Sept Newsletter

SOLIHULL & SOUTH B’HAM M.E. SUPPORT GROUP

About Us The Solihull and South Birmingham M.E Support Group is an independent, self supporting group run informally by the members for the members We are the only ME support group in Birmingham and Solihull at the present time Membership costs £5 a year and includes this quarterly newsletter We have monthly meetings six times a year; usually on the second Monday of each month (except January and August). We alternate between group co-ordinator Jenny Griffin’s house and Room 3, Shirley Community Centre (next door to Burger King and opposite Shirley Police Station), Stratford Road, Shirley New members are always welcome Friend of

Tel:O121 689 0777

o 0121 444 5177 Sun - Fri 12 noon - 7pm Jo will visit members who live within a reasonable distance of Kings Heath. She continues to be interested in setting up occasional daytime meetings. Claire 01283 217 398 weekdays 11am-4pm (Claire feels she might be most useful to newly diagnosed members but is happy to chat with anyone)

Member’s news, thoughts or articles for our newsletter are very welcome. Articles can be sent to Jenny: 59 Cartland Road, Stirchley B30 2SD or emailed to [email protected] or [email protected] Tel: 0121 689 0777 Text: 07906 466 682

National Groups 25% ME Group (for severe ME):

Fibromyalgia Association UK:

01292 318 611 www.25megroup.org

0870 752 5118 www.fibromyalgiaassociationuk.org

The Young ME Sufferers (TYMES) Trust: 0845 003 9002 www.tymestrust.org DIAL UK: 01302 310 123

Action for ME (AfME): 0845 123 2380 www.afme.org.uk

ME Association (MEA): 0870 444 1836

Association of Young People with ME (AYME):

ME Research UK:

0845 123 2389 www.ayme.org.uk

Disability Resource Centre Birmingham: www.meassociation.org.uk 0121 789 7365 www.disability.co.uk 01280 816115 www.meresearch.org.uk

Carers Centre Birmingham: 0121 678 8000 www.birminghamcarers.org.uk

SOLIHULL & SOUTH B’HAM M.E. SUPPORT GROUP “ s“uspuppoprot ri nt ign sgusfuf e t htehi e r ifrafmaim l iiel ise”s ” f freerres ras nadn d

STORM OVER GREAT ORMOND CONFERENCE SSB has alerted the ME community to a conference at Great Ormond Street Hospital that appears to promote the Lightning Process to NHS health professionals. The treatment, known as the LP, generally costs £600 a course and has received mixed feedback. Many ME sufferers claim to have been cured after the two-day intensive course. But equally, there are reports of people relapsing following the process, which involves instantly blocking any negative Sponsored thoughts and resuming By: ‘pre-ME’ activity levels. The talk at Great Ormond Street is entitled “From Assessment to Recovery: Holistic Approaches to Working with Young People with CFS/ME” and includes an introduction to the Lightning Process. SSB believes that costly alter-

native therapies should not be promoted in NHS circles. When Jenny spotted the GOSH meeting she alerted Dr Charles Shepherd, medical advisor of the MEA: “I told him we felt it was Photo: NOAA unacceptable and of alternative treatment exploiting children and such as this, which have parents to include an unproven therapy which not been assessed for was also very expensive safety and at an NHS conference.” efficacy in good quality clinical trials, are Dr Shepherd raised the issue at the July meeting presented to professional of Forward-ME. meetings.” cont p 7 Dr Shepherd said: “I don't have any problem In This Issue... with health professionals learning about Fundraising Success and debating new and possibly controversial Group Campaigns approaches to treatment that are clearly being Research Latest aimed at vulnerable people with ME/CFS. Your Feedback “My concern lies in the way that expensive forms

JENNY WRITES... were pleased to welcome Bernadette at our September meeting (see meeting news). As you can see on page 4, the committee’s thoughts have been turning towards our AGM next year and we hope that some of you will think about becoming a committee member and /or volunteering for a working party: details are on our committee news page. We are also trying to plan in advance for ME Awareness Week in May next year, having found out that when you have ME it is a really good idea to start early as a last minute rush is quite exhausting! So if you have any ideas or would like to volunteer to join this Hello everyone working party, even if you could only I hope that you have enjoyed your summer in contribute by phone or email, we would be spite of the fact that we didn’t exactly get the happy to hear your thoughts. ‘barbecue’ summer that the weather men predicted! I was very lucky as I went on “We want you all to feel part of holiday with my family in June and I think the group and your input is we had the best weather then. It was really invaluable.” nice to have a break in Cornwall and it’s always surprising to discover that the pace of The committee is only there to put in place life is so much more relaxed and slower down what you, the members, want so speak up and there than it is here. Even with ME, when you then we’ll know if we are doing the right would think we are mostly out of the rat race, things or what we can do to make the group you notice how much more peaceful it is and even better for you! how people have more time to chat. I really hate to mention this, but Christmas is not too far away now and we have included Thank you to everyone who got in touch over some information on where to buy some ME the summer, it’s been good to hear your news Christmas cards. It is good to get your cards and how you are getting on. It always seems a early and then you can pace yourself and long time in between meetings as we have write a few at a time. If you are like me August off, so I am always pleased to know though, you will be full of good intentions that you are all still out there! Some of you and then forget to do it until December - just have had a good summer which is nice to like last year! But at least you will have the hear, but some of you have not been having cards handy when you do remember J such a good time and I hope that things will get better very soon for you. Remember we Take care of yourselves, are always here, if it all gets too much. Love In the meantime the group has been moving on and many of you have taken advantage of our new library service and our relaxation iPods, which Louise has put in place – lots of thanks to her for doing this. We have also taken up the offer of an outside volunteer and

Inside This

ISSUE 2

Jenny Writes

4

Group News

6

ME News

8

Conference Focus

10 Real life: Shopping 12 Christmas Card Range 14 ME News 16 Therapy: QiGong 17 Comedy Central 18 Your Letters

M.E. Central

SOLIHULL & SOUTH B’HAM M.E. SUPPORT GROUP

Phew, there’s some big topics in this issue. Jenny has her finger on the pulse as always, and we’ve got some fine investigative work to report regarding the Lightning Process. Also the APPG inquiry that we wanted members to contribute to last issue looks in danger of becoming a whitewash (p 15). There’s urgent news on how those of us on benefits need to fight to protect them by taking part in an AfME survey (p 7). And a showstopping speech from an ME conference is condensed on page 8 (the full version is online or available from Jenny). Meanwhile Tarsam raises the issue of what support groups are for on p 22. Well done to Shirley, who raised £125 for the group (p 5). And please do read our committee report for ways we’d like members to become more involved either by becoming committee members themselves or by opting to start or join one of our new working parties on a range of themes designed to increase your input into the group. And, as this is the issue that concerns the run-up to Christmas, there’s a light-hearted look at shopping (p 10), plus our new card range (p 12). Keep in touch, by email below, or by text: The number (for text or voice messages only): 07906 466 682

19 In Touch 20 Research News 21 Book Ends 22 The Last Word 23 Sources of Help

M.E. Central is published quarterly, and aims to reflect the interests and concerns of members of Solihull and South Birmingham M.E. Support Group. All submissions are subject to editing by the editorial team. All rights reserved. We welcome articles and ideas from members, either named or anonymous. Please email:

[email protected] [email protected] 3

ME NEWS...GROUP NEWS...ME NE

T S E T A L E COMMITTE Jo, Tarsam, Alan and Jenny attended the July 21 meeting. Louise sent her apologies as she was unwell. We heard reports from Jenny on campaigning issues, correspondence to the group, fundraising events and donations. The committee congratulated Shirley on her splendid fundraising day at Perryfields School (see p5) which raised £125! The library service and ipod service are up and running with a very good response so far. The committee thanked Louise for her hard work on setting up these new services. It was decided to publish a full newsletter in September which would include an invitation for members to nominate themselves or others to

become committee members in 2010. Another major new development is the introduction of a contacts list for members. It was proposed that the Dec newsletter would include a membership renewal form, voting slips for committee members, notice of the group AGM and a contact list invitation/permission form. Alan reported back on the group finances which are holding up well this year. Jo proposed the use of working parties to encourage new input of ideas and proposals from members outside of a normal committee meeting. Findings could be presented to the committee for consideration, which would hopefully make meetings

more efficient. See box below for ideas. Tarsam proposed that we set up a working party to prepare how to put together a SSB contact list for members, which he had suggested at a previous meeting. Jo and Tarsam are on this working party. The committee also agreed to send out a Swine flu leaflet as soon as possible. Many thanks to Tarsam for hosting the meeting and making us all feel comfortable and relaxed! Next meeting Oct 19. Interested in becoming a committee member in 2010? We would like to hear from you! To chat about what’s involved phone Jo: 0121 444 5177 or Jenny: 0121 689 0777

We Ca n

ME NEWS...GROUP NEWS...ME NE

SPELLING IT OUT Shirley Harris, a teacher and member of our support group, has raised a staggering £125 at a school fundraising event. She organised a Victorian tea room in her classroom at Perryfields High School, Oldbury, in June to raise money for ME research. On the day she also did an information stall, with blue ribbons for sale and posters raising awareness of ME. Shirley (pictured with pupils) said: “It was a really worthwhile exercise; not only did we manage to raise a fair sum of money, but staff and pupils gained insight into an illness which they knew so little about before. The way in which the pupils in particular threw themselves into want-

Work

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HAPPY BIRTHDA Y

DIARY DATES October 12: Shirley, 7.30pm: Kay Donaghy from Solihull ENABLE is coming to Shirley to give us a short talk on social services direct payments.(See Help page) November 9: 59 Cartland Rd, 1-3pm

ing to raise money for such a good cause made me proud to be their teacher.” Jenny and Alan were invited to the year 9 assembly in July to receive the cheque from head teacher Mr Meredith. Jenny says: “We met some of the year 9 pupils and staff., and so we were able to thank them in person – especially Connor and his brother, Zac.” A big Thank You goes out from all of us to Perryfields High School for making us part of their charity day. And special thanks to Shirley!

SEPTEMBER Karen Byfield Adrian Earle Clare Burton Maggie Scott

John Drinkwater Pat Percy Nayyar Areehy

Dec 14: Christmas Social: 7.30pm, Shirley –everyone welcome! Message from Jo: “If anyone would like a lift to meetings get in touch on 0121 444 5177 (Sunday to Friday 12 – 7pm) and I will see if I can help. Nothing guaranteed but worth a try!” Thanks to Patrick who agreed to feature in the Solihull News, highlighting the work of our group for the Handmade Burger Co’s charity campaign. It prints Sep 25.

OCTOBER Sue Guy Janet Harrison Jemma McAuliffe Jollette Benjamin Marianna Puzzo Martin Dunn Jill Izenstain

ME NEWS...GROUP NEWS...ME NE “LP Doesn’t Work for ME” John Sayer has created a web page recording experiences of the Lightning Process at: www.sayer.abel.co.uk/LP.ht ml Contributions should be emailed to: [email protected]

NEW VOLUNTEER FOR GROUP

Our new volunteer Bernadette attended the September meeting in Shirley. Bernadette became a volunteer through SUSTAiN and we were introduced to her Invest in ME via Manjit, who helped us so Conference 2009 much with our grant earlier in The 4th international the year. We have asked conference had an impressive Bernadette to attend and help list of speakers, including Dr out with the Shirley meetings Chia, Dr Kerr and Professor to provide cover for when Kenny De Meirleir. Hilary Jenny is unable to make it. Johnson (who wrote Osler’s Jenny says: “Now we will Web) gave a pre-conference have Bernadette to make sure talk on how ME has been everyone is welcomed and manipulated by a government looked after. For the time agency. This talk and all the being we will both be at the presentations at the conference Shirley meetings while we all are now available on a set of get to know each other.” DVDs which can be ordered Bernadette said she learned a from Invest in ME (£12) lot about ME from our first www.investinme.org meeting! It was good to also or borrowed from our library. see Ron Prescott at this meet-

ing, who was a member many years ago. Ron has trained as a holistic therapist and has just brought out his DVD on QiGong and he is justifiably very proud of this. At the end of the meeting Ron did about 10 minutes of basic QiGong with us and we all discovered how to channel and increase our energy flow. Ron pointed out that nearly all the people that attended (except for Jenny and Bernadette) were male. Jenny adds: “In my usual ME way I hadn’t noticed! I think this is a first. Several members turned up (well done!) and we had one new member – welcome to George!” See p 5 for diary dates.

OBITUARY: MARTIN DUNN Martin Dunn passed away on September 21 after a long and very courageous battle against cancer. Martin and his wife, Freddie, were loyal members of our group for many years. Martin developed ME after Q fever - though rare, there was well documented local outbreak in 1989. He was a great lover of nature and his very favourite place was South Wales. Tragically, it was here that both his parents

were killed in a horrific car accident in 2007, the shock of which he never really got over. Martin was a skilful carpenter and he wrote poetry, often inspired by his love of nature. We hope to publish some in future newsletters. Many of you will remember Martin attending our group meetings in Shirley with Freddie. Martin was a very down to earth person and had

a lovely easy manner about him. He got on well with everyone, he was always willing to talk to others and was a sympathetic listener; all of which made him very popular in the group. He also had a great sense of humour which we all enjoyed and he will be missed by us all. We send all our love, support and deepest sympathy to Freddie and all their family – our thoughts are with them at this very sad time.

ME NEWS...GROUP NEWS...ME NE

BENEFITS UNDER THREAT A government green paper on the future of care for adults is ringing alarm bells in the ME community. Many fear the government is going to stop paying Attendance Allowance and the care component of Disability Living Allowance and 20,000 people have signed an online campaign. Steve Donison of the Benefits and Work website drew attention to the contents of the paper, called Shaping the Future of Care Together, last month. The paper sets out proposals for a National Care Service for adults in England, focusing on older people but

also including long-term illnesses. Steve says: “The green paper suggests that the government plans to stop paying Attendance Allowance and the care component of DLA and give the money to social services to administer as part of a personal budget instead.” In response to this alert, Action for ME has set up a survey on its website. An AfME spokesperson said: “We need to know what people with ME think about these proposals, in case the Government phases out some or all of the cash entitlement

for extra cost of living incurred through disability.” The final deadline for all surveys and comments is November 2. The survey is available at www.afme.org.uk/news.asp Click on care consultation. To receive a paper hard copy of the survey please contact [email protected] or call 0845 123 2380.” The Benefits and Work campaign can be found at: www.benefitsandwork.co.uk Click on disability living allowance, then click again on DLA and AA threat from the lefthand menu.

LIGHTNING RESPONSE TO SEMINAR from front... Dr Shepherd argues that both sides need to be presented: “Those present also need to be aware of any negative aspects and concerns that are being expressed - people who have been persuaded by the promotional material, spent a lot of money, and not gained any benefit from a treatment. “This should then result in a critical and informed discussion taking place. “This is even more important when a behavioural treatment such as this is being aimed at children and young people. I was not convinced that this was going to be the case at the GOSH conference and so

raised my concerns through the Forward ME Group.” A spokesman for GOSH said: “Our annual chronic fatigue study day, aimed at professionals, has a varied programme looking at various treatments. “We have included Lightning therapy which some of our families have tried or are interested in trying. We are fully aware patient groups have concerns with this therapy and will explore it in an appropriate way.

“The presentation by its proponent will be followed by a response by Professor Peter White, and questions to a number of experts. “The issues raised with us by patient groups will be discussed. “It is wholly appropriate for professionals to have the opportunity to be informed about different approaches for treatment if they are also aware of controversies around those options. “A disclaimer stating we do not endorse or recommend treatment and management outside NICE and RCPCH guidelines will be made to all participants.”

CONFERENCE NEWS

WHEN DOCTORS There is a belief that we are suffering not from a physical illness but from an illShe has a daughter with ME so severe that for years ness belief. she was too weak to have her hair washed. This is at the root of all the problems we experience: the She wanted “to give a voice lack of resources, the to the severely affected as hostility and disbelief from they can't come to some doctors, and in the very conferences and are not seen worst cases, the imposition of by doctors. Their experience psychiatric treatment against is not always understood the patient's wishes. even by people with ME who In 2002 the working group of are less ill.” So she decided the Chief Medical Officer to speak out. said: "ME is a chronic illness As Michelle Obama said: a lot of money. In part, that is meriting significant NHS resources." a reflection of the vacuum "We are only as strong But an editorial in the Journal that exists within the NHS. as the weakest among Some people come to realise of the Royal College of us." how little treatment they are General Practitioners questioned the validity of the offered for their ME when Here, we print extracts from they develop another illness. CMO's report. It described her speech given to the RSM One of our members develpatients with ME as suffering conference on ME and CFS oped diabetes and described from persistent unexplained in July. For the full article go her experience at the diabetic physical symptoms and statto clinic at her local hospital: "I ed: "illness belief and www.mecentral.blogspot.com am regularly monitored. I am behaviour do not amount to listened to and what I say is proof of physical causes and My first thought about treattaken seriously. The clinic is there are gains involved in ment was - what treatment? adopting victim status". This well staffed with senior Because most people with was in spite of numerous doctors. Diabetic sisters ME experience a lack of research findings showing make visits to severely treatment. They are physical abnormalities in affected patients in their diagnosed. They feel relief. subjects with ME. homes. There is a weekly But rather than diagnosis I have been told by a drop in clinic for any being the start of a journey, it consultant physician that niggling worries." This is the end of the journey. would be beyond the wildest ME is by definition an illness Many people turn to alternadreams of most patients with where there is nothing physitive therapies, often spending cally wrong with the patient. ME. Catriona Courtier has had ME for 20 years. She is trustee of a support group in West London.

CONFERENCE NEWS

DON’T LISTEN... CBT is designed to change negative beliefs. What is a negative belief? It depends what the therapist considers negative. In the application of CBT to ME, it is often the patients' experience that exercise makes their symptoms worse that is considered a negative belief that should be challenged. In spite of research pointing to the contrary patients are told their symptoms are due to lack of fitness and can be reversed by exercise. Patients are told there is nothing to stop their bodies gaining strength and fitness. The ME Association survey asked people with ME about 25 different therapies. GET came bottom as least helpful and most harmful. Another survey by the 25% group showed that 82 per cent of severely affected patients had been made worse by GET. Some had not been severely affected before they tried it. Pacing means doing what you can, doing a little more when you are feeling better, doing less when you are feeling worse. Activity can be broken down into manageable chunks. It enables patients to enhance the quality of their life, even

though they still remain ill. But pacing is not a therapy or a treatment. People can pace themselves diligently and still deteriorate. I think we have to accept there is not currently a cure for the condition. However we cannot wait for a cure before we receive treatment. A West London group proposed to the APPG that patients with ME should be medically reviewed once a year; a review the patient would be offered rather than having to ask for, with a doctor who is knowledgeable about the physical symptoms of ME, who can discuss the patient's current symptoms, carry out investigations where necessary and offer symptomatic treatment. Treatment can be offered for many of the symptoms of ME including pain, allergies,

sleeplessness, anxiety, depression, nausea, dizziness and so on. But we do also want treatments which will directly address the illness. The recent Invest in ME conference which attracted medical experts from across the world showed the interest in antibiotic, anti-viral and immune modulatory treatments as potentially effective therapies for our illness. I believe Dr Kerr has said there are existing drugs which could turn off some of the upregulated genes he has identified. Of course trials are needed but when are these trials to be carried out? We are constantly told about the need for evidence based treatment but without research how can that evidence be provided? I began by describing the severely affected as the weakest among us. In some ways they are the strongest. If people climb mountains or sail round the world single handed they are praised for it, but to live for many years with an illness like ME is also a huge feat of human endurance and courage but is seldom recognised as such. People with ME at all levels deserve to be respected. They deserve to be listened to.

...EVERYDAY LIFE...

EVERYDAY LIFE...

Shopping 4 Energy

How many days until Christmas? We’re trying not to count. But ‘tis the season to at least try to shop with energy top of the list! Many of us used to love shopping... in fact some of us wonder privately if it was part of our undoing. These days, it’s commonly viewed as the last thing you want to spend time on. Supermarkets are hell on earth - a nightmarish combination of fluorescent lighting, unruly toddlers, beeping tills and chilly aisles (and if in a wheelchair at chiller cabinet level the blasts can be positively arctic). Clothes shops become part of distant memory, so unsuitable are they for the ME befuddled brain and exhausted body. Fighting your way through the racks of sales bargains, jostling at the tills, reaching up, bending down...well it all becomes strictly the preserve of the healthy. And to be honest, when we really think about it, is not shopping such a bad thing? Becoming purer of thought, high-minded in your rejection of all things consumerist is one of the hidden bonuses of life with a chronic illness.

But it doesn’t exactly keep the fridge stocked. And it does very little for your wardrobe. And let’s not even go there where Christmas is concerned (collective groan). So what are the options? Whether you are pacing carefully and managing your energy levels, perhaps still managing to work, or severely affected and unable to leave the house, shopping is for most of us way down the list. And yet kind of essential unfortunately. There are alternatives. For those of you bracing yourselves for a breezy suggestion to get online and sort it all out under the glare of a computer screen, you may be pleasantly surprised. A recent conversation with our Outreach co ordinator Jo revealed a little known fact. Sainsbury’s do telephone orders! Yes, without having to go near a computer, you can do your best compiling a list and

once it’s ready, just pick up the phone. You get through to a friendly member of staff who will run through your list with you, inputting it online and turning it, effectively, into an online order. This is then processed in the normal way. They help you choose a delivery time and before you know it, your shopping is at your door. The number is:

0800 328 1700

Organic box schemes are another way to avoid lists and computers. And they can be surprisingly economic. When a box of fresh ingredients shows up every week, you tend to cook with what arrives. There is very little waste, and it means you are left with just fridge and cupboard essentials to get. Where Christmas is concerned, it always helps to sit down with someone with a clearer head and just ask: “What do I need?” Two, or even three, heads are better than one and the beauty

of preparing a list is that you will undoubtedly save money. Try and jot down any special offers you see advertised any time from October these days! Presents are a different matter. It helps to have a “mission control” approach to the festive season, co ordinating everything as you lie on sofa or bed with carefully honed lists for food, presents, and all the things you would otherwise forget. Present lists need to be done early. By October. Bought gradually and without panic in November, and wrapped perhaps one a day in December. Stocking fillers can be bought whilst you do your food shop. Or there are some good nostalgia toy websites if you put nostalgic toys into google. Of course, one of the nicest money-saving tips of all is to make your own. From Christmas tree decorations to main presents, a home-made gift means so much more. None of this sorts out your wardrobe though... One solution is to put your favourite labels into an ebay search and your size. You’d be amazed at what comes up.

Don’t shop when overtired, whether in a wheelchair, on foot, on the phone or online - errors will be made Lists, lists and more lists are what get you through Sit down with someone without ME to plan your food shopping Consider a box scheme - not only will you get fresh, organic produce but there will be less of a shopping list each week

Plan present shopping in advance and pace the wrapping

An ebay search for clothes works wonders. Don’t waste your precious energy battling the hordes.

NEW CARD SELECTION FOR CHRISTMAS!

Pack A

Pack B

Why not buy a pack of our Christmas cards and raise much-needed funds for the group? You can choose from Pack A or Pack B, or a mix of both. Also, remember to order some friendship cards for sending letters over the festive season! Use the order form below or call Jenny to place an order.

Card Order Form Please indicate quantities in the boxes below and remember to make cheques payable to Solihull & South Birmingham ME Support Group: CHRISTMAS PACK of 12 Assorted: £6 a pack (£10 for 24) Pack A

Pack B

Mix Pack A & B

Our friendship cards are good to send to people any time of the year!

Tick box above to express an interest in Send A Card scheme

ME Research UK Christmas Cards are also now available. Just go to MERUK’s website www.meresearch.org.uk and click on Christmas cards Alternatively ring MERUK on 01738 451 234 and ask for a Christmas card order leaflet.

CHRISTMAS PACK of 6: £3.50 a pack Pack A

Pack B

FRIENDSHIP CARDS PACK of 4: £2 a pack Blue Sky

Deckchairs

In Fr iendsh ip

SEND COMPLETED FORM & CHEQUE TO: Louise Palfreyman 7 Goldsmith Road Kings Heath Bham B14 7EH

Your name............................... Your address............................. ............................................

I

ship d n rie nF

The ME Association are also doing Christmas cards this year and these can be ordered from the Book Order Form on their website: www.meassociation.org.uk or phone 0870 444 1836 to ask for help if you don’t have a computer . And don’t forget, even if you don’t buy Christmas cards, you can still help - see details of MERUK and the ME Association’s “Just Four Quid” campaign to raise money for biomedical research at www.justfourquid.com

TOUCH...ME NEWS...IN TOUCH...

WATCH ME CLIPS Hints on daily life with ME are now available in short videos on the NHS Choices website and YouTube. Dr Charles Shepherd, medical adviser to the MEA can be seen discussing how to come to terms with the illness and obtain help in a video on at www.nhs.uk/conditions/chr onic-fatigue-syndrome If you click on the real stories tab Annette Barclay, who has had ME for 25 years, gives some tips about how not to let the illness completely rule your life. ME on YouTube Short videos made by chartered health psychologist Dr Ellen Goudsmit - are now available at YouTube.

Diary Date October 17 France Quirin, Perrin Technique practitioner, is giving free one to one chat sessions about your ME and what may help you at Head To Toe Health, Kimballs Walk, off Knowle High St. Book in advance on

Dr Charles Shepherd

Go to www.youtube.com and put the words Ellen Goudsmit into the search field. Then click on NICE review The CFS/ME Guidelines Judicial Review Part 11. Part 11 explores the “Envelope theory”: avoiding over and under exertion and the precise difference between graded exercise and pacing.

01564 771 616 He says: “It’s important to have a personal talk and assessment by a therapist first.” There is no obligation to have any treatment. Do you need help with a fundraiser for ME? We can supply blue ribbons, posters, and awareness leaflets. Text:

07906 466 682

NHS CHIEF URGES SUPPORT Charities not supporting NHS guidelines for ME care may not have a say in the training of NHS professionals. West Midlands ME Groups have campaigned long and hard about NHS conferences and training overseen by the CFS/ME Clinical and Research Network Collaborative. The CCRNC chair, Dr Esther Crawley, and training manager Hazel O’Dowd, were invited to the July meeting of Forward-ME.They made it clear that being part

of the CCRNC meant supporting the NICE guidelines. Jenny explains: “Dr Charles Shepherd of the MEA asked whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive. “Dr Crawley acknowledged that, whilst the NICE Guidelines were flawed, they were a start. There was a need for all to work together to

produce evidence to effect a change in the guidelines. In order to join the collaborative, charities would be expected to sign up to the evidence based approach.” The evidence-based approach is namely Graded Exercise Therapy and Cognitive Behavioural Therapy, as supported by NICE guidelines. WMMEG is currently in a lengthy correspondence with Dr Crawley. We will report back on the outcome! The full minutes of this meeting are available at: www.forward-me.org.uk

ME NEWS...GROUP NEWS...ME NE

RUSHED INQUIRY CONDEMNED AS ‘DISORGANISED’ ME groups have slammed the government’s organising of an inquiry into services. The All Party Parliamentary Group held an Inquiry on NHS services for ME in June. They invited submissions, and sent out questionnaires for patients, Health Authorities and service providers. Jenny says: “SSB sent a submission of evidence from our group but have had no acknowledgement”. The hearings took place over three separate days in July. Very few people were invited to give personal testimony Jenny adds: “The overall feeling is that this inquiry was disorganised and rushed.” There has been no feedback from the inquiry as yet. Jenny said: “Many people said their PCTs, local services etc had not received their questionnaires and the patient questionnaire was hard to understand, to say the least!” The SSB Submission of evidence is available for anyone to read at our blog: www.me-central.blogspot.com. Or ask Jenny for a paper copy. Call her on 0121 689 0777

The SSB submission conclusion reads: “There was a great deal of anticipation and hope for the new NHS services for CFS/ME but this has been followed by a great deal of disappointment. The services are chronically underfunded. “They lack impetus and drive to improve. “Any improvement must come from the top down: there should be a real effort to unify programmes to increase real knowledge and not be satisfied with just providing any old service as long as it ticks the boxes for the DoH, regardless of whether the patients are satisfied or not. “The services lack accountability, transparency and a real desire to listen to the grassroots patients. Health authorities are only too anxious to offload their

responsibilities – financially and morally. “No one enforces the National Standard Framework and consequently many Health Authorities fail to meet these requirements. Meanwhile the patients continue to suffer and many lead lives of unimaginable deprivation and isolation without any hope. “We genuinely hope that the new initiative at the MRC to promote good quality research and engage with patients via the NHS services for CFS/ME and the local ME support groups is successful. “Without this the services are no more than a token gesture to thousands of sufferers of ME - a gesture which began with high hopes and goodwill but sadly failed to meet its expectations.”

COMEDY CENTRAL

THERAPY UNCOVERED SLOW BUT SURE

Ron Prescott began to train in alternative therapies when his ME started to improve. A former member of SSB, he is now a Tai Chi master and has just brought out a DVD aimed at ME sufferers called “The Smile ME Cure Programme”. A trailer is on YouTube, under the search term Smile QiGong. The DVD aims to offer a drug free holistic solution to symptoms and is a specially adapted programme which can even be done sitting down! Ron says: “Tai Chi and QiGong are one and the same but QiGong is static in the lower body and uses just the upper body. “With Tai Chi you are moving all the time. QiGong is the grandfather of Tai Chi and is better for ME.” Ron explains how Tai Chi and Qi Gong are of particular benefit to those with ME: “In Tai Chi we get energy created but not used up; you can recharge your batteries. “People doing aerobics may burn out their stress but they are also burning out their energy.” Ron started attending classes in 2001 whilst he was still recovering from ME. “I felt like a duck on water, like I’d found something I connected to.” He admits that at first he was quite tired but adds: “I knew it was right, I knew it would make me better and have a positive effect.”

Ron has adapted QiGong for ME to rule out the possibility of experiencing serious fatigue after sessions. “You can do it sitting or standing and the principle is that doing something slowly in a repetitive form is like meditation and helps calm the mind.” QiGong gradually works on energy levels, raising them slowly by moving muscle groups slowly. “If we move muscle groups fast we create energy but it drains very quickly,” Ron adds. By following the form, Ron says it is possible to find relief from ME symptoms. Jenny experienced a taste of Ron’s QiGong tuition at our September meeting and says: “At the end of the meeting Ron did about 10 minutes of basic QiGong with us and we all discovered how to channel and increase our energy flow. “I have to say that Ron immediately spotted my very tense and painful neck when I was doing the QiGong. “After the meeting, following a minor discomfort while it unlocked, my neck has been so much better – almost pain free and much more relaxed, so that was a great bonus for me!

We’ve all seen them, but never been quick enough to capture them on time. We bring you the best corkers from the world of signs In a Paris hotel elevator...

Please leave your values at the front desk

In a Moscow hotel, across from a Outside a New Mexico dry cleaning store...

This newsletter does not seek to endorse any one therapy over another, but aims to pro- vide a variety of articles on therapies for members information. SSB is not responsi- ble for any treatments subsequently taken. Always seek medical advice before trying new therapies.

monastery...

You are welcome to visit the cemetery Thirty-eight years on the same spot. In front of a church...

Don't give up. Moses was once a basket case.

In a hotel in Athens...

For more information go to www.solihulltherapies.co.uk DVDs are available at a reduced price for members by calling Jenny. Ron also holds classes at Olton Reservoir on Friday mornings 10-11am. Call him on: 0121 745 4084 for more information about these classes, or the DVD.

Russian Orthodox

where famous Russian and Soviet composers, artists, and writers are buried daily except Thursday.

On the menu at a Swiss

Bucharest hotel lobby...

The lift is being fixed for the next day. During that time we regret that you will be unbearable.

Visitors are expected to complain at the office between the hours of 9 and 11 A.M. daily.

restaurant...

Our wines leave you nothing to hope for

Outside a New York convalescent home... For the sick and tired of the Episcopal church

LETTERS...TEXTS...EMAILS... Thank you as ever for all your texts, emails and letters. Do keep them coming via the normal routes. You can text our ME group phone on 07906 466 682. Or email Jenny at [email protected] or the newsletter email at [email protected] Re the test for ME featured in our June issue: “I tried out the test a couple of days ago and came out a definite NEGATIVE. On the website it dose say if you have taken any antibiotics or Probiotics in the previous 6 weeks this will affect the results – and I have been using probiotics for years as I have found them very useful, I am still very interested in the idea that it is the resulting gas coming off from the bacteria and not the bacteria itself that are the problem.” Kevin, by email

in bed. Great for relaxation interaction between members though. Available at Amazon. and help with sharing lifts. Maybe some who’d like to Since having severe breathing come but haven’t got problems caused by transport. I’d find it easier, intolerance to medication, just a thought. Propranolol in 2007 then wheat/gluten allergy I have Member, by text been taking pro/prebiotics prebio 7 - two per day. Editor: Our committee report They are expensive but have on page 4 tells of plans to certainly improved my IBS introduce a contacts list in too. I also now take a product our Christmas issue. People called periobalance. One per can give their consent when day, to help protect my gums. they renew membership to go Though I have severe ME the on the list. The list will only improvement in my IBS and go to those members who breathing has helped in have consented to be part of managing my other symptoms the scheme. better. Love Wendy x Try 0800 328 1700 for Sainsbury’s phone shopping. Select the online option, they Have read Tarsam’s piece. It take a few details, then just so wonderfully captures the give the operator your order, life lost of ME and is so they will give you details of beautifully written. their service and arrange a His intellect and insight is delivery time. Jo x apparent despite serious illness. I re-read it often.

Is there any info on noise reducing earphones? Company Member, by text names and phone numbers? Can you sleep wearing them? Re Louise’s Thanks comment that more people should Member, by text go to meetings (group fundraising Reply: Sennheiser PXC250 drive, June issue, which are about £50. They p 5) if a contact list are over ear headphones so were available it unless you lie on your back might encourage all night they won’t be comfy more friendly

IN TOUCH...

Take a look at our new poster range... These are just three in a selection of publicity posters that can be adapted to suit an event you may hold, or just for general release. Shirley used the one on the left at her recent school fundraiser and said what a difference it made! It seemed to be quite a conversation starter. If you have any ideas of how we can use these posters text or email us:

07906 466 682 or [email protected]

GIVE AN iPOD A HOME... Our new iPod lending service has got off to a swinging start with all three iPods loaned out in the first three months. We now have two of them back again, so please do take advantage of this new scheme. The iPods have been programmed with a selection of relaxation resources and music and are designed to help members with a daily rest period that will leave you feeling extra refreshed! Relaxation has been proven in studies to help reduce the severity of ME symptoms. So what have you got to lose?

Each iPod comes with a booklet explaining the key controls and how to get the most from relaxation tracks. Your iPod will be posted in a jiffy bag with stamps for returns and the return date inside the leather case. Please recycle the jiffy bag by using the return address label. Just text IPOD to Remember, iPods can only be programmed at one computer, so please don’t be tempted to 07906 466 682 add anything of your own or With your name and address it’ll wipe the whole thing. If in the text or email: you’d like anything adding then email [email protected] [email protected]

BOOK ENDS

RESEARCH NEWS “Functional characterization of muscle fibres from patients with chronic fatigue syndrome: casecontrol study.” Chronic fatigue syndrome is a disabling condition characterized by unexplained chronic fatigue that impairs normal activities. Although immunological and psychological aspects are present, symptoms related to skeletal muscles, such as muscle soreness, fatigability and increased lactate accumulation, are prominent in CFS patients. In this case-control study, the phenotype of the same biopsy samples was analysed by determining i) fibre-type proportion using myosin isoforms as fibre type molecular marker and gel electrophoresis as a tool to separate and quantify myosin isoforms, and ii) contractile properties of manually dissected, chemically made permeable and calcium-activated single muscle fibres. The results showed that fibre-type proportion was significantly altered in CFS samples,which showed a shift from the slow- to the fast-twitch phenotype. Cross sectional area, force, maximum shortening velocity and calcium sensitivity were not significantly changed in single muscle fibres from CFS samples. Thus, the contractile properties of muscle fibres were preserved but their proportion was changed, with an increase in the more fatigue-prone, energetically expensive fast fibre type. Taken together, these results support the view that muscle tissue is directly involved in the pathogenesis of CFS and it might contribute to the early onset of fatigue typical of the skeletal muscles of CFS patients. Pietrangelo T, Toniolo L, Paoli A, Fulle S, Puglielli C in: www.ncbi.nlm.nih.gov/pubmed/19505395

FIND OUR LIBRARY LIST ONLINE Dr Darrel Ho-Yen who is a co-author of the below study is best known for his book Better Recovery...which is available to loan from our

“Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome The aim of the study was to determine the efficacy of an out-patient, multi-component programme developed for patients with chronic fatigue syndrome (CFS). Twenty-two patients were assessed before and after six months of treatment. Findings were compared with 22 individuals on the waiting list. The programme offered medical care as well as information and counselling to help patients to understand, accept and cope with their illness. At six months, there were significant differences between the groups for fatigue, self-efficacy and anxiety. Overall, 82% of the treated patients reported feeling better and 23% had improved to such a degree that they were discharged from the clinic. The gains were maintained at twelve months. The authors concluded: the programme was found to be both helpful and acceptable and may provide a useful first-line intervention for many patients with CFS and that short, pragmatic programmes may be as effective as cognitive behaviour therapy. “Patient Education and Counseling” (Goudsmit, Ho-Yen, Dancey.)

Many of you have been making use of our new library service. To make it easier to browse our huge selection we have decided to put the entire list up at our blog. You’ll also find extended articles from the newsletter and are welcome to leave comments. Go to:

www.me-central.blogspot.com Jenny is happy to send a postal copy of the list to those of you unable to access it online.

‘FIGHTING FATIGUE’ TOO NARROW IN FOCUS nosed patient, whose main symptoms are fatigue, memory and concentration problems stress and sleep disturbance. There's little on pain and sore throats, let alone dizziness (dismissed as a result of stress) or bladder disturbances (ditto). If you “Fighting fatigue. A practi- have ME, you will probably not recognise yourself in this cal guide to managing the symptoms of CFS/ME.” Ed- book. The approach to ited by Sue Pemberton and management is CBT, there's nothing on history or benefits. Catherine Berry. As for causes, viruses are This is the latest self-help merely triggers and the guide aimed at patients with subtext is that CFS is CFS, where the latter is deperpetuated by maladaptive fined in terms of the 1994 (unhelpful) beliefs and CDC case definition. To be specific, it's actually directed behaviours. at a subset, namely, those who The first chapter covers pacing and is clear and easy have not yet learnt to pace themselves and have ended up to follow, even when in a in a boom-bust pattern of ac- relapse. Although NICE might not have been aware, tivity. pacing has been part of CBT In a nutshell, this is a basic programmes for years and primer for the newly diag-

used to stabilise the condition. However, the version reminds me of the those I've read in psychiatric textbooks, and I'm not persuaded that it's more effective than the less complicated strategies advocated by Jason and myself. Arguably, the most useful chapters are those on memory and concentration and dealing with others. Finally, there is a summary of coping with relapses, which is fine for the newly diagnosed, and a short guide for carers. As a whole, this self-help guide has a very narrow view of CFS and its management and I would not recommend it except for patients with a history of unhelpful beliefs and behaviours and a preference for thought-by-thought instructions. Dr Ellen Goudsmit, psychologist and ME sufferer

..LAST WORD...LAST WORD..LA The ongoing debate amongst the ME community on the primary purpose of a support group has identified two main camps: the first being that such groups should be a befriending and support network for ME sufferers, the second that the group’s priority should be political campaigning for greater NHS provision, better State funding for research and welfare and promoting greater public awareness and social recognition. Of course, it’s a no brainer – there is room for both. However, I would like to posit here the argument that political campaigning must be the core priority because there is actually a cause and effect in operation: The reason new members turn up at the group is partly the direct result of the systemic mistreatment and negligence of ME sufferers that prevails. People’s isolation and weariness is not only caused by ME but also as an effect of the institutional abuse they experience for having ME. It follows, therefore, that we can only prevent this occurring by fighting and campaigning for ME rights on a long term, organised and concerted basis. In the light of the stunningly incorrect High Court decision that judged in favour of endorsing the current NICE guidelines on ME this campaigning becomes even more important. Make no mistake, friends, this appalling decision has set back our cause dramatically. It is imperative that we do not despair and relax our political efforts and retreat into the social and lifestyle side of group focus too far. We must continue to fight the good fight in every letter we write to our MP, poster we get put up on our local surgery or Library wall, every meeting we attend, every fund raising activity we engage in, every report we compile, every protest and petition we embark on, every research we help facilitate,

By Tarsam Singh

every newsletter and leaflet we compose and distribute. It is bit by bit, drip by drip, inch by inch with such commitment that we will make ME a mainstream illness thoroughly resourced, bureaucratically recognised and with a positive social profile. This will not be easy. We have to be real. Power is not given but seized. ME occurs in a context of limited resources, lobbying powerful by vested interests and popular media sensationalism. This is the way the world works. ME has to compete with all kinds of other needy groups and illnesses. This involves a sustained combat and scrap with drug companies, insurance groups and psychologist interests who all have important lobbying priorities to maintain there presence and profit portfolios within the NHS and Welfare arenas. For example, GPs receive on average four visits per month from drug reps and five promotional drug mailing every week. One in four are sponsored to attend conferences all expenses paid by drug companies. Coincidentally, antidepressants current prescription costs are over £3 billion which is third of the entire mental health NHS budget. The UNUM Provident insurance company is heavily involved with the DWP and the UK welfare system. UNUM’s “Chronic Fatigue Syndrome Management Plan” by Dr Carolyn L Jackson makes this

clear::“UNUM stands to lose millions if we do not move quickly to address this increasing problem” and in the same document ME/CFS is described as “Neurosis with a new banner” - a red rag to psychiatric job creation. This is not conspiracy theory but reality theory. If we remain just a befriending, feel good factor group these lobbying groups will walk all over us whilst laughing all the way to the bank. We have to be brave and accept this responsibility. Members join the groups for not just emotional support but organised representation of their opinions and needs to change official policies and attitudes in favour of ME. I know this sounds dreary and dull yet who else but us, will carry the fight for ME rights and advancement? We can’t leave this up to the officials or politicians because they don’t really understand what is involved; similarly, the NHS practitioners have no real incentive and it is outside of their remit. It is only us who can really move forward ME demands. It is my belief that in a hundred years ME will be treated entirely differently and no longer as a “controversial” condition but indeed a mainstream illness. Who knows they might even have found a cure for it. Either way, this current era of distress and maltreatment ME sufferers experience from the white collar and white coat brigade will be looked back upon with horror. Thus, we must assume the only honourable historic position available to us now which is to fight with all our hearts and minds for the ME cause. We have to be brave and accept this responsibility. Tarsam has asked us to make it clear that these are his personal views and that he welcomes any responses to his article via the usual newsletter contacts

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LISIEUX TRUST 184 Sutton New Road Erdington Birmingham B23 6QU Monday – Friday 10 .00am - 4.00pm

Birmingham Centre for Inclusive Living is a third sector organisation and registered charity. It is run and managed by disabled Information and support on a wide variety of issues including: people. It aims to work in partnership with disabled people across Birmingham to Welfare Benefits support and develop the aspirations of Employment individual disabled people (partners) Education towards independent and inclusive living. Leisure Activities Mobility/Blue Badge

0121 415 5500

Independent Living Fund Training Radar Keys

www.bcil.org.uk

0121 382 6660 07933 473 483 [email protected] www.lisieuxtrust.org.uk

ENABLE-SOLIHULL Enable-Solihull is working in partnership with care and support organisations in Solihull to prepare service providers and individuals for the introduction of new personalised management of social care provision.

A unique voice in Solihull bringing together over 30 disability support organisations, representative of a diversity of disability needs. Networking and signposting organisation for disability support groups Member organisations include those representing people with physical and sensory disability, users of mental health services and of learning disability services and the needs of carers. Set up with support from the Community Fund, Solihull MBC and from the Lloyds TSB Foundation

0121 788 1554