29 January 2014

If it's Tuesday - it must be Susie! Furry fundraiser for Invest in M.E.!

Since I began dog-sitting for Invest in ME, my calendar has become covered in regular pencilled-in sweet Susie-spots, marking the times this furry lass comes to fill the dog-shaped hole at my house. Susie the Whippet Cross has cuddled her special place into my heart, and from the reaction I get when I post photos and snippets about her online, into the hearts of her many other “spoonie” fans, too! 

Nobody seems to know exactly with whom, in canine genetic terms, her Whippet-y part is crossed. Brindled and lop-eared, with her long tail and dinky legs, her parents must have made an adorable “little and large” couple! Her human dad, who used to be a ministerial colleague of mine when I was still well enough to work, and her lovely human mum, adopted Susie over a decade ago as a rescue. 

I remember Susie as a pup lighting up our staff meetings, scampering around with her winning ways among Filofaxes and biscuit crumbs. In those days, I came home to a dog of my own. I never imagined then that M.E. would soon end my career, nor that Susie and I would meet in quite a different context, changed roles, as sitter and sat! 

Now, as she's becoming an old lady, profoundly deaf and with failing sight and an unreliable bladder, I'm so glad to say she treats my place as a regular home from home. She doesn't demand long walks, just a run round the garden between snoozes, somebody to dish out her dog-food and a lap for cuddles. 

It's good to know that through this win-win situation, Susie doesn't have to face the trauma of kennels, her family has peace of mind that she is happy and well loved while they're away, and modest sums in lieu of kennel fees are donated to Invest in ME each time towards biomedical research, so desperately needed by all of us with this devastating condition. 

I always feel so privileged to share my limited “spoons” with Susie. (In fact, I'm sure she even slips a few extra “spoons” my way when I'm not looking!) 

Well, excuse me, I must prepare to be licked and loved; my calendar says it's nearly Susie time again!

-Joyce & Susie xxx

27 January 2014

From Mama Chill:  Hey, So, just a little update to keep you all...er...up to date , on how sales are going of Tha Runnin On Empty  merchandise 1 & 2 ,  & Can You See Me Merchandise.

For those that dont know........and you should know by now,  unless you were kidnapped by aliens and have spent the last few weeks being prodded and probed, all profit from these ranges will be donated to Invest In ME with each months payout.  As of today that profit is £137.00 and rising.

So a huge thanx to everyone purchasing, Facebook sharing, Twitter Re-tweeting & generally getting involved, glad you're liking the designs.

I'm a novice designer, still learning as we speak, BUT.....for those that remember the  M.E inspired "One stupid Dot" T-shirt?   I have been asked on a number of occassions if i could bring that back, so having spent the last fortnight working on it, I have come up with a new Super Uber updated version, It will be available instore from March, so there will be plenty of time to purchase for Mays awareness week, and I will be teasing you nearer the time as to its look.

For now this is the M.E range available. All colours can be changed :-  Runnin On Empty 1 :


Runnin On Empty 2:...............


Can You See ME......

All available from My Music store: http://wwwmamachill.dizzyjam.com/  
& dont forget, Once your item arrives you can upload a picture to the store, just click on any item scroll down and not only will you see some of the others who've uploaded so far, you will be able to add your own, along with comments if you choose, so lets keep this rolling.  BIG THANX, Stay blessed, Back Before Elvis :) XXX 


12 January 2014

IIMEC9 - Synergising Research into ME

Invest in ME
The 9th Invest in ME
International ME Conference 2014
Synergising Research into ME

Welcome to IIMEC9 - the 9th Invest in ME International ME Conference 2014 in Westminster, London, UK, on 30th May 2014.
Today Invest in ME announce some of the speakers at the 2014 conference.
The key to resolving, treating and curing ME lies in biomedical research.
Healthcare staff need to be aware of the latest biomedical research into ME as well as the multiple symptoms exhibited by ME patients and of the possible treatments available and future research directions.
Benefits of attending Invest in ME 2014 Conference
o   Increase your understanding of diagnosis, treatment and management of ME
o   Explore current and future biomedical research into ME
o   Assess the role of immunological markers in ME
o   Learn about ongoing clinical trials using Rituximab to treat ME patients
o   Learn about inflammation in the CNS and its contribution to neurological disease
o   Learn about the function of the immune response in the gut
o   Share and exchange ideas with the leading practitioners in the field

Who should attend?
IIMEC9 will be of interest to:
Specialists in ME (CFS)
GPs with an interest in ME (CFS)
Palliative care nurses
Occupational Therapists
Specialists in pain management
Specialists in care of the chronically ill
Community nurses
All trainees in these disciplines
ME Support groups and charities 

Conference fee includes:
Entrance to the conference, lunch & refreshments, full conference documentation and certificate of accreditation (for professionals).
Confirmed Speakers:
Invest in ME are pleased to announce the following speakers at the conference -   
Professor Jonathan Edwards
Emeritus Professor of Connective Tissue Medicine University College London (UCL), UK
Associate Professor Mady Hornig
Center for Infection and Immunity (CII), Columbia University Mailman School of Public Health New York, USA
Professor Sonya Marshall-Gradisnik
Associate Professor, Biochemistry, Griffith University, Australia
Professor Julia Newton
Clinical Professor of Ageing and Medicine, Institute for Ageing and Health, Newcastle University and Honorary Consultant Physician, Royal Victoria Infirmary, UK
Dr James Baraniuk
Professor of Medicine at Georgetown University Medical Centre, USA
Dr Ian Gibson
Former Dean of Biological Sciences, University of East Anglia
Additional speakers are expected to be announced shortly

The conference follows the Invest in ME Biomedical Research into ME 4 seminar which covers the major initiatives in ME research being performed and in which these speakers will also participate.
As the Invest in ME initiated and funded research becomes underway at UEA (gut microbiome) and UCL (rituximab clinical trial) the conference will reflect the research being performed and focus on synergizing the research elements from around the world to find cause and provide treatments for this disease.
Also present at the conference will be representatives of the European ME Alliance (EMEA) as the EMEA AGM takes place after the conference. 
CPD Accreditation from the Royal colleges has been applied for and we hope to obtain the maximum credits for the conference, as in previous years.

How can we ensure ME research and patient care benefit from the latest thinking in ME/CFS and related areas of research?  What is the best way forward?
The Invest in ME conferences have attracted presenters and delegates from fifteen countries and our DVDs of the conferences have been distributed to over 20 countries in Europe, USA, Canada, Australia and New Zealand.
Conference Registration:
Full details of the conference can be found at this address - click here.
IiME are again offering a discounted rate for healthcare staff who attend in connection with a local ME Support Group. IiME welcome all professionals who are working with, or have an interest in, ME/CFS.
Should you have any further questions relating to the conference please contact us at: meconference@investinme.org
We look forward to welcoming you to the conference,
Invest in ME

Invest in ME

UK Registered Charity Nr. 1114035
Invest in ME, PO BOX 561, Eastleigh SO50 0GQ, Hampshire, UK

Support ME Awareness - Invest in ME

8 January 2014

Letters for Louise- update!

Hello everyone!

Well first of all- Happy New Year!

Back in September, I started a project to raise awareness of ME- what it's REALLY like, through the eyes of us who live with it day in, day out. After talking to a friend about the stigma surrounding ME,  how most of us experience disbelief, a lack of understanding and neglect, I decided to put together a book sharing our experiences. The idea is that ME sufferers write a letter (anonymously unless they ask to be named) to ANYONE who has shown hostility towards them about their ME. That could be medical professionals, friends, family, colleagues, society in general or anyone else who has affected them. I'm going to be self-publishing the book and all profits will be going to none other than the wonderful Invest in ME!

The project got off to a fantastic start and I was sent some beautifully written, heartfelt letters. As people wrote more and more letters, the shape of the book started to broaden; some people chose to write some very touching letters addressed to people who HAD been there for them, who had believed them and respected them, and what that meant to them. A couple of people have also chosen to write to their own bodies, to the ME diagnosis itself, which has been really powerful. Just to give you an example of how brilliant these letters are, here's a little taster:

'... You told me continuously that I had a confidence issue and that I just had to put mind over matter. Do you know how hard that made it for me? Do you know half the time that you caught me crying was because I was so scared of what you were going to force me to do next? I had so many horrible effects from that; extreme payback, all of which you completely ignored. And then you wondered why I wasn't getting better. The things you'd say made it out like I didn't want to get better.'

All of the letters that I have are fantastic: they are thought-provoking, honest and capture the frustration and anger that comes from this illness. Many have had me in tears! I'm seriously grateful to everyone who has taken the time and effort to contribute so far as the book is hopefully going to have a real impact. Which is why I'm so keen to launch it alongside ME Awareness Week in May! However in order to do this I need loads more letters, probably at least another 60 in order for this to really work.

So I'm sending out a big plea- if you or another ME sufferer that you know have had an experience that you want to be heard, to tell it how it really is, I'd love to receive a letter from you. It doesn't matter who you are, the severity of your illness or your path through life- I'm very keen to show how ME affects every single one of us. I've also now decided to include a section from those closest too us- loved ones and carers who watch us suffer, so if any of your nearest and dearest want to contribute then I would love to hear from them too!

This has all come at a particularly poignant time for me and my journey with ME. When I started this project I was suffering from quite a dip in my health- I'd had to leave my job that I loved and completely rethink my career due to the ME. But as the book has developed so has my situation- I'm now back at work in a manageable job that I think I love even more! So it would be really significant for me on a personal level to see this book do really well as many of the people who work really hard for Invest in ME have just inspired me to make the best of a bad situation. I'll be 25 in February and after having ME for far too many years I'd love (as we all would) to see a treatment or cure during my lifetime. So supporting Invest in ME's work by getting this book out there is massively important to me!

If you want to contribute, in order for me to meet my personal deadline of ME Awareness Week I'm asking for all letters to be with me by March 31st 2014. That'll give me time to put it all together and organise it to have the most impact. If you are on Facebook you can join the closed group Letters for Louise!  and if you aren't, or you'd prefer to email me, looby_louness@hotmail.co.uk is my address.

It's all very exciting- I just need more letters! I'm so grateful to everyone who has contributed so far and look forward to reading more- and of course sharing the finished book with you!

*for the original post about the Letters for Louise project - click here*

1 January 2014

New Year Matching Donation Offer!

What a great way to help us see in the New Year - all donations to two of our JustGiving fundraising pages for Invest in ME charity - including donations by text - will be matched £1 for £1 up to a combined amount of £1250 until 6th January! 

We have received the wonderful offer of £1250 (£1000 + £250 Gift Aid) as a matching donation by an incredibly generous friend of Team Let's do it for ME! This is in support of the UK rituximab clinical treatment trial being organised at University College London by Invest in ME.. The matching period runs from New Year's Eve to Twelfth Night on 6th January. It will apply to two of our JustGiving pages.

1. Ruth Gilchrist's 1st of each month One Day – One Pound (1 Day - £1) - minimum donation is £1 by JustTextGiving by texting this code - APFR99 - and the amount - £1 (or £2, £3, £4, £5, £10) - to 70070 - or from £2 via the JustGiving page:

2. Sue Page's small change to change M.E., which she launched on 1st January last year, so if you've been collecting your small change over the year, time to add it up and be counted in! http://www.justgiving.com/Sue-Page1

The £1250 includes Gift Aid (25% extra from the government on donations made by UK tax-payers so don't forget to tick the Gift Aid box when you donate if it applies to you) but all donations will count towards the total matched amount, whether or not you live in UK or are a UK tax-payer.

The combined total of the two pages at the time of the announcement was £6505 (inc. Gift Aid) so all donations from this amount will be counted and matched £1 for £1 until a combined total of £7755 (inc. Gift Aid) is reached or until 6th January if we haven't reached the full matched amount.

So don't delay – donate today and let's get the New Year off to a flying start!

Links to more info ..

IiME/UCL/UK rituximab trial microsite
Invest in ME (Research)
Let's do it for ME!

*Let's do it for ME! is a patient-driven campaign in support of the independent UK charity Invest in ME (Research) and funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding. Invest in ME is run entirely by unpaid volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific biomedical research into diagnostic tests and treatments for myalgic encephomyelitis in UK in collaboration with international researchers of world renown - 2014 will be an exciting year for progress in M.E. research*

Thank you for your support throughout the year - Happy New Year to one and all!