|BOLTON/BURY ME/CFS SUPPORT GROUP MEETING
20TH MARCH 2008 – AGM
A very big thank you to all of you who managed to make it to the AGM.
Once again, this year, we made the business part of the meeting as short as possible by handing out printed copies of both the Secretary’s report and the Group Leader’s report. The treasurer read out his report and I’m happy to say that we have enough money to continue for another year.
We were sad to say goodbye to two of our committee. Carole Brown our librarian, and Wayne our treasurer. They leave us with many thanks for the work they have done.
A new treasurer was elected; his name is Chris Tyson and we welcome him onto the committee in this very important role.
After the meeting had been adjourned for another year, we had time for a chat and we had crisps and cakes for our refreshments as a little thank you to all who attended.
For those of you who couldn’t attend, thank you for your support as members of the group and we wish you all better health this year.
Lots of love to everyone Pam
YOU AND YOURS
In November, BBC Radio 4 broadcast an important series of programmes which looked at different aspects of M.E., from why it is such a controversial illness to what treatments are available and the current state of research. Action for M.E. is grateful to the You and yours team at the BBC for allowing us to bring you the following transcripts*, edited for reasons of space. Thanks to InterAction
M.E. can affect people of all ages and socio-economic status, from the 'ordinary' children, young people and adults who were featured in the You and yours series, to the rich and famous.
On 2 November, Action for M.E. patron, the film-maker Lord David Puttnam, opened the series by telling You and yours listeners about how M.E has affected him and his jet-setting lifestyle.
Lord David Puttnam
Lord Puttnam was interviewed by BBC presenter, Peter White (no relation to Professor Peter White, who featured in the next programme). Lord Puttnam told listeners:
"I'd just come back from a trip to the Far East. I'd only been back a day, day and a half – and I suddenly came up with this tremendous fever. It was extraordinary. The doctors first of all tested for Dengue Fever (an infectious disease carried by mosquitoes which sometimes causes severe joint and muscle pain). I just remember dragging myself into bed. For about a week –and this is not an exaggeration – when I needed to go to the loo it was literally like climbing Everest. By the time I'd climbed back into the bed, I was covered in sweat and utterly exhausted.
"I had a very good doctor. Within a week he said to me, 'I think you've got Epstein Barr and you need a long rest. I went off to Hawaii with my wife for about a month and had various treatments. I got there and all I could do was sit and stare at the sea but by the time we left I was driving again and moving around slowly. It was only really later that it kicked in that I had something of a far more permanent nature – I didn't know what Epstein Barr was to tell you the truth.
"The initial phase was this sort of massive dose of extreme flu – aching limbs and exhaustion. Then there was a longer phase of maybe six months of tiredness, lassitude, lack of concentration. And then in a sense the permanent state – if I can call it that –kicked in. Now that is typified by a number of things.
"I'll give you one very good example. All my life I've been a prolific letter writer... when I say letter writer, I was a letter dictator. I come from that generation of young execs in the early 60s who went and talked to the typing pool and you dictated letters in reams.
"What I found was that that bit of my brain, as it were, just got scrubbed out. I could not construct and hold a letter in my head. It was very difficult for my secretary and we had to begin to evolve a whole new way of working.
"Faraway the worst effect for me was – and to a lesser extent still is –depression. I get attacked by a period of exhaustion, nowadays four or five, sometimes six, times a year. And that's accompanied by two things – physical symptoms. One is embarrassing – the need to go to the loo on the hour every hour for about a day, day and a half. That's the first sign.
"Your temperature – it's as though the thermometer in your body has bust. Temperature seems to run up and down. I suddenly become very, very hot. I've actually got special permission at the House of Lords, not in the Chamber itself but otherwise, to take my jacket off because if I don't, I feel as though I'm going to pass out.
"And then the last one is depression. Now that's the most serious because no matter how rational you are – and bear in mind I'd never had it for longer than three days – you think each time, this is the big one, this time it's never going to leave me.
"I think most people do tell you to fight it but I think people who've never had this form of depression don't understand that in a sense your security resides in the pit. You quite deliberately pull yourself down into the pit because whilst you're in there you feel reasonably safe and you kind of wallow in this pit, somewhere between sadness and sometimes despair. The rational part of your body says 'I'll be out of this in a day or two,' the irrational says 'No, no, no not this time."
Peter White then asked Lord Puttnam what kind of treatments he has tried.
"I tried taking a lot of little Japanese seaweed pills, within that I think there's clearly something that's useful. Massage, strangely enough, is very good. I don't know if it's just because it's relaxing. For me it's time and it's also the fact that after all these years I've learned to listen to my body.
"I learned absolutely – it's like putting the brakes on. When you get to this state you do not push it. If you do, you get a nasty sense you could tip yourself right over the edge. So I just learned to hit the brakes.
"It's a little frustrating for people because you suddenly find that you're in the middle of something and someone says, 'Well, you seem to have lost interest in that.' I haven't lost interest, I'm merely going into a kind of self protective mode for either a few hours or a few days.
"When I was mulling (over) going for the chairmanship of the BBC, someone very sensibly said to me, 'Do you really think you're well enough?' It's so far never stopped me doing anything. All it has done, from time to time, has meant that I've adjusted my calendar slightly.
"I can no longer do a flight to Los Angeles and just bounce up the following morning and go straight to work. Now I've got to give myself half a day. Probably what I'm doing is what any sensible person should do but don't forget that for me, as a film producer, for years and years and years I got off the plane and went straight to work. I don't think I could do that anymore. More importantly I wouldn't even challenge myself to do it.
"In '82 1 did a film called Local Hero and I loved the environment in which we made that film. It was on the west coast of Scotland. I trotted around for a bit looking for a (home somewhere) like that and then by God's good grace, in 1988, we were on holiday in the west coast of Ireland and I found exactly what I'd been looking for in Scotland.
"So I've lived increasingly on the west coast of Ireland, in a village where the word stress – they wouldn't know how to spell it, I'm happy to say. I'm surrounded by neighbours who have real, normal lives and whose expectations of me are just that I'm neighbourly.
"I spend as much of my life as I can away from the pressures of Westminster – let alone the movie industry. And I think that's been a huge help. My wife certainly says I'm a different human being the moment I cross the causeway at Rosscarbery on my way home.
"I give myself a little bit of extra stress because I commute back and forth but where I live is all of a piece with the person I want to be and the lifestyle that I seek."
On 5 November, the You and yours programme held a live studio discussion about M.E., featuring guests including Action for M.E. trustee Ondine Upton, Professor Peter White and Dr William Weir plus pre-recorded interviews, including one with severely affected Action for M.E. member, Zoe Williams and her mum, Pat.
Pat Williams: "I'm Zoe's mum. This (piano music) is Zoe playing Memory from Cats, probably just before she got ill when she was 13. One day she was well and the next day she was ill and we thought it was flu or a similar sort of virus. But she never got better, she's never had a day when she's been well since that."
Zoe: "It just didn't go away and that was 17 years ago. I've been in bed virtually all the time since then.
"Sleep disturbance is a big part of my illness and sometimes I'll feel very groggy all day and that will affect what I can do. I need the dark for resting and then I have a bit of light for when I'm doing things.
"It was very difficult when I was more ill because I had to spend most of my energy on eating and getting to the loo and often that would make me collapse.
"The worst symptom for me is called a malaise and it feels very painful all over. It's a kind of poisoned feeling throughout my body, as if it's in my veins.
"M.E. affects all aspects of my life. I never went back to school. I haven't been able to do lots of things that most people do, like going to university or going out with friends.
"When I was first ill I found that the doctors were very unhelpful because they didn't know what to think really and I just felt under pressure to get better all the time. After a while I was sent to a psychiatrist and it was a very unhelpful experience because I just found it confusing. She didn't seem to understand why I couldn't do things. I had lots of blood tests and various other tests but they just came back normal.
"For the first couple of years I felt very isolated but I've gradually developed new friendships and found ways of taking part in the world without being able to go out. I have friends around the country with M.E. and we've started having imagining events – long distance events – where we might have a pretend party.
"The other week I joined up with friends in imagination under a tree because I had a nice photo of my granny's tree and I had some leaves and beech nuts from this tree so I sent people some leaves and nuts and a nice photo.
"The future is an unknown really but I try and live in the present and just make the most of what I've got now."
Pat: "She loved playing the piano. We always said that we'd know when Zoe was getting better because the first thing that would happen would be she'd start playing the piano again –and that hasn't happened."
Why is M.E. controversial?
You and yours presenter Peter White (PW), opened the live discussion between studio guests, Professor Peter White (Prof White) from Bart's and the London Hospital, Dr William Weir (Dr Weir), former Consultant Physician in Infectious Disease and Ondine Upton (Ondine), an Action for M.E. trustee who has the illness.
PW: "Can I start by asking you Professor Peter White, why are we still arguing about what this illness should be called, an illness which has been around for at least the last 50 years?"
Prof White: "I think the problem with naming the illness is we don't really know what causes it. In fact I think it's a reflection that the illness is probably, as the latest research suggests, a collection of different illnesses come together. In other words, it's heterogeneous."
PW: "Does that cause a lot of problems, the fact that you're putting a lot of things into one basket?"
Prof White: "Yes and no. It may well be rather like kidney failure. There are many diseases that can cause your kidneys to fail – but kidney failure is one presentation. Some of the treatments that we have available may help the illness whatever its original cause."
PW: "Dr Weir, what do you prefer to term the illness?"
Dr Weir: "I prefer to term the illness M.E., although I would qualify that by saying that M.E. is probably a subcategory of the more broad-brush definition of chronic fatigue syndrome."
PW: "But a lot of people get very cross about the term chronic fatigue syndrome and feel that it causes confusion because fatigue doesn't sound anything like severe enough for what they feel they suffer."
Dr Weir: "I'm very sympathetic to that because just characterising the illness as a cause of fatigue doesn't really do justice to the effects it has on the patient's lifestyle. And this is a very, very severe illness. Because fatigue is seen as the only manifestation and there are, in fact, many other manifestations it tends to be trivialised."
PW: "Ondine, where do you stand on this debate?"
Ondine: "Oh I definitely say I have M.E. and I think it's very interesting talking about fatigue because one of the best analogies I've heard is that (comparing fatigue to M.E.) is like comparing a kitten to a tiger.
"You might suffer fatigue that just means you feel a bit tired after a day's work. The kind of fatigue that people with M.E. are grappling with is more of a tiger variety which is almost impossible for anybody to imagine who hasn't got it."
PW: "How typical are the experiences of Zoe Williams? Because this is the same illness, it's called the same thing, but clearly with a huge range in the severity of symptoms."
Ondine: "Absolutely and I can identify very closely with (Zoe). I've had M.E. for 18 years and I've had those days of lying on sofas, just spending the day developing your patience –watching raindrops go down the glass pane. And I've also been able to have a child and I'm now able to work part time."
To be continued.
Bury Annual Carers Consultation Day.
On the 20th February I represented the Support Group at this event, which lasted from 9.30am to 2pm. The aims and objectives of the day were to identify how Bury can find hidden Carers, what did we expect from the new Carers Centre, how Bury can expand support for Carers within the NHS and what training would help us in our caring role. Pat Jones Greenhalgh Executive Director Adult Care Services and Sharon Martin Associate Director Bury PCT for Primary Care & Commissioning were both present and involved in the discussion.
Gwen Lucas the manager of Adult Carer Services opened the event and reported back on the issues and requests that had been raised at the 2007 workshops. A summary of these had been sent out to those who had attended shortly after the event last year and a 13 page written report was now provided as to how they had been addressed as at February 2008. Having attended and contributed to the event last year I was very pleased on the progress that had been made in response to the issues raised at the 6 workshops. If anybody would like a copy of the report please contact me on 0161 764 7822 or via email firstname.lastname@example.org
Sheila Blackman(Centre Manager) and Melanie Haves (Senior Development Worker) then gave a cheerful update on the new Bury Carers Centre which is based in Victoria Buildings, Silver Street, Bury BL9 0EU Tel: 0161 763 4867. The official opening is expected to be in early Spring once the new lift has been installed (March/April) to take Carers up to the beautifully laid out centre which is on the 1st floor. The centre is now open 9am to 5pm to Carers who are able to walk up the main staircase, otherwise advice can be given by telephone or visits can be arranged to Carer’s own homes. I am aware one of our Bury members has already contacted them for help in completing a benefit application form. The Centre Manager visited our member in her own home and helped to complete the form and I understand the benefit application has been successful, which is very good news. I have also visited the Centre and was pleased to find information about our Support Group was already on display. I was very well received and Carers can even just drop in for a drink and relax in one of their comfy chairs, if they need to pass time in Bury.
The Centre is currently developing their services to include someone to listen to you, one to one support, access to counselling services, information relating to Carer’s rights and legislation, relaxation and holistic therapy sessions, access to the Emergency Card Scheme, advocacy support, access to welfare rights/benefits advice, Expert Carer Programme, social events and activities, educational courses and training sessions, computer access and outreach support throughout the Bury township.
I would strongly recommend Carers from Bury to phone Bury Carers Centre on 0161 763 4867 and ask to be put on the mailing list for their free newsletter which will keep you up to date on everything they are doing.
Workshops. On arrival we had all been allocated to specific tables in relation to the generic medical condition of those we cared for. I sat on the neurological table alongside other Carers and a GP practice manager. 20 minutes was allocated for each of the 6 workshops and I must admit at the end I felt shattered but felt I had had the opportunity to express some of my strong feelings about ME issues as well as offering my opinion as to how solutions could be made to benefit all Carers in Bury.
HERE'S A LITTLE SOMETHING I MADE EARLIER...
Nutritionist Anne Knott recommended this to Jane Harries*, because on a wheat-free diet you need a different source of fibre for good digestion: the linseeds provide that. Leave out the molasses if you are on a sugar-free diet.
1 tbsp rice flakes 1½ tbsp millet flakes
1 dsp linseeds Half a banana
1 tsp molasses or half tsp cinnamon
Soya milk 2 cups water
Soak the linseeds in the water in a saucepan the night before. Add the flakes in the morning and bring to the boil. Simmer one-two minutes then serve with molasses stirred in and banana chopped over the top, with soya milk. A sprinkling of cinnamon can make things taste slightly sweeter if you can't have molasses.
NB. Use a non-reactive pan for this, ie. stainless steel. This also works well in a microwave, using a non-metal container (five-six minutes on medium high setting).
*From Eat to Beat Fatigue, complied by Jane Harries. £7.95 (plus 95p p&p). Cheques payable to The Erskine Press, The White House, Sandfield Lane, Eccles, Norwich, NR16 2PB. E-mail: email@example.com or tel: 01953 887277.
16 large vine-ripened tomatoes, cut in half
4 large garlic cloves, unpeeled 1 red onion, chopped
3 tbsp olive oil 1½ tbsp chopped sage leaves
125ml / 4floz / '½ cup vegetable stock
Sea salt and freshly ground black pepper
Preheat oven to 180°C / 350°F / Gas 4. Arrange tomato halves cut side up on a baking tray with the garlic. Roast in the oven for 1¼ hours until browned and soft. Remove from the oven and leave to cool.
Heat the oil in a large, heavy-based saucepan over a low heat. Add the onion and cook for 2-3 minutes until it starts to turn golden.
With a metal spoon, scrape the flesh away from the tomato skins and add to the saucepan, discarding the skins. Squeeze the flesh out of the garlic cloves and add to the pan, discarding the skins. Stir the sage into the mixture and bring to the boil. Turn the heat down, cover with a lid and simmer for 10 minutes, stirring occasionally.
Blend – either in the pan using a hand-held blender until smooth, adding the vegetable stock slowly until the soup is thick but still runny – or in a liquidizer or food processor, then return to the pan and heat through. Season lightly with salt and pepper. Serve hot or chilled.
This recipe is reproduced with permission from The best gluten-free, wheat-free and dairy-free recipes, by Grace Cheetham,. £14.99. Published by Duncan Baird Publishers Ltd, Sixth Floor, Castle House, 75-76 Wells Street, London W1T 3QH. Available on Amazon, or visit the author's website, www.allergyfreecook.com, for more information.
2 handfuls of spinach 1 courgette
3 medium tomatoes 1 onion, chopped
10oz / 200g cooked brown rice 400g tin of chick peas112 tsp coriander 112 tsp cumin
1 clove of garlic 2 tsp fresh herbs, chopped
1 small handful of lettuce leaves
2 tbsp olive oil 1 dsp tahini 1 tbsp lemon juice
Salt and pepper to taste
Chop tomatoes and cook together with spinach leaves in a little water. Steam sliced courgettes with the garlic. Mix the rice with the drained chickpeas, chopped onion, cumin, coriander and fresh herbs. Make a dressing by shaking the lemon juice and olive oil, salt and pepper in a glass jar with the lid on. Reserve a little, and stir the tahini in to the rest. Combine dressing with the rice mixture, the spinach and tomatoes, and the courgettes and garlic.
Arrange lettuce leaves on a plate, and drizzle remaining oil/lemon dressing over. Put the rice mixture in the centre. Season to taste.
From Eat to Beat Fatigue, complied by Jane Harries
Baked figs with yoghurt and pine nuts
12 ripe figs 3 tbsp clear honey
200g / 7oz soya yoghurt
Preheat the oven to 180°C / 350°F / Gas 4. Place figs in a large ovenproof dish and drizzle with honey. Bake in the hot oven for 30-35 minutes until the figs are tender and the juices have evaporated.
Meanwhile, heat a heavy-based frying pan over a medium heat. Toss in the pine nuts and dry-fry, stirring constantly, until just beginning to brown. Tip into a bowl. When the figs are cooked, take them out of the oven and serve with yoghurt and sprinkled with toasted pine nuts.
From The best gluten-free, wheat-free and dairy-free recipes, by Grace Cheetham
Thanks to InterAction for these recipes.