appreciate that each dayis different and somewhat difficult for M.E suf-ferers, we have highs and lows, but I would liketo take this opportunity to express my feelings inthat you are not alone. We are so lucky to have

such a friendship bond throughout the group andit is there to be used. I am always here whetheryou wish to write to me, email, phone or text.Whether your are concerned about somethingor just want a chat please don’t hesitate to con-

tact me and that goes out to all members,not just my U25’s.

I shall look forward to seeing some of you at thenext group meeting.

With love to everyone,George

Please note; anything you choose to publish online is notnecessarily private

DO YOU HAVE ANY SUGGESTIONS FOR THE Under 25s SECTION??

What would you find helpful?

If you have any ideas send them toJenny at the usual contacts -

tel: 0121 689 0777 email: jennylg@live.co.uk text: 07785 958 872

Message to all U25s!

under 25s you now have your own page on the new website!Have you got anything you want to say - any photos - any news?

If so please send them to George or Jenny -

georgebeech.designs@live.co.uk jennylg@live.co.uk

12

13

ME news...ME news...ME newsInnovAIT publish New GP Guidelines for CFS

InnovAiT is a journal published monthly as a ben-efit of AiT membership of the Royal College ofGeneral Practitioners. Associates in Training ofthe RCGP receive a free subscription to the jour-nal as part of their AiT membership of the Col-lege. The journal "promotes excellence inprimary care and quality education". InnovAiT

"supports and assists the learning and develop-ment of AiTs as they progress through training".The guidelines contained such gems as:“In this article, we outline GP management ofchronic fatigue syndrome (CFS), the conditionalso known colloquially in the UK as ‘ME’.“

‘Royal College of General Practitioners (RCGP)classifying fatigue within its mental health curricu-lum statement’

'It is important to remember that people with CFSwant to be taken seriously, so show that you be-lieve them.'

'They will feel unable to leave the house'

WMMEG expressed their concern about theseguidelines to the Countess of Mar (Chair ForwardME) in a letter sent on July 21st.The letter can be seen here:http://wmmeg.weebly.com/uploads/4/8/6/8/4868611/110721__wmmeg_innovait_gp_guidelines.pdfThe Countess of Mar has since replied and saidshe was not so happy with these Guidelines either.She said that she would look into it and get backto us.Invest in ME wrote an excellent letter to the au-thor of these guidelines - Dr Jeremy C Gibson -Extract: “The RCGPs, with this guidance, isspreading misinformation with the document inthis form and Invest in ME would like to ask youto request that the RCGPs remove ME from themental health section in the GP Curriculum andplace it in its correct section of neurological ill-ness.....” The full letter can be seen here:http://www.investinme.org/IIME%20Letter%202011-08%2001%20RCGP-InnovAiT-Guidelines.htm

DLA to be replaced byPersonal Independence

Payments (PIP)From 2013/14, all new and existingclaimants of DLA aged 16-64 will berequired to undergo an assessment, re-gardless of the length of their originalaward.The Government is still deciding whetheror not to assess children and those over65. The existing rules of conditionality,that automatically qualify people withcertain impairments or conditions, will beremoved. The existing lower, middle andhigher rates of mobility and care compo-nents will be replaced by mobility anddaily living components, which will bothhave only a lower and a higher rate.Under the proposals outlined in the con-sultation, the application process for PIPwill move away from the current systemwhere people“self-assess” their condition,to one in which an independent medicalconsultation will be required.• Read the proposals at:http://dwp.gov.uk/consultations/2010/dla-reform.shtml

Joint letter to Professor Whiteasking for more information on

the PACE TrialIn a joint freedom of information request to Pro-fessor Peter White, the ME Association, the

Tymes Trust and the West Midlands ME Groups(represented by Duncan Cox of Warwicks Net-work ME) asked data for both primary and sec-ondary outcomes in The PACE Trial that had

been omitted from the published results.The letter can be seen here:http://www.meassociation.org.uk/?p=6171

A response was received from Queen Mary,University of London’s Records and InformationCompliance Manager, basically saying that themajority of information requested was exempt

under Section 22 of the FOIA 2000 on the basisthat the authors intend to publish these in future.

The letter can be seen here:http://www.meassociation.org.uk/wp-content/uploads/2011/06/FOI+from+Queen+Mary.pdf

Quips and Quotes...

COMEDY CENTRAL...

Don't worry about avoidingtemptation. As you growolder, it will avoid you.

- Winston Churchill

Thanks to Alistair for our jokes this time!

I have never hated aman enough to give his

diamonds back.

- Zsa Zsa Gabor

Maybe it's true that life beginsat fifty .. But everything elsestarts to wear out, fall out, or

spread out..

- Phyllis DillerI don't feel old. I don't feelanything until noon. Then

it's time for my nap.

- Bob Hope

Money can't buy you happiness.... But it does bring you a more

pleasant form of misery.

- Spike Milligan

I was married bya judge. I shouldhave asked for a

jury.

- Groucho Marx

The secret of a good sermonis to have a good beginningand a good ending; and to

have the two as closetogether as possible

- George Burns

This isn’t one of my dogs, although this lovely Cavalier looks very much like them! JennyMany thanks to Dr John Greenwood & the MEA photobook for this photo.

15

Research news... research news...

EEG Data DistinguishesCFS Patients from Healthyand the Depressed.EEG spectral coherence datadistinguish chronic fatigue syn-drome patients from healthy con-trols and depressed patients. Acase control study.Duffy FH, McAnulty GB, McCrearyMC, Cuchural GJ, Komaroff AL.Methods: This is a study, con-ducted in an academic medical

centre electroencephalographylaboratory, of 632 subjects: 390healthy normal controls, 70 pa-tients with carefully defined CFS,24 with major depression,and 148 with general fatigue.Aside from fatigue, all patientswere medically healthy by histo-ry and 29 examination.EEGswere obtained and spectral co-herences calculated after exten-sive artefact removal.Principal Components Analysisidentified coherence factors andcorresponding factor loadingpatterns. Discriminant analysisdetermined whether spectralcoherence factors could reliablydiscriminate CFS patients fromhealthy control subjects withoutmisclassifying depression asCFS.

Conclusions: EEG spectral co-herence analysis identified un-medicated patients with CFSand healthy control subjectswithout misclassifying de-pressed patients as CFS, provid-ing evidence that CFS patientsdemonstrate brainphysiology that is not observedin healthy normals or patientswith major depression.Studies of new CFS patientsand comparison groups are re-quired to determine the possibleclinical utility of this test.The results concur with otherstudies finding neurological ab-normalities in CFS, and impli-cate temporal lobe involvementin CFS pathophysiology.http://www.ncbi.nlm.nih.gov/pubmed/21722376

‘New hope for ME/CFSresearch in the UK’ – joint

charities’ BIOBANK statementThree charities – Action for M.E., the ME As-sociation and ME Research UK – and a pri-vate donor have joined forces to fund theUK’s first biobank of human blood samplesfor research into the causes of Myalgic En-cephalomyelitis /Chronic Fatigue Syndrome(M.E/CFS). The biobank will be situated atLondon’s Royal Free Hospital where it willbe able to link in with the extensive researchfacilities at University College London. FromMonday 8 August, having completed theirfeasibility studies, principal researchers DrEliana Lacerda and Dr Luis Nacul, LondonSchool of Hygiene and Tropical Medicine,will be inviting patients from a dedicated dis-ease register to submit blood specimens. Theblood will then be specially prepared andstored for use in future biomedical studies.Initially, blood samples will be collected froma group of patients currently enrolled in theM.E/CFS Disease Register, and from healthycontrols. This patient group will include peo-ple who are severely affected and bedbound.In the longer term other people who havebeen diagnosed with M.E. will be able to do-nate blood samples too.See:http://www.meassociation.org.uk/?p=7540

Downloadable report on the NIH Stateof the Knowledge Workshop on ME/CFS,

held in Bethesda USA in Apr 2011is now available here:

http://www.meassociation.org.uk/?p=7647

Extract from the concluding paragraph - Moving Forward“Throughout the Workshop, participants discussedopportunities for improvements in the current re-search paradigm for ME/CFS, beginning with a needto define and standardize the terminology and casedefinitions. This applies to simple definitions of

"fatigue," as well as how to use the words"diagnostic" and "screening tests.” They also sug-gested more interdisciplinary research, as seen in asystems biology approach. Creating coordinatedand collaborative systems for sharing research wasan important topic that included creating standardoperating procedures for the field, within andacross labs, as well as common data elements. TheWorkshop pointed to gaps in the ME/CFS field, in-cluding in study design, and types of studies. Thereis a lack of longitudinal, natural history, early detec-tion, pediatric-versus-adult-onset, and animal mod-el studies. In addition, there are limited studieslooking at co-morbid conditions, biomarkers, orgenetic studies. Moreover, study designs needed forclinical trials require further refinement. Improvedand more extensive data from patient-derived andreported outcomes will better define the successesor failures of treatment interventions. To capturethe extensive information from such studies, a cen-tralized interactive database, using common dataelements and accessible to everyone, is sorely need-ed to collect, aggregate, store, and analyze results.”

17

Exercise -Loss of Capacity to Recover fromacidosis on repeat exercise in chronic fa-tigue syndrome: a case-control studyJones DE, Hollingsworth KG, Jakovljevic DG, FattakhovaG, Pairman J., Blamire AM, Trenell MI, Newton JL.Background Chronic fatigue syndrome (CFS)patients frequently describe difficulties with re-peat exercise. Here we explore muscle bioenerget-ic function in response to three bouts of exercise.Methods A total of 18 CFS (CDC 1994) patientsand 12 sedentary controls underwent assessmentof maximal voluntary contraction (MVC), repeatexercise with magnetic resonance spectroscopyand cardio-respiratory fitness test to determineanaerobic threshold.Results Chronic fatigue syndrome patients under-taking MVC fell into two distinct groups:8 (45%) showed normal PCr depletion in re-sponse to exercise at 35% of MVC (PCrdepletion>33%; lower 95% CI for controls); 10 CFS pa-tients had low PCr depletion (generating abnor-mally low MVC values).The CFS whole groupexhibited significantly reduced anaerobic thresh-

old, heart rate, VO(2) , VO(2) peak and peakwork compared to controls. Resting muscle pHwas similar incontrols and both CFS patient groups. However,the CFS group achieving normal PCr depletionvalues showed increased intramuscular acidosiscompared to controls after similar work aftereach of the three exercise periods with no appar-ent reduction in acidosis with repeat exercise ofthe type reported in normal subjects.This CFSgroup also exhibited significant prolongation(almost 4-fold) of the timetaken for pH to recoverto baseline.ConclusionWhen exercising to comparable levels to normalcontrols, CFS patients exhibit profound abnormal-ity in bioenergetic function and response to it. Al-though exercise intervention is the logicaltreatment for patients showing acidosis, any trialmust exclude subjects who do not initiate exer-cise as they will not benefit.This potentially ex-plains previous mixed results in CFS exercisetrials.

Research news... research news...

Physiother Theory Pract. 2011 Jul;27(5):373-83. Epub 2010 Nov1.

The search for pain relief in people with chronicfatigue syndrome: A descriptive study.Marshall R, Paul L, Wood L.AbstractThe purpose of this study was to investigate theuse and perceived benefit of complimentary andalternative medicine (CAM) and physiotherapytreatments tried by people with chronic fatiguesyndrome (CFS) to ease painful symptoms.This study used a descriptive, cross-sectional de-sign. People with CFS who experienced painwere recruited to this study. Participants wereasked during a semistructured interview about thetreatments they had tried to relieve their pain.Each interview was conducted in the home of theparticipant. Fifty participants were recruited, ofwhich, 10 participants were severely disabled byCFS. Eighteen participants were trying differentforms of CAM treatment for pain relief at thetime of assessment. Three participants were cur-rently receiving physiotherapy.Throughout the duration of their illness 45 partici-pants reported trying 19 different CAM treat-ments in the search for pain relief.

Acupuncture was reported to provide the mostpain relief (n=16). Twenty-seven participants re-ported a total of 16 different interventions pre-scribed by their physiotherapist.The results of this study suggest some physiother-apy and CAM treatments may help people man-age painful CFS symptoms.Future research should be directed to evaluatingthe effectiveness of interventions such as acu-puncture or gentle soft tissue therapies to reducepain in people with CFS.PMID: 21039301 [PubMed - in process]

NB Quote from TK - LocalME 18th July: “Fromthe full text of this, I thought the following wasinteresting:"In total, 12 participants with CFS hadtried graded exercise therapy, although 11 partici-pants reported that they had stopped because ithad increased their pain."(This is a subset of theabove data)"Graded exercise was the interventionthat was most commonly prescribed by physio-therapists (n=6) and generally caused the mostpain." (5 out of 6 reported increased pain while 1out of 6 said it helped reduce pain)”

The search for pain relief in people with chronic fatigue syndrome

16

Group News... committee news

Committee Meeting - JulyThe committee met on July 8th. This time wehad to meet at Jenny & Alan’s house as Tarsamsent his apologies. Tarsam was not feeling sogood as he was exhausted having to fill in end-less forms re-applying for his DLA - I am surewe all understand how that feels...The Contact List working party decided the CLwould be reviewed in 2012 - so no changes informat etc until then. Jenny read out the group’smission statement - this can be seen on theHome page of our new website. Jenny &George reported back on progress with theSchools project, which was moving forward well.In Outreach we all discussed even better waysof communicating and making all members feelwelcome and part of the group. The committeeagreed that George had worked hard and madean excellent start with the U25 section, but itwas agreed to ask the U25s for suggestions onwhat they would find helpful in order to makesure that we were responding to all their needs.(see page 12)

We also discussed a couple of suggestions frommembers and our decisions have been communi-cated back to them.Jenny gave the newsletter report - in particularthe decision to launch the Feelings Book in theSept newsletter (see p 7) Jenny then gave theCoordinator and communications report. Alangave the Treasurer’s report - all was well withthe finances at present, but still a need to look tothe future.In any other business Jenny told the committeethat she felt that Ben was finding it hard to copewith the extra work entailed by running the SSBwebsite whilst having a young family to lookafter as well. The committtee expressed theirconcern that we should not place extra pressureon Ben at this time, and agreed to that it wastime that someone else took on this responsibili-ty. Jenny & George agreed to form a websiteworking party to look into setting up a new web-site for the group.The committee all thanked Ben for all his hardwork on our website over the last few years,

18

Tarsam Jo Jenny Alan George

Group News... committee newsNow for news on some of the many

initiatives we have undertaken this year.*

SSB publish their first bookletfor young people with ME.

In just under a year from the original idea byGeorge, the committee have finished thenew Group booklet for Young People withME. It is packed full of information andlinks aimed specifically at the secondaryschool age group, their families and teachingand support staff. We are grateful to thethree young people who wrote down theirown experiences of having ME at such ayoung age, which have made the booklet somuch more personal to young people . We are now in the process of sending thisbooklet by email to all the secondary schoolsin South Birmingham and Solihull, duringSeptember.We are all pretty pleased with this initiativewhich is our 2011 project for raising MEAwareness in schools.We thank The Masonic Lodge in Redditchand George’s Mum, Sally Beech, for theirgenerous donations which have helped tofund this project.

The booklet is available online on our newwebsite:http://ssb4mesupport.weebly.com/about-our-group.htmland as a paper copy (by request via the usualgroup contact)

SSB have a new website

Check out our new website - you will findall sorts on information on there!You can check our latest meetings dates onthe ’Meetings’ page. Catch up on all the lat-est ME & group news on our ‘News’ pageYou can read all about ME on the ‘AboutME’ page (which has lots of helpful websitelinks),and all about the NHS and localservices on the NHS informationsubpage. See all the local information linkson our ‘Contacts & Links’ page and thenational links to ME charities, ME Researchwebsites and links to other helpful websiteson our ‘National Links’ subpage. You caneven link to other ME groups on our ‘Otherlocal ME Groups subpage. You will alsofind a link to the West Midlands ME Groups(WMMEG) here as well.You will see that we have put in an ‘Aboutyou’ page and a page for the Under 25s.These are a work in progress and we hope tostart filling them soon with your new, viewsand photos and any news we want to sharewith you about the group.One day we are hoping to create secure blogsite on our website, where we can all chattogether, but we thought we would get thebasic website up and running first before weattempt anything more complex!

http://ssb4mesupport.weebly.com/index.html

SSB launch the group‘Feelings’Book.

See page 9!

19

A reproduction of the front page of the new booklet