June 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

SOLIHULL & SOUTH B’HAM M.E. SUPPORT GROUP “supporting sufferers and their families”

We are the only ME support group in Birmingham and Solihull at the present time

URGENT CALL FOR FAIRER PROCESS

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 between 9-11am Tuesdays and 4-6pm Thursdays

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 Association of Young People with ME (AYME): 0845 123 2389 www.ayme.org.uk

ME Association (MEA): 0870 444 1836

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

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

CHARITY and patient groups have spoken out about unfair benefit decisions and the problems facing those with invisible disabilities. And they are calling for benefit doctors and decision-makers to be equipped with better knowledge of ‘hard to understand’ disabilities or illnesses. SSB attended a Birmingham Ipsos Mori workshop for the DWP. Also present were representatives from learning disabilities charity The Rathbone Trust, The Disability Resource Centre in Yardley, DIAL in Worcestershire, brain injuries charity Headway and the Adult and Communities HIV team, who hosted the event. Every representative at the Sponsored discussion group, called By:

‘partnership working’, said their group or charity had direct experience of negative decisions on benefits that had gone to appeal. Jenny says: “We were effectively saying ‘what partnership working?’ The striking thing was the similarity in problems faced by all the groups and charities present. Rathbone, Headway and The HIV community team all expressed difficulties in obtaining benefits when people suffered from ‘hidden’ disabilities or illnesses which were poorly understood - very much in the same way that people with ME experience.

MPs NEED YOUR INPUT AN inquiry into NHS services for ME/CFS needs you! The All Party Parliamentary Group on ME wants contributions - deadline of June 30.To participate in the survey:

www.appgme.org.uk/inqu iry/inquiry.html and follow the instructions. The APPG accepts the World Health Org classification of ME as a neurological condition and wants the NHS to as well. So get writing!

Complex indeed...

“All had experienced a large number of negative decisions that went to appeal. We said benefit doctors and decision makers should have much more knowledge and experience of each of these disabilities and illnesses.” turn to page 8...

In This Issue... Group Campaigning IPOD & Library Launch Probiotic Research Members’ Articles Your Feedback

JENNY WRITES... then our job for this year’s raising ME Awareness will be done. Thank you! I am going on holiday for week on June 20-27 just in case you wonder where I’ve got to! I am really looking forward to the rest and sea air. In the last few weeks I have had mumps – which was not at all what I expected at 63! I am much better and non-infectious now, you’ll be glad to know. Enjoy your summer as much as you can – here’s hoping for some nice warm weather, not too hot though! And don’t forget to keep in touch, Hello Everyone

Inside This

ISSUE 2

Jenny Writes

4

Group News

6

In Touch

8

ME News

Love Thanks for all your phone calls and emails in the last couple of months. It’s really good to hear from you. I think we have just about covered the A-Z of ME during this time and it is very clear that, whatever ‘they’ say, things are not improving a whole lot for many of us. Definitely, the benefits are getting tougher to obtain and we still seem to have a whole raft of GPs and employers whose understanding of ME is sketchy to say the least.

“But we won’t get down hearted; we’ll keep on fighting back!” First of all we have kept our sense of humour – thanks for all the laughs on the phone and in our emails, in spite of all the difficulties and hardships you are facing. Secondly, as you can see from this newsletter, we are continuing to make our voices heard, and we are helping ourselves and each other to get through the bad times. I hope that some of you will be able to get the information leaflets (enclosed) to your GPs or local libraries, community centres etc. I know it’s not possible for everyone, but if we can reach just a few more people with ME and offer our help and support

10 Research News: Probiotics 12 DWP Assessments 13 Therapy: Acupuncture P.S. We are hoping that the patients’ questionnaires for the All Party Parliamentary Group for ME Inquiry into NHS services for ME/CFS will be available to post out in this newsletter but, if not, we will do our best to make sure you get one soon as possible. Everyone should have their say on this. Do have a look at: www.appgme.org.uk/inquiry/inquiry.html for more information on terms of reference and how to submit evidence. Note that submissions of evidence have a deadline of June 30. Yes, I know a very short time indeed for us people with ME. Don’t think we haven’t said this already but MPs are keen to get this finished in case there’s a general election soon - Jenny

14 Open Gardens invite 16 Q&A 18 Hints and Tips

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

This issue has been a real pleasure to put together. What strikes me most of all is that it’s a very active newsletter - no mean feat for people with ME. But if you flick through you’ll see the group busy everywhere...raising funds for ME Awareness on page 5, which features Jo and Tarsam putting together a brilliant campaign for MPs. Another fundraiser is planned for June, coming soon to a garden near you (page 14) The launch of a new ipod lending scheme appears on page 7 and a new library lending service on page 26. Wheelchair services will now have to recognise ME in their selection criteria - p8. We thank new member Patrick for his article on being part of a support group, page 6. Tarsam launches a regular column - we’ve literally given him the Last Word (p24) The Countess of Mar, a leading ME campaigner, agreed to an interview! - see p16 And there’s important research on the benefits of probiotics, plus news on the ME test kit that’s hit headlines recently. Keep in touch, by email below, or by text: The number (for text or voice messages only): 07906 466 682

19 Your Letters 20 The Big Read 22 Research News 23 Comedy Central

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:

24 The Last Word

[email protected]

26 Book Ends

[email protected]

ME NEWS...GROUP NEWS...ME NE Your committee: from left to right Alan, Jenny, Jo, Louise and Tarsam

GROUP EFFORT FOR ME AWARENESS

LATEST COMMITTEE MEETING REPORT Our May meeting was held at Jo’s house and attended by Jo, Louise, Jenny and Alan. Tarsam sent his apologies as he was not up to travelling on the day in question. Correspondence:Letters were sent out on behalf of the group to Sustain, Solihull Community Fund (Grassroots) and to Colin Smith of the DBC, thanking them all for their help in obtaining our Grassroots grant. The final draft of the letter to be sent to MPs for ME Awareness Week was approved. It was decided to post out letters and info packs to MPs and to email any known prospective parliamentary candidates. Coordinator’s report: The committee was updated on campaigning issues. It was decided that ME Awareness should be put on the agenda for a committee meeting well in advance of next year’s 2010 Campaign to give ourselves more time to prepare! Jenny stated she is to attend the next User Voice meeting and report back. Jenny also attended (by invitation) a DWP discussion group – see separate reports in this newsletter.. Newsletter report: All feedback on the May newsletter

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

was very positive and Louise outlined the plans for the June newsletter. It was decided to enclose group leaflets and updated doctors’ surgery notices in the June newsletter for members to distribute when and where they could. Louise has designed a range of ME group posters, but we deferred discussion of these until the next meeting, owing to shortage of time. Fundraising: Following our very successful ME Awareness coffee morning it was decided to bank any monies raised through the year and that members should decide how to use this at a group meeting towards the end of the financial year. Treasurer’s report: The money from Grassroots is now in our account and it was agreed that this money should be carefully monitored and all expenses recorded. We are now in a position to be able to provide a library service to members, and the purchase of books was discussed. The grant also allows for the purchase of Ipods which Louise volunteered to programme with relaxation tapes. It was agreed that we will initially purchase three Ipods. These

will be available, on loan from the Group, at no charge to members in the near future. Charitable Status: Alan explained the pros and cons of charitable status for our group. It was felt that expanding our fundraising efforts to become a charity was unnecessary and potentially beyond our scope, as it is people with ME who run the group. The committee decided that it was probably unsuitable for us at the moment. Democratic process: Jo discussed how we can receive feedback from members on all matters and why this should be welcomed and encouraged in any democratic group. The committee agreed that our main aim is to carry out the wishes of the members and that we should encourage as much feedback and input from members in as many ways as possible. It was suggested that thought bubbles be available at all meetings to gather members’ thoughts and wishes. Any other ways of canvassing ideas from members should be explored regularly. Our thanks go to Jo for her generous hospitality. Next meeting: July 20. Suggestions welcome..

We had a great ME awareness meeting in May. It was lovely to see 12 of our members and some of their families on what turned out to be a nice sunny May day. Jo and Louise did a stall to raise money for ME research the cakes and the jams were delicious! They raised over £50. This will be put aside until the end of the year when we shall all decide on who to donate it to at a group meeting. Jo, our Outreach member, introduced us to ‘thought

Patrick, Mary and friends chat over a cuppa...

people with ME. I was a bit nervous as I don’t really cope well with crowds but every one was really friendly and I’d encourage more people to come along. Jenny’s house is a lovely, welcoming and comfortable place.”

bubbles’ – her inspiration for ME awareness week! Everyone had a piece of paper in the shape of a thought bub- All in all, a most enjoyable ble on which they could brief- and productive meeting. ly write what they would say to their MP about ME, if they could speak to them. Even with all this going on, we still had time for a good relaxing chat. It was Louise’s first time at a meeting. She said: “It was really lovely to finally meet some other

Our appeal to MPs Jo and Tarsam compiled a letter to MPs, which was put with the thought bubbles, our May newsletter (with the West Midlands Groups enclosures), a group leaflet and a blue ribbon. In total, 22 MPs and 21 prospective parliamentary candidates across the Midlands were contacted. We had messages of support from Roger Godsiff MP and Cllr Deirdre Alden.

Contribute a thought bubble for future campaigns! Turn to page 19! Or text your burning issue to:

07906 466 682

TOUCH...IN TOUCH...IN TOUCH.. WHY SUPPORT GROUPS MATTER! We welcome new member Patrick who shares his views on the importance of being part of an ME support group.

“I moved to Birmingham from Bristol in March. I was here at university 20 years ago and I always thought of Birmingham as being flat compared to Bristol. Now I have ME, there seem to be hills everywhere. “I was relieved to see there was an ME support group in Birmingham. Some in the

JUNE: Jo Taylor Wendy Vincent Judith Jones

medical profession think patient support groups should be discouraged because they spread negative attitudes among patients. I disagree. “They provide emotional and practical support. Apart from losing one’s career, having ME also leads to loneliness since most forms of socialising involve physical or mental activity. I suppose we’re lucky to live in an age of technology when we can do so much from home on the internet. “I was involved in organizing Bristol Group. We had local subgroups and a contact list. Social groups were tried but fizzled out after a few months. We tried Needlework, Art Group (only group still going), Book group, Scrabble, Poker.

HAPPY BIRTHDA Y

AUGUST: JULY: Mary Denby Lin Cook Phil Evans Mary Donelan Mark Holland Hilary Jones Stephen Moss Hugh Jones Mary Duncan Rebecca Greenhill

“Having thought about and rejected various forms of exercise (croquet – it’s hard work retrieving the balls from the shrubbery; cycling – all those hills; swimming – too cold) now I’ve just started a tai chi class. It’s like dancing in slow motion. “I’ve registered with a GP for benefit purposes but haven’t seen him yet. In fact over the past few years I’ve only seen a doctor when they’ve called me in to the surgery. I don’t expect anything in the way of treatment or support from the NHS.” Welcome to our group Patrick and thanks for sharing your views with us. Do you have an idea for an article? Email us at:

[email protected]

MANY THANKS We are very grateful to the Inner Wheel Club of Solihull who presented us with a cheque for £30. Members elected to give the proceeds of their charity collection to Solihull and South Birmingham ME Support Group. We are extremely pleased that the club chose to recognise us and will decide at the end of the year how to use this muchappreciated boost to our funds.

IN TOUCH... IN TOUCH...IN TOUCH RELAX WITH OUR NEW IPOD LENDING SCHEME Relaxation is known to help ME sufferers manage their condition. And it is clear that many of you benefit from daily meditation practices. An Ipod is a really neat way of keeping all your relaxation techniques in one place. But perhaps you’ve not got an Ipod, or don’t want the hassle of loading one with tracks. We have used some of our Grassroots funding to enable members to enjoy daily relaxation by purchasing three Ipods to lend out to members on a monthly basis. Each Ipod will come with a selection of tracks and an instruction booklet on how to

DIARY DATES

get the most out of a daily relaxation programme. If demand proves high, we will expand the service. Each Ipod has been programmed with a relaxation library of various meditation and breathing techniques, as well as some relaxing music for you to enjoy. All you have to do to borrow an ipod is text the word ipod plus your name and address to: 07906 466 682 Or email: [email protected]

Your Ipod will be posted in a jiffy bag with stamps for returns and a reminder card for the return date to stick somewhere prominent! Please recycle the jiffy bag by using the return address label. Remember, Ipods can only be programmed at one computer, so please don’t be tempted to add anything of your own as it’ll wipe the rest of the tracks. If you’d like anything adding then instead please contact [email protected] We hope you enjoy this new service, and would love to hear your feedback!

NEW CONTACTS CARD

Open Gardens fundraiser Sundays June 21 and 28, Keeping in touch with the 2-5pm: Louise’s house, 7 Goldsmith Road, Kings Heath group has never been so easy with this handy contacts card. Birmingham B14 7EH Keep it in your purse or walJune 30: Deadline for APPG let, or stick it to the fridge! You’ll find Jenny’s main questionnaire submissions contacts plus the (see front and page 2) mobile for Next meeting: Monday July texting your feed13, 1pm-3pm at Jenny’s: 59 back, and the website and blog. Cartland Road, Stirchley Outreach B30 2SD requests should always be made NO meeting in August via Jenny. And

please use the mobile for texts only. Your contacts card also tells people you are part of our support group, in case we need to be contacted.

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

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

NHS WHEELCHAIR SERVICE U-TURN

NEW TEST FOR ME NOT YET PROVEN

NHS chiefs look set to provide power wheelchairs for Midland people with ME. Louise, our newsletter co-editor, has had a three year battle for a power chair. On applying for an NHS wheelchair in 2006, she was told she qualified only for a manual wheelchair which she could not use. “I was given no alternative, and was told I couldn’t have a power chair” she says. “I had to explain to them that it wasn’t practical to expect me or anyone with ME to use a manual chair, because I can’t self-propel. In fact what I needed was an electric outdoor chair.” It is only through enlisting the help of Birmingham Law Centre and her MP Dr Lynne Jones that Louise got the chair she needed. She said: “I see this as a victory for all, rather than a personal one. I did very little to win this battle. My solicitor Faith

Ryan fought on my behalf, and her efforts show how invaluable support from an advocate can be in tough situations.” Birmingham Wheelchair Service confirmed that a review of the issues identified had taken place and Divisional Director Marie Ward said: “ Work is underway for the service specification for the overall Wheelchair Service.” In a recent letter to Louise’s MP from Moira Dumma, chief executive of South Bham PCT, it was confirmed that ‘the needs of people with ME and CFS were not recognised in the existing contractual arrangements and that the access criteria for the wheelchair service would be discussed with commissioners

The slowest wheelchair ever?

when the contract was due for review and renewal. "...Access to wheelchair services for people with ME/CFS has been discussed by the wheelchair service and commissioners and the recently appointed Director for the Specialist Services Division (which includes the wheelchair services) undertook a review of the issues identified and presented the findings to commissioners on May 13."

BENEFITS EXPERTS NEEDED IN REGIONS SAY GROUPS from front...

It was suggested that one ‘expert’ for each illness should be available in every benefits region. Everyone agreed that the communications with the Pension Disability & Carers Service are poor and that the service is too centralised.

Jenny says: “It was felt there was no one to access directly about local issues. New information or changes in benefit rules usually have to be found by the groups or charities themselves.” The outreach service run by Colin Smith of the Disability

Benefits Centre was the only partnership working anyone mentioned. As a result Ipsos have been asked to continue this debate on line. Jenny can be emailed with your contributions: [email protected]

A NEW home urine test kit purporting to diagnose ME has been greeted with caution by experts. The test developed by Belgian scientists led by Prof Kenny De Meirlier is based on the hypothesis that people with ME/CFS are producing excessive amounts of a chemical called hydrogen sulphide (H2S) and that this abnormality can be measured by a specific urine test (that measures an H2S metabolite/byproduct).The imbalance is claimed to be due to overgrowth of certain lactate-producing bacteria in the gut

Dr Charles Shepherd urges caution over home test kit for ME

have looked at the scientific information upon which this test is based. While it’s an interesting hypothesis, the test itself cannot yet be regarded as a scientifically proven diagnostic test for ME/CFS. "Until we have further results from several good quality independent studies, we can’t yet say a significant factor in the causation of ME/CFS has been discovered and that a simple urine test is now available for diagnosing ME/CFS.”

coupled with the presence of metal intoxication in the body. It is also claimed that the problem in the gut can be successfully treated through changes in diet, probiotics and antibiotics. The urine home test kit is on sale for £13. It has to be ordered from abroad and is not Have you used the test? Text us: available on the NHS. 07906 466 682 Dr Charles Shepherd, Medical Or email us: Adviser to the MEA says:"I [email protected]

BE HEARD...USE YOUR VOICE! PATIENTS led the way at the latest User Voice meeting with complaints about waiting times and communication problems with the local CFS/ME NHS clinic. The clinic said it is seeing an extra four patients a week under their new priority system – brought in due to a near breach of the rules on waiting lists. The service has also expanded into Solihull. Jenny represented SSB at the meeting on May 27: “The majority of the comments were about waiting times, lack of communication and such irritations as lost records and delayed blood tests, all of which contribute

to rising stress levels and falling energy levels.” Sue Clarke, Nurse Therapist from the Birmingham NHS clinic explained they now have a triage system in place for prioritising patients at the Barberry Centre, and run self management courses in Solihull which include pacing, lifestyle, and a small amount of CBT, in accordance with the NICE guidelines. Jenny adds: “Sue mentioned they are looking for other venues for these courses particularly venues with ground floor access, good bus routes, parking and, if possible, a coffee bar on site.” Suggestions welcome. Jenny says: “I was pleased to note

that SSB attendance at User Voice was welcomed by their new development worker Stuart who asked for some of our leaflets for distribution at future meetings.” Anyone who is interested in attending future User Voice meetings (Uffculme Centre, Kings Heath, last Thursday of the month, 11am-1pm) can contact Stuart on: 0121 301 2009 or email: [email protected]

User Voice means people with ME can be involved in how the local NHS clinic is run. Service users at meetings can contribute without giving their name. The clinic can be contacted on: 0121 301 2290.

RESEARCH NEWS

RESEARCH NEWS

CAN FRIENDLY BACTERIA Many people with ME suffer gastrointestinal disturbance and low mood. But now there’s a gut feeling on friendly bacteria... Taking a daily probiotic supplement improves anxiety in patients with chronic fatigue syndrome, new Canadian research suggests. The researchers, led by A. Venket Rao of the University of Toronto, found that giving patients with chronic fatigue syndrome (CFS) a probiotic for two months not only boosted so-called "good" bacteria in their stomachs, it also led to a significant decrease in their anxiety symptoms. A probiotic is a dietary supplement, most often in pill or powder form, that contains live bacteria such as Lactobacillus or Bifidobacteria. These bacteria help maintain gut flora, microbes in the stomach that perform a variety of functions, including aiding digestion, boosting the immune system and warding off harmful bacteria. "We were quite excited with the fact that these were positive results and we felt that probiotics truly have a role to play in the management of neurophysiological disorders such as anxiety, such as depression and other symptoms

associated with that," Rao said. "Rather than going into medications, which may result in side effects, it's a safe, it's a very easy way to manage problems such as that." The findings are published in the journal BMC Gut Pathogens. CFS patients often complain of gastrointestinal problems and many are diagnosed with digestive disorders such as irritable bowel syndrome. Tests show that they often have lower levels of so-called "good" bacteria in their stomachs, which can regulate digestive activity. The researchers explored links between gut pathogens and emotion and anxiety in the absence of an immune response and early findings suggest that bacteria levels may influence behaviour related to anxiety and depression. Researchers believe that probiotics "crowd out" the more toxic stomach bacteria that are linked to an increase in depression and other mood disorders. For this study, the team gave 39 CFS patients either three

www.timesonline.co.uk

Look for the right dose on the bottle

doses of Lactobacillus casei Shirota a day after meals, or a placebo, for two months. They found that 73 per cent of subjects taking the probiotic experienced an increase in levels of Lactobacillus and Bifidobacteria in the gut, which corresponded with a significant decrease in anxiety symptoms. In the placebo group, only 37.5 per cent showed an increase in Bifidobacteria, while only 43.8 per cent showed an increase in Lactobacillus bacteria. The researchers found no statistically significant change in anxiety symptoms among this group.

BANISH THE BLUES? provement in their digestion, experiencing less bloating and gas and a reduction in inflammation. The findings are "huge," Bested said. "(Subjects) felt less anxious, they felt calmer, they felt better able to cope with their illness, they were sleeping better, had less heart palpitations and less symptoms of anxiety," she said. www.media.skinmdnatural.com Rao explained that the bacteria produce According to Bested, Bifido- good bacteria appears to increase "compounds that get to the levels of tryptophan in the brain and help the brain to brain, a chemical that "helps manage problems associated people feel better." with behavioural and mood Patients taking the probiotic problems, such as anxiety and also showed a marked im- depression." Probiotic drinks and supplements are better than yoghurts as they contain more friendly bacteria. But beware, some probiotic drinks are full of sugar. More than 10g per 100g is considered high, so if you're diabetic or watching your sugar intake, it's best to opt for a pill.

YOUR FINDINGS Are you interested in taking a probiotic? We are keen to hear about what products you find and how you get on with them. Jenny can be contacted for more guidance on which products can help, and the staff at health food stores will be happy to advise about the various strains. Remember, if you have IBS or diarrhoea, seek medical advice before taking any probiotic product. Let us know how you get on:

Text: 07906 466 682

Also check the label for prebiotics (edible fibres that help pre-existing healthy gut flora to flourish); you'll need at least 5g prebiotics a day for a real effect.

utable probiotics will list the strain and number of live microorganisms on the label - most of the drinks available in the supermarket will have around this amount.

Prebiotics will be listed on the label as inulin or fructo-oligosaccharides. If you're prone to diarrhoea or bloating, don't take Look for products containing prebiotic-laden formulations both bifidobacteria and lactoba- without professional advice. cilli. They don't play vastly different roles, but taken together Make sure the probiotic dose is they promise a better bacterial high enough; you need at least ten hit. million live micro-organisms. Rep-

Always consume refrigerated drinks before the expiry date as they're likely to become ineffective. You need to take your probiotics every day to see the benefit - it's no good leaving days in between having them, whether you're taking them short term or for longer.

HELP! I’VE GOT A BENEFITS MEDICAL! At least every three years all people on disability benefits are required to send in form IB50, and attend a medical (if they can travel). Here’s how to cope should you be called to one: So your GP has sent off the relevant forms...and now you face a medical. What next?

the Doctor and the claimant say and do. Especially note any aggressive attitude or manner adopted by the Doctor. Note the exact words spoken.

Intervene and ask for the examination to be halted if the claimant also a watch. Take your medicines, becomes unwell or distressed. The and any aids you use, such as a claimant should have a break until walking stick or crutches. they feel well enough to continue.

You can claim travel expenses for First, try discussing the reality of going to the examination - but if your illness and the limitations you you need to take a taxi you must contact the DWP beforehand. face with someone who knows both the illness and yourself well. At the examination... The reality of your illness is what You should be aware that the exmust be presented to the doctor amination begins on entry to the and to the DWP. examination centre and does not You may have been ill for so long end until you leave the centre. An you’ve forgotten how it affects evaluation of your medical condiyour daily life. tion does not only take place when you are in front of the examining Always have someone accompany you. This is your doctor, but also potentially on your way into the building, in the waitright. ing room, and on your way out. You are legally required to attend a The Doctor should: medical, and the information obtained is used to decide your enti- Spend some time explaining the purpose of the examination. tlement - so make sure your legal rights are protected. ASK if you are willing to be examIf the examination date is not suit- ined. able get it changed. If you are un- ASK you and give you time to exable to travel ask for a home visit plain YOUR OWN VIEW of how instead. If you change the arrange- you are affected by your condition. ments over the phone write to conNOT attempt to 'manipulate' parts firm the changes. You have the right to be seen by a Doctor of the of your body. same sex. You should:

Object to and stop any attempt by the Doctor to have the claimant do exercises which could injure or distress them. You should have the examination stopped if the claimant is becoming ill or distressed for any reason. If the claimant is not fit to continue then the examination should be postponed until another day.

Meet the accompanying person beforehand to discuss what's going to happen. Before the examination you should be clear it can be halted to allow you to go to the toilet, have a glass of water, take a pill, or if you feel faint or ill. The examination should only proceed if you feel happy to continue.

Make sure the Doctor realises the full extent of your illness/ disability, including any other conditions/ illnesses you may have.

Refuse to do anything that hurts or distresses you.

Write down the name of the Doctor, the place of examination, the start and finish times and any breaks. Take notes on everything

If the Doctor did anything wrong, then write a letter of complaint to the DSS immediately - don't wait for the decision to come through. The letter should be signed by both the claimant and the accompanying person. More info on making a complaint is in the Disability Rights Handbook which you can borrow from our library (p26).

The person accompanying you should take a pen and paper and

Describe how you feel on a "bad day", rather than on a "good day".

The person accompanying you should:

If the claimant's distress is due to mistreatment by the doctor, stop the interview, then say that you will be making a complaint with a request for an examination at a future date with a different doctor. At the end of the examination ask the Doctor to read back their notes.If the Doctor refuses, then note that and what reason he/she gives. If there seem to be any inaccuracies in the Doctor's notes, check with the claimant, then if necessary ask the Doctor to change their notes. If they refuse then make a note of that, writing down exactly what they said.

Afterwards...

Information originally published by the Edinburgh Coalition Against Poverty

THERAPY UNCOVERED PINPOINTING ME RELIEF

Acupuncture has been used successfully to alleviate ME, CFS and fibromyalgia. It works by literally pinpointing meridians, or acupuncture points and aims to rebalance energies in the 12 main channels connected with organs in the body. The benefits to those with fibromyalgia have been confirmed in a large study - and there are many parallels in ME/CFS. Acupuncture can help restore energy levels and alleviate pain and exhaustion. It does not aim to be a cure, but can help with symptom management. But many people with ME are on reduced incomes and are put off by the cost of engaging in alternative therapies. The Natural Health Centre in Kings Norton has come up with a solution. By seeing several patients at once in a large room (partitioned to provide privacy) the clinic hopes to make acupuncture an affordable treatment option. Acupuncturist Annie Pottinger says: “The aim of the multibed clinic is to make acupuncture more accessible.” The first treatment is on a one to one basis due to the need for privacy regarding medical history, and costs £25 but the follow ups are in a larger room with 2 or 3 beds and cost £15. “The appointments are staggered to allow time to discuss how treatment is progressing, and then needling is done. If needles are left in them we might go and treat another patient and then come back. “Screens are put up between the couches for modesty, but otherwise conversations can be overheard, so I never tend to discuss personal issues unless raised by the patient. Both Annie and colleague Julie Reynolds are five element acupuncturists. Annie explains:

“This is the oldest style of acupuncture and basically categorises people into one of five elements - fire, earth, metal, water and wood. These elements exist in nature as one of the five seasons summer, late-summer, autumn, winter and spring and each element has it's own colour, sound odour and emotion. “ Annie and Julie look to see which element dominates within a person. “As acupuncturists we diagnose the one crying out for help. When we treat this element, via its associated meridians, then the body comes back into balance and symptoms ease or disappear. The benefit of group treatment is primarily the cost, but also tin creating a feeling of community and friendship:“If the same people return at the same times with similar ailments then they might provide mutual support,” Annie adds. Acupuncture can help with symptoms found in ME including:

muscle stiffness pain insomnia temperature control anxiety If you are interested in attending a session with another group member, contact Jenny on 0121 689 0777 to see who else is interested. The Natural Health Centre, 86 The Green, Kings Norton, B38 8RS holds multibed clinics on a Tuesday morning and early afternoon. Call 0121 459 3535 to discuss further. This newsletter does not seek to endorse any one therapy over another, but aims to provide a variety of articles on therapies for members information. SSB is not responsible for any treatments subsequently taken. Always seek medical advice before trying new therapies.

INTO THE GARDEN THIS SUMMER w

You are cordially invited to

w

Louise’s Open Garden Days 7 Goldsmith Road B14 7EH

As Moseley throws open its doors for Open Gardens weekend, Louise wonders how accessible it all is...and finds a neat solution The open gardens scheme appeals to me on many levels. As a somewhat inactive gardener I enjoy seeing other people’s creativity. And as a person with ME I cannot think of a nicer way to spend a couple of hours than sitting in the quiet confines of a green idyll that’s just minutes down the road from me. Plus I top up my vitamin D levels by venturing outside.

But there is a snag. My son and I have visited Moseley’s Open Gardens since they started a couple of years ago and to be honest, not many of them are very accessible. Both years I’ve been forced to try and do without a wheelchair and get between houses on foot. Last year I ended up getting taxis between venues that were just a stone’s throw away from each other. There are of course many plus points to planning a quiet afternoon visiting local gardens. There is invariably tea and cake on offer. Many have extensive patios with plenty of seating or benches dotted around.

So if you are tired before you even start, you can get your breath and w just admire the view. And take your camera! This year, I’m planning on doing it differently. I’ll be visiting Moseley’s gardens in my power chair so at least I get to move around a bit easier. And I’ve also decided to open my own garden on two Sundays this June because I want to offer people with ME an alternative to struggling with uneven paths, steps galore and narrow entrances. My garden is a traditional long strip at the back of my terraced house. It is 100 per cent accessible as it was designed with my wheelchair in mind. I store it outside as it won’t go in the house. The only step is a low one leading to decking at the top of the garden. The path I had put in is wide enough to

Sundays June 21 and 28 2pm - 5pm Entry £2

take a wheelchair all All proceeds go to the group Refreshments will be served w the way to the top, where there is a space to sit and rest by the pond. There’s a lawn, my greenhouse, flowers and vegetables. I’m planning on doing a small stall to raise money for the group. So do join me in June at one of my own Open Garden days. Entrance via side gate!

w I’ll still be visiting Moseley gardens myself and recommend you give it a try too. Having looked at the programe for this year, I think the Moseley Triangle tour on Saturday June 20 is your best bet. The triangle offers a series of accessible (ish) gardens, that can be done in a couple of hours. For complete listings: see www.moseleyinbloom.org.uk

MOSELEY TRIANGLE Saturday June 20

Traditional allotments in a beautiful old setting, recently sadly downsized but still a Tennis Club, Billesley Lane gem and today holding their The newly planted orchard , 2009 Open Day now in its second year, is a tranquil area behind the activi- 77 Cambridge Road A front ty on the courts. Rescued from garden only. Another example a seething wilderness the pos- of how to get the best of comsibilities are there for every bining cars and garden and planting to survive a very organic fruit eater! windy corner. 49 Greenhill Road A verdant, sculptural garden 15 Thornley Close (off Camwith a continental feel. Ele- bridge Rd) gant mature shrubs and trees, A small garden, modernistic in of varying height, colour and design. Now maturing into a texture give way to a meadow very elegant and beautiful enwith summer house and herb vironment. (Access to patio level, series of steps to main garden. garden) - Please park on Cambridge Road. 51 Greenhill Road Long garden of rooms with a real country feel evocative of 5 Cambridge Road the 1930s. Traditional lawned A large garden with wide area with mature borders, veg- lawns, mature borders but lots etable garden and wildflower of new planting to enjoy. A rockery made from reclaimed meadow with orchard. stone. Greenhouse, fruit and veg areas and a Boules pit. Billesley Lane Allotments

Q & A...

Q & A... IT’S TIME TO....

WE wanted to know what drives one of the leading ME campaigners in the country to keep fighting the fight. And it seems, fighting is not always the answer. The Countess of Mar, a cross-bench peer in the House of Lords, is seeking to buid bridges...Louise interviews her by email: Why did you set up Forward-ME? I set up Forward-ME after I had attended two All Party Parliamentary Group on ME meetings. One was beset with arguments. The other was calmer but did not get across the variety of views. I was extremely sorry that there were so few MP’s present to hear them. This set me thinking…if a small group who represent a cross section of the ME community could come together with a united front in order to achieve recognition for the illness across government, medicine, research and social services regardless of differences of opinion between some of the members, then it was worth a try. What is your own experience of ME? I have not had ME, but I was severely poisoned by organophosphate sheep dips in 1989,

had no diagnosis until 1992 and have been through pretty well every aspect of the disbelief exhibited by the ‘establishment’. I have been extremely fortunate in that I have, at last, found sympathetic medical practitioners who seem to find me credible and am able to have a fairly reasonable quality of life, though much of the damage done by the OP’s is permanent. Since I started to work with people with conditions like OP poisoning, Gulf War Illness, ME and fibromyalgia I have met and corresponded with many people with ME and their carers. Additionally, I hate injustice and I firmly believe that too many of the people with ME have had a raw deal from society. I have been put into a position where I am generally respected and, occasionally, listened to. Perhaps the OP poisoning was sent to me for a purpose! How seriously is ME taken in Parliament? Ministers always state they recognise that ME is a serious neurological condition but there is not enough pressure put upon them to ‘put their money where their mouths are’. I am the only person in

MOVE people do not have the time to read reams of detail. Again, I appreciate the fact that it is difficult for people with ME to marshal their thoughts. Do not be afraid to ask for help but do not give too many personal details. Offer constructive proposals based on your own experience. Enlist the help of GPs, MPs and others whose voice might be effective. Try to make contacts personal as round robin campaigns tend to be filed in the waste bin.

The Countess of Mar has been a cross-bench peer since 1975 and regularly raises ME issues in the House of Lords

the House of Lords who raises questions on the subject at every opportunity. The difficulty is that no politician or doctor likes a problem for which there is no immediate solution apparent and we must all acknowledge that ME is not a simple disease! Do you believe there will actually be any revisions in 2010 to the NICE guidelines? I cannot speak for NICE. They are well aware that there are many problems with the guidelines, but they have to have professional people to revisit them and, after the controversies over the original group overseeing the guidelines, it might not be easy to recruit new members.

NEWS IN BRIEF...

How can ME groups and charities help to ensure that there are revisions? I realise that the illness creates a lot of anger and distress in itself, but no one should be railed at, slandered and insulted. I have endured this myself and, because of my own experience have tried to put it to one side. But there are times when I could cast ME to the winds on the basis that I do not have to put up with such treatment. It must be understood that those who are not so close to the subject may well walk away from the hassle, despite their initial sympathy. Your case needs to be presented clearly, calmly, courteously and concisely (always remember the 4Cs). Busy

Do you think more could be done to raise awareness? There’s more of a problem with the belief that it is a ‘real’ illness. More articles in the press and, perhaps, on radio, that concentrate on the scientific facts surrounding the illness rather than on case histories, moving as they are, would be helpful. Talking about ME in an unemotional but positive manner might also work. Listeners are generally more receptive to positive, constructive discussion than they are to the ‘poor me’ complaining. “It took 100 years to persuade the establishment that asbestos was not safe. I hope it won’t take so long to prove the ME case scientifically.”

Test for CFS? Differences in gene expression have been found in the immune cells of people with CFS, a discovery that could lead to a blood test for the disorder and perhaps even to drugs for treating it. Jonathan Kerr's team compared levels of gene expression in the white blood cells of 25 healthy individuals with those in 25 patients diagnosed as having CFS. The researchers found differences in 35 of the 9522 genes they analysed using DNA chip technology. Just Four Quid Two charities are launching a recession-busting campaign to raise £1 million for biomedical research into ME/CFS. ME Research UK and the ME Association have started the ‘Just Four Quid’ campaign which encourages donors to take advantage of weekly money-saving tips, and then give some of the money they save to the appeal. The campaign runs for a year and can be found at www.justfourquid.com Think Tank Ten leading scientists in Europe have formed a Think Tank for ME. They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives. They meet on June 13. ME Talks The Royal Society of Medicine is taking bookings for the latest in its series of Medicine and ME meetings on "ME and CFS – Hearing the patient's voice" which will be held at 1 Wimpole Street, London W1G OAE on Sat, July 11.

HINTS AND TIPS... What works for you? How do you cope with daily living with ME? From responses to our cooking and exercise articles to many individual observations on ME, our new Hints & Tips page sees members offer advice to other members. After all, we are the experts! Quick, nutritious meal...Put 2 slices of bread in toaster. Open a can of chopped toms, throw half in a dish and microwave about 1 min. Put butter and cheese between slices of toast to melt, then pour the toms on top, or, as I do, put sandwich in dish with the toms and eat with a spoon. Love, Wendy I do a big cook where I boil lentils and add spices to make a load of soup, and freeze. I make enough for five to six weeks. Although it takes a lot of energy (it’s a big energy day) it means that I can defrost a container when I run out and just heat up with an already cooked wholegrain (eg rice/buckwheat) and some protein. I try to prepare the containers the night before but have to leave clearing/washing up til another day. Text

If ever I work again I will insist on working from home and for myself as a freelance at my own pace doing stuff I love and which I have skills in. Rain Re exercise with M.E...I have come to the conclusion that for me the whole exercise thing is a bit of a red herring. When I was in an upwards spiral then gentle exercise seemed to help me improve faster. When I was in a downwards spiral it seemed to make me worse. Generally I have found that slowly increasing my physical activity helps me to a certain point, then I hit a ceiling that I can’t pass. I expect this is because lack of fitness is not the underlying problem. Elaine

LETTERS...TEXTS...EMAILS... we’d like to know if your council provides it too. x Jo Epsom salts in the bath can address an underlying magnesium deficiency. Since I started using them I have found that pain levels have reduced, and I am getting off to sleep a little earlier. Epsom salts have been proven in studies to help people with a multitude of conditions, including ME and autism. Plus, the bath water can be stored in a tub and recycled around the garden. Plants love magnesium too! Louise Noise reducing headphones, like the ones used by businessmen on longhaul transatlantic flights are great for cutting out environmental noise if you are sensitive to this. They work by producing a low level white noise, so that the music you are listening to is clearer. They can also be used independently of music for some peace and quiet!

If u r confined to one room, old-style kitchen trolley with wheels is fab. Have kettle and tea-making on tray on top, food items, soups etc on middle shelf, spoons n snacks in drawer, and microwave on YOUR HINTS & TIPS bottom shelf. If you need a carer 2 help then everything is Have you discovered somein one place! thing that makes daily life Wendy with ME a bit more bearable? Library services at home 0121 464 1118 do a monthly delivery of books, magazines etc. I couldn’t survive without it. This is a Birmingham service,

It may be a handy way to save energy around the house, a great new device or things to avoid! Suggestions welcome share the knowledge! Text:

07906 466 682

We’ve had so many emails, texts and comments! Thank you so much for your thoughts and do keep them coming! Here’s a selection:

was only one side given in the piece on the Perrin technique. I’d like to see more tips and advice for day-to-day living with ME. Member, by feedback form

tips and research. My favourite part was the feature on BRAME (March issue) Feedback Form I got some friendship cards but who do I know who to post them to? Wasn’t there supposed to be members’ details attached? Text Ed - we are looking into providing contact lists for all members, which needs permission from all members in the group. We may ask for this when renewing membership.

Good easy to read new format. More research please. Many thanx for great new Feedback form mag. I love the text idea cuz I find it hard to phone or get to “I like the fact that the whole thing is in type I can read, and a computer. that text is broken up so Text there’s not pages and pages of I think that contact lists 4 close print. There’s also a lot members 2 interact is a great of variety, and not too many idea, especially 4 people who articles telling me stuff I alLetters can be emailed to don’t have a computer (they ready know.” [email protected] cost!) and since u can’t always Text [email protected] Or text us! get 2 meetings so talking 2 people by phone for example I would like to see more info 07906 466 682 on helpful therapies, health wud b good. Text Thanks very much for featuring Lost Voices in your Spring Newsletter, it's much appreciated. Kathleen McCall Invest in ME Just a couple of lines to say how impressed I am with your new look Newsletter. Great items, good layout, most impressive ! ( and I got a brief mention ). Colin Smith MBE Outreach Manager Midlands Disability Benefits Centre My favourite part was information on research, but there

Send us a thought bubble! Post to:

Jenny Griffin 59 Cartland Road Stirchley Birmingham B30 2SD

...BIG READ...THE BIG READ...

MASS

The 20th century saw a rash of epidemics of a viral illness, and they happened all over the world... Infectious venulitis, Epstein Barr virus, even mass hysteria...all of these names have been ascribed to what was later understood to be ME. There are similarities in many of the well documented outbreaks of the 20th century. 1934 Los Angeles County Hospital A mystery virus hits in the middle of a poliomyelitis epidemic. It was later discovered that those who had contracted the ‘new disease’ were resistant to polio.

doctors and ancillary staff. In 1956, Dr Melvin Ramsay of the Infectious Diseases Department names a new illness...Benign Myalgic Encephalomyelitis. ME was born. There are further UK outbreaks in the 50s.

1975 Mercy St Juan Hospital, Sacramento California Mass outbreak of a ‘viral disease’. Dr Eric Rhyll calls it Infectious Venulitis (IVN), and has followed patients ever since. Some remain affected to this day. He recognises 1948 Iceland An outbreak of IVN as a variant of ME/CFS. epidemic neuromyesthenia protects Icelanders from a lat- 1984 New Zealand Both the er 1950s polio outbreak, North and South Islands are prompting the theory that the affected by a mass outbreak earlier virus was a separate of Tapanui Flu, or ME. enterovirus. 1985 North Lake Tahoe A 1950s Adelaide, Australia strange viral illness grips InResearchers inject monkeys cline Village. Researchers with material from epidemic call it chronic EB virus, but patients and find vascular eventually readamage... lise it has nothing to do with 1950s-60s America Three Epstein Barr. It separate outbreaks of epidem- is CFS or ME ic phlebodymia (painful veins) are documented Quite often these outbreaks divid1955 Royal Free Hospital ed doctors. In A serious outbreak of ‘flu’ is fact, misunderrecorded affecting 197 nurses, standings from

50 years ago inform opinion to this day. Psychologists McEvedy and Beard branded the Royal Free outbreak ‘mass hysteria’. Then for a time, things improved. The 1970s went on to be ‘halcyon years for ME research’ recalls Dr E Dowsett in a 2002 presentation on Chronic Neurological Disease. Top doctors worldwide examined the outbreaks and established that alongside polio there had been more than 60 outbreaks of atypical non-paralytic polio, viruses that were able to survive persistently in the body. Meanwhile, during Lake Tahoe’s epidemic insurers started to become twitchy about ME. Inundated with more claims than the AIDS epidemic, they sent claimants via doctors who held the view that ME was a psychiatric illness making it harder to claim.

...BIG READ...THE BIG READ...

OUTBREAK! Dr Melvin Ramsay remains the Godfather of ME. The man who put ME on the map is also remembered as the man who perhaps best understood his patients, and never stopped listening to them. He refuted the conclusions of the psychologists McEvedy and Beard, and directly tackled their ‘mass Nurses at the Royal Free became too ill to work hysteria’ claim in a letter citing the physical feOnly in 2002 was there any ver, swollen glands and palconfirmation that ME is sies that occurred in a striking ‘indeed a longterm seriously number of cases. Sadly he disabling illness.’ blamed himself for the ensu-

ing derision with which ME was met. But it was fuelled as much by the interests of insurance companies in the States and other misunderstandings of the illness globally. The worldwide epidemics have at least contributed to advances in research into the behaviour of viruses. It is hoped that one day there will be a vaccination for epidemics and new viral diagnostic tests. And, of course, we hope these advances will help the rest of us, the individuals who suffer with ME. Until then, campaigning for the respect and understanding displayed by Dr Ramsay is vital.

the dining room seemed empty, but we were kept so busy with work we were too tired to ask questions. It was only when they put the whole hospital in quarantine, and we were shut in, that we knew it was something different. “As at one point so many staff were collapsing in the hospital, with sometimes nobody finding them for a while, it was decided to close the nurses home and we had to sleep in the empty wards. I was in with some young nurses who were finding it exciting, while I was trying to revise for my final exams and so

wasn't very pleased. Mind you, when I started having problems, those nurses probably stopped me being much worse as I then found out several were working on the sick wards and knew the

Pauline Ovenden, Honorary President of Herefordshire ME Support Group was a nurse at the Royal Free during the 1955 outbreak:

“

I was in accident and emergency the morning staff started falling like nine-pins in our department, and many phone calls came from outside the hospital for staff members (cleaners, porters etc) who had family collapsing at home too. “We all thought it was flu for days. I don't think I realised how serious it was until at mealtimes A typical nurses’ rest room of the 50s

early symptoms.” Pauline says Dr Ramsay spent the rest of his professional life trying to undo the damage done by the psychologists who dubbed the outbreak mass hysteria. We’d like to thank Pauline once again for giving us this rare insight into the Royal Free epidemic.

RESEARCH NEWS

COMEDY CENTRAL

WHY WE CAN’T STAND QUEUES! Researchers in Newcastle are to look at why people with ME have problems standing. Many people report dizziness, visual disturbance, nausea and fatigue. The two year study backed by ME Research UK will explore problems with the autonomic nervous system in people with ME/CFS. The autonomic nervous system controls cardiovascular, digestive and respiratory functions, and has a range of other important roles. When it goes wrong, the consequences can be severe. Since one of the key difficulties that ME/CFS patients face is standing, most especially standing still, without experiencing symptoms such as dizziness, altered vision, nausea, fatigue etc., the possibility exists that there could be a problem with the autonomic nervous system. The study marks the third phase of an ongoing study by Prof. Julia Newton of the School of Clinical Medical Sciences, University of Newcastle. In 2007 her team examined a large group of patients using a battery of tests of heart rate and blood pressure. The Cardiovascular Laboratory in which the tests were done is one of the largest autonomic testing labs in Europe, with all

SALT Same As Last Time

Stand in line? Not likely!

the necessary equipment and expertise for comprehensive autonomic testing. Her results, published in the Quarterly Journal of Medicine (August 2007), showed that in three-quarters of the patients, autonomic dysfunction was present, a very unexpected finding. Furthermore, in a separate study, Prof. Newton has reported that a simple-tomeasure assessment of the heart rate response to standing was abnormal in a significant proportion of patients. Funding has now been provided for the next phase of the work: a two-year project exploring some of the mechanisms behind these autonomic problems in ME/CFS patients. The investigation has two broad aims. The first is to examine fully the people attending the Newcastle CFS/ME Clinical Service,

Picture BBC news

and develop a database of patients who can be followed up over the long term. The second is to begin to answer the question, “Does the autonomic dysfunction in people with ME/CFS arise in association with abnormalities of brain, muscle and liver, as has already been shown in other patients with other illnesses?” For this, a series of linked studies will examine muscle bioenergetics (using state of the art MRI techniques), structural and functional brain abnormalities (also using MRI), and structural and functional liver abnormalities (using fibrosis quantification and percentage fat assessment by MRI). Funding for this study has been provided by the John Richardson Research Group, the Irish ME Trust and ME Research UK.

What do doctors write about us in our medical notes? Perhaps we’d rather not know. They certainly don’t want us to judging from the following ‘codes’... GLM Good LookABITHAD Another Blithering Idiot ing Mum Thinks He's A Doctor

SNEFS SubNormal, Even For Suffolk

TEETH Tried Everything Else; Try Homeopathy

LOLINAD FF

Little Old Lady In No TMB Too Many Birthdays Acute Distress

Frequent Flyer: Returns to a medical provider for everything MFC Measure For Coffin

FLD Funny Looking Dad

NFS

TTGA

O2T

NOW IT’S YOUR TURN!

Oxygen Thief

FOS

PIP

Full Of ... Stool

Pyjama Induced Paralysis

GFPO Good For Parts Only

Take Out Back And Shoot

Normal For Swindon

FLK Funny Looking Kid

TOBAS

PITA Pain In The A**

Told To Go Away

Okay...so what would you write as an abbreviation summing up your GP or consultant? TCYF perhaps...Totally Clueless You’re Fired! Send us your funnies and we’ll print some next issue:

07906 466 682

..LAST WORD...LAST WORD..LA My old friend Zahoor had come round after many years – “so what’s it like, having severe ME?” “Well, old pal” I sighed, “how can I explain adequately? Honestly, I find there is not the vocabulary for it yet. It’s like trying to describe a 27th letter. Every time I try to explain severe ME I end up explaining something else. A writer called Borges once said there is always a gap between what we experience feeling and the language we have at our disposal to express it. Well, severe ME certainly falls into that gap. It’s a slow, relentless torture. As you know, every good torturer seeks to reduce the victim entirely to the body and destroy all spirit and will. That’s what severe ME does. It’s a living humiliation. Picture it with me: “Severe ME comrades prostrate in curtained rooms that feel like tombs. Immobile. Self-quarantined. Pleading silently: ‘How long?’ ‘How long?’ Wracked in pain on lumpy mattress, dank perfumed. “So many of them barely find the strength to lift their heads from pillows. Reduced to a pulverising pulse of fevered fatigue. So far from distant lands of narrative or meaning. Hostage to their bowels; gritting furry teeth as they lie amongst fallen hair. In spring, cursing lawnmowers who cut across their flayed nerves like razor blades dipped in acid. Winter is like living in a fridge with the light turned off way past their sell-by date. Whispering what Najinsky dared to utter: ‘I have suffered more than Christ.’ “There’s dust and smells and hairs and mess. Aches and pains and strains and stress. Plagued by the housing, bills and the DSS. Condemned to the itinerancy of waiting rooms for illiterate medical tests. Misunderstood in brute neglect.

By Tarsam Singh

“After all this, indeed, what forgiveness? What faith? What god? What sense of moral order? Where then Reason with its cloak of neon progress? “Let us go back. Way back. Some time before when water was taken directly from the well. When profit was still spelled prophet. When the many had more need for manna than money, and sumptuousness and bounty first sought location in spirit. “Let us take up with the old carpenter who walks and walks, weeping along his way. His only son had left home at an early age and not returned. The old man searches for him near and far, from village to village, over sand and stone, walking and waiting to find. Patiently he goes. Sometimes with tears so much in his eyes that they blur his view but do not fade his prayers. “Readily he finds shelter amongst people who can see he suffers and understand that to suffer is to exist near god. Usually whilst serving food, they ask after his purpose and he relates the tale of his absent son. ‘You see, he was made not begotten. Yet he was mine and I loved him such.’ And they are touched and wish him well and afterwards remember him fondly. And on he walks. Always hopeful, with the same prayer turned brittle upon his lips. Walking, weeping. Weeping, walking. Thus he proceeds through seconds and years. So he dies. “Let us now join Jesus in heaven as he attends those newly arrived with

his presence. All before him so sad and lonely, for as we all know, a broken heart is the passport to heaven and uncensored yearning citizenship to the immortals. “Seated in a corner, he spies an old man copiously weeping, bent over in such deranged lament that Jesus makes for him forthwith. His palm reaches out to cover the bowed, balding, sobbing crown. ‘Why do you cry so, old man? Don’t you know you are now in a better place where reward is free and beauty unbesmirched by measure?’ “Through films of tears the old man begins: “Well, I am an old carpenter whose son left home at an early age never to return. He was made not begotten and I loved him so. I went out to find him, spent my days looking and now I’m dead and I don’t know how I’ll ever see him again.” Jesus opens his arms, beaming, and says: ‘Father!’ and the old man slowly raises his head. So slow as if he dare not believe it and through swollen tears cries out: ‘Pinnochio!’” “That was unexpected” said Zahoor. “The unexpected – that’s severe ME.” I returned. “We expected a life of justice, productivity, getting what you give, logic, meaning. What we got instead is pain, misery, isolation, an irredeemably irrational illness, despair.” “You have to keep the faith, T,” urged Zahoor. “Be gentle with yourself. There is meaning in your condition. Those with the least motivation to live most affirm life by their continued existence. Remember your man Jesus: the last shall be first. It’s the severe MEer’s who exemplify and amplify the human spirit by courageously surviving. The Lifeforce begins with you. It’s those in the darkest part of night who push up the dawn every day for the rest of us.”

..RESOURCES...HELP...ADVICE.. BIRMINGHAM CENTRE FOR INCLUSIVE LIVING

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 people. It aims to work in partnership with issues including: disabled people across Birmingham to Welfare Benefits support and develop the aspirations of Employment individual disabled people (partners) towards independent and inclusive living. Education 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

Optician Visits at Home:

Birmingham Law Centre: Excellent advocacy work across health, social care and welfare issues

0800 854477

0121 766 7466

Ring and Ride: 0121 453 938

Library at Home Service: 0121 464 1118 www.birminghmam,gov.uk /libraryserviceathome (monthly books delivered to your home; also DVDs; CDs; talking books; magazines; jigsaw puzzles etc)

DIAL Solihull is a FREE, impartial and confidential information and advice service for disabled people and their carers. The service is run by people with disabilities for people with disabilities and their carers.

the chance to meet with other carers. The Carers Centre is open to the public 10-6pm Mon-Fri with a late evening opening until 7pm each Thursday. 0121 675 8000 BDRC, Bierton Road, Yardley, Birmingham:

The Birmingham Disability Resource Centre (BDRC) is an organisation based in Yardley, Birmingham proDirectory Enquiries: To 0121 770 0333 viding a range of indepenreg ister for free directory Birmingham Carers Centre dent support services to enquiries if you are disabled For all adult carers aged 18 disabled people, their fami(such as not being able to lift years and over, providing a lies and carers in Birmingor handle the Yellow Pages) “one stop shop” for carer ser- ham. 0800 587 0195 vices and support as well as 0121 789 7365

BOOK ENDS...NEW LIBRARY SERVICE

CALLING ALL BOOKWORMS...

BOOK ENDS...NEW LIBRARY SERVICE

A NEW LIBRARY!

We have now got the funds to provide members with a library service... We’ve been busy stocking up on ME titles, so we can provide you with those hard-to-find books that you maybe can’t borrow elsewhere. Plus there’s some hard-hitting papers and DVDs to help you stay informed. All the below titles are on monthly loan. It’s easy to order your books, papers or DVDs...

Simply text the title plus your name and address to:

Recovering From ME William Collinge

DVDs Talk to the Dorset ME Group Jan 2009 by Engaging with ME Professor Malcolm Professor Holgate - the need for a national strategy for CFS/ME research Hooper (biomedical perspective) OTHER DOCUMENTS

ME and You Steve Wilkinson

The Epidemiology of ME in the UK 1919 International Conference on CFS/ME Biomedical Research May 2008 ME research UK -1999 Dr Betty Dowsett

Shattered Lynn Michell

Inquiry into the Status of CFS/ME Research into Causes and Treatments Gibson report 2006 ME in Children and Young People Dr Alan Franklin

OT and CFS Diane Cox Surviving ME Joyce Fox

07906 466 682 Or email: [email protected]

The Complete Guide to Food Allergy... Brostoff and Gamlin

We’ll post it right out! Orders will be posted with stamps for returns. We encourage reusing the jiffy bag. The return date will be in the front of the book or on the DVD inside cover. To reduce risk of forgetfulness pin stamps to your noticeboard and put a reminder in your mobile! Lost books will unfortunately have to be charged for. And whilst we are fine with renewals, this is only possible for books not in demand. BOOKS Living With ME Dr Charles Shepherd

The Selfish Pig’s Guide To Caring Marriot

Hugh

Living With a Long-term Illness Frankie Campling

Beat Fatigue With Yoga Fiona Agombar

Engaging with ME a lecture by Professor Malcolm Hooper

25% ME Group’s Submission to Gibson Inquiry into Research into ME (severely “I Remember Me” a film by Kim A Snyder affected pwME) ME/CFS/Fibromyalgia Conscious TV CMO Report Chief Medical Officer report Interviews Optimum Health Clinic into ME So easy! Just text the title plus your name RCPCH Guidelines For Children and Adoand address to: lescents Royal College of Paediatrics & Child Health 07906 466 682

Young Hearts TYMES Trust poetry by children & young people with ME

Jenny also has a selection of MEA leaflets on symptom management, benefits advice, carers advice, pacing, treatments and much more! Call her for details or text us a request.

“The State of Me” novel by Nasim Marie Jafry

We aim to provide a talking book If you want to review a book you’ve read send articles to: library soon on non ME titles.

A Woman in Your Own Right Anne Dickson

ME/CFS A Practical Guide Dr Anne Ma- Lost Voices From a Hidden Illness Invest in cintyre ME Better Recovery From Viral Illness Darrel Ho-Yen

Energising Biomedical Research in ME/CFS Jan 2006 lecture by Dr Vance Spence Chair of ME Research UK

Dr PVFS: The Saga of Royal Free Disease: A Melvin Ramsay

Or email: [email protected] It’ll be posted straight to you!

And we’d love to hear your views [email protected] on our selection of books, DVDs and documents. Any suggestions, We will publish them here or on our blog where you can or contributions, welcome.

also find the complete resources list for the library

Text :

07906 466 682

www.me-central.blogspot.com