Today marks the sixth anniversary of the tragic death of Sophia Mirza, aged 32, from the effects of severe myalgic encephalomyelitis, and our thoughts today are of Sophia and her family.
Sophia's mother, Criona Wilson, created a website to publish details and related correspondence with those concerned with Sophia's case. Here are some extracts from Sophia and M.E:
“The object of this site is to show how and what was done to Sophia, so that maybe through this, others will become aware of the horrors perpetrated on her and on many others suffering from this terrible disease”.
"The day before she died I promised Sophia that her life would help many other people. She answered "then it was all worth it". Those were the last words she spoke. This website is for all the thousands of sufferers who have M.E. and their families."
Criona and her daughter Roisin are also among the contributors to the ground-breaking independent documentary film Voices from the Shadows, produced by Natalie Boulton and Josh Biggs, mother and brother of a severe M.E sufferer.
Voices from the Shadows won the “Audience Favourite International Documentary Award” at its World Premiere at Mill Valley Film Festival last month.
Invest in ME is hosting two UK screenings of this important film in Norwich on 2nd December and London on 7th December. Please click here for details. Tickets must be ordered in advance so please order without delay if you wish to attend.
Criona has updated her website with correspondence over the course of this year with the Chief Medical Officer and Minister for Care Services, among others, on a page titled WHO Cares? Very sadly, this page concludes with:
“The answer I found is transparently clear: nobody, but nobody, cares.... enough.” CrÃona Wilson, November 2011.
Our hearts and sincere condolences go out to Criona and her family. Criona may be contacted via the website or by email sophiaandme@hotmail.co.uk
25 November 2011
24 November 2011
Leaflet for Let's do it for ME!
We now have a campaign leaflet that you can download here and print off as needed.
Many thanks to Jan Laverick for designing the leaflet and to Carole, Clive, Richard, Anita, Kathryn and Michael, for contributing their great photos.
Please take a look and let us know what you think.
Let's do it for ME!
Thank you for your support!
Many thanks to Jan Laverick for designing the leaflet and to Carole, Clive, Richard, Anita, Kathryn and Michael, for contributing their great photos.
Please take a look and let us know what you think.
Let's do it for ME!
Thank you for your support!
19 November 2011
Christmas Gifts for ME!
Your response to this appeal has been truly inspiring and you can see from the thermometer how far you have taken Invest in ME towards the £100,000 needed to fund the initial research proposals using the first-class facilities at the University of East Anglia research park in UK.
Our dream gift for this Christmas would be to reach that £100,000 target. Many supporters have been thinking creatively of ways in which this could be achieved and here are some suggestions for your on-line Christmas shopping and gifts you may like to give or to receive.
Please let us know, by email at fundraising4me@gmail.com or by leaving a comment here on the blog, if you are also using the spirit of Christmas to raise awareness or funds for Invest in ME this year, so that we can add your activity or event to the list at Let's do it for ME!
Raising funds for FREE when you search the web or shop on-line
- When doing your Christmas shopping on-line, don't miss the opportunity to raise funds for FREE for Invest in ME by searching the web and making your purchases through Everyclick's Search the Web and Give As You Live or though the Easyfundraising website.
- You can also raise funds for FREE for Invest in ME when you use eBay.
Please see our How To Help page for more about these options if you haven't signed up to them already, and please ask for more information or help if you need it, as these are such easy ways to raise funds for Invest in ME at no extra cost to you.
Handmade decorations and gifts
- Jane Hurst has already sold out of her handmade Christmas cards but still has packs of her wildlife photo greetings cards available to buy as gifts. She said: “We’ve been selling them for a long time now and have raised over £2000 for ME charities so I think people quite like them!” This year, all proceeds from Jane's cards go to Invest in ME's biomedical research fund. Click here for Pack 1 and here for Pack 2.
- Diana Hamilton aims to sell 100 of her handmade birdies with 50% of the profit donated as a lump sum to Invest in ME. The birdies are delightful folk-art decorations. Diana said: “I have recently been involved with a craft exhibition project for which I made the felt birds and thought that as I had made quite a few they would be perfect to raise money for the charity. I've set myself the challenge of making and selling 100 felt birdies by the end of the year!” You can follow Diana's progress on Twitter @100Birdies4ME
- Lynne Allan has created a page on Facebook to sell her wide range of beautiful Handmade Beaded Jewellery, generously donating all proceeds to Invest in ME. You can order via the page ME-2-U Creations with payment by PayPal.
Calendars for 2012
- This beautiful wildlife calendar is being sold by the author of the blog Just My Life on a print-on-demand basis on lulu.com, with all proceeds to Invest in ME's biomedicalresearch fund. Invest in ME will receive £2.00 for each calendar purchased. All photography was generously donated by G. Wayne Hendrix.
- ME Laid Bare is a cheeky calendar for 2012 featuring some good sports with ME – tastefully photographed and excellent value for money with all proceeds to Invest in ME's biomedical research fund.
Books about people with myalgic encephalomyelitis
Lost Voices: "Providing a voice for those severely affected with myalgic encephalomyelitis". This book is a high-quality, A4 landscape size with a laminated card cover with pictures, mostly in colour. For more information and to order from Invest in ME website, click here.
One Last Goodbye by Kay Gilderdale. Published by Ebury Press ISBN 978-0091939144 Available to buy in several stores and also on-line at Amazon here and in e-book format from The Random House group here. If you buy through the easyfundraising site, e.g. from Amazon or The Random House Group and choose Invest in ME as your cause, the charity will receive up to 2.5% of the price as a donation, with no extra cost to you.
Other Books
Barnaby Eaton-Jones, supporter of Invest in ME/Let's do it for ME and author of Lemon, a comedy thriller published by Hurst Publishing says: “My publisher has kindly said he'll take 10% off the price for M.E. sufferers, if you apply the code 'ME' (upper or lower case) at the checkout. So, if you want to buy a book by a fellow sufferer, that isn't about the illness and will hopefully make you chuckle, then pop over via this link.”
Let's do it for ME! and ME Awareness Shops
For a great choice of a range of items to give or receive as presents for all ages, please browse our on-line shop at Spreadshirt and at Cafe Press, with all proceeds direct to Invest in ME's biomedical research fund via PayPal. Many thanks to Jan Laverick and Carmel Hillary for their hard work on creating and running these shops.
Christmas Gift for ME!
We know that some people like to exchange charity gifts at Christmas as these are thoughtful gifts to give and receive, and are also an easy option if you are not sure what to buy someone or if you have difficulty shopping, so here is a page on Everyclick to simply donate to as a Christmas Gift for ME and here are templates in landscape or portrait you can use for anyone on your Christmas gift list to explain why you have chosen to give or receive this gift.
Other ways to raise awareness and funds this season
Carole and Clive Carrick will be doing another supermarket collection in December. If you would like to take a collection box to work or school or perhaps you'd like to have a coffee and mince pie event or a Christmas Party in aid of Invest in ME, please contact Invest in ME by:
Email: info@investinme.org
Phone: 02380 251719 or 07759 349743
FAX: 02380 000040
Post:
Invest in ME
PO Box 561
Eastleigh
SO50 0GQ
Hampshire
UK
Don't forget to let us know if you are also using the spirit of Christmas to raise awareness or funds for Invest in ME this year, so that we can add your activity or event to the list here.
Ready for Christmas shopping?
Let's do it for ME!
Thank you for your support!
Lost Voices: "Providing a voice for those severely affected with myalgic encephalomyelitis". This book is a high-quality, A4 landscape size with a laminated card cover with pictures, mostly in colour. For more information and to order from Invest in ME website, click here.
One Last Goodbye by Kay Gilderdale. Published by Ebury Press ISBN 978-0091939144 Available to buy in several stores and also on-line at Amazon here and in e-book format from The Random House group here. If you buy through the easyfundraising site, e.g. from Amazon or The Random House Group and choose Invest in ME as your cause, the charity will receive up to 2.5% of the price as a donation, with no extra cost to you.
Other Books
Barnaby Eaton-Jones, supporter of Invest in ME/Let's do it for ME and author of Lemon, a comedy thriller published by Hurst Publishing says: “My publisher has kindly said he'll take 10% off the price for M.E. sufferers, if you apply the code 'ME' (upper or lower case) at the checkout. So, if you want to buy a book by a fellow sufferer, that isn't about the illness and will hopefully make you chuckle, then pop over via this link.”
Let's do it for ME! and ME Awareness Shops
For a great choice of a range of items to give or receive as presents for all ages, please browse our on-line shop at Spreadshirt and at Cafe Press, with all proceeds direct to Invest in ME's biomedical research fund via PayPal. Many thanks to Jan Laverick and Carmel Hillary for their hard work on creating and running these shops.
Christmas Gift for ME!
We know that some people like to exchange charity gifts at Christmas as these are thoughtful gifts to give and receive, and are also an easy option if you are not sure what to buy someone or if you have difficulty shopping, so here is a page on Everyclick to simply donate to as a Christmas Gift for ME and here are templates in landscape or portrait you can use for anyone on your Christmas gift list to explain why you have chosen to give or receive this gift.
Other ways to raise awareness and funds this season
Carole and Clive Carrick will be doing another supermarket collection in December. If you would like to take a collection box to work or school or perhaps you'd like to have a coffee and mince pie event or a Christmas Party in aid of Invest in ME, please contact Invest in ME by:
Email: info@investinme.org
Phone: 02380 251719 or 07759 349743
FAX: 02380 000040
Post:
Invest in ME
PO Box 561
Eastleigh
SO50 0GQ
Hampshire
UK
Don't forget to let us know if you are also using the spirit of Christmas to raise awareness or funds for Invest in ME this year, so that we can add your activity or event to the list here.
Ready for Christmas shopping?
Let's do it for ME!
Thank you for your support!
The LDIFME 2011 Xmas logo is a re-working of the LDIFME logo using a snowflake design by Chris Spooner.
14 November 2011
Giles Meehan on video - Let's do it for ME!
Giles says:
"I spent 4 happy years at Cambridge University, studying Structural Engineering. Soon after I started my first job, I came down with cytomegalo virus (CMV). I was extremely ill in bed for several weeks, with a huge range of symptoms. Despite trying to force myself back into work, I basically never recovered. There were other complications too, and I was eventually diagnosed with ME (Myalgic Encephalomyelitis). I have spent most of my twenties virtually housebound (about "25%-30% well" on the disability scales). But thankfully in recent years I have been getting better. I am now working part time as a freelance TV producer, and have made caravanning and boating programmes with a friend. I’m very aware that I still haven't made a full recovery, but I am going out more, and getting back to other activities too - and hope to continue getting better!
My videos are really only a way for me to put together some of my thoughts while I've been ill, about what ME is and how people might be helped to get better. For some people severely affected, though, a full recovery may not be possible, so it is important to try and understand and support everyone. I am quite surprised and humbled that so many people have already taken an interest in what I'm saying, and that it relates so closely to their experiences. If my video blogs can help anyone else at all in any small way then I’m delighted, it’s more than I was hoping for. Interestingly, even my good friends who have known me closely through my illness, have been surprised and hadn't realised just what it can really be like having ME.
I plan to carry on making more video blogs over the coming weeks and months. There is plenty I'd like to say, particularly about treatments and therapies that I have tried, and friends with ME have tried - and about our experiences. My recovery so far has been very slow and gradual, and I believe in my case is thanks to a lot of rest, careful pacing and managing my energy, as well as a range of good nutritional supplements, a gluten free and dairy free diet, chiropractic therapy, and more...
Despite over 4,000 published medical research papers over the years, explaining so many things that go wrong physiologically in the bodies of people who have ME, doctors and patients still do not know or understand the underlying mechanism or causes. This is why it is essential to support serious biomedical research into this illness in this country now." Giles Meehan.
- Many thanks to Giles for making this video as part of his series of video blogs, which are very helpful and informative for anyone wanting to understand more about myalgic encephalomyelitis, including sufferers themselves, family, friends, carers and professionals, and which may be viewed via Giles' excellent website Get Well From ME. Thank you Giles and to all those who join us in saying ...
Let's do it for ME!
13 November 2011
Tea for M.E!
From Facebook Community Page Tea4M.E:
Raising money for M.E. research - with cake! Tea4MEbook@gmail.com
"I find that cake is an excellent solution to many of life's problems" – Evelyn Smythe*, Doctor Who and the Marian Conspiracy.
M.E. (Myalgic Encephalomyelitis) is a chronic neuro-immune illness characterised by debilitating fatigue, pain, ‘brain fog’ and post-exertional malaise, among many other symptoms. There is no cure. Research has discovered that sufferers have many biomedical anomalies including poorly functioning natural killer cells, abnormalities in brain matter and brain metabolism, abnormalities in the autonomic nervous system and mitochondrial disfunction. Sufferers have a reduced life expectancy and an increased risk of cancer and heart problems. There are currently no medical treatments on offer in the UK.
TEA (as in ‘afternoon tea’ or ‘tea party’) is a meal or snack that may include cake, scones, biscuits, muffins, crumpets and pastries. It is characterised by its deliciousness.
TEA4M.E. aims to use the deliciousness of TEA to combat the awfulness of M.E. by producing a fund-raising teatime recipe book.
Our plan is to make this book available for 12th May 2012 (the twentieth anniversary of International ME Awareness Day). As well as producing the recipe book, we hope to inspire people to hold fund-raising ‘tea parties for M.E.’
All proceeds from TEA4M.E. are to go towards Invest in M.E.’s proposal for a desperately needed UK Centre of Excellence for M.E.
*Ever wondered how to make Evelyn Smythe’s Chocolate Time-Travelling Temptation Cake? Buy this book and find out!
TEA 4 M.E. RECIPE SUBMISSIONS
We would love to receive recipe submissions for teatime treats from M.E. sufferers, their friends or family, anyone who’s keen to support medical progress, or anyone who just likes cake.
The deadline for recipe submissions is 27 November 2011.
All submissions will be gratefully received but they may not all be included in the finished book – for example, if we receive 18 recipes for fruit cake, we will have to choose which one to use. However everyone who submits will (to the best of our endeavours) receive an acknowledgement in the book.
As many ME sufferers have digestive problems or food intolerances, we would like to raise awareness of this by including recipes that cater for special diets. Gluten-free and/or dairy-free recipes would be especially welcome.
Please submit recipes and any enquiries to: Tea4MEbook@gmail.com
PLEASE bear in mind that this project is being run by an ME sufferer. This means that weeks may pass when emails may not be acknowledged due to ill health; not getting an immediate reply doesn’t mean that your submission isn’t appreciated.
Please include the following details:
Recipe name (e.g. ‘Aunt Jane’s Cocoa Crispies’)
Contributor (your name as you would like it to appear in the book)
Ingredients (in metric if possible, please)
Instructions (step-by-step guide to making the recipe. Remember to include oven temperature and cooking time)
If you would like to include a short personal comment about the recipe – eg what it means to you, a memory regarding it – please do so, although please understand that this may not be included in the book for reasons of space etc.
Lists of ingredients are not subject to copyright, however instructions are. Therefore please do not send in recipes that have been copied word-for-word from another source as we don’t want to get into trouble. (A web search for ‘recipe copyright’ will provide many further details.)
Ready to submit your recipe?
Let's do it for ME!
Many thanks to all those involved in this delightful project!
Raising money for M.E. research - with cake! Tea4MEbook@gmail.com
"I find that cake is an excellent solution to many of life's problems" – Evelyn Smythe*, Doctor Who and the Marian Conspiracy.
M.E. (Myalgic Encephalomyelitis) is a chronic neuro-immune illness characterised by debilitating fatigue, pain, ‘brain fog’ and post-exertional malaise, among many other symptoms. There is no cure. Research has discovered that sufferers have many biomedical anomalies including poorly functioning natural killer cells, abnormalities in brain matter and brain metabolism, abnormalities in the autonomic nervous system and mitochondrial disfunction. Sufferers have a reduced life expectancy and an increased risk of cancer and heart problems. There are currently no medical treatments on offer in the UK.
TEA (as in ‘afternoon tea’ or ‘tea party’) is a meal or snack that may include cake, scones, biscuits, muffins, crumpets and pastries. It is characterised by its deliciousness.
TEA4M.E. aims to use the deliciousness of TEA to combat the awfulness of M.E. by producing a fund-raising teatime recipe book.
Our plan is to make this book available for 12th May 2012 (the twentieth anniversary of International ME Awareness Day). As well as producing the recipe book, we hope to inspire people to hold fund-raising ‘tea parties for M.E.’
All proceeds from TEA4M.E. are to go towards Invest in M.E.’s proposal for a desperately needed UK Centre of Excellence for M.E.
*Ever wondered how to make Evelyn Smythe’s Chocolate Time-Travelling Temptation Cake? Buy this book and find out!
TEA 4 M.E. RECIPE SUBMISSIONS
We would love to receive recipe submissions for teatime treats from M.E. sufferers, their friends or family, anyone who’s keen to support medical progress, or anyone who just likes cake.
The deadline for recipe submissions is 27 November 2011.
All submissions will be gratefully received but they may not all be included in the finished book – for example, if we receive 18 recipes for fruit cake, we will have to choose which one to use. However everyone who submits will (to the best of our endeavours) receive an acknowledgement in the book.
As many ME sufferers have digestive problems or food intolerances, we would like to raise awareness of this by including recipes that cater for special diets. Gluten-free and/or dairy-free recipes would be especially welcome.
Please submit recipes and any enquiries to: Tea4MEbook@gmail.com
PLEASE bear in mind that this project is being run by an ME sufferer. This means that weeks may pass when emails may not be acknowledged due to ill health; not getting an immediate reply doesn’t mean that your submission isn’t appreciated.
Please include the following details:
Recipe name (e.g. ‘Aunt Jane’s Cocoa Crispies’)
Contributor (your name as you would like it to appear in the book)
Ingredients (in metric if possible, please)
Instructions (step-by-step guide to making the recipe. Remember to include oven temperature and cooking time)
If you would like to include a short personal comment about the recipe – eg what it means to you, a memory regarding it – please do so, although please understand that this may not be included in the book for reasons of space etc.
Lists of ingredients are not subject to copyright, however instructions are. Therefore please do not send in recipes that have been copied word-for-word from another source as we don’t want to get into trouble. (A web search for ‘recipe copyright’ will provide many further details.)
Ready to submit your recipe?
Let's do it for ME!
Many thanks to all those involved in this delightful project!
8 November 2011
Show Us Your Best Side Competition - Winner Announced!
A few weeks ago we launched the Show Us Your Best Side photo competition to raise awareness of, and make the support there is for, Invest in ME's planned biomedical research centre as visible as possible. The competition has really helped to get the LDIFME photo album off to a flying start! Thank you to everyone who took part, and to everyone raising funds for Invest in ME.
Our album:
Please keep sending your photos to us at fundraising4me@gmail.com to add to our album.
We've been sent a good variety of photos and details, thank you to everyone who has taken part to raise awareness so far. When it came to judging the competition, we looked to Invest in ME to choose the winning photo. While it was agreed there were many good entries, and several were very strong contenders, it was unanimously decided by Invest in ME that.. the winner should be.. the Mawer family!
Congratulations to Tanya, Tara, Dave, Keisha, Tasha!
Tanya Mawer sent the following response to us on hearing of the competition result:
"Hi my name's Tanya (42) mum to Tara (11) who was diagnosed with CFS in November 2010. Thank you all so much for voting for us and choosing our family group photo as the winner – we are all extremely thrilled and feel very honoured to win the photo competition, I would like you to all know the news has put a lovely big smile on Tara's face.
Prior to falling ill Tara was extremely active (almost to the point of hyperactive!) she did tap and modern dance and musical theatre and loved to sing. We used to tease her as she used to sing instead of talk and dance everywhere instead of walk. Sadly, she's now had to give up on all of those activities.
I feel we are very lucky, and think all in all we have a great team behind us at our local Children’s hospital: -
All of whom are brilliant, though not very forthcoming with information – we found out about virtual school via TYMES Trust* and feel that the medical profession only want to push Tara back into “normal” routines, environments and school without appreciating fully that if she were able to do that – she would! Tara has chronic back ache, that we treat with wheat bags, heat gel, calpol and nurofen (our one off prescription of codeine now has gone), we recently stumbled upon a “pain be gone” pen at our local chemists which we trialled overnight and then bought the next day – it works sort of like a tens machine and is helping Tara to become a little more comfortable with her back, although it doesn’t entirely remove the pain as it stubbornly refuses to go. She also suffers with nausea all the time too, we're onto our second anti-sickness drug which we give her three times a day with her meals, in an effort to find something to relieve the nausea for her – and hurrah! It’s working (but shhhhh don’t tempt fate). Other than that she also suffers from headaches, sore throats, joint and muscle pains, burning eyes, pins and needles, swollen lymph glands in her neck, stomach pains, noise sensitivity (she wears ear defenders when I hoover or use the hair dryer etc - only certain sounds seem to upset her, not all noises) and of course tiredness. She finds being in large noisy places such as shopping centres and schools too noisy and too exhausting, social interaction on a large scale is too much for her.
We're currently looking into different schooling options for Tara, as we tried unsuccessfully to get her back to school by sending her for the first two lessons every day. This gradually wore her out ending in a relapse which lasted a month. The Registrar at our recent meeting seems to think the Nisai Virtual academy route is a great idea, so we are pursuing that and trying to get the school to agree to fund it. At this moment in time the school are not agreeable to funding virtual school, although we’re still doggedly negotiating options with them. We have Tara back at her “mainstream” school for one Maths lesson on Mondays, Tuesdays and Wednesday. She also attends OT Group for an hour on a Thursday and Hydrotherapy for half hour on a Friday. Unfortunately, for the time being, this is her limit and so anything extra (such as virtual school) would be too much right now. We are in the process of applying for a Blue Badge (fingers crossed we get it) and taking everything a day at a time.
As a family we are battling with the ups and downs this illness brings. During May this year, feeling frustrated and useless we decided to raise funds for the TYMES Trust* and as a family comprising of myself, Tara (who did it in the wheelchair), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13), and Taras best friend Abby, we recently completed a 5 mile sponsored walk and successfully achieved a total of £607.06, which was fantastic.
I have attached a photo of myself and Tara (on a good day) and the family on the day of our sponsored walk.
If you wish to contact me my email address is: tanyamawer@hotmail.com I am happy for my email address to be shown, if anyone else in the same boat wants to get in touch - it's good to support and help each other wherever possible.
Whatever else you do, keep smiling
Best regards
Tanya and the rest of the Mawer family"
In a very generous twist, Tara has chosen to donate her prize to a raffle to raise funds for Invest in ME. Such a selfless and positive thing to do, Tara is clearly determined to make a difference to others, despite being very unwell herself. We wish Tara and her family all the very best and are touched to have helped brighten their day with this news.
*TYMES Trust - The Young ME Sufferers Trust - is the longest-running UK charity for children and young people with myalgic encephalomyelitis and won the Queen's Award for its voluntary services in 2010. Executive Director Jane Colby, an ex-headteacher with personal experience of ME, kindly commented in our Guestbook when our campaign first launched in July:
"Quality biomedical research will ensure that people with ME are taken seriously. We want to see the work of Dr John Chia on enteroviruses replicated in the UK and further work on enteroviruses funded. Any centre that can do that gets our vote."
Thank you to everyone who sent in their photos and to all our supporters for raising awareness and funds for Invest in ME and the planned research centre.
Please keep sending us your photos at fundraising4me@gmail.com. We wish to build on the success of this competition and will be selecting a further photo each month to be highlighted on the LDIFME blog. All photos sent to us by midnight November 30th will be eligible for the Photo of the Month for November.
Our album:
Please keep sending your photos to us at fundraising4me@gmail.com to add to our album.
We've been sent a good variety of photos and details, thank you to everyone who has taken part to raise awareness so far. When it came to judging the competition, we looked to Invest in ME to choose the winning photo. While it was agreed there were many good entries, and several were very strong contenders, it was unanimously decided by Invest in ME that.. the winner should be.. the Mawer family!
Congratulations to Tanya, Tara, Dave, Keisha, Tasha!
 |
| Tanya (Mum), Tara (11), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13). |
Tanya Mawer sent the following response to us on hearing of the competition result:
"Hi my name's Tanya (42) mum to Tara (11) who was diagnosed with CFS in November 2010. Thank you all so much for voting for us and choosing our family group photo as the winner – we are all extremely thrilled and feel very honoured to win the photo competition, I would like you to all know the news has put a lovely big smile on Tara's face.
Prior to falling ill Tara was extremely active (almost to the point of hyperactive!) she did tap and modern dance and musical theatre and loved to sing. We used to tease her as she used to sing instead of talk and dance everywhere instead of walk. Sadly, she's now had to give up on all of those activities.
I feel we are very lucky, and think all in all we have a great team behind us at our local Children’s hospital: -
- Consultants Senior Registrar (we have never had an appointment with the actual consultant),
- Physio – who initially wanted us to do progressive exercise – which we tried and stopped after 4 days as it made Tara worse, so now we do a half hour hydrotherapy session per week instead,
- OT – who runs the weekly hour long “rehab group” with other CFS children,
- Hospital school teacher – who was Tara’s only teacher for the past year and works from a room on one of the Children’s wards
- Clinical Psychologist – who is trying to help Tara come to terms with her illness.
All of whom are brilliant, though not very forthcoming with information – we found out about virtual school via TYMES Trust* and feel that the medical profession only want to push Tara back into “normal” routines, environments and school without appreciating fully that if she were able to do that – she would! Tara has chronic back ache, that we treat with wheat bags, heat gel, calpol and nurofen (our one off prescription of codeine now has gone), we recently stumbled upon a “pain be gone” pen at our local chemists which we trialled overnight and then bought the next day – it works sort of like a tens machine and is helping Tara to become a little more comfortable with her back, although it doesn’t entirely remove the pain as it stubbornly refuses to go. She also suffers with nausea all the time too, we're onto our second anti-sickness drug which we give her three times a day with her meals, in an effort to find something to relieve the nausea for her – and hurrah! It’s working (but shhhhh don’t tempt fate). Other than that she also suffers from headaches, sore throats, joint and muscle pains, burning eyes, pins and needles, swollen lymph glands in her neck, stomach pains, noise sensitivity (she wears ear defenders when I hoover or use the hair dryer etc - only certain sounds seem to upset her, not all noises) and of course tiredness. She finds being in large noisy places such as shopping centres and schools too noisy and too exhausting, social interaction on a large scale is too much for her.
We're currently looking into different schooling options for Tara, as we tried unsuccessfully to get her back to school by sending her for the first two lessons every day. This gradually wore her out ending in a relapse which lasted a month. The Registrar at our recent meeting seems to think the Nisai Virtual academy route is a great idea, so we are pursuing that and trying to get the school to agree to fund it. At this moment in time the school are not agreeable to funding virtual school, although we’re still doggedly negotiating options with them. We have Tara back at her “mainstream” school for one Maths lesson on Mondays, Tuesdays and Wednesday. She also attends OT Group for an hour on a Thursday and Hydrotherapy for half hour on a Friday. Unfortunately, for the time being, this is her limit and so anything extra (such as virtual school) would be too much right now. We are in the process of applying for a Blue Badge (fingers crossed we get it) and taking everything a day at a time.
As a family we are battling with the ups and downs this illness brings. During May this year, feeling frustrated and useless we decided to raise funds for the TYMES Trust* and as a family comprising of myself, Tara (who did it in the wheelchair), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13), and Taras best friend Abby, we recently completed a 5 mile sponsored walk and successfully achieved a total of £607.06, which was fantastic.
I have attached a photo of myself and Tara (on a good day) and the family on the day of our sponsored walk.
If you wish to contact me my email address is: tanyamawer@hotmail.com I am happy for my email address to be shown, if anyone else in the same boat wants to get in touch - it's good to support and help each other wherever possible.
Whatever else you do, keep smiling
Best regards
Tanya and the rest of the Mawer family"
In a very generous twist, Tara has chosen to donate her prize to a raffle to raise funds for Invest in ME. Such a selfless and positive thing to do, Tara is clearly determined to make a difference to others, despite being very unwell herself. We wish Tara and her family all the very best and are touched to have helped brighten their day with this news.
*TYMES Trust - The Young ME Sufferers Trust - is the longest-running UK charity for children and young people with myalgic encephalomyelitis and won the Queen's Award for its voluntary services in 2010. Executive Director Jane Colby, an ex-headteacher with personal experience of ME, kindly commented in our Guestbook when our campaign first launched in July:
"Quality biomedical research will ensure that people with ME are taken seriously. We want to see the work of Dr John Chia on enteroviruses replicated in the UK and further work on enteroviruses funded. Any centre that can do that gets our vote."
Thank you to everyone who sent in their photos and to all our supporters for raising awareness and funds for Invest in ME and the planned research centre.
Please keep sending us your photos at fundraising4me@gmail.com. We wish to build on the success of this competition and will be selecting a further photo each month to be highlighted on the LDIFME blog. All photos sent to us by midnight November 30th will be eligible for the Photo of the Month for November.
5 November 2011
Announcement - New Matched Donation Period
With a big THANK-YOU to James Wythe, his family and friends!
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| James Wythe |
We are delighted to announce another matching period - this time for donations made to any fundraising page on Everyclick belonging to the Let's do it for ME! fundraising group, £ for £ to a total of £3,000.
Effective immediately and ending midnight Wednesday 30th of November or until such time as the total has been reached.
Please note that this matching period will apply to all donations made via Everyclick to the pages linked to Let's do it for ME! fundraising group only, to make it easier to keep an eye on donations as they come in. The matched amount will be added at the end of the matched donation period.
The various fundraising pages linked to Let's do it for ME can be found here.
They include Paul Kayes' Sponsored Weight Loss and Amy's Sponsored Screen-Free Weekend from11th-13th November and many more. You can choose to support any of the individual sponsored events listed on the group page, set up your own fundraising page, or donate to the general Let's do it for ME! page here.
You can continue to donate by any other means, e.g. cheque or PayPal on Invest in ME website, during the matching period, but only donations via the Everyclick fundraising pages will be doubled during this period of time.
Are ready to double the value of your donations?
Let's do it for ME!
UPDATE: You did it! Together we reached the £3000 target by midnight 30th November, so £6000 with James' generous matching sponsorship and with almost £500 extra in Gift Aid!
THANK-YOU so much to James, his family and friends, all the fundraisers and their generous sponsors, including the lovely Ladies at Boots Thornaby and The VU Sound, whose donation was a delightful surprise! Click here to see the full list of sponsors - thank you all!
*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.
Carmel Hillary's new on-line shop!
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| Carmel Hillary |
We are delighted to announce the opening of another on-line shop selling a variety of items for M.E Awareness with all proceeds donated directly to Invest in ME. This shop belongs to Carmel Hillary, staunch supporter of Invest in ME and the Let's do it for ME! campaign for a UK centre of excellence for biomedical ME research and treatment.
Carmel has had M.E for 8 years. She had started a fundraising page on Everyclick in August featuring her own T-shirt design “M.E. – it's not for wimps”, which has already raised £378 in donations for Invest in ME, including Gift Aid. Carmel said:
“I was recently in hospital, suffering severe chest pains and breathlessness.
I came up against doctors who had never heard of M.E or CFS, so the first night of my stay I was almost sent home, until I collapsed after being made to walk up the corridor.
I was even asked if I was depressed, yet I was so scared with the terrible chest pains.
It was not until the next day - when I explained my old job as an Advance Personal Trainer and Sports Therapist who was struck down with viral meningitis several times and then went on to develop M.E – that I was then given the respect I deserved.
The consultant I went on to see and his team were marvellous, and without their support I may not be here to tell this story, as he knew about M.E, looked beyond my diagnosis and treated my condition as an individual - I had to have blood thinning injections of Warfarin for a blood clot.
I do not want this to happen to anyone else. We need to get together to dig deep ourselves.
I would be very grateful if you are able to donate something and support me in making this centre real, making M.E known as a disabling illness with treatment for us all.”
The “M.E – it's not for wimps T-shirt” is now available for sale in Carmel's on-line shop, alongside a number of other designs and products for ME Awareness, ranging from pyjamas to Thermos flasks and also including car stickers by popular demand.
We would like to join Carmel in thanking her friend Charlie for providing some great logos for her to use and we would like to say a huge THANK-YOU to Carmel for all the work she has put into setting up this great shop!
In the mood for some more on-line retail therapy?
Let's do it for ME!
Click here to visit Carmel's shop.
*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted here on the Invest in ME website.
4 November 2011
Cheeky ME 2012 Calendar
Ever mindful of opportunities for raising awareness and funds for biomedical research and treatment, some banter among friends following a chance remark led to the idea of producing a cheeky calendar for 2012 featuring men with myalgic encephalomyeltis, which was greeted with a resounding cry of, “Let's do it for ME!”
A page was set up on Everyclick to take the bids and pledges that had begun rolling in to encourage the lads to take part, raising £200 in itself within 24 hours of the post on Facebook requesting volunteer models for the calendar.
Several more good sports proceeded to give freely of their ideas, time, expertise and efforts, including researching production options, coordinating the project, designing, and of course, posing for and taking the photos themselves.
Andrew Quince of Sound North kindly created a website to advertise and order the calendars and Invest in ME volunteered to distribute the finished product.
The result of this great team effort is that, two months since that first cheeky idea, M.E Laid Bare was sent for printing and is now available to order hot off the press!
Price per calendar including P&P is £6 for delivery in UK, £6.75 in Europe, £7.50 outside Europe. Your payment is direct to Invest in ME's PayPal account and all proceeds, above printing and delivery costs and PayPal transaction charges, go to Invest in ME's biomedical research fund.
Orders were being placed from various countries around the world within minutes of the site going live and customers are describing the calendars as tastefully photographed, professionally made, good fun and great value for money, so are you ready to place your order?
Click here and Let's do it for ME!
Thank you for your support!
Many thanks to all those involved in this project, including Darren Magee for his creative work on the design of the calendar and Andrew Quince of Sound North for creating and hosting the Cheeky ME website.
The calendars were printed by ModRed.
The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.
A page was set up on Everyclick to take the bids and pledges that had begun rolling in to encourage the lads to take part, raising £200 in itself within 24 hours of the post on Facebook requesting volunteer models for the calendar.
Several more good sports proceeded to give freely of their ideas, time, expertise and efforts, including researching production options, coordinating the project, designing, and of course, posing for and taking the photos themselves.
Andrew Quince of Sound North kindly created a website to advertise and order the calendars and Invest in ME volunteered to distribute the finished product.
The result of this great team effort is that, two months since that first cheeky idea, M.E Laid Bare was sent for printing and is now available to order hot off the press!
Price per calendar including P&P is £6 for delivery in UK, £6.75 in Europe, £7.50 outside Europe. Your payment is direct to Invest in ME's PayPal account and all proceeds, above printing and delivery costs and PayPal transaction charges, go to Invest in ME's biomedical research fund.
Orders were being placed from various countries around the world within minutes of the site going live and customers are describing the calendars as tastefully photographed, professionally made, good fun and great value for money, so are you ready to place your order?
Click here and Let's do it for ME!
Thank you for your support!
Many thanks to all those involved in this project, including Darren Magee for his creative work on the design of the calendar and Andrew Quince of Sound North for creating and hosting the Cheeky ME website.
The calendars were printed by ModRed.
The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.