May Newsletter

M.E. Central

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

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

N e w s l e t t e r

E x t r a

“Supporting sufferers and their families.”

We are the only ME support group in Birmingham and Solihull at the present time Membership costs £5 a year and includes this quarterly newsletter 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

Other Support Groups Walsall and West Midlands ME LINK: www.walsalldisabilityforum.com Go to ME Link under member organisations [email protected] [email protected] Tel: 0871 7503850

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

ME Association (MEA): 0870 444 1836

Association of Young People with ME (AYME):

ME Research UK:

0845 123 2389 www.ayme.org.uk

DIAL UK: 01302 310 123

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

WE have some very good news for our group ... Our application for a grant from Grassroots was successful! Funding for three years of £4961 has been secured - to be released in three stages, with £2198 for this year. Jenny says “No need to tell you how much this will mean to us - no more worrying about how we were going to keep going, especially through the recession when costs were rising. Not only does this grant provide us with our running costs, but we can plan ahead a bit, and bring in things to help us all and to raise awareness of M.E. in our community. More news on all this in our June newsletter but see inside for our M.E.

In This Issue...

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

FUNDING JOY FOR GROUP

Sponsored Campaign Special Research Extra M.E. Awareness Day

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

Your Feedback

Awareness drive for 2009.” We would like to thank everyone at the Solihull A good natter at one of our typical monthly meetings endless patience and kindCommunity Foundation (who provide Grassroots ness. And thank you to Community Grants) very Tarsam who contacted Maria of Shirley CAB last much indeed. Special thanks to manager Sharon year to get help with Pinnock who assessed and printing, and Maria herpresented our application self, who put us in touch to the Grassroots commit- with SUSTAiN. We have tee. Thanks also to Manjit written to thank her and invite her to give us a talk Johal at SUSTAiN who on Shirley CAB. guided us through the whole process with

THE FIGHT WILL GO ON M.E. campaigners Kevin Short and Douglas Fraser lost their case last month against NICE guidelines which govern M.E. treatment. They argued the guidelines are unfair and irrational. A High Court judge ruled against them. Despite the blow, organisations have continued to

raise awareness on some of the risks associated with GET and CBT, treatments available on the NHS recommended by NICE. The Countess of Mar, who recently launched a new group, ForwardME, raised concerns in the House of Lords just days after the hearing. See pages four and five...

JENNY WRITES...

Hello Everyone

There were lots of positive reactions for the first edition and some great suggestions and feedback, so we will take all this on board and, hopefully, reflect all your wishes in the forthcoming editions. Of course, the application for funding has brought about some changes for us as we now have to have a more formal committee set up and a constitution, but this doesn’t mean any change in who we are and how we all support and care for one another. We want to reassure you that everything our committee does is for and on behalf of the members, so please keep telling us what you want, what you like and dislike, how you are getting on and any comments that you want to make. We are not people with titles (!), we are still what we always were - people with M.E. and we love to hear from you! One of us will always be at the meetings and you can talk to us any time using all the ways that are now available to us – the group’s usual phone and email, and the newsletter’s new text service, email feedback and blog site. Our constitution is just a formal way of saying what our aims and aspirations are as a group just putting into words what we have always done and believed in since we started, so that other people outside of our group can understand what we do, why we do it and how we do it.

This edition is a Newsletter Extra for M.E. Awareness Day, May 12. The content is more focused on M.E. news and research this time and we plan to bring you this special focus each year in May. Your Blue Ribbon for M.E. Awareness is enclosed, so don’t forget to wear it with pride! Inside is news on how we can all do our bit this year for raising awareness. We look forward to seeing as many of you who can make our M.E. Awareness coffee morning (well, make that a coffee afternoon – we do have M.E!) on THURSDAY, MAY 7 from 12 noon until 2pm at my house. All are very welcome, your friends, relatives and carers. As I write this the sun is shining and we have some lovely warm Spring weather at last. I “ME is still our top priority and hope this will make us all feel better after the this group is all about us!” very long and cold winter that we had this year. Many of you reported that you were not Take care, all of you feeling too great after the prolonged cold Love spell, so let’s hope for better things and a lovely summer for us all! I hope you are all as pleased as I am about the new funding. It’s such a relief not to have to worry about how we are going to keep going, isn’t it? We can do more things for us and continue with our nice ‘new look’ newsletter. 2

Inside This

ISSUE 2

Jenny Writes

4

ME News

5

Group News

6

Campaign Special

8

Research Focus

M.E. Central

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

11 Feedback Form

TO MARJORIE S K THAN We have received a cheque for £100 from Marjorie, which was the total of her final fundraising year at Grosvenor Court where she lives. For many, many years she has made marmalade and sold greetings cards to raise funds for the group. During this time she has raised many hundreds of pounds which has been invaluable in keeping the group running. Sadly for us, she is finally retiring as she is now 86. Marjorie says she will continue to be a member, but nowadays as an armchair supporter! Thank you so much, Marjorie, for all the time, support and hard work you have put into the group over the past 20 years or so. The group would not have kept going without your contribution – so we all owe you a very big vote of thanks. We all hope you will continue to come and see us at meetings whenever you can.

Welcome to Jenny’s excellent May Newsletter Extra. There’s always a lot happening in the world of campaigning, politics and research but not all of us can keep up with developments. And yet, there’s no doubt that what happens up and down this land and around the world is HUGELY important for us all. Without campaigning, lobbying and research many of us simply wouldn’t have a voice, and the decision-makers would ride roughshod over us. So get stuck into your Newsletter Extra (& campaign letters enclosed) and support M.E. Awareness with our group drive on p5! You’ll find coverage and analysis on p6 of the recent High Court challenge by two M.E. sufferers. Plus on p7 our support group has been involved in opposing NHS training on M.E. There’s research into post exertional malaise on p8-9, and news about Vitamin D deficiency and more research on p10. We’ve enjoyed getting your messages via the group mobile. It’s given us feedback on articles and suggestions for the group so keep using it! The number is (for text or voice messages only): 07906 466 682 Read on!

M.E. Central will be 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...NATIONAL NEWS... NEWS IN BRIEF Kevin Tripp Verdict Two people accused of the manslaughter of a London ME sufferer who was killed in a supermarket rage attack have been found guilty. Tony Versami, whose punch caused Kevin Tripp to fall to the floor and be fatally injured, was sentenced to four years in prison. His partner, Antoinette Richardson, who phoned Versami and then pointed out the wrong man in the queue, was given 18 months. Whilst it is good that these people have been imprisoned for their vicious and unprovoked attack on an innocent man, many felt that they had got off lightly. Sadly, nothing will bring Kevin back to us.

IiME Conference The fourth International IiME conference is on May 29. They have a great line up of speakers including Dr Chia and Dr Jonathon Kerr. SSB sent an invitation to Dr Rickards offering to sponsor two health professionals from the B’ham ME/CFS clinic to attend this conference but, despite reminders, we have received no acceptances.

NEW SCIENTIST FURORE A controversial figure in M.E. medicine has caused waves on the New Scientist website with more than 500 responses to an article. This huge number is considered by many in the M.E. community to indicate the strength of feeling against his views. Professor Simon Wesseley, who founded the Kings College Chronic Fatigue Syndrome Research and Treatment Unit, says of ME/CFS in the recent article: “Often there is an organic trigger like glandular fever. That's the start, and usually most people get over it, albeit after some weeks or months. But others can get trapped in vicious circles of monitoring their symptoms, restricting

their activities beyond what is necessary and getting frustrated or demoralised. This causes more symptoms, more concerns and more physical changes, so much so that what started it all off is no longer what is keeping it going.” These and other remarks on the ‘psychological factors’ and ‘years of inactivity’ influencing those suffering severe CFS (sic) prompted hundreds of responses. So what do you think? Read the article and be sure to add your comment to the debate at: http://www.newscientist.co m/article/mg20126997.000when-illness-is-mostly-inthe-mind.html?full=true

MUM RUNS BELFAST MARATHON

M.E. supermum Antoinette Christie is to run in the Belfast Marathon on May 4. The mother of 15-yr-old sufferer David is raising money for ME Research. Antoinette said: “The reason I am taking part once again in the Belfast Marathon with my Shropshire ME Group husband Paul, son Paul, sister Conference Jeanette and a few friends is to raise much needed awareDr Vance Spence from ME Re- ness and funds into bio-medisearch UK will be speaking on cal research into ME. ME: A diagnostic & research “There is now much scientific challenge Lord Hill Hotel, evidence that M.E. is a comShrewsbury 7.00 - 9.00 pm, Wed May 13.

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

plex physical disorder of the nervous/immune systems, possibly with viral cause. “Very little help is available on the NHS and sufferers & their carers are usually left to cope on their own whilst their lives fall apart.” ME Research UK funds highquality scientific (biomedical) investigation into the causes, consequences and treatment of M.E. To donate go to: http://www.justgiving.com/ antoinettechristie 4

PLEASED TO MEET YOU

too. We know times are hard but feel that a slice of cake or a plant bought in aid of M.E. Awareness is money well WE are planning a very spent! Jo, our Outreach mempleasant May meeting to raise ber, is also inviting people at money for M.E. Awareness the meeting to note down on Thursday May 7. their burning questions for Please note it’s not Monday local MPs. It’ll be a quick as previously stated. and easy way to make sure So wear your Blue Ribbon your concerns about health and come along! Bring your care or wider issues are rerelatives and friends... every- corded for May 12 and acted one is welcome. on hopefully in the near fuFor this extra special May ture. So, one more time, meeting we are inviting that’s: Our cards will be on sale at meeting members to help raise money THURSDAY MAY 7 at 59 DIARY DATE for M.E. Awareness. Cartland Rd, Stirchley B30 A selection of items will be 2SD 12noon – 2pm Our June meeting is on on sale. And members are Hope to see you there! MONDAY JUNE 8 more than welcome to bring If you can’t join us please visit: Shirley Community Centre items along. Remember to 7.30pm bring a few pennies with you www.me-central.blogspot.com

MARCH COMMITTEE MEETING REPORT THE meeting was attended by Jo, Louise, Jenny, Tarsam and, at the end bit, Alan. Firstly Jenny spoke on the grant application (which was to be sent in) sending a donation to BRAME for blue ribbons (approved) and a campaign report (see your enclosed inserts). We then had a newsletter report from Louise. Feedback from the new newsletter was very favourable and the new easy to read format was very much appreciated. Jenny proposed an extra newsletter for ME Awareness in May with blue ribbons enclosed (approved, subject to receiving funding). Louise raised

other fundraising issues including charitable status Alan is to report back at our next meeting on this complex issue. We all looked at organising our committee meetings in the best way for pwME. Tarsam raised the potential for member contact lists and we examined ways of reaching out to all members (Jo to report back on this). We discussed ways of marking ME Awareness and it was suggested that posters and leaflets could be printed and sent out in the June newsletter for members to distribute if, and where they could. These could be sent to other organisations as well.

Finally Tarsam brought up the issue of balance, suggesting that newsletters should certainly contain lighter features, which were much enjoyed, but should be balanced with ME campaigning, politics and research issues vital for members who may be unaware of what was going on otherwise. He suggested half and half where possible for the quarterly newsletters. All agreed. Next meeting: May 11 All comments or suggestions welcome beforehand. Text us your views: 07906 466 682

5

CAMPAIGN COMMENT...CAMPAIGN REACTIONS IN BRIEF SHOCKWAVES FELT TEN days after Kevin Short and Douglas Fraser lost their High Court battle, the 25% Group resigned from Forward-ME , a group set up to unite the M.E. community by the Countess of Mar. Simon Lawrence stated: “We are no longer going to work with any organisation that supports the NICE Guidelines on ME/CFS, which primarily holds the belief that CBT and GET will help people with this neurological disease.” Who are Forward-ME? Forward-ME consists of the following organizations invited to date by the Countess of Mar to meet and discuss issues: AfME, AYME, ReMEmber, the ME Association, The TYMES Trust, Invest in ME, ME Research UK and BRAME – and (up until March 23) the 25% Group. The aim is to bring parties together. Why the split in opinion? Many in the ME community are frustrated by AfME and AYME’s continuing support of the NICE guidelines for CFS/ME and of the NHS services - particularly training (see opposite). AYME actually states in their December 2008 Link newsletter: – "We promote the NICE guidelines as being the document that must be followed alongside the RCPCH guideline". 6

What is happening with AfME and AYME? We need to be examining why they are so out of step with all other national groups and charities (who have condemned the guidelines as totally unfit for the purpose) and why they have a virtual monopoly of patient representation on the development of NHS services for M.E. Neither charity has voting rights for members, nor have either asked whether subscribers are satisfied with their endorsement of the NICE guidelines, NHS services or the CCRNC conferences. It is known AfME received government grants to develop patient involvement for NHS services. They refer to themselves as a ‘critical’ partner but, so far, their self perceived ‘influence’ has effected little change in the apparent psychosocial bias that the NHS has towards ME/CFS. Jenny says:Whilst it is sad that The 25% group have decided to leave, since it cuts them off from having a “voice” on Forward ME, it is entirely understandable given their long struggle to get any recognition or treatments for the severely affected. For more coverage see:

www.nicemecourt.co.uk

WE SAY: The court result means that NICE Guidelines for CFS/ME will be used to shape and define the NHS services you receive until a review in a few years time. So, more of the same for us with CBT and GET being the only treatments recommended by NICE. NICE SAYS: Professor Peter Littlejohns, NICE Clinical and Public Health Director responded to the High Court judgment saying: "We are pleased to have won convincingly on all counts in this case…today's decision means that the NICE guideline is the gold standard for best practice in managing CFS/ME." Extract from: NICE statement on CFS/ME judicial review outcome ME ASSOCIATION: "Despite the Judicial Review failing to result in the withdrawal of these potentially dangerous guidelines, the evidence relating to both clinical and cost effectiveness does not justify the emphasis and optimism being given to these two treatments." 25% GROUP: "This is certainly a very sad day for everyone with neurological ME. A disease that devastates the lives of sufferers and their carers, a disease that not only strips sufferers of their livelihoods, but that often leaves them totally reliant on carers for their everyday needs” COUNTESS OF MAR: “The guideline was published amid a barrage of criticism from the ME community. Criticised... because the only “treatments” recommended by NICE on the basis of very limited and strongly criticised scientific evidence were CBT and its twin sister, graded exercise therapy or GET.” The Countess said the assertion made by Professor Peter Littlejohns (left) was “not accurate.’ Extract from Hansard: http://www.publications. parliament.uk/pa/ld200809/ldhan srd/text/90318-0013.htm

SPECIAL...CAMPAIGN SPECIAL...

FURY AT JOURNAL VIEW AN article in the British Medical Journal about the High Court challenge has sparked fury from M.E. campaigners. Clare Dyer stated in the BMJ: “Several patients disagreed with the guidance, and a patient member of the group resigned in protest.” Annette Barclay, founder of the nice me court website said: “Clare Dyer must have been at a different High Court hearing to the one I attended. “The courtroom was full of ME patients...they sat in wheelchairs or on small folding chairs huddled over in pain. Outside the court a mother of a young child with ME unfurled a banner with dozens of photos of people

with the disease. Hardly a few patients unhappy with the NICE Guideline on CFS/ME! “Some of the great- Remember this? More than several, don’t you think? est support but experienced enough to came from grassroots level notice the suffering that support groups all over the NICE Guideline had brought country. Nearly 90 per cent supported the Judicial Review in their area. They represent over 18,000 people with ME and were against the NICE Guideline. These were group and CFS.” Read the BMJ article at: leaders often too ill to take an interest in medical politics http://www.bmj.com/cgi/eletters/ 338/mar17_1/b1110

OPPOSITION TO CONFERENCE SSB has united with other groups to challenge the content of health training. The West Midlands M.E. Groups, or WMMEG, issued a statement about the NHS & ME/CFS Education and Training Conference held in April in Milton Keynes. The conference is run by the Clinical Network & Research Collaborative - the group overseeing education and training of NHS professionals - in partnership with AfME and AYME. Jenny explains: “Keynote speaker is Professor Mansel Aylward, Director of the Un-

um Centre for Psychosocial & Disability Research Cardiff University. “His speech is on Pathways to Work – which is in fact his own back to work scheme. “Our statement was sent to the All party parliamentary Group on ME. After scant consideration our concerns were “noted” by Andrew Stunnell MP but he said the APPG “were not able to intervene”.” Undeterred, WMMEG sent the statement, plus a letter supported by 27 groups, to Forward ME, read at their Apr 21 meeting. The result:

A senior CCRNC representative will be invited to speak and answer questions at the next Forward-ME meeting. The Countess of Mar will ask in the House of Lords when NICE will formally review the ME/CFS Guideline. Concerns about the insurance industry's attitude to ME/CFS following the NICE case have been raised in a Countess of Mar letter to Lord Darzi. As a result, Department of Health officials are writing to Health-Insurance News about the inaccurate comments re ME/CFS on their website. 7

...RESEARCH FOCUS...RESEARCH

THE TROUBLE WITH... Research has been focusing lately on testing for post exertional malaise in ME/CFS patients. This is a defining criteria for ME, and a good area to look for differences between ME and other chronic fatigue states…with the hope of finding a diagnostic test for subgroups. THERE exists a very basic and still widely misunderstood aspect of ME/CFS... Why do patients have so much trouble with exercise? Staci Stevens, the founding Executive Director of the Pacific Fatigue Lab, explains: “Many researchers look at ME/CFS patients when they’re at rest- at baseline. “But as any ME/CFS patient knows, the real problems occur when their systems are under stress due to too much activity. We’re taking a close look the physiology of CFS patients as they undertake the most stressful activity of all – exercise.” The Lab has created a new exercise testing regime, two exercise tests two days in a row and other tests (known as the Stevens’ Protocol). The post-exertional problems reported by ME/CFS patients for so many years now have a chance to show up – and indeed they have. Lab results are both profound and disturbing. About half of the ME/CFS patients they’ve tested do, in fact, ‘fail’ or 8

The Pacific Fatigue Lab in California investigates exercise in people with ME/CFS . It is run by three exercise physiologists, Dr. Christopher Snell (Ph.D), Dr. Mark Van Ness (Ph.D) and Staci Stevens (M.A.), a researcher with ME/CFS.

significantly under perform in the first single exercise test – they cannot generate normal amounts of energy even when they’re ‘rested’. Phoenix Rising provides up to “It’s the rest of the patients date information on the latest that are so intriguing, research and treatment news though” Staci adds. “ When on ME/CFS in an easy to unyou give these patients a sec- derstand format ond test a day later many of Anyone with an interest in them will fail as well, and ME/CFS is invited to take a fail spectacularly.” look and contribute in the Your The amount of impairment the Lab sees can be astonish- Story section, one of many areas inviting comment and discussion ing - some patients suffer as much as a 50% drop in their ability to produce energy the For more information go to next day. Ms. Stevens spoke www.aboutmecfs.org of a man in his 20s whose next day exercise tests were worse that those of a healthy these two groups should be 85 year-old. In a hospital set- separated in research studies. ting his cardiopulmonary exercise profile would suggest This article is an extract from the Phoenix Rising newsletter (Jan he had heart failure. 09) by Cort Johnson: The Pacific Fatigue Lab’s http://aboutmecfs.org/News/ results suggest that the Cana- PRJan09Pacific.aspx dian Consensus group is correct. During either the first or What happens to you when second exercise test a large you have tried to exercise? subset of patients showed significant physiological abText us: normalities in their ability to produce energy. Another sub07906 466 682 set of patients did not. The Lab’s findings suggest that

FOCUS...RESEARCH FOCUS...

... Post-exertional exercise test onsymptoms, an including pain and ‘malaise’, electronically braked cycle are characteristic of ME, but objective ways of measuring them are lacking. Modern medicine likes to ‘measure’ complaints and tends to devalue or discount those it cannot.

patients. The researchers’ hypothesis is that patients with confirmed ME/CFS plus post-exertional symptoms will have a decreased performance (as measured by maximum oxygen consumption) on an exercise test completed 24 hours after There is an urgent need to the first as compared with the have objective tests for initial test. By contrast, ME/CFS. Physical exertion is control subjects (matched for difficult, but it has been age and chronic activity suggested that repeat testing level) will have similar with a graded exercise test might show quantitatively that performance on the two tests. If successful, the pilot data patients do not recover as could be key to a successful quickly as would be expected. application for funding for a larger comprehensive study If this is the case, then dual to better define, measure and graded exercise tests separated differentiate the symptoms of by 24 hours might indeed be a patients with ME/CFS from useful element in diagnosing those with other medical conditions. IN Britain, a study looking ergometer while connected to Have you tried to explain to friends or medics what happens into exercise tolerance is be- a metabolic cart through a when you overdo it? ing backed by ME Research mouthpiece. Effort in each UK. test will be assessed from A pilot investigation, blood measurements of peak Whether Graded Exercise Therapy or your own findings Exercise Tolerance in blood lactate concentration. after a busy or unusually active Patients Diagnosed with The team will examine day. ME/CFS is being led by Prof. patients using the Canadian We’d love to hear your findings. Brian Macintosh (Professor Consensus Criteria for A follow-up on the trouble with and Associate Dean of ME/CFS (2003) as well as exercise is planned for June. Kinesiology at the University the standard 1994 CDC of Calgary) and Dr Ellie criteria. Email your stories to: Stein. This is a basic assessment The study will require each step which ME Research UK [email protected] subject to perform a is requiring all its prospective [email protected] symptom-limited incremental grant-holders to undertake when assessing new study 9

...RESEARCH FOCUS...RESEARCH Chronic Pain Linked to Low Vitamin D LACK of vitamin D may be a little recognised source of increased pain and impaired neuromuscular functioning according to researchers. "Physicians who care for patients with chronic, pain that seems musculoskeletal and involves many areas of tenderness should strongly consider checking vitamin-D level," Michael Turner, MD, from the Mayo Clinic in Rochester, Minnesota, said. "For example," he added, "many patients who have been labelled with fibromyalgia are, in fact, suffering from symptomatic vitamin-D inadequacy. Vigilance is especially required when risk factors are present, such as obesity, darker pigmented skin, or limited exposure to sunlight." Dr. Turner led a study published in the journal Pain Medicine in November 2008. The work suggests a correlation between inadequate vitamin-D levels and the amount of narcotic medication taken by chronic pain patients. Read more on this at: http://www.medscape.com/viewarticle/590 151

The Psychologist News:CBT & CFS

Many of the participants reported feeling better, but an actigraph attached to their waist, which measures movement, and a six-minute walking test revealed that some of these 'improved' participants were actually less or only equally active after treatment compared with before. One possible explanation is that CBT is effective not through increasing activity levels as such, but rather by helping people achieve a healthier balance between activity and rest – for example performing mild exercise in the place of activity that is more work-related. Jenny says: The PACE trial – an ongoing study in the UK on ME/CFS, which compares the efficacy of using Adapted Pacing Therapy (APT ) or CBT or GET as treatments for ME/CFS– is not using actigraphs.

IACFS/ME Conference, Reno, Nevada This was attended by 167 ME/CFS research scientists and clinicians from 17 countries around the world. Oral presentations were made by 61 research scientists and clinicians during the professional sessions and 54 poster presentations of research papers. Some common themes in the research presentations were:

Researchers at Stony Brook University, New Ÿ Subgrouping patients by symptom York have questioned a key assumption clusters and positive findings underlying cognitive behavioural approaches (infection, autonomic problems, etc.) is to chronic fatigue syndrome (CFS). Patients the way forward for CFS and will help treated with CBT tend to report feeling better, to make treatment more effective a benefit that is thought to come about via a Ÿ Evidence pointing to problems with gradual increase in their activity levels. In energy metabolism is "hot" again turn, this activity increase is considered to Ÿ Infections with viruses and other help calm patient fears of symptom flare-ups agents (like Lyme) are important, but and to reverse the physical de-conditioning the science is still not "mature"; tissue associated with CFS. culture tests are more meaningful than However, in their study (Journal of Clinical antibody tests, but are harder to get Psychology) of 11 people with CFS who done well were treated with CBT, Fred Friedberg and For a really good overview see: Stephanie Sohl found a mismatch between what participants reported and actual meashttp://www.cfids.org/cfidslink/2009/040103.asp ured outcomes. 10

What do you think of the newsletter? ....................................................... ....................................................... ....................................................... As our group goes through some changes, with a new ....................................................... constitution, new funding and a newlook newsletter, ....................................................... we welcome your feedback. In fact, it’s crucial to our ....................................................... development. Please take a moment to fill in this form and send it What would you like more/or less back to Jenny. Or you can leave us a voice message on of in the newsletter? the group phone - see below. ....................................................... What do you think of the changes? ....................................................... ....................................................... ....................................................... ....................................................... ....................................................... ....................................................... ....................................................... ....................................................... ....................................................... ....................................................... What do you want from your ....................................................... support group? ....................................................... ....................................................... ....................................................... What do you think of our ....................................................... commit tee report on page 5? ....................................................... ...................................................... ....................................................... ...................................................... ....................................................... ...................................................... ....................................................... ...................................................... ....................................................... ...................................................... ....................................................... ...................................................... ....................................................... ...................................................... We will endeavour to answer your responses ....................................................... Please cut out this page and send it to: Suggestions for the next meeting: ..................................................... Jenny Griffin ..................................................... 59 Cartland Road ..................................................... Stirchley ..................................................... Birmingham ..................................................... B30 2SD .....................................................

FEEDBACK FORM: HAVE YOUR SAY

CONTACT US: If you can’t fill out this form but still want to feedback, then leave us a voice message or text on:

07906 466 682

Optional contact details for reply: NAME............................ ADDRESS............................ ...................................... ...................................... POST CODE........................ 11