Unfortunately they have been unable to secure funding in order to continue their future services so have had to wind up.  It was hoped they would keep their office open until mid-December but due to staff leaving to secure other jobs the office closed completely on 31 October.

DIG have guided many edmesh members through applications for Incapacity Benefit and Disability Living Allowance, and their support, understanding and expertise will be a huge and sad loss.  DIG would be the first people to whom edmesh would have recommended people go who were seeking help and advice for benefit applications and filling out forms.  Although DIG had never resourced help with appeals, their expertise often avoided the need for appeals since the applications they presented were so thorough and comprehensive.

Benefits advice can still be obtained from Citizens Advice Bureaux, the City of Edinburgh Council Welfare Benefits Advice Office (The Advice Shop), Grapevine, The Rights Office at Southside Community Centre and other local authority welfare benefits services such as Midlothian and East Lothian Advice and Resource Centres.  For the severely affected, the 25% Group offer their own advocacy helpline.  Details for all these services are on our website on the page Benefits - Local Help & Advice or can be found in the phone book or Yellow Pages.  The main ones are also detailed on the back cover of our newsletter.

Whatever organisation you turn to for advice on benefits, always ask if the staff have experience in dealing with M.E. specifically, and shop around until you find it.  The biggest lesson edmesh has learned is that the better the advice and support you get up front with filling in the form, the more likely the application is to be successful, without the need for medical examinations and appeals, which are hugely stressful and totally exhausting.  More information on applying for benefits can be found in our article Welfare Benefits Help - an introduction.

Christmas Pantomime - Aladdin (description here)

Date: Sunday 7 December
Time: 5pm
Venue: Kings Theatre, Edinburgh
Cost: £7 for edmesh members (usual cost £14)
         £9 for non-members

Christmas Lunch

Date: Friday 19 December
Time: 1pm
Venue: Quay Restaurant, Fisherrow, Musselburgh (website here)
Cost: £13 for edmesh members (usual price £33)
         £16 for non-members

If you  would like to book for an event, please send a cheque payable to Edinburgh MESH to Jeff Begg to the address provided in the back of the edmesh newsletter or email him at jeff@edmesh.org.uk.

Non-members are welcome to book for either event (note different prices above). If you are not an edmesh member, why not consider joining us? See our joining page for more information.

General ME websites

M.E. Support - http://www.mesupport.co.uk

Louise Sargent’s site features information on ME and related conditions, and articles on managing different aspects of the illness.

Sleepydust - http://www.sleepydust.net

Set up by Claire Williams, who has since recovered from ME, this site has tips, news, videos and book and therapy reviews.

Chronic Fatigue Syndrome: an invisible illness - http://www.chronicfatiguesyndrome.me.uk

Linda Sheppard has created a very personal site based on her experiences as an ME sufferer, writing about her struggle to be diagnosed, coping with symptoms and managing employment. There is also an online forum on this site.

Severe ME

Surviving Severe ME - www.survivingsevereme.com

Claire Wade’s Surviving Severe ME website lists tips for severe ME sufferers and their carers, which can also be downloaded as a pdf e-book (see ‘The Book’ link on the site).

A Hummingbird’s Guide to M.E. - http://www.ahummingbirdsguide.com/index.htm

Jodi Bassett explains the reality of living with severe ME. This comprehensive website features advice on diagnosis and treatment, suggestions for carers, medical research evidence and audio/video about M.E.

Websites by doctors

Dr Myhill’s site - http://www.drmyhill.co.uk

Dr Sarah Myhill  is a specialist GP who treats CFS. See the section on ‘Fatigue’ on her site. Also, an e-book on CFS/ME is available here: http://www.drmyhill.co.uk/article.cfm?id=362

Dr Mason Brown’s site - http://www.cfs-me.co.uk

Dr David Mason Brown is a former ME sufferer who is now retired from seeing new patients but you can read about his treatment protocols on his website.

Dr Midgeley’s site (Overton Studios Trust) - http://www.ostrust.co.uk

Dr Michael Midgeley is an ME sufferer who has managed to bring his illness under control. He lives and works in Colwyn Bay, Wales.

Dr Enlander’s site - http://www.enlander.com

Dr Derek Enlander lives and works in New York. He spoke about his treatment of ME patients at ME Research UK’s biomedical conference in 2008.

Dr Teitelbaum’s site - http://www.endfatigue.com

American Dr Jacob Teitelbaum has developed the SHINE protocol to treat CFS and Fibromyalgia, both of which he suffered and recovered from.

edmesh has organised a three hour boat trip gently gliding along the Union Canal, a unique wildlife corridor connecting the heart of Edinburgh with the outlying countryside. You’ll even get a chance to steer the boat if you wish!

The boat is a warm and cosy space with fully fitted kitchen, toilet and central heating, and edmesh have the exclusive use of the boat for the trip - although there will be a skipper and crew! There will be a prize for the best photo taken on the day, which will be published in the next newsletter. So bring your camera!

The trip is run by Re-Union Canal Boats - see their website at http://www.re-union.org.uk/

How to find Re-Union:

Edinburgh Quay can be accessed at the junction of Fountainbridge and Gardner’s Crescent through a pedestrian walkway next to the Cargo Bar.

Re-Union’s boat is the purple boat - you can’t miss it.

By Bus: Lothian Buses 1, 2, 34 and 35 all stop at Fountainbridge.

By Car: There is a Britannia car park underneath the office complex at Edinburgh Quay; charges apply. There is limited pay and display parking in the area.

Booking

Please send a cheque payable to Edinburgh MESH to Jeff Begg to the address provided in the back of the edmesh newsletter.

A limited number of free places are available for edmesh members who genuinely cannot afford the subsidised prices.

If you are not a member, why not consider joining us? Read about the benefits of membership on our joining page.

Speaker: Jan Oakley
Topic: The Lightning Process
Date: Saturday 4th October 2008
Time: 2pm (doors open 1.30pm)

Venue: Lammermuir Hall, St Cuthbert’s Church,
5 Lothian Road, Edinburgh

Everyone welcome. Free talk. Refreshments.
Wheelchair access. Parking nearby.
Lifts available on request.

The AGM will take place before the talk and will take about ten minutes. The order of business is:

1. Approval of minutes of the 2007 A.G.M held on 29th September 2007
2. Report of year’s activities
3. Treasurer’s report
4. Election of Committee and Office Bearers
5. A.O.C.B

The open meetings provide a forum where speakers are invited to cover a range of topics that may be of interest to our membership. As ever, the edmesh committee does not endorse the subject matter covered at the open meetings. Suggestions for speakers are always welcome. Contact us to submit a subject you would like to hear about.

You can read more about Jan here.

For company, conversation, support, entertainment, information sharing, and refreshment. Please look out for the Newsletter on our table.

Venue: John Lewis 3rd Floor cafe, Edinburgh

Time: 14:30-16:00,  1st October 2008

Directions:

Enter the St James Centre by the front [Princes Street] entrance near the HMV music store and proceed until you reach the first up escalator. Take the escalator and the cafe is on your left.

(This way avoids going through John Lewis but, if you want to do so, or have your car parked in the multi-storey, take the John Lewis lift or escalators to level 3 and make your way to menswear where the cafe is located.)

NB. This is not the 5th floor cafe!

I was 18 and my boyfriend and I had been together 3 years when he had his accident. He was knocked from his motorcycle from behind on the A1 whilst coming to pick me up from my last day of work as a nursing assistant. I arrived in time to see the blue lights and the A1 closed. The ambulance men wouldn’t let me come in with them, but said he was Ok. I managed to get a lift home to my parents and they raced me up to the Newcastle General where he had been taken. Over that night, his and my whole family were there, in that horrible waiting room…the Doctor came and told his Mam something in private and then she came back and broke the news to us… he was paralysed… he would never walk again and he was desperately ill… my world fell apart.

I remember being there with him when they thought he wouldn’t last the night, I remember lying in my mother’s arms at home waiting for the doorbell or the phone to ring with someone to tell us the worst news… Thankfully it never came… he spent three weeks in intensive care and then was transferred to Hexham General Spinal Unit, where he spent a further ten months. I put my whole being into helping him regain the person he had been before the accident. I started my nurse training, in the back of my mind I knew then that it might be something I would need to care for him also, and qualified as an RGN.

We got married (The happiest day of my entire life). We bought a house (he got compensation) and we settled down to live as normal a life as being disabled would allow us. We were happy — we had each other and that was all that mattered. So life went well for about ten years: we had a lovely home, we moved again to an even lovelier home up in the Borders and we had animals galore, lots of fresh air, good friends, loving and supportive families, everything… I did get tired spells and I just put it all down to perhaps a hormone imbalance as it would come and go. Then we started to think more seriously about having children; we had everything apart from a baby… we had tried ourselves, but without getting into it too deeply, we could not conceive naturally. So our GP got us on a list and we had two shots at ICSI (specialist IVF). I couldn’t manage the third try as that is when my M.E. symptoms started. I think all the drugs and stress triggered something that had lain dormant since childhood. I’d had glandular fever as a teenager and had then what must have been the makings of M.E. but not full-blown. I do remember the tiredness, not getting over illness or viruses well, but I never suspected I was any different from anyone else… Oh, how I was wrong!

So 2000/2001 I was floored by M.E. I was ‘diagnosed’ by some specialist up in Edinburgh whom I had been referred to by my GP who did loads of tests etc to rule out everything else, said I had M.E. and sent me on my merry way! I struggled for years having this illness, life was very hard, people saw the usual, smiling, happy Carole and thought I was ok, only my husband and I really knew the whole truth…we just muddled through. Thinking back I don’t really know how one of us didn’t end up in hospital. Then I discovered the ME Recovery Group, a nutritional support group in the Borders. I began a regime of supplements and changed my diet: no wheat, sugar etc. and amazingly things started to get better. I think that period had to come for me as I needed all the strength I could muster for the coming two years.

My husband was found to have cancer in his kidney and he had to be admitted to a specialist unit in Glasgow. After lots of worry, tears, stress, travelling, money worries, he survived. He was just regaining his fitness when he accidentally spilled boiling water on himself and was admitted to a burns unit, with serious burns to his legs. That went on for months but we coped, as you do… I still was feeling well enough to cope. I think I had to be somehow — I found the energy from somewhere! He is healed now, but he has to be even more careful with that skin so it is really a daily worry, just to add them to the pile!

So if you saw me at the end of last year you would have thought I was just a normal, if not fat, person. I started walking, cycling, gardening, charity collecting, admin work…. yes you guessed it, I just did way too much all at once and my body just crashed. I have had a bad two months. The palpitations have been constant, I’ve been so very tired and nauseous and have pain that I wouldn’t wish on my worst enemy. I carry a sense of hopelessness and guilt because I am not able to help my husband as much as I need to. He helps me a lot of the time, we lean on each other! It scares me too much that I will have this awful illness forever, it’s been 8 years now and I feel so afraid of what the future will bring. With us both being so reliant on each other, what if a day comes when we are just so unable to help each other that we have to have outside help — we so do not want that— we have tried our whole married life to be as normal as we can be and then this awful M.E. has robbed us of the ability just to be happy.

I know I have heard of people who have had M.E. and regained their health. I think I am on the right path to recovery; it’s just going to take time and a little restraint from myself. I have learned now that I must not push myself to do everything at once. I must take each day as it comes and be grateful I have so much happiness in my life that it rules out the misery that M.E. brings. I am determined that I will one day be able to do all the things I dream of doing and not feel so dreadfully ill afterwards.

edmesh has bought a copy of the book for our library, which will be available for members to borrow.

Here are two photos from the event:

We are very concerned that the important information and recommendations in the Report should not be buried. The edmesh Committee has therefore decided to publish the final draft version of the Report on our website. Click here to read the draft report (PDF format).

We very much hope that the Report will be officially published by Lothian Health as soon as possible; and will be widely distributed to health and social care professionals as promised.

Date: Thursday 21st August
Time: 1.30pm
Venue: The Pearce Institute, 840 860 Govan Road, Govan, Glasgow (tel: 0141 445 6007)

Dr Teitelbaum, who suffered from CFS and Fibromyalgia himself, authored the book ‘From Fatigued to Fantastic’. His treatment protocols, considered controversial by some, can be found at his website www.endfatigue.com.

The talk is organised by Fibromyalgia Friends Scotland. To help the organisers get an idea of the number attending, please fill in this form and email it as an attachment to fibroscot95@blueyonder.co.uk by Tuesday 19th August. Or just turn up on the day.

For details of Dr Teitelbaum’s other events on his visit, see http://www.fibromyalgia-associationuk.org/content/view/257/77/

NB This article is provided for information only - edmesh do not endorse individual therapies/therapists.