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Professor VanNessIn N. Ireland

On Sunday 2nd February 2014 Newry & Mourne ME/FMS Support Group held a patient conference in the Mourne Country Hotel Newry. The guest speaker was Professor Mark VanNess from the Workwell Foundation California. Dr. VanNess presented evidence of the measurement of fatigue in patients with ME. The Workwell Foundation is a medical

sports facility, where Dr.VanNess and his colleagues research the debilitating effects of exercise on ME patients following a controlled measurement of exertion known as a Cardiopulmonary Exercise Test (CPET)

The test is performed in a controlled environment and cannot be faked,

for each healthy participant there is an ME patient. They both perform to the best of their ability, this involves 8-12 minutes on a Treadmill or exercise bicycle, whilst results such as oxygen levels, heart rate, work load, are recorded. Peak volume of oxygen (O2) defines the physiological limits of a participant. Anaerobic Threshold is an index

BUILDING BRIDGES TO A BETTER FUTURE M.Marks

Newry & Mourne ME/FMS Support Group Newsletter May 2014 Edition 2 Volume 1

In This Edition.......

Professor VanNess in N. Ireland

Christmastime in Newry

Rare Diseases Day in Stormont

Pain Alliance N. Ireland

N & M Receive cheque from Progressive Building Society

Sally receives cheque from Volunteer Now

Collection at Down GAA

Stormont Conference Pain Survey Living Life to the Full Mood Matters Banbridge Council Easter Raffle Public facing

accountability meeting

PCC ME/FMS Focus Group

Adopt CCC for ME in N. Ireland

Donor Register Dr. Joe Mc Veigh May 12th

Extravaganza Eileen Mc Conkey

“The test is performed in a controlled environment and cannot be faked,”

of submaximal exercise capacity, it measures the point at which energy production transitions from aerobic to anaerobic, and this is a crucial measurement in CPET as it represents the onset of fatigue. If an ME Patient who has given maximal effort on a CPET and it is found that their Anaerobic Threshold occurs at low oxygen consumption levels (low workloads) then even normal activities of daily living may exceed the Anaerobic Threshold. This simply means that an ME patient when doing normal activities of daily living, may exceed their A.T ( the onset of fatigue) and this is why they suffer symptom exacerbation in post exertional malaise (PEM)

Both participants take the same test 24 hours after the first test and results are recorded. This is where the dramatic difference in results occurs. As the healthy participant is able to perform just as well and sometimes even better than the first test, results

for the ME patient have drastically dropped they cannot perform to the same degree as the day before, most ME patients at this stage are already experiencing PEM. A follow up a week later or a few weeks later show that the healthy participant improves with exercise and their ability increases, however the ME patient is in severe post exertion malaise a

Complete relapse, it takes much longer for an ME patient to recover from exercise than the healthy counterpart.

Christmastime in NewryThe Christmas Meeting got underway with Malachy Byrne Chairman handing out presents he had organized for secret Santa. Martin O Brien volunteered to play Santa for the night, members called out various numbers between 1-30 and the corresponding present was given to them by Santa. Everyone was asked to wait until all


Newry & Mourne ME/FMS Support Group Newsletter 5/1/2014 Edition 2 Volume 1

presents had been distributed before opening them.


The party started when everyone opened their present and realized they were all silly items related to Christmas. Crackers were pulled and party hats were worn. The festive food was delicious with a Christmas cake specially made for Newry & Mourne ME/Fibromyalgia Support Group and Debbie Deboo made her famous cupcakes which looked so appetizing.

Everyone had a cuppa and there was plenty of festive food to go round. Some members hadn’t been at the monthly meetings for a while and came to catch up with friends and meet new people. The musicians set up and began to play whilst everyone was given some festive instruments to join in. The mood was very relaxed and everyone enjoyed the fun and music. Once everyone was warmed up the singing began and later a choir was formed to sing some Christmas songs accompanied on piano by member Sheila Murphy.

Rare Disease’s day in StormontOn 13th January 2014 Newry & Mourne ME/Fibromyalgia Support Group were invited to Stormont Buildings to take part in highlighting Rare Diseases.

Joan McParland, May Patton, Martina Marks, and Tom Magner attended on behalf of the Support Group.

The event was organized by the Rare Disease Partnership and there was a good attendance of community groups and charities with a few MLAs dropping by to lend their support.

The morning began with an introduction to Rare Disease by Dr. Fiona Stewart MBE, followed by a patient’s perspective, delivered by Michael Holden. Simon Hamilton MLA then expressed the need to join together for better health. Michelle Tennyson, Assistant Director of Public Health Agency, addressed the audience about the difficulties of living every day with a rare disease.



Concluding the event was Christine Collins Chair of N. Ireland Rare Disease Partnership. This event offered charities the chance to network with other agencies and advertise our support group and our up-coming conference.


Pain Alliance N. IrelandDr. Pamela Bell from Pain Alliance N. Ireland was our first guest speaker of the New Year.

Dr. Bell began her presentation by explaining why there was a need to develop pain management throughout the Health Service. In 2008 a number of pain clinicians realised that pain management in N. Ireland was minimal and difficult to access, with long waiting lists for pain clinics.

Dr. Bell stated that there needed to be a more comprehensive understanding of pain and how it affects people’s lives. The statistics are 1 in 5 people in N. Ireland suffer from pain.

This pain affects their ability to work, to care for their families, it may also affect their mental health. From 2010 onwards a number of meetings with government and decision makers and the Health Committee led to a major summit.

The summit produced three areas of work which Pain Alliance has carried forward as its purpose.

These areas are education, to educate Health care staff also patients, carers and communities. The next area is to engage with the Public Health Agency, and the third

is to work closely with Patient and Client Council.

Dr. Bell then continued to explain that Pain Alliance is continuing to work with

is government, and other relevant agencies on behalf of pain patients. Another organisation they work closely with is Pain Concern which are based in Scotland but represent all UK.

The next step was to have a focus group which patients were asked what would make the most difference to their experience of using the Health Service.



The overwhelming message that came from the focus group was Listen, Believe, Diagnose, and Treat. Patients felt they weren't being listened to or believed before the Healthcare Professional diagnosed their condition and treated them. Dr. Bell continued with an explanation of how medication can

Impact on your life, and how pain is perceived throughout your body. This meeting was well attended as members were very interested in Dr. Bell’s presentation.

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ME/FMS Support Group Receive cheque from

Progressive Building Society Newry & Mourne ME/FMS Support Group was awarded a donation of £1000 from the Progressive Building Society, after being nominated for financial support by a member of the support group who is also a progressive building society member.

The donation from the Progressive Building Society was awarded as part of their community awards scheme, which supports initiatives by non-profit organizations who benefit the community. The money was used to fund a successful international professional’s conference to raise awareness of ME/FMS by enabling medical professionals

To learn about the illness from each other. The manager of Progressive building society Lynne

Lyness presented members of the committee with the cheque.

Sally receives cheque from Volunteer Now



Sally Birch receiving a cheque from the Association of Independent Volunteer Centers (AIVC), on behalf of Newry & Mourne ME/FMS Support Group. Several other groups were also getting funds from the same source. Maria McAllister, Chairman of Down Council gave out the cheque. (That's me front right - for those who don't know me.

Collection at Paric EslerA collection by Newry & Mourne ME/FMS Support Group at Paric Esler in Newry, was conducted by the

chairperson for the group, along with friends of the group Eileen

Marks and Sharon Henry on the 16th March. The collection kindly agreed by committee and staff at Down GAA gathered £120 for ME/FMS, and Down also won the game overcoming current all-Ireland champions Donegal.

VanNess in StormontThe highlight so far this year for Newry & Mourne ME/FMS Support Group has been the International ME Professionals Conference held in the Long Gallery Stormont Buildings Belfast.

The day began with Dominic Bradley MLA welcoming everyone to the event, after a short word from the chairperson and treasurer of Newry & Mourne ME/FMS Support Group, Dr. Willy Weir group medical adviser, spoke of the history of ME. Dr. Weir was followed by Dr. Vance Spence ME R UK, who presented current ME research projects funded by MER UK.



Newsletter 5/1/2014 Edition 2 Volume 1

Dr. Spence wondered why Queens University Belfast

Have not submitted any research proposals to them, and hoped this would change in the future.

The event was hosted by local MLA Dominic Bradley, on the 4th February 2014. This conference was attended by upwards of 90 Professionals,

including representatives from HSCB, PCC, Health Trusts, ME R UK, Irish ME Trust Dublin, Professor of Nutritional Medicine London, MLAs, also Fibromyalgia N.I. and Ulster University.

Horace Reid patient advocate presented the current situation for ME patients in N. Ireland with regards to services, and explained how achievable it would be to get patient care services here. The guest speaker was Dr. Mark VanNess who once again gave a comprehensive

presentation of dangers of exercise for ME patients. Dr. Weir, Dr. Spence and Dr. VanNess then took questions from the audience. Stormont Health Committee member Jim Wells MLA finished the conference with words of encouragement for the patients and commended the support groups for their hard work.

Newry & Mourne ME/FMS Support Group presented ME R UK with a cheque for £1000 which they had raised to donate to research.



A silent gathering outside Stormont was then attended by patients and MLAs, to highlight the people who are bed bound or house bound with ME and cannot actively take part in awareness events. A 30ft banner was displayed with photos and stories of many ME patients who are too ill to attend, some have even lost their lives to ME.

The conference was a complete success story, as it has been published in several local newspapers, it has been shared far and worldwide on Facebook and a number of opportunities have been developed from the event including a ME focus group hosted by the PCC and a visit to Newry from Dr. Joe McVeigh Ulster University Jordanstown, both are keen to work with our support group to increase awareness of ME/FMS.

Pain survey by Patient Client Council

On Tuesday 11th February the secretary and chairperson of Newry & Mourne ME/FMS Support Group attended the launch of the Patient Client Councils pain survey. This survey was conducted across the province and included all Health service users. Fibromyalgia and ME support groups were included in the survey, and the chairperson of Newry & Mourne ME/FMS Support Group was one of a few service users

Asked to speak about their experience of using the Health Service.



The Event was attended by the Health Minister Edwin Poots, and other health professionals.

This was another opportunity to highlight ME Awareness and the hard work of our support group.

As a result of attending this event we have secured the operational manager of the PCC Louise Skelly as a guest speaker for June’s monthly meeting.

Living life to the full At our monthly meeting last November we had the chief executive of Aware Defeat Depression Siobhan Doherty as guest speaker. Siobhan explained the facts about mental health, and the service they provide as an organization.

From this meeting a six week cognitive behavioral therapy programme was set up for members of Newry & Mourne ME/FMS Support Group, to begin in mid-February 2014 in Newry Library.

The course was popular and very much enjoyed by those who could attend every week.

This programme was developed by Dr. Chris Williams in Scotland and currently Aware Defeat Depression are the only organization in N. Ireland who can deliver this programme.

The facilitator for this course was Joan and we began on the first week to explain the negativity

Surrounding CBT for ME patients. It has in the past been misinterpreted as a quick fix or a “cure” for ME/FMS and has resulted in society believing if CBT does you any good at all then your illness is all in your head. However, that’s not the case, the purpose of this CBT course was to tackle the secondary depression that all chronic pain sufferers get as a result of living with a chronic illness.

WEEK 1 “Why do I feel so bad”?In this first week we learned that most people at some point in their life get caught in a vicious circle. Imagine a circle divided into quarters, each quarter has the following labels, Altered Thinking, Altered Feelings, Altered Physical Symptoms, and Altered Behavior.

Any one of these labels above can start us on the road to a vicious circle, if we have bad thoughts it can lead to bad feelings followed by worse physical symptoms and result in bad behavior.

YOU CAN STOP THE CIRCLEJust by changing one of the labels in the circle you can change your thinking, feelings, physical symptoms, and behavior.

I know it’s not always this easy but you are in control and you can change.


WEEK 2”I Can’t Be Bothered Doing Anything”In this session we were asked to start doing something we haven’t done for a while,

Something we used to really enjoy. By changing one of the segments in the vicious circle to a positive we’ve changed the whole circle.

Start of slowly and take it in small bits, plan to do something you enjoy. If it doesn’t work the first time try again or make it smaller until you can manage it. This will increase you positivity.

WEEK 3”Why Does Everything Always Go Wrong”?Tackling bad thoughts, it’s easy to continue encouraging bad thoughts, it’s easy to blame ourselves and then give up and say” What’s the point?”

The way you change this behaviour is to take a bad thought and isolate it, label it, put it in a box, it’s not worthy of your attention, learn to control bad thoughts as being part of getting

upset. Don’t let this continue into bad feelings then bad physical symptoms and bad behaviour.

Stand up to the bad thought and don’t let it be a bully, give yourself a break you’re already exhausted coping with a chronic illness so draw a line and be confident and positive you are a strong person and you can beat this. Take a bad situation and turn it around, look

At it differently, explore all possibilities don’t just jump to the first conclusion. Ask a friend what would they do? Or think about the advice you would give if a friend asked you for advice.

WEEK 4”Im Not Good Enough”Try to remember a time before you though you weren’t good enough, what’s happened since? What’s made you think like this? You have started to behave in this way, because you believe this.

To believe something we need evidence of it, so instead of thinking about not being good enough how about you write down the things you are good at. Everybody’s good at




something it doesn’t matter how small it seems, if you’re good at it take pride in that. Then think about what other people would say if you asked them what they think you’re good at?

Remember a time when you helped someone, or did something really well. Now use this list to convince yourself you’re ok you’re not a bad person you just need to think about good things in your life.

So the next time you have a bad thought put it into context, and don’t give it attention, use your list of good qualities to conquer the bad thoughts.

WEEK 5”How to Fix Almost Anything”Break problems into tiny chunks and tackle one chunk at a time. Make a plan of how you’re going to approach each chunk, and don’t worry if you don’t complete a chunk on time break it down again. Eventually you will achieve it by taking it slowly and one chunk at a time and remember not to criticize yourself for not completing something in your plan instead pat

yourself on the back for the little bit you have done!

You must also be realistic and plan for distractions or bad days don’t make more out of it than necessary just deal with it and move on keep aiming for your target.

Week 6 “The Things You Do That Mess You Up”This was this final week of our programme, where we learned to enjoy life and have enough of what makes you happy, but not too much, don’t let it destroy you or take control of you. If there is something you think you are doing too much of change your habit and do something else, cut down on whatever is too much for you. All the topics above are common sense nobody needs to go to a class

to learn them, but sometimes we need to hear it from someone else. Sometimes we need the routine and social aspect of going to a course,

Or programme. We all have problems, we all have friends, and we all have the ability to make positive decisions



about our life. If you need help to sort out a problem or you’re feeling so low you can’t break the circle, don’t be afraid to get help, or talk to someone, and get advice.

MOOD MATTERSIn March Aine McDonald from Aware Defeat Depression was our guest speaker.Aine provided us with a customized 2 hour version of their "Mood Matters" Programme.This included members working in groups to describe our illness and how secondary depression can over-whelm most of us.The group enjoyed the relaxed, interactive element to the programme. It gave members a chance to talk about how they feel and what difficulties they face having a chronic illness.

Banbridge Council On Wednesday 2nd April members of Newry & Mourne ME/FMS Support Group attended an ME Awareness evening in Banbridge Council, organized by Elaine Dickson of Dromore group FMSNI.

The event was hosted by Councilor Hazel Gamble herself an ME patient and was attended by the Health Minister Edwin Poots. Councilor Gamble told her story of how she was fit and healthy one day and the next struck down with a mysterious illness, she was a young women when she became ill with ME and spent time bed



bound because of it. Councilor Gamble is now able to work, but she says some days are still very difficult for her and she must pace herself.

The Health Minister Edwin Poots also spoke of the devastation of ME, he explained how a new pilot scheme currently running in the Northern Trust it is hoped will provide answers to long term services for ME patients in N. Ireland. There were also addresses from other ME patients each one as difficult to hear as the next.

Elaine Dickson spoke of her journey to diagnosis and how she gets by with the support of her loving family. Joan Mc Parland presented Health Minister Edwin Poots with an ME/FMS information pack which included “voices from the shadows” and NICE guidelines.

Easter RaffleNewry & Mourne ME/FMS Support Group organized an Easter Raffle this year. Tickets were available from December and no one was under any pressure to sell them.

The prizes kindly donated to the support group were: 1st A 30 minute Flying experience from Kernan Aviation Craigavon

2nd A £200 Household Total Maintenance day.

3rd Sunday dinner for two in the Mourne Country Hotel Newry.

The draw took place in the Shelbourne café Hill Street Newry, on Saturday 12th April with a member of the Shelbourne staff drawing the winners at random.

And the winners are: 1st Simon Laverty 2nd Angela Neeson 3rd Fred CorkenThe Easter raffle made £720 which will go towards the donation to MERUK later this year.



Public facing accountability meeting On 12th March the Patient Client Council hosted a public facing accountability meeting of the HSCB.

The meeting was held in Riddle Hall Stramillis and was attended by Heath Minister Edwin Poots, HSCB Chief Executive John Crompton, Chief Executive of the Belfast Trust Sean Donaghy, members of both HSCB and PCC. There was also members of the public there, including two committee members from Newry & Mourne ME/FMS Support Group. The good news for Newry & Mourne ME/FMS Support Group is that questions about the new pilot scheme in the Northern Trust were put to both the Health Minister and John Crompton, both of whom could not answer, the questions were then referred to a member of the Public Health Agency who attempted to answer in public but asked if we would speak to her after the meeting.

The questions handed to Health Minister Edwin aPoots are expected to be replied to in writing. As are the queries put to the Public Health Agency.

PCC ME/FMS Focus GroupOn 8th April Newry & Mourne ME/FMS Support Group were invited to an ME/FMS focus group as part of the patient client councils “Peoples Priorities Project”

The focus group was held in the Mourne Country Hotel Newry and attended by treasurer, secretary, chairperson of Newry & Mourne ME/FMS Support Group, also group members Alison Patterson whose teenage son has ME, Margaret Hillis, and Geraldine Barton.

Neill and Scott from the PCC began by asking the members in turn their experience of the Health Service, each person had a chance to give a realistic picture of being a service user.

The next two questions for each person to answer were “What would you change about

the Health Service?” and “What are your top 3 priorities?” taken from a list of 20 Health areas and situations. We also had a chance to explain what ME/FMS is and how it affects people, what support there is in the community and how we feel things should change.




Newry and Mourne M.E./Fibromyalgia Support Group has launched a petition asking Health Minister Edwin Poots to adopt the Canadian Consensus Criteria (CCC) as Northern Ireland's official clinical guideline for M.E.It says: "This move would give local doctors the best means to accurately identify patients with M.E. and this could potentially lead to better prospects for patient recovery and hopefully an earlier return to a productive life." It has over 540 signatures so far and is open until mid-May.The group will then present their case to the Minister. “Adopting the CCC would allow Northern Ireland to take the lead in developing a more sympathetic and paced approach to the treatment of M.E.,” it adds.-----------------------------------------------------------------

I would love to help others and to sign up to donate blood or organs, unfortunately

there is a lifetime ban in N.I. for patients diagnosed with M.E. or CFS. Does anyone know the situation if you have a diagnoses of Fibromyalgia

Keep in mind there is no diagnostic test, we have a mountain of evidence of gross misdiagnoses, and some medical professionals don't even believe the illness exists so where does that leave a genuine patient with M.E. and the blood supply? The reason, given to me in writing by NIBTS, is that donating blood could make our illness worse.How does this rule apply to organ donation when we're dead?

Our guest speaker at the April Monthly Meeting was Dr. Joe Mc Veigh from University of Ulster.

Dr. McVeigh was very interested in the research that Dr. VanNess presented at Stormont in February.


His research is in the area of sports management and he also has a particular interest in Fibromyalgia. Dr. McVeigh presented his work via slideshow and explained how he is very keen to have fibromyalgia patients take part in research, he answered questions from the group who were all very impressed with his knowledge and interest of Fibromyalgia. It is hoped Dr. McVeigh could be instrumental in providing the cardiopulmonary exercise test (CPET) that Dr. VanNess presented in Stormont, to patients here.


Lord Mayor of Newry Michael Ruane Proclaims May 12th

Official ME/FMS Awareness Day The Lord Mayor of Newry, Michael Ruane, has today declared that Newry City recognizes May 12th as International M.E. and Fibromyalgia Awareness Day. It is estimated that there over 7000 ME sufferers in Northern Ireland alone, and the figures for Fibromyalgia are even higher. Currently, there are no effective treatments, yet many M.E. patients remain bed bound from onset and disabled for life. These illnesses affect men, women and children of all backgrounds and the cause is unknown. Myalgic Encephalomyelitis, sometimes referred to as Chronic Fatigue Syndrome (ME/CFS); is a neurological and autoimmune disease characterized by overwhelming fatigue, pain, headaches, cardiac symptoms, immune disorder, dizziness, and balance problems. Fibromyalgia (FM) is characterized by severe musculoskeletal pain and tenderness in many areas of the body, along with fatigue and sleep dysfunction, generalized or regional stiffness, and in some cases neurological and cognitive symptoms. The condition is long-term and painful. Newry and Mourne ME and Fibromyalgia Support Group are actively campaigning for better services in Northern Ireland. A petition asking Health Minister Edwin Poots to set up specialist clinics, and to adopt the Canadian Consensus Criteria for ME, is currently collecting signatures. It can be found here: http://tiny.cc/hx4hfx

Help us continue to raise public awareness so we can reach those affected, educate the medical profession, raise funds for


Newry & Mourne ME/FMS Support Group

Newsletter

5/1/2014 Edition 2 Volume 1

necessary services and end the stigma and discrimination that accompanies these diseases.

Newry & Mourne ME/FMS Support Group Celebrate May 12th



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On Monday 12th May 2014, Newry & Mourne ME/FMS Support Group held a fundraising evening and a celebration of ME/FMS Awareness day. The night was held in The Arts Centre Newry, and began with the Lord Mayor of Newry Michael Ruane officially opening the event. He also declared that from this year on Newry City will officially recognize May 12th as ME/FMS Awareness Day. Guests Dominic Bradley MLA, Danny Kennedy MLA, Mickey Brady MLA and Councilor Andy Moffat, were welcomed and some spoke of the work Newry & Mourne Support Group are currently involved in.

All members had a meal, provided by Cortney’s catering and The Shelbourne Bakery provided a

beautiful cake to celebrate the Support Groups 3rd Birthday. Afterwards a raffle took place, before the main event in the theatre. Dale Thomas provided the evening’s entertainment, as comedy hypnotist and Garth Brooks Impersonator.

Members had photos taken to advocate for ME/FMS, and Newry City Hall and Arts Centre were lit up blue for Awareness Day. Craigavon Civic Centre and Bessbrook Town Hall also went blue for ME/FMS awareness. The Committee of the support group would like to say thank you to each and every member and all our volunteers who have helped us over the last six month as we have been extremely busy from January 2014.

OUR DEAR FRIEND AND MEMBER EILEEN Mc CONKEYThe news of the passing of our long time member, Eileen Laura McConkey, brought much sadness to myself and many of the support group members who had come to know her, as not only a fellow sufferer, but a dearly loved friend. Eileen developed M.E. in 1996 and was, unfortunately, severely affected by the disease. We chatted many times by telephone and the conversations went from discussing the vast array of symptoms to sharing some laughter. The little twinkle in her eye was never far away despite the confines of her illness. Eileen told me that she had spent a large number of years doing voluntary work for The Samaritans and the urge to help others remained and was typical of her caring nature. She often wondered, as we all do at times, why her life had been stricken by this illness, yet she faced everyday with great courage and dignity. Eileen's love of fashion and shoes was always a cheerful topic for discussion and we often joked as to why we bought so many shoes yet were unable to walk for any reasonable length or



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Distance. The friendship and understanding Eileen received while attending the support group meetings in Newry meant a great deal to her also. Many, many times she shared with me the importance of being believed her illness was real, the importance of not having to constantly explain and the sense of belonging she felt from spending time with others in the same position. Thankfully, she was able to drive the long distance from Belfast to Newry to attend our monthly meetings, another example of her determination not to give up or let her lack of energy hold her back from finding some joy or happiness in her restricted life. On a number of occasions, the very effort to make it to the meetings resulted in Eileen only being able to attend for a short time yet even this didn't deter her from trying again the following month! I met Eileen's husband, Ward, at one of her art exhibitions and the beautiful display of her enormous talent was apparent. During the times we had often chatted on the phone, I learned many things about her life and the most important was the love and devotion shown by her husband and family in caring for her through the many difficult years of sickness. Eileen had always wanted to help with the running of the support group in some way and thankfully the occasion arose where we needed a special gift for a family who had lost a loved one to M.E. a few years ago. I asked Eileen if she would help out by doing a painting which would be unique and have special meaning to this family. She immediately agreed and went to great lengths to produce a work of art which was perfect for the occasion. Unfortunately, Eileen was unwell and not able to join us on the night of the presentation of her painting to this family, but her talent and thoughtfulness brought them much joy which continues to be their delight. Eileen confided and shared many aspects of her life with me but during the last few months, she said she had suffered enough. Though hard for some to understand, this was not giving up but a peaceful acceptance. We will all miss our dear friend yet I take comfort from the knowledge that her suffering is over. The memory of Eileen's struggle and admirable life will be remembered by our support group and be an example to others. Ward also takes comfort from the knowledge that Eileen is indeed in a



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better place. A place where there is no suffering, only joy and peace.......until we meet again.


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