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Volume 80 Winter 2013

Poetry and PublicityThis issue has a special focus on our wonderfulpoetry book, Poetry from the Bed. The launchof the book was a great success - see page 9for more details and photographs from theevent. We also managed to get some excellentpublicity in the media, which is summarised onpage 11. We have reproduced a particularlygood piece of publicity from the BBC website.Lots of hard work has gone into the poetrybook, so do please encourage your friends andfamily to buy it! It would also be useful ifpeople could review it on Amazon, becausethis helps us to promote the book and raiseawareness.

ME/CFS has been in the media a lot recently,and not just because of our book! This issuereproduces some of the recent media articles,as well as a transcript from the House of Lords(pages 6 and 7).

Remember that it will be the OMEGA AGM onSaturday 2nd March- see page 15 for moredetails. We hope to see you there.

Finally, look out for our member NormanBooth's latest research, detailed on page 3.

We hope you enjoy this issue. Happy reading!

OMEGA Membership Subscriptions

Yes it's that time of year again – are you ready topay your Omega Membership for 2013? If youreceive a form with this newsletter then yoursubscription is due (£10, or £5 unwaged). Pleasesend the completed form with your payment to:Helen Garfitt, 'Birsay', Latchford lane, GreaterHaseley, Oxfordshire, OX44 7LA. It REALLY helps ifyou pay on time - please do it before you forget.Our costs are always rising so if you'd also considera donation then we'd really appreciate it. Thankyou very much. Lesh

Contents

OMEGA Membership Subscriptions 1ME: bitterest row yet in a long saga 2Letter to the media 3Mitochondrial Treatment for ME - a briefsummary 3The Countess of Mar speaks up for peoplewith ME 5‘ME isn’t “all in the mind”, but it’s still amystery’ 6OMEGA Christmas Lunch 8Congratulations 8Invest in ME Conference 8Poetry Corner 9Poetry Book News 9Apologies 9Read all about it 11OMEGA and Young People with ME 12Leaflets 12OMEGA CommitteePlus Meeting 12The OMEGA/LINk GP Survey 13OMEGA AGM Saturday 2 March 2-4pm 14Diary Dates 15

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ME: bitterest row yet in a long saga

The Independent on Sunday 25th November2012

http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

A British psychiatrist should be stripped of anaward, fellow scientists said last night, as oneof the most heated debates in medical sciencecontinued.

Professor Simon Wessely, one of Britain'sforemost experts on ME, won the ‘JohnMaddox Standing up for Science’ honourearlier this month. The prize was created bythe journal Nature and the charitable trustSense about Science. It was given to ProfessorWessely for ‘courage’ in speaking out abouthis studies into ME in the face a prolongedhate campaign and death threats. The Chinesescience writer Fang Shi-min shared the award.

But critics protested against the decision lastnight. They said the professor's workperpetuates the idea that myalgicencephalomyelitis, also known as chronicfatigue syndrome (CFS), is a mental healthproblem, trivialising what they claim is alargely physical illness. Malcolm Hooper,emeritus professor of medicinalchemistry at SunderlandUniversity, said: ‘He's responsiblefor trying to make ME into apsychiatric condition when it's not.He has done very poor science.’

Another opponent, the Countessof Mar, said: ‘I was absolutelyhorrified when I read he'd won theaward and I would like to see itretracted.’

Dr William Weir, a retiredconsultant physician who says MEis caused by a chronic viralinfection, called the decision‘’almost satirical”. He said ‘If thescientific data is properlyexamined it will be seen thatProfessor Wessely's doctrine is

wrong and it will be proved to be wrong inabout five years' time’.

But Professor Wessely, head of psychologicalmedicine at King's College London's Instituteof Psychiatry, said: ‘I have published severalhundred papers on this over the last 20 years.These have been published in world-classjournals such as the BMJ and The Lancet,subject to rigorous peer review. I have neversaid that CFS is all in the mind. I do not believethat, and have never written that. I have saidrepeatedly the exact opposite. I havepublished many papers on possible infectioustriggers to the illness.’

Sir Ralph Kohn FRS of the Kohn Foundation,which contributed to the prize said: ‘This issuch a well-deserved recognition of John'soutstanding scientific work for many years andwe are privileged to be associated with thisinitiative.’

Professor Wessely has previously come underfire for research he jointly conducted whichconcluded that cognitive behavioural therapycould be beneficial in treating ME In Augustlast year he told how he had been harassed,stalked and intimidated by fanatical lobbygroups that disputed his findings.

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Letter to the media

This letter by Tony Williams, OMEGA member, has been published in the Times and the Guardian. If you feelstrongly about this issue, you could write to your MP.

Anthony Williams48 Magdalen RoadOxfordOX4 1RB01865 724258

tw.williams07@talktalk.net

The Editor,The Guardian 6 December 2012

Dear Sir,

In his Autumn Statement the Chancellor claimed that ‘we are all in it together’, yet his announcement thatworking age benefits will only rise by only 1% for the next three years means people like me are unfairlypenalised.

I have been unable to work for 16 years due a chronic illness (ME). I hate not working and it has severelyaffected my sense of self esteem. I currently receive Employment Support Allowance (ESA) at £105 a weekwhich will increase by only 1% in the next 3 years. The latest 2012 CPI inflation rate is 2.7%, which over threeyears would become 8-9%, ie this decision would cause me a loss of 6% in real terms. The only income I havecomes from ESA and Disability Living Allowance.

The Chancellor has ‘balanced’ this cut for people on benefits by reducing tax free pension contributions to£50,000 a year for the richest 2% of people. This is put forward by Mr Osborne as evidence he has ensuredthat ‘everyone pays their fair share’. Really?

Yours sincerely,

Tony WilliamsOxford

Mitochondrial Treatment for ME - abrief summary

Norman Booth (OMEGA member) has beenworking with Sarah Myhill and John McLaren-Howard on the role of mitochondrialdysfunction - previously reported in theOMEGA newsletter. Below is a summary of themost recent paper, which looks at how totreat the dysfunction.

Their first two papers established thatmitochondrial dysfunction is central inME/CFS. Those papers demonstrated that the

patients with the worst levels of fatigue hadthe worst levels of mitochondrial (energy)function and vice versa. These studies clearlyplace ME/CFS as a physical disorder.

The aim of this third study was to see howwell patients respond to a tailored package oftreatments and what impact, if any, did thosetreatment packages have on both the ATPprofile (energy function) test results and alsoon the patient fatigue scores.

This was an audit, ie not a randomisedcontrolled trial, looking at the results from 138ME/CFS patients getting treatment at a private

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clinic. The treatment consisted of 1) stone-agediet 2) good quality sleep 3) nutritionalsupplements 4) balancing activity and rest.Additional treatments were based on auxiliarytests as well as the ATP scores. Resultsreported are 9 case summaries, comparison of34 people before and after treatment; andcomparison of 30 people who followed allaspects of the regime, with four who didn't.The book detailing the treatment regimes canbe downloaded free of charge athttp://www.drmyhill.co.uk/drmyhill/images/7/76/Cfs_book_27.pdf

Results showed that ATP profile test resultsimproved consequentially with patients'treatment package compliance.Moreover, most of these biochemicalimprovements were accompanied byclinical improvements, as measured bypatient fatigue scores. It was alsonotable that four patients who did notadhere to the treatment packageseither saw no improvement or indeedworsened. In a clinical setting, Dr.Myhill says, therefore, it is incumbentupon the physician both to understandthe difficulties that patients face withsuch a wide ranging treatmentpackage and also to support fully thepatient with the challenges they face.

The paper says it is clear from thesestudies that mitochondrial function isnot the only factor in ME/CFS, but it isan important one: correctingmitochondrial function is an essentialpart of improving functionality andtherefore of recovery.

Conversely if the improvement inmitochondrial function (consequentupon compliance with the treatmentpackage) is not paralleled by clinicalimprovement then there must be afurther reason for fatigue. Reasons why thismight happen, and treatment options in thiscase, are also discussed in the paper.

Targeting mitochondrial dysfunctionin the treatment of Myalgic

Encephalomyelitis/Chronic Fatigue Syndrome(ME/CFS) – a clinical audit.

Int J Clin Exp Med 2013;6 (1):1-15, SarahMyhill, Norman E Booth, John McLaren-Howard.http://www.ijcem.com/files/IJCEM1207003.pdfPrevious papers available atwww.ijcem.com/files/IJCEM812001.pdf andwww.ijcem.com/files/IJCEM1204005.pdf

Histograms of Mitochondrial Energy Score,MESinh. From the top: control group, all 138patients at initial test, initial test of the 34patients who had a repeat test, final test ofthese 34 patients.

OMEGA cannot recommend any particulartreatment. We suggest you do your own researchinto what any treatment costs, what it involves,the likely outcomes and the length of treatmentbefore making a decision about what is right foryou.

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The Countess of Mar speaks up forpeople with ME

'... epilepsy is far from being the onlyneurological service that has inadequacies. Formany years, I have worked with people withME, also known as CFS/ME. I amchairman of Forward-ME, vice-chair of the All-PartyParliamentary Group on ME andpatron of a number of MEcharities. Forward-ME is amember of the NeurologicalAlliance.

I have been assured that HerMajesty's Government accept theWHO's categorisation of ME as aneurological condition. The CMOreport of 2002 described it as a‘genuine illness’ which, ‘imposesa substantial burden on the health of the UKpopulation’.

The NICE guideline of 2007 stated that:‘The physical symptoms can be as disabling asmultiple sclerosis, systemic lupuserythematosus, rheumatoid arthritis,congestive heart failure and other chronicconditions’.

Yet there is no provision to examine theneurological aspects of this illness. Patientsare simply allocated to either the CFS/MEgroup, where they are offered psychologicaltherapies, or to various ad hoc diagnosticcategories containing patients withneurological symptoms of unknown aetiology.In practice, these can be considered dustbins

where no further investigations areconsidered necessary.

After the Chief Medical Officer's report onCFS/ME in 2002, £8.5 million was allocated tosetting up specialist ME centres. Some of thecentres have closed because of a lack offunding. Others continue to operate but aresomewhat constricted by the view that theonly scientifically validated treatment for thecondition is a combination of cognitivebehaviour therapy and guided exercisetraining-CBT and GET. In fact, the muchtrumpeted PACE trials, which cost thetaxpayer some £5 million and were intendedto demonstrate the effectiveness of these so-called treatments, did no such thing. There isno indication in the trial results that one singleperson fully recovered after a year of CBT andGET. There is no indication that any who were

not working went back to work or,in fact, that there was more than avery modest improvement in thosewhose health was deemed to haveimproved.

I would like to be able to go into thefacts behind this research in moredetail, but this is not the occasion.However, I must say that the spinon the results has had a verydeleterious effect on the publicperception of the illness and on theprovision of health and social care

for people with ME.

What is happening to these frequently verysick individuals? There is still a great deal ofscepticism surrounding the reality of thisillness, despite pronouncements fromgovernment, the CMO and NICE.'

House of Lords, 20 Nov 2012

Subscriptions: Please send us your form!

There is noindication in thetrial results that

one singleperson fullyrecovered

after a year ofCBT and GET.

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‘ME isn’t ‘all in the mind’, but it’s stilla mystery’

(From The Daily Telegraph 26 November 2012)

It was in the late Seventies that Charles Shepherdbecame ill with myalgic encephalomyelitis, or MEas it is better known. It was an era, he recalls,when the condition was still dismissed as‘hysterical nonsense’ by most clinicians. Workingas a young doctor at Cirencester Hospital, he hadcontracted a severe case of chickenpox from apatient with shingles. ‘I’d been perfectly fit andhealthy. The infection had resolved but I feltmentally and physically knackered and kept havingto take more and more time off,’ he recalls.

Shepherd says he has never been truly wellsince. He ‘plods along’, though managing toenjoy life: he regularly walks Polar, his snow-white labrador, near the Cotswolds home heshares with his wife Pam, a nurse. On the daywe meet, he is helping his daughter Suzie, astudent in London, plan her 20th birthday (healso has two sons,Patrick, 28, andAlisdair, 31).

As medical adviser tothe ME Association,Shepherd has spentthe past two decadesvigorously fighting the“all in the mind”attitude which, hesays, is still commonamong the medicalprofession. He isconvinced that thiscomplex disorder,which has puzzledscientists for decades, has biological ratherthan psychological origins – although unlikesome on the militant fringes of the MEcommunity, he prefers to use reasonedpersuasion rather than threats whendiscussing the cause.

‘I unequivocally condemn people who sendabusive emails,’ he says, referring to theharassment of researchers, doctors andjournalists – including the Telegraph columnistDr Max Pemberton – who have speculated on

the ‘psychological’ explanation. ‘But I alsounderstand why people feel so angry. Asignificant minority of doctors still don’tbelieve in the existence of ME. They refuse todiagnose or manage it – that is totallyunacceptable.’

Now more commonly known as chronicfatigue syndrome (CFS), ME has come a longway since it was derided back in the Eightiesas “yuppie flu” (its typical victim supposedlybeing a high-flying young professional). Today,it is recognised by the World HealthOrganisation, the National Institute for Healthand Clinical Excellence (Nice) and much of themedical establishment as an often severelydisabling disease, characterised by abewilderingly wide set of symptoms, the chiefones being profound fatigue and widespreadmuscle pain. Difficulties with concentrationand memory are also common.

Yet the debate over the cause of ME

continues. Is it biological, psychological or acombination of both? The controversy flaredup again in September, with the publication offindings finally disproving the theory that MEis linked to XMRV and mMVL, viruses that hadpreviously been isolated in tissue samplestaken from ME patients. Scientists at ColumbiaUniversity, New York, found compellingevidence that detection of the viruses was aresult of contamination, corroborating twoprevious studies’ findings.

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The collapse of this theory, greeted withdismay by some ME patients, came as nosurprise to Shepherd, who says he was alwayssceptical of the “hype” surrounding it. ‘In theUS people spent a lot of money getting tested[for XMRV] and getting anti-retroviraldrugs, but we have always advisedagainst this because the research[from the University of Nevada,published in 2009, that implicated thevirus] hadn’t been properly evaluatedor replicated.’

By taking this stance, Shepherdhimself became the target of hatemail. ‘People get so desperate and putsuch faith in findings, they find it hardto have them criticised.’

ME researchers now view the illnessas having three separate components:first, a (probable) genetic predisposition;second, a precipitating factor – which for 75per cent of patients is an infection, usuallyviral, although occasionally other immunestressors such as immunisation may be atrigger; and finally the development of thecondition itself. Other signs include fainting,low blood pressure, and irritable bowelsyndrome.

The origin of such symptoms remains amystery. One theory gaining favour is that MEpatients have an aberrant immune responsewhich fails to “switch off” after the originalinfection has resolved itself. In particular, it ispossible that some ME patients have a surfeitof cytokines – chemicals produced by theimmune system.

Another theory is that an auto-immuneresponse (in which the immune systemproduces antibodies that attack the body’sown cells) may be involved. Other research islooking at potential abnormalities in themuscles of ME patients, with evidence thatsome sufferers produce excess acid when theyexercise (Shepherd himself took part inresearch on muscle tissue – and still has a scaron his leg to prove it.)

One study at Liverpool University is examiningpotential structural abnormalities in the

mitochondria – cell components whichproduce energy in a usable form – in skeletalmuscle.

A further focus of research are abnormalitiesin the hypothalamus. This tiny pea-shaped

gland in the brain regulates a numberof functions including hormonesecretion (via the pituitary andadrenal glands). Problems here couldhelp explain symptoms as diverse assleep disorder, low blood pressure,temperature disturbance and heart,bowel and bladder problems. ‘A largenumber of papers demonstrate thatME patients have abnormalities inthe hypothalamic-pituitary-adrenalaxis’, says Shepherd.

In particular, he says, ME patientshave been found to have lower levels

of cortisol, a hormone secreted by the adrenalglands. He concedes that ME researchers arestill “fitting together the jigsaw puzzle”, withsome way to go before treatments aredeveloped. ‘We have reached a point wherethere are drugs that would be worth trialling,’he says. But clinical trials are expensive to runand the pharmaceutical industry, the onlyrealistic source of such funding, has shownlittle interest.

In the meantime, can graded exercise (aprogramme aimed at building up activitylevels) and cognitive behavioural therapy,advocated by Nice, help with the symptoms?‘The Nice guidelines on ME are not fit forpurpose,’ Shepherd argues. ‘They reflect thebelief that this is a psycho-social illness.’ Hehimself is a fan of pacing – a technique whichinvolves listening to your body to find the rightbalance between rest and activity. ‘I goswimming and walking, but within the limits ofwhat I can do.’

He also feels progress has been stymied byrebranding ME as chronic fatigue syndrome.‘Doctors never liked the term ME because itrefers to inflammation of the brain and spinalcord, which has never been found,’ he says.‘But calling it CFS has made research trickierbecause CFS is an umbrella term for different

“The Niceguidelines on

ME are not fitfor purpose,”

Shepherdargues. “They

reflect thebelief that

this is apsycho-social

illness.”

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pathologies – it’s a bit like grouping togetherall the different kinds of arthritis and sayingthey have the same cause.’ He prefers theterm myalgic encephalopathy, which reflects asignificant neural abnormality in the brain.

He is encouraged, though, by progress at theMedical Research Council, where an expertgroup to encourage high-quality research intoME was set up in 2008, and where, last year,£1.5 million was ring-fenced for this purpose.So far funding has been approved for fivestudies – among them mitochondrial functionand cytokine production in muscle tissue,immune system involvement and autonomicdysfunction.

So is Shepherd discounting entirely anypsychological component in ME? ‘I have noproblem,’ he replies, ‘with the idea that themind affects the body and the body affects themind. Of course, people who are chronically illget depressed and have psycho-social stress.But the point is that too much energy andmoney has gone into research based on thebelief that ME is psycho-social – when theright route is biomedical.’

OMEGA Christmas Lunch

A good time was had by all, with great foodand a festive atmosphere

Congratulations

To Matt T. on becoming a grandfather. Mattis our brilliant volunteer who is valiantlybraving all weathers to get our leaflet aroundthe county. His grand-daughter was born inOctober, and we know she will bring himmuch joy.

Invest in ME Conference

A DVD of this conference is now available, whichincludes lots of information on biomedicalresearch. Please see the website:http://www.investinme.org/IiME%20Conference%202012/IIMEC7%20Home.htm

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Poetry Corner

Windows

Windows into other worldsOpen up unexpectedCatch us unawares,Catapult us throughInto worlds we neverDreamed existed

Change comes unwelcomePlunging us headlongInto Bereavement WorldOr the Land of Illness.All that’s familiar disappears,Landmarks are lost,Old comforts, for now, don’t help.

Even welcome windfallsMight also fray theVery thread of lives.

Suddenly all is differentWe are taken apartWhether we like it or not.New dimensions appearOften unwantedBut here we are, here,It’s happened andWithout maps, compass,Or stars for guidanceWe must navigate the New.

SHUTTERED (Living with ME)

Shut inShut upShut offShut outShut down.

Both poems by Lynda Holland

Poetry Book News

By now, you will have received your copy of thepoetry book (pictured in column 2), sent to youby our publishing volunteer, Sarah MacBean.Due to the generosity of the Co-op CommunityFund we are able to give it to you free of charge,but a number of people have told us they wantto give something back to OMEGA. If so, pleaseadd a donation to your subscription.

Thank you so much for your kind comments –keep them coming in! We hope you enjoy thebook. If you do, please go onto Amazon websiteand leave a review. Please also tell your friendsand relatives about it. It is available from allbookshops and online – all around the world.

Special thanks to everyone who contributed apoem and/or helped with the production of thebook. Without you, none of this would havebeen possible.

Apologies

However, we are very sorry to report that onemistake did occur. The poem on page 6 of thebook should have been entitled : 'ME/CFS Blues'by Anon. Daphne Oxley's poem was notincluded, but is included below. Apologies toDaphne and to Anon.

It's M.E. but it’s not ME

The well part of herWants to be sociableThe ill part can'tThe well part wants coffee morningsAnd friends galoreBut the ill part can't

The well part wants a vibrant lifeThe life she had beforeBut it’s not like that - anymoreThe well part looks at the friends she hasAnd marvels at their loyaltyShe aches to be as them, once moreAnd flinches at the reality of their severed lives

Inside of me I am that person stillDon't look at the M.E. but look at me.

Daphne Oxley

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The Poetry Book Launch (pictures showthe main people involved in producing thebook).

More pictures on Facebook - search forOxfordshire ME Group for Action

Jill Woodward (cartoonist)

Buying the bookLord Mayor of Oxfordlaunches the book

John shows off thebookmarks

Jo, Jan and Sarah

Susie, Sarah & Jo P

The book is launched

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Read all about it

OMEGA has had some fantastic coverage inthe media. Jan and Jayne did a brilliantinterview on BBC Radio Oxford with MalcolmBoyden. There was a good article on the BBCwebsite (reproduced below*) and also on theBBC TV Red button. There was a great articlein the Bicester Advertiser and a small piece inthe Witney Gazette.

The book launch was widely advertised in TheOxford Times, The Oxford Mail, and sisterpublications throughout Oxfordshire, (seepage 10 for pics of book launch). The book hasbeen reviewed in The Oxford Times and sisterpapers; and online at www.therapy-directory.org.uk/blog/, The Reading Chronicleand on Amazon. Sarah is sending out morecopies for review to the local, national and MEpress - so keep your eyes peeled.

We have had great online publicity too - fromPeeblesshire to Australia, and on variousFacebook pages including some ME/CFS andFibromyalgia pages, Brookes University andvarious poetry and creative writing sites. It hasbeen re-tweeted on Twitter. If you are onFacebook or Twitter, please spread the word.Well done to Jo, Sarah, Pat, Catherine and Janfor all their hard work on publicity, and to allthe poetry book group and so many people inOMEGA for making this such a success.

*This is the BBC website article:(http://www.bbc.co.uk/news/uk-england-oxfordshire-20185934)

Book of poems written by ME poetsAbout 2,500 people have ME in Oxfordshire

A group of people with chronic fatiguesyndrome, or ME, are releasing a book ofpoems to explain what living with the illness islike.

Poetry From the Bed came about following apoetry competition organised by theOxfordshire ME Group for Action (Omega).

But the charity was so impressed with theresults that it decided to publish a volume ofthe works.

Freya Morris, from Thame, said it was a greatway to share experiences.

She added: ‘Retaining the capacity to read wasan absolute lifesaver for me during themonths I spent in bed with ME.’

Another poet, Linda Angeletta from Bicester,said: ‘I struggle to do the housework and thatgets me down. I struggle to cook meals for myfamily.

‘Poetry helps me to explain my world ofchronic fatigue, chronic pain and other healthproblems.’

'Sheer bravery'

The book is being launched at the Old FireStation in Oxford on Sunday.

One poet, aged seven, writes: ‘Bed, tired,asleep, wake up, tired again.’

Novelist Clare Francis, president of Action forME, who also has the illness, called the book‘inspirational’.

She said: ‘These poems movingly demonstratethe sheer bravery and resilience of the humanspirit.’

All the proceeds of the book will go to Omega,which was given a grant from the Co-opMembership Community Fund.

Omega estimates that 2,500 people have MEin Oxfordshire, and 250,000 in Great Britain.

It is characterised by prolonged fatigueassociated with symptoms including muscleand multi-joint pain.

‘Test results indicate that you broke your NewYear’s resolution’

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OMEGA and Young People with ME

We are glad to announce that Priscilla Kew hasagreed to be our contact person for parents ofchildren with ME (see back page for moredetails). Also that OMEGA is now a TYMESTrust Partner Group. (TYMES Trust is TheYoung ME Sufferers Trust and is the majornational advocacy and campaigningorganisation for children with MEwww.tymestrust.org ).

This means we will have priority advice andinformation about our campaigning withchildren and young people, have anyquestions answered by the Trust’sprofessional advisers and get to hear aboutrelevant developments from the Trust. We inturn have agreed to share information fromthe Trust through this Newsletter and includeinformation about the Trust in our ownpublicity.

This is very good news for OMEGA and meanswe will be able to build on our existingcontacts with education and medical services.

Leaflets

Have you got our leaflet in your surgery orcomplementary health clinic? If not, wouldyou be able to put some there? Matt T., one ofour volunteers, has been doing a great job,travelling round the county, distributing theleaflet. But he can't get everywhere! Couldyou put some out in your surgery or clinic oranywhere else near you? If so,please ring 01865 766310 or emailenquire.omega@gmail.com. To check wherethe leaflets already are, visit:http://www.venacava49.co.uk/pages/omega/lealet%20table%203.html

OMEGA CommitteePlus Meeting

Have your say!

OMEGACommitteePlus

MeetingThursday 7 Feb, 11am- 1pm, OCVA, Oxford

All OMEGA members are invited to take partin determining how OMEGA is run, and whatwe do. Come along to the CommitteePlusmeeting to have your say, get informed,become more involved, meet people and havetea, biscuits and chat. If you areinterested in coming, please emailvolunteers.omega@gmail.com or ring 01865-718274.

Oxfordshire Community and Voluntary Action,The Old Court House, Floyds Row, St Aldates,Oxford, OX1 1SS

Floyds Row is off St. Aldates , oppositeSpeedwell St., near the police station. It isnear many bus stops, including direct from thestation. There is one disabled parking spaceright outside - please ring them to book it(01865 - 251946). Other disabled parkingnearby (yellow lines or Westgate Centre carpark). http://www.oxnet.org.uk/find-us

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The OMEGA/LINk GP Survey

The survey of Oxfordshire GPs has now been published and is available on the LINk websitewww.oxfordshirelink.org.uk and there is a link to it on ours www.oxnet.org.uk/omega. If you wouldlike a printed copy of the summary or of the full report please ring LINk on 01865 883488 or emailthem at link@oxonrcc.org.ukIn the box below are the main recommendations taken directly from the report itself: these havebeen presented to the relevant sub-committee of the County Council1, who can require the PrimaryCare Trust (now Oxfordshire Health) to respond to it at their next meeting in the New Year. Belowthis is how we think the recommendations can be met.

Recommendations1: Review and improve guidance to GPsSpecific issues highlighted by GP respondents in this research were: A need for more information on CFS/ME. A need to clarify and improve the guidance to GPs (Patient Pathwayand the referral criteria) and to improve awareness of CFS/MEservices especially in the north of the county.

Recommendation 2: Set up a single (Primary Care) point of access for servicesThere is strong support for a single primary care (community based) point of access to services forCFS/ME in Oxfordshire (89% of GP respondents). More work is needed to understand why GPs referoutside Oxfordshire.

Recommendation 3: Set up a service for children with CFS/METhere would be support for a multidisciplinary team for children with CFS/ME (68% of GPrespondents).

Recommendation 4: Review and improve support provided to research into theviews of GPs in the futureWe encountered significant challenges in conducting this research and needed much more time thanoriginally planned. The response rate was much lower than the previous survey and is likely to havebeen affected by our inability to pay GPs to participate in research. It is of wider relevance andconcern that this type of (non-commercially sponsored) research into health services in Oxfordshireis now much more difficult than 10 years ago.

OMEGA’s Response to these recommendationsHere is how we think the recommendations can be met.

1. We, and Jean Bailey (OCCMET’s GP) recommend that recent international guidelinespublished in May 2012 by the International Association for CFS/ME.http://www.iacfsme.org/Home/Primer/tabid/509/Default.aspx be made available to all GPs.We understand that the treatment ‘pathway’2 is under review by the new Clinical CommissioningGroup (CCG) and we will be continuing to make our needs known to them.

1 Health Oversight and Scrutiny Committee

2 We discovered when the survey was nearly finished that the PCT had, in fact, never put the‘Patient Pathway’ (which we agreed with the Advisory Group in 2010) on their intranet. This is one ofa number of difficulties we came across. Another is the low response rate of 12%.

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2. We are pressing for OCCMET as the Community Team to be the first point that GPs refer us to(their GP can then refer us for other treatment if we need it) and for the Team to be strengthened. (Theyhave already recently appointed another half-time therapist.)

We think, as we did in 2002, that money spent referring us to doctors outside the area would bebetter spent on providing better services locally. However, some of these referrals may be to privatedoctors (which of course we pay for ourselves), and some children may be referred to a clinic in Bristol.(This may involve exhausting travel for patients or expensive travel time for therapists. Either way, abetter service for children locally would be better.) We will follow this up.

Hence:3. OCCMET currently treats young people over the age of 14. We want them to treat youngerchildren. This would build on the excellent work they already do, and on their contacts withpaediatricians who know about the illness. We are reviewing the situation for children; schools and theeducation service have to be involved as well as other agencies. (We are very glad that Priscilla Kew hasagreed to be our parent link-person and to be our official link to TYMES Trust as a partner organisation.)

4. Our researcher Margaret Melling, had great difficulty in even finding basic information about GPs,the hard-pressed new Clinical Commissioners were not able to respond to her emails or phone calls, thenumbers of doctors filling in our questionnaire was disappointingly low. We are concerned at thepressures on our doctors and, on a wider level, that this means there is not enough reliable informationfor people making the decisions about services to make good ones.

Patricia Wells, December 2012.

OMEGA AGM Saturday 2 March 2-4pm

Exeter Hall, Oxford Road, Kidlington, OX51AB (small hall)

Guest speaker: Dr. Jean Bailey from OCCMET– ‘OCCMET – Present and Future’

(Oxfordshire Community CFS/ME Team)

OCCMET provide a service for people withCFS/ME, their families and their carers, basedin the community. OMEGA was instrumentalin getting OCCMET set up, and continues toliaise with them. This is the chance formembers to hear at first hand what OCCMETdoes, how it can help and its plans for thefuture. Her talk will be followed by a teabreak, and then a Question and Answersession.

AGM business : Election of new TREASURERand CHAIR

Might YOU be interested? Full support andtraining given.

We also need a bit of extra help withorganising the AGM, and help withrefreshments on the day, and with a few othertasks in OMEGA.

To find out more, or if you could help in anyway - no matter how small, please emailvolunteers.omega@gmail.com or ring 01865718274. Thank you. It is all really appreciated.

The AGM business will start at 2pm, and bedealt with as quickly as possible so as to allowus to have as much time as possible with Dr.Bailey.

Exeter Hall, Kidlington (see map above) is onthe no 2A and no 7 bus routes from Oxford,and there is ample parking outside. (NB NOTExeter Hall, Cowley, Oxford, which is a pub!)

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Diary Dates

OMEGA AGMSaturday 2nd March 2-4pmExeter Hall, Oxford Road, Kidlington, OX5 1AB (small hall)Guest speaker: Dr Jean Bailey from OCCMET – ‘OCCMET – Present and Future’OCCMET is the Oxfordshire Community CFS/ME Team. This is the chance formembers to hear at first hand what OCCMET does, how it can help and itsplans for the future. The talk will be followed by a tea break, and then aQuestion and Answer session.

OMEGA MEDITATIONMonthly, on Fridays, 11am-1pm:25th January and 22nd FebFriendly and relaxing. All welcome.Please email omega.meditation@phonecoop.coop or ring 01865 718274 forfurther details.

Committee Plus MeetingThurs 7th February 2013 at OCVA, Floyds Row, Oxford, 11 am to 1 pm. Ifanyone is interested in being involved with what OMEGA does, please do cometo this meeting. For more details, and to express interest, please emailenquire.OMEGA@gmail.com or ring 01865 766310

OMEGA Oxford Area Social gatheringOMEGA Oxford Area Social gathering takes place on the first Monday of everymonth from 1.15 onwards at the Four Pillars Hotel, Henley Road, Sandford-on-Thames, Oxford, OX4 4GX. An opportunity for OMEGA members and carers tosocialise with other ME sufferers. For more details, phone Jo and John on01993 866610 or Lesh Lender on 01865 766310

Wantage and Grove ME/CFS Support GroupTuesday 15th January 1-3pm, Cornerstones Cafe, GroveWednesday 6th February 10.30-12pm, Cornerstones Cafe, GroveFriday 1st March 1-3pm, Cornerstones Cafe, GroveWednesday 27th March 12noon onwards, lunch meeting at The Lord NelsonThursday 25th April 1-3pm, Cornerstones Cafe, Grove

Cornerstone Coffee Shop, 10 Savile Way, Grove, Wantage, OX12 0PTFor further info phone Annie Kingsbury on 01235 763813 or emailannie.kingsbury@talktalk.net

South Oxfordshire ME/CFS Support GroupMonday 14th JanuaryMonday 11th FebruaryMonday 11th MarchThursday 11th April (note change of day)Thursday 16th MayThe same time each day: 12midday–2pm

Shillingford Bridge Hotel, Oxfordshire, OX10 8LZFor further information, email tessamary_keys@yahoo.co.uk or phone on01491 838727For further details, please see: www.oxnet.org.uk/omega

OMEGA Contact Information, and Roles and Contacts

Oxfordshire ME Group for Action (OMEGA). General Enquiries to OMEGA, 4Bursill Close, Oxford OX3 8EW, Tel. 01865 766310, Email: ltrl3@tiscali.co.uk

OMEGA Website: www.oxnet.org.uk/omega

OMEGA Facebook page: www.facebook.com - search ‘Oxfordshire ME Groupfor Action’.

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Acting Chair Jan volunteers.omega@gmail.com or01865 718274

Membership Lesh 01865 766310Money HelenVolunteers (Organiser) Jan 01865 718274Clinic Group(research/campaigning/NHS liaison)

Norman 01235 833486

Acting Minutes Secretary Norman 01235 833486South Oxon Social Tessa 01491 838727Bicester Social Nicky 07813 942474Banbury Social Tricia or Jill 01295 278810 or 01295 271366Special interest groups:Book Group Nicky 07813 942474Meditation Jan 01865 718274Parent Support Group Priscilla 01844 213772

OCCMET (Oxfordshire Community CFS/ME Team)01295 819191occmet.administrator@oxfordshirepct.nhs.uk

ME Association Support and Information Line0844 576 5326Every day: 10.00am – 12.00pm, 2.00pm – 4.00pm and 7.00pm – 9.00pm

Action for ME (Support line)0845 123 2314Monday – Friday 11.00am – 3.00pmsupport@actionforme.org.uk

Welfarerights helpline (AfME Membership only service):0845 122 8648

OMEGA Newsletter Production Team: Jan Seed, NathanSmith, Pat Williams, Cathy Brocklehurst, Mary Horan, JoannaBreheny, John Porter, Jo Porter, Diane Drayson, Jill East, LeshLender and Catherine Rye.With thanks to: Norman Booth, Jan Seed, Lynda Holland, PatWilliams, Tony Williams, Lesh Lender, Patricia Wells,Catherine Rye and Cathy Brocklehurst for contributions.Special thanks to those who contributed to the poetry book,whether it was by contributing a poem, helping withpublicity or the production of the book.

The next newsletter copy deadline is Friday 15th March 2013,so please send any info, news, jokes, poems etc. tonewsletter.OMEGA@gmail.com. To receive your newsletterby email, put ‘email newsletter request’ in the subject line.Send articles, jokes, cartoons or letters for publication with‘Editor’ in subject line.

Disclaimer – Please note that views expressed in thisnewsletter are not necessarily the views of OMEGA.

‘I tried cyber crime but I prefer people-to-people contact’