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Volume 76 Winter 2012

Eat, Drink, and be Merry!Welcome to the Winter edition of the OMEGAnewsletter. Everyone at the NewsletterProduction team hopes that you had a MerryChristmas and will have a Happy (and healthy!)New Year. The OMEGA Christmas lunch at OxfordBrookes was very successful and attended bymany. If you didn’t manage to make it this year,we hope to see you another time.

ContentsNew Items and Latest Research 2Corrections and Clarifications 3The Vikings are back! 4OMEGA Money 5"Poetry from the bed: Life withME/CFS" 5New OMEGA volunteers 6Volunteer News 7OMEGA AGM 7Accessible Britain 8Equality and Diversity Survey 8Mindfulness and Meditation 8Singing for Well-being 9Home Improvement 10Quiz Nights at The Rusty Bicycle 10Getting to Know You 10The History of OMEGA and OCCMET 11Diary Dates 12

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New Items and Latest ResearchBy Jan Seed

In trying to understand any research, includingabout ME/CFS, we need to disentangle theactual research from the way in which it isreported. Often the most ferocious argumentsare about people's opinions andinterpretations, rather than what the researchactually shows. Journalists may opt for a lazyand headline-grabbing interpretation, ratherthan reporting the research results accurately.Websites & blogs may reflect the person'sown slant. (See Ben Goldacre's "Bad Science"for a critique on how the media reportsscience).

We have already reported on the PACE trial(see Omega newsletter Spring 2011 Volume73). This continues to be controversial. Therewere misleading articles in the media talkingabout cure and recovery. There is a differenceof opinion about whether the authors everclaimed this. For more details, seehttps://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112a&L=co-cure&T=0&P=1152

In the walking test, even the best group, aftertreatment, was on average still not walking aswell as people in their eighties or with class 3heart failure - not a cure by any standards -see http://i42.tinypic.com/e67kv4.jpg

The recent Rituximab trail in Norway foundthat people with CFS initially showed noimprovement on the Chalder Fatigue Scale at3 months. By 12 months or more, however,nearly all patients and their doctors reportedimprovements in in their fatigue, see:http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358

While, very understandably, we desperatelylong for a cure, and may clutch at straws,

there are other things to consider. There wereonly 15 CFS patients (with 15 controls), CFSwas not defined in the paper and Rituximab isa treatment for cancer with very serious side-effects. As Christine reports in her article onpage 4, the results may point to CFS being anauto-immune disease. More and biggerstudies are needed, both to see if there is areal effect, and to see if it is large enough tocontradict the risk of adverse reactions to thedrug.

As we learned from the XMRV studies, earlyhope can lead to disappointment. Thereported link between ME/CFS and the XMRVvirus was not replicated in other studies, andnow most people seem to think that there wassome contamination.

Other recent research:

Grey and White Matter Changes in M.E. (Puriet al, 2011)http://www.actionforme.org.uk/get-informed/news/research-news/grey-and-white-matter-changes-in-meMRI Magnetic Resonance Imagery revealsinternal 3-D structures by sending outmagnetic pulses and looking at the magneticbehaviour of the water in the tissue. Thisstudy found "significant" reductions in thevolume of grey matter (nerve bodies) andwhite matter (nerve fibres, connectingdifferent areas of the brain) in people withME. Reduction in brain volume is often foundin elderly people with dementia, so somethingsimilar may be going on in people with ME -we do not know. Cell-mediated Immunity inME/CFS (Maes , 2011).http://www.actionforme.org.uk/get-informed/news/research-news/cell-mediated-immunity-in-me-cfs

The findings show that ME/CFS ischaracterized by low-grade inflammation andactivation of cell-mediated immunity (CMI).The results suggest that characteristicsymptoms of ME/CFS - such as fatigue,autonomic symptoms, flu-like malaise,concentration difficulties, failing memory anda subjective experience of infection - may becaused by inflammatory mediators, e.g. IL-1

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and TNFα. These symptoms all sound veryfamiliar, which helps to confirm that ME is adisease, not just a state of mind. The morethese chemical pathways get mapped out, thecloser we get to understanding what has gonewrong and what can be done about it.

Complementary and Alternative Medicine forPatients with Chronic Fatigue Syndrome: aSystematic Review

Authors: Alraek T, Lee MS, Choi TY, Cao H, Liu JPublication: BMC Complement Altern MedPublication date: 7 Oct 2011

BACKGROUND: Throughout the world,patients with chronic diseases/illnesses usecomplementary and alternative medicines(CAM). The use of CAM is also substantialamong patients with diseases/illnesses ofunknown aetiology. Chronic fatigue syndrome(CFS), also termed myalgic encephalomyelitis(ME), is no exception. Hence, a systematicreview of randomised controlled trials of CAMtreatments in patients with CFS/ME wasundertaken to summarise the existingevidence from randomised controlled trials(RCTs) of CAM treatments in this patientpopulation.

METHODS: Seventeen data sources weresearched up to 13th August 2011. Allrandomised controlled trials (RCTs) of any typeof CAM therapy used for treating CFS wereincluded, with the exception of acupunctureand complex herbal medicines; studies wereincluded regardless of blinding. Controlledclinical trials, uncontrolled observationalstudies, and case studies were excluded.

RESULTS: A total of 26 RCTs, which included3,273 participants, met our inclusion criteria.The CAM therapy from the RCTs included thefollowing: mind-body medicine, distanthealing, massage, tuina and tai chi,homeopathy, ginseng, and dietarysupplementation. Studies of qigong, massageand tuina were demonstrated to have positiveeffects, whereas distant healing failed to doso. Compared with placebo, homeopathy alsohad insufficient evidence of symptomimprovement in CFS. Seventeen studies testedsupplements for CFS. Most of the supplements

failed to show beneficial effects for CFS, withthe exception of NADH and magnesium.

CONCLUSIONS: The results of our reviewprovide limited evidence for the effectivenessof CAM therapy in relieving symptoms of CFS.However, we are not able to draw firmconclusions concerning CAM therapy for CFSdue to the limited number of RCTs for eachtherapy, the small sample size of each studyand the high risk of bias in these trials.Further rigorous RCTs that focus on promisingCAM therapies are warranted.

PMID: 21982120 [PubMed - as supplied bypublisher]

Some OMEGA members have expressed aninterest in complementary therapies, and wewill be hearing about some differentalternatives at the forthcoming AGM.

OMEGA does not recommend any particulartreatments/therapies. However, we suggestthat you look into any therapy before partingwith your money. Here are some points youmight want to raise with the therapist:

What are their qualifications/background?Do they belong to any professionalorganisation?How much is each treatment?How many treatments will be needed?How will the therapist define treatmentsuccess?

Corrections and Clarifications

In the article Media Storm over ‘threats toresearchers’ in our last Newsletter Volume 75,British Journal of Medicine should have beenBritish Medical Journal (BMJ). In the article wereviewed items from BMJ about research onCFS/ME.

OMEGA publicly dissociates itself from personalattacks on researchers and clinicians. Weacknowledge the strength of ‘anger andfrustration’ (as Dr. Charles Shepherd says) aboutthe psychological focus of much research, abouthow very ill people are, that this hasn’t beenacknowledged, and that there is so littleresearch which includes those who are severelyaffected.

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The Vikings are back!By Christine Standing

Three different issues have come out of Norway,a scientific paper, an award for services to theME community, and an ‘apology’. To begin withthe last one:

"I think that we have not cared for people withME to a great enough extent. I think it is correctto say that we have not established properhealth care services for these people, and Iregret that." Deputy Director General, BjørnGuldvog

This statement, widely reported among the MEcommunity as an apology, needs to be readcarefully. It has been inflated into a ‘globalstatement’ however, on closer inspection, thewords, “I think” and “I regret” do not equate to“I apologise”. What is interesting is that the MEcommunity have picked this up and ran with it.We would love an apology; instead, we have tosettle for something a closer, anacknowledgement.

That hasn’t stopped the organising of a petitionin the UK:http://epetitions.direct.gov.uk/petitions/20035

Norwegian scientists have published an open-access scientific article on ME - Benefit from B-Lymphocyte Depletion Using the Anti-CD20Antibody Rituximab in Chronic FatigueSyndrome. A Double-Blind and Placebo-Controlled Study by Øystein Fluge et al. It hasconcluded that delayed responses starting from2–7 months after Rituximab treatment, in spiteof rapid B-cell depletion, suggests that CFS is anautoimmune disease and may be consistent withthe gradual elimination of autoantibodiespreceding clinical responses. The present

findings will impact future research efforts inCFS.http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358Here, the physical basis of the disease isacknowledged. My only question is, what didthey mean by CFS? They did not define thisterm.

Finally, Ellen Piro, president of the NorwegianME Association was awarded the King ofNorway's silver medal for her services toME/CFS. The King's service medal was foundedby King Haakon VII 1 in February 1908. It isawarded "for service to progress in art, scienceand business, and for outstanding publicservice." The medal is awarded in gold or silver.

In the years that IiME have known and workedwith Ellen and the Norwegian MEA we can attestto her courage, determination and sacrifice inimproving conditions for people with ME andtheir families and for raising awareness of ME.

This award is hugely deserved and is anoutstanding honour for an outstanding lady.There have been very few, if any, similar awardsfor work related with ME. This is a historicmoment for the ME community and for Norway.http://niceguidelines.blogspot.com/2011/05/congratulations-to-ellen-piro-president.html)So, after years of really bad news for MEpatients, these three Norwegian tributes toscience and common sense are to be welcomedheartily by those of us who feel that ourgovernment’s neglect of us has yet to beaddressed.

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OMEGA Money

Helen Garfitt has done a marvellous joblooking after OMEGA money, but now shefeels that it is time to hand over to someoneelse. Many thanks to Helen! Could you helpwith looking after OMEGA money (starting inApril)? It is mainly receiving subscriptions anddonations; and paying out cheques (with otherpeople), for the quarterly newsletter costs,and occasionally for volunteer expenses. You'dneed to keep a record, and at the end of theyear we have a volunteer from Brookes whowill prepare the accounts from yourinformation.

If you think you might be able to help, orwould like more information about what thejob entails, please contact Helen on 01844298619 or email helenegarfitt@yahoo.co.uk.

"Poetry from the bed: Life withME/CFS"

There has been a lot of interest in the OMEGAPoetry Competition, and some people havealready sent in their entries. Our volunteerMatt has been putting posters up around thecounty (thanks, Matt!) and one is includedwith this newsletter for you to put up.

We are eagerly waiting to readYOUR poem, and we hope thatyou are thinking about words toput into your own personal ‘poemfrom the bed’. You can send oneor two poems, of up to 300 wordseach, on the subject "Poetry fromthe bed: Life with ME/CFS". Theclosing date for entries is 12th

February 2012.

The Judge for the competition isVivien Steels, Poet & Illustrator;her website, "Talking Paint" is atwww.viviensteels.webs.com

Send your poem, or for moredetails and an application formcontact:poetry.omega@gmail.com

or write to: Poetry Competition, 4 St DenysClose, Faringdon, Oxfordshire SN7 8NJ.

Tips for writing your own poem

Spend a little time every day thinking aboutwhat you want to say in your poem, what thesubject means to you and what aspect of thatyou want to express. Five minutes, preferablyat your best time of day, to start you off.

Throughout the day, make a note of anythingwhich grabs your attention or provokes anemotional reaction.

Read some poetry whenever you can, tostimulate ideas and inspire you.

Be brave with your use of words, andexperiment with style. Aim for a novel imageor use of words which will get your readersthinking ‘I hadn’t thought of it that way.’

Read your poem or poem fragments aloud toyourself, so you can hear how the wordssound together as well as how they look onthe page.

You can lie down with a stanza, hitch up with ahaiku, flow free with free form, or any form ofpoem, and if you don't think you have time, tomake up a rhyme... you really do!

OMEGA members and NHS staff celebrate the successful start ofOCCMET (see page 11)

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A.A.A.D.D. Know the Symptoms!

Thank goodness there's a name for thisdisorder.Age Activated Attention Deficit DisorderThis is how it manifests:I decide to water my garden as I turn on thehose in the driveway, I look over at my car anddecide it needs washing.As I start toward the garage, I notice mail onthe porch table that I brought up from the mailbox earlier.I decide to go through the mail before I washthe car.I lay my car keys on the table, put the junk mailin the garbage can under the table, and noticethat the can is full.So, I decide to put the bills back on the tableand take out the garbage first.But then I think, since I'm going to be near themailbox when I take out the garbage anyway, Imay as well pay the bills first.I take my chequebook off the table, and seethat there is only one cheque left. My extracheques are in my desk in the study, so I goinside the house to my desk where I find thecan of Pepsi I'd been drinking.I'm going to look for my cheques, but first Ineed to push the Pepsi aside so that I don'taccidentally knock it over.The Pepsi is getting warm, and I decide to putit in the refrigerator to keep it cold.As I head toward the kitchen with the Pepsi, avase of flowers on the counter catches my eye– they do need watering.I put the Pepsi on the counter and discover myreading glasses that I've been searching for allmorning. I decide I better put them back on mydesk, but first I'm going to water the flowers.I set the glasses back down on the counter, filla container with water and suddenly spot theTV remote. Someone left it on the kitchentable.I realize that tonight when we go to watch TV,I'll be looking for the remote, but I will notremember that it's on the kitchen table, so Idecide to put it back in the den where itbelongs, but first I'll water the flowers.I pour some water in the flowers, but quite abit of it spills on the floor.So, I set the remote back on the table, get

some towels and wipe up the spill.Then, I head down the hall trying to rememberwhat I was planning to do.

At the end of the day:The car isn't washed.The bills aren't paid.There is a warm can of Pepsi sitting on thecounter.The flowers don't have enough water.There is still only 1 cheque in my cheque book.I can't find the remote.I can't find my glasses, and I don't rememberwhat I did with the car keys.

Then, when I try to figure out why nothing gotdone today, I'm really baffled because I know Iwas busy all day, and I'm really tired.

I realise this is a serious problem, and I'll try toget some help for it, but first I'll check my e-mail...

From the Newsletter of the 25% ME GroupSUMMER 2011 http://www.25megroup.org

New OMEGA volunteers

OMEGA is proud to welcome two newvolunteers, who would like to meet or hearfrom YOU.

Matt who is helping us with the poetrycompetition, and Daniel who is taking overfrom Kim as the website developer. (Hugethanks to Kim for setting up the website - ifanyone would like to email or send anygrateful/appreciative comments I will passthem on).

Matt is going to be travelling aroundOxfordshire putting up our posters for thepoetry competition - which look great - thanksto Sarah. Matt would like to know - where arethe best places in your area to put them up? Ifyou like, you could meet up with him when hecomes to your area to discuss or show him, oryou could just email a list of suggestions.Please email him on:

matt.omega.oxon@gmail.com

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Volunteer News

Goodbye Kim, Hello Daniel. We are very sorry tosee Kim leave us. As you may know, Kim wasone of our first volunteers. She set up ourwebsite from scratch, after a lot of carefullistening to members, and much hard work toget the website as we wanted it, and to continueto keep it up to date. She has kindly stayed withus until we could find a replacement. We arevery happy to welcome Daniel, who is takingover as web developer - see Getting to KnowYou on page 12.

We have another new volunteer - Matt, whosome of you have already met. Matt is travellingall round the county for us, putting up posters,and will be continuing doing various things tohelp the poetry competition, installation andevents. We also welcome Vera Vaz, fromBrookes University, who is helping Helen withthe accounts this year.

Not forgetting our existing wonderfulvolunteers: Mary doing the newsletter and otherthings, Sarah designing posters and leaflets andClea helping us with research. A huge THANK-YOU! to you all.

Daniel is taking over the website, and alsolooking into setting up our own website,separate from the oxnet one. He would like tohear from you about what you like and don't likeabout the existing website, and what you wouldideally like from an OMEGA website, includingwhat name would be best. Below are somepossible names for our new website - which onedo you like best - or can you think of a betterone? Let Daniel know at: drobinson1@gmx.com

omega-mecfs.org.com.netmecfs-omega.org.com.netoxmecfs.org.com.netoxme.netoxcfs.org.com.netomega-action.org.com.netomega-mecfs.org.com.netomega-charity.org.com.netomega-uk.org.com.netomega-oxford.org.com.netoxomega.org.com.netmecfs-action.org.com.netmecfsaction.org.com.netomegauk.org

OMEGA AGM

We will be holding our annual AGM onSaturday 31st March 2012, 2pm to 4pm, at theSeacourt Hall, Chapel Way, Botley. The themeis complementary therapies. With no knowncure for ME, people often explore acomplementary approach and there are manytherapies to choose from. While we do notadvocate any particular therapy, membershave found particular therapies helpful. So weare inviting a number of complementarytherapists to speak about their work.

Frank Ludlow does bio resonance detection ofinfection using oxythiocyanate for thetreatment of multiple infections and considersME to be a multiple infection illness.

Robyn Kleinberg of Get Fitt (www.get-fitt.com)offers far infra-red thermal treatments. GetFitt has been working closely with leadingDoctors and Practitioners for 6 years using thelatest far infrared technology as a valuableadjunct in the treatment of ME, CFS andFibromyalgia. Get Fitt supply units for use inhomes and clinics and specialise in creatingpersonalised detoxification programmes torestore the body and its systems.

Dr John Kelsey is a UK registered naturopathwith superb assessment technology. Thisidentifies many causal issues enabling the bestrecovery route, using both traditionalnaturopathy and devices. John hasconsiderable experience in electromagneticaspects and in Earthing, a missing healthconnection with nature. He is based in Solihull.See: www.bioenergyproducts.co.uk andwww.thebep.co.uk

All the speakers will be talking about theirwork and are happy to answer questions. AllOMEGA members, their friends, family andcarers are welcome. We look forward toseeing some of you there.

Whichname doyou like

best?

Can youthink of a

bettername?

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New Year’s Resolutions

Ever managed to keep your New Year'sResolutions? It feels really great if you do. No,not going on a diet or going to the gym! Theseones are easy to keep, and will help people withME.

Resolution 1: Pay your OMEGA subscriptionnow. Yes, that's right - now! Get thatchequebook out and go for it. Or put the subsform enclosed with this newsletter somewherevery prominent, so that the next person whocomes in can help you with it. We really value allour members, and do hope that you will renewyour sub. It would really make things so mucheasier if we didn't have to chase late payers, youknow how it is...

Resolution 2: Put up the OMEGA PoetryCompetition poster - or ask someone to put it upfor you. Libraries are covered, and our newvolunteer, Matt, and other people are doing avery good job of putting up posters in the mainplaces. It would be great if you could try yourdoctor's surgery, complementary health centreor local shop. Go to your local coffee shop andhave a drink – put up a poster while you arethere.

Resolution 3: Lie back, relax, allow yourself todream... Let poetic thoughts and images cometo you. Then consider writing them down andentering our poetry competition – for moredetails, see page 5.

There we are, you could have all your NewYear's resolutions done in January, and the nexteleven months to feel smug!

Accessible Britain

Packed with 180inspiring days out,all reviewed by anenthusiastic anddedicated team ofdisabled visitors,the Rough Guide toAccessible Britain isan invaluable travelguide for anyonewith accessibilityneeds.

This book is FREE toblue badge holders. For more information onhow to get hold of your copy, please visit:https://www.accessibleguide.co.uk/guide/order-guide/buynow1.php

Equality and Diversity Survey

The Primary Care Trust of the NHS inOxfordshire is conducting an online surveyabout equality in the NHS. If you think the NHScould better serve people with ME/CFS,especially children, who at present areexcluded from the specialist CFS/ME service,please go to: http://bit.ly/uULKno

Mindfulness and Meditation

Many people find meditation and relaxationuseful in dealing with their ME, but somepeople are not well enough to access themindfulness courses offered on the NHS. Ourmonthly OMEGA meditation group welcomesall, and you can choose to lie down. It alsoincludes people joining in by phone or Skype.Another way is to do it on-line. There arevarious on-line courses available. e.g.http://bemindfulonline.com/ 01273 325136or http://breathworks-mindfulness.org.uk/introduction-to-mindfulness.html

Breathworks CIC, 16-20 Turner Street,Manchester, M4 1DZ

tel: 0161 834 1110

Breathworks also offers specific courses fordealing with pain and illness, and telephonecourses.

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“…beneficial effects

on stress hormones,immune function…positive impacts on

mental health”

“…singingseemed toactually giveme energy!”

Singing for Well-beingby Janet Stansfeld

I have loved to sing as far back as I canremember. The first record I bought (withcarefully saved pocket money) was the Soundof Music! I have sung in many differentcontexts, and have been lucky enough inrecent years to be involved with facilitatingcommunity singing groups and workshops.

The reason I wanted to write something forOMEGA however, is because of my experiencewith singing when I was ill a few years back.I’ve had chronic fatigue type symptoms for anumber of years (although never actuallydiagnosed with ME). About 4 years ago, I wasat a very low ebb, and could only manage tobe out of bed for a few hours a day. One ofthe very few activities I could still engage withwas group singing. In fact,the singing seemed toactually give me energy!Time and time again Iwould be surprised bydragging myself along,and then managing toparticipate and “forget” how awful I felt for acouple of hours.

There’s increasing medical interest in thehealth benefits of singing. Researchers arefinding beneficial effects on stress hormones,immune function and breathing capacity aswell as positive impacts on mental healthproblems such as depression. There seem tobe genuine physiological processes at play, as

well as the emotional feel-good effects ofengaging in a positive, connecting activity withothers. At times for me it was the only thing I

was managing toget out to do.

I’m aware that somepeople will besitting there saying“Ah well, but I can’tsing!” As a singingfacilitator this is one

of the commonest things I hear, oftenaccompanied by an anecdote about how theperson was told to mime in the school choir.Well, I say those miming days are over, as Ibelieve the pleasure of singing with others iseveryone’s birthright! For most of humanhistory singing has been a normal part ofshared daily life, as well as an integral part ofcelebrationsand festivals. Itdoesn’t have tobe a specialseparateactivityreserved for anelite.

There are agrowingnumber ofcommunitybased singinggroups whohave an accessible approach – e.g. noauditions, not using written music, andteaching by ear. The Natural VoicePractitioners’ Network is a good place to looknationally for these kinds of groups andworkshops. I run a few groups in Oxford (seewww.joinedupsinging.co.uk) – OMEGAmembers would be very welcome to enquireabout these. Or maybe there would beinterest in trying out a session or twospecifically for OMEGA members. You cancontact me via email: jan.song@hotmail.comMeanwhile, I would encourage you to takepleasure in singing in whatever form ispossible – even if it’s just singing along withthe radio.

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…helpingpeoplegives me

the mostjoy…

Home Improvement

OMEGA has recently been contacted by theHome Improvement section of the Oxford CityCouncil who'd like to promote some of theirservices which may be of benefit to those withME (or many other illnesses for that matter -feel free to pass on the information to othersyou know whom you feel this may help also).

Of particular interest are the 'DisabledFacilities Grants' and the 'Small RepairsService' but the other services may be helpfulif you fall into the right category and agegroup. Click on the pdf booklet links on theOxford City Council website for more detailedinformation.http://www.oxford.gov.uk/PageRender/decH/Oxford_Home_Improvement_Agency_occw.htm

Quiz Nights at The Rusty Bicycleby Jo Breheny

Here is some very good news about The RustyBicycle Pub, 28 Magdalen Road, Oxford, OX41RB. I have spoken to the owner of the pub;they often have pub quiz nights to raise fundsfor local charities and they will run some for us!

I think this is fantastic as they have very kindlysaid that they will run some in December topromote the poetry competition and some inApril to promote the Installation! The first onewas on 14th December.

Would someone be able to collect funds for us?If you could let me know I will inform the ownerwho it is so he knows it is kosher.

Additionally, it would be fantastic if someonefeels up to saying something about thecompetition and OMEGA. It may also be a goodidea to take some leaflets? I think it would reallyhelp raise awareness at the very least.

The pub isin theCowleyRoad Areaon thesame roadas theMagic Cafeand isopen: Mon - Thu 12 noon - 11pm, Fri & Sat 12noon - 1am, Sun 12 noon - 10.30pm.

Getting to Know YouDaniel Robinson hasrecently joined OMEGA asour new Web Developer.He lives on his own in EastOxford, Cowley. His mainjob is working as aFreelance Web Developer.We asked him abouthimself...

What are you enjoying about your work forOMEGA?

“I like the challenge of designing content for acharity, where there is a requirement to getfeedback from a number of sources. I alsoenjoy the challenges of working with existingcontent, which more limiting, requires adifferent set of skills than I’m used to using.”

What was the most interesting or surprisingthing you have learned about ME?

“I didn’t know that it affected so many people,and how much it affects people’s day to dayliving.”

Tell us something that you've done recentlythat you've enjoyed?

“Modifying the existing site, and going downto the OCVA headquarters to have a chat withSarah Beer, who gave me some usefulguidance on how to use the OCVA website toedit content.”

What gives you joy?

“I would say, helpingpeople gives me the mostjoy, and learning newthings.”

Tell us something funny.

“Here’s a funny mathsjoke: The worst thingabout getting hit in the face with Pi, is it neverends.”

If you would like to be featured in the "Gettingto Know You", please write, with your contactdetails, to newsletter.omega@googlemail.comor 4 Bursill Close, Oxford, OX3 8EW, marking it"OMEGA - Getting to Know You".

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OMEGA played

an essentialrole in

defining the

make-up ofthe OCCMET

team

The History of OMEGA and OCCMET

This article is based on one by Norman Boothwhich appeared in the Newsletter of theOxfordshire Neurological Alliance recently.

OMEGA has always wanted better treatmentfor ME and a better understanding of theillness. As long ago as 1959 E. D. Acheson(later to become Chief Medical Officer ofEngland) and others carefully described thesymptom pattern of MyalgicEncephalomyelitis (ME), and the World HealthOrganization recognized ME as a neurologicalillness in 1969.

Locally for many years the only availableservice for people with ME/CFS was a hospital-based psychological service deliveringcognitive behavioural therapy (CBT) to whichpatients were referred. By 2002-03 OMEGAhad carried out two surveys of patients andone of all Oxfordshire GPs. On the basis of theresults*, we prepared and presented aproposal to the Commissioning Board of thethen 5 Oxfordshire PCTs (Primary Care Trusts).It was for a community clinic service; amultidisciplinary team that could meet andtreat (particularly house-bound) patients intheir homes and in local health centres. Thisproposal was rejected but, when theDepartment of Health (DoH) introducedspecial funds for teams such as the oneproposed, OMEGA persuaded the PCTs to signoff on a bid, using our previous one. The PCTsinsisted condition that such a team should co-ordinate with the existing CBT service. TheOxfordshire bid was approved by the DoH withthe condition that the new service would beextended to treat children and young peopleas well as adults.

OMEGA played anessential role in definingthe make-up of theOCCMET team,participating ininterviewing and selectingcandidates and in advisingthe PCTs. A Steering Groupwas set up, consisting ofrepresentatives of the

different services, PCT managers and OMEGA.This has now become the Advisory Group;OMEGA is represented on it and now chairs it.The team, Oxfordshire Community CFS/METeam (OCCMET), established in 2005, consistsof a GP with special interest in this illness(GPwSI), 2 occupational therapists, a physicaltherapist and an administrative assistant, allpart-time.

OMEGA is very proud of this team and wehave fought and campaigned to support itagainst the recurrent threats of funding cuts.The team is only about one-half of the originalplanned hours and number of members,especially since Glenwys Wormald, thephysiotherapist, has left. The extension totreat children and young people has yet to beimplemented, and we are still activelycampaigning on this front.

Another problem is that in OCCMET’s 6 yearhistory there have been many changes of localNHS organisation, and hence changes inmanagement of the team. This lack ofcontinuity also makes our campaigning andsupport more difficult; people whom we getto know in the system soon move to otherjobs. Patients with ME are very happy thatOCCMET exists, but this service cannot meetthe demand (the waiting list is now 31 weeks)and it needs to be strengthened andvigorously supported in these times of majornational reorganisation of the way services areadministered and commissioned. OCCMET isvery successful and could become an idealservice and a model for other neurologicalillnesses. Meanwhile OMEGA is constantlyalert to convey the views of people with MEand to guide the service. So please feedback tous, so that we continue to do this.

* The then PCTs asked us to produce ‘evidenceof need’. We were able to use data from thePatient Surveys to do this. Moreover, thesurvey of GPs told us that over half did notknow about or were not satisfied with existingservices, and 68% were in favour of a primarycare multidisciplinary specialist clinic such aswe were proposing.

Patricia Wells, Jan Seed

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Diary Dates

12 February: Closing date for poetry competition31 March 2012: OMEGA AGM, 2pm-4pm, Seacourt Hall, Botley.April (TBD) Quiz night for OMEGA at The Rusty Bicycle, 28 Magdalen Rd, Oxford12th May 3-5pm: Poetry competition prize giving, Magic Café, 110 Magdalen St., OxfordAll of May: Art installation on severe ME & poetry exhibition: Magic Café, Oxford

OMEGA Poetry Readings

Date Time Location

11th May 12.30pm to 2.30pm St. John’s Rooms, Grove Parish Church, MainSt., Grove Wantage, OX12 7LQ

12th May 3pm-5pm Magic Café, 110 Magdalen St., Oxford

14th May TBC Café Loco, Oxford

14th May TBC Four Pillars Hotel, Sandford-on-Thames

17th May 12md to 2pm Shillingford Bridge Hotel

OMEGA Meditation: 27th Jan, 24th Feb, 30th Mar, 27th Apr, 11pm-1pm. For moredetails, call 01865 718274 or email omega.meditation@phonecoop.coop

OMEGA Book Group: Contact Nicky Williams for details on 07813 942474

OMEGA Oxford Area Social: FIRST MONDAY of EVERY MONTH (Second Monday ofthe month if a bank holiday) at Four Pillars Hotel, Sandford-on-Thames. TelephoneJo and John 01993 866610 or Lesh on 01865 766310.

Wantage and Grove ME/CFS Support Group, Cornerstone Coffee Shop, 10 SavileWay, Grove Wantage, OX12 OPT. For more information contact Annie KingsburyTel: 01235 763813 Email: annie.kingsbury@talktalk.net

Banbury Support Group: For dates, call Tricia Barnett 01295 278810

Parent Support Group: Contact Anna Russell Pritchard about this new group on07825 886331 or email anna.Russell.Pritchard@uwclub.net

Bicester Support Group: For more details call Nicola Williams 07813 942474

South Oxon ME/CFS Support Group: 12th Jan, 13th Feb, 12th Mar, 9th Apr,Shillingford Bridge Hotel, OX10 8BL. ring Tessa on 01491 838727.

See OMEGA website for details of other events:http://www.oxnet.org.uk/omega/omega_events

OMEGA Roles and Contacts

Position Who? PhoneChair VacantMembership Lesh 01865 766310Money Helen 01844 298619Volunteers (Organiser) Jan 01865 718274Clinic Group (research /campaigning/NHS liaison)

Norman 01235 833486

South 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 718274

Oxfordshire ME Group for Action (OMEGA). General Enquiries to OMEGA, 4 BursillClose, Oxford OX3 8EW, Tel. 01865 766310, E-mail: ltrl3@tiscali.co.ukOMEGA Website: www.oxnet.org.uk/omegaOMEGA on Facebook www.facebook.com - search "Oxfordshire ME Group for Action".

OCCMET (Oxfordshire Community CFS/ME Team): 01295 819191, or e-mail:occmet.administrator@oxfordshirepct.nhs.uk

ME Association Support and Information Line 0844 576 5326. Open every day:10.00am – 12.00pm, 2.00pm – 4.00pm and 7.00pm – 9.00pm.

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

Welfare rights helpline (AfME Membership only service): 0845 122 8648 or email:support@actionforme.org.uk

OMEGA Newsletter Production Team: Jan Seed, Nathan Smith, Pat Williams, CathyBrocklehurst, Mary Horan, Joanna Breheny, John Porter, Jo Porter, Diane Drayson, LeshLender and Catherine Rye.

With thanks to: Christine Standing, Jan Seed, Joanna Breheny, Jill Woodward (cartoons),Pat Williams, Janet Stansfeld and Tessa Keys for contributions.

The next newsletter copy deadline is 2nd March, so please send any info, news, jokes,poems etc. to newsletter.OMEGA@gmail.com. To receive your newsletter by email, put‘email newsletter request’ in the subject line. Send articles, jokes, cartoons or letters forpublication with ‘Editor’ in subject line.

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