28 February 2014

Zzz....Factor call for material

Have you got the Zzz.....Factor ?

Solihull and South Birmingham ME Support Group have.
 

 
 

For ME Awareness Week 2014, one of the many ways we are raising funds for Invest in ME is through the medium of humour.

We know there is a rich resource of humour within the ME Community and would like to tap into it to Help us Help Ourselves.

As you are able to read this, you will almost certainly be using a Device that will record Voice, Pictures and Video.

Send us a Recording of a few Jokes, some funny Stories, or a "You've been framed" Video.

And best of all, you can do this from your Bed in PJ's and without Makeup for that authentic MEEP look.

Lets show the world that We're Down but not Out and that

MEEPs Rock !!!!!

Please contact us with ideas or material at :

 

Mawer Family Adventure with M.E.

I have very kindly been asked to contribute and share with you our journey with M.E. and how we deal with the changes it has brought into our lives, our fundraising and bid to raise awareness to everyone we meet.

My name is Tanya, I am married to The Dave (as the girls call him) and have three fabulous daughters. Up until 2010 our life was no different really to most others, just ordinary married couple with 3 children, all in school and dealing with the everyday chores that you have when you have three sociable and active young girls. My eldest Keisha, wasn't sporty but enjoyed music and reading and loved hanging out with her friends. Tasha, the middle one, was very sporty, playing netball, tag rugby and participating in dance groups and even a flash mob dance in the local Westfield Centre doing a Bollywood routine. Tara, my baby, was uber active – you couldn't tie her down, none stop activity whether it be tap dancing, modern dance or musical theatre – she just loved to perform, singing & dancing wherever she went – and performing with her peers in the local Assembly Rooms several years in a row. 

That was then, a distant memory sadly – the girls were so happy and life was full of promise for them – then M.E. entered our lives in November 2010.

Now, it has to be said, prior to Tara falling foul of M.E. I was pretty darn ignorant of what it entailed – I vaguely remembered during my school years a girl my sister was friends with had M.E. I remember she was home schooled and when we visited often had to just get up and leave us to go to bed and we would quietly leave and go home. That is all I knew – M.E. just made you very tired – how wrong could I have been? 

Yes M.E. does make you exceptionally fatigued – but that is just the tip of the iceberg. We had to watch while Tara suffered crippling back pain, disturbed sleep with terrible vivid dreams and legs that wouldn't behave themselves, always moving and feeling as if they didn't belong to her and falling out of bed. Then there were the headaches, joint pains, nausea, loss of appetite, brain fog, weakness of limbs, Orthostatic Intolerance, Hypermobility issues, IBS – the list is endless. It was heart-breaking watching my child become a shadow of her former self, barely able to walk and always so pale with dark purple shadows under her eyes. She was only 10 years old and was just at the start of her final year at primary school – she didn't manage to go and finish her last year at that school and hasn't been well enough to get back into school since.

It didn't just stop there though – Tasha was then diagnosed with M.E. in February of 2012 after suffering from viral meningitis and simply not getting better. We went through CAT scans, x-rays, blood tests and finally were given the diagnosis of M.E. along with hypermobility, orthostatic intolerance, chronic pain and now a re-occurrence of her asthma too. Which hit Tasha so very hard, she had just selected her options for her GCSE’s and was so excited because she was told she could take all of her chosen subjects of drama, beauty and triple sciences. Unfortunately she wasn't able to start any of them and has not been in school since her diagnosis. Tasha’s M.E. is different to Tara’s – there are multitudes of symptoms and every sufferer is different in which ones affect them and the severity it takes too. Tasha is often unable to walk, relies frequently on wheelchair and crutches and suffers constant pain in her joints.

Both Tasha and Tara suffer from anxiety and panic attacks in addition to the M.E. – Tasha more so and these can be crippling for her, she also sadly suffers from depression too . Keisha, our eldest daughter also suffers from social, anxiety and depressive disorder with autistic traits and has panic attacks and becomes upset and worried about her sisters and their health and for this all three girls (and myself and Dave for parental support) visit our local CAMHS team (Children’s and Adolescent Mental Health Service) for support. Keisha and Tasha have to take Fluoxetine to help with depression and anxiety and Tara is waiting for a therapist to become available to have CBT (Cognitive Behaviour Therapy) to help her address her anxiety. We have a very sympathetic psychiatrist there who fully understands M.E. and can differentiate between its physical aspects and the psychological legacy it has given them. They liaise with our medical team to try and provide a holistic approach to care, but sadly very few doctors have any knowledge of the illness and are unable to offer us much more than necessary letters to school and trials of medications to see if they ease symptoms. It is with the help of our fantastic GP’s that our applications for blue badges for both girls were awarded by supplying us with supporting letters to send with the applications – I can’t tell you how much these have helped.

However gloomy this all sounds there has been a silver lining to all this. Despite the illness and the huge limitations it has caused I feel without it I believe the girls wouldn't have discovered their previously undiscovered creative and artistic talents. Tara has become passionate about making short films/videos along with photography - a few years ago she made a stop gap animation film on YouTube to raise awareness for ME.
It is something that when well enough she would like to pursue further at College. This has given her something to focus on and work at when she is in her room and too ill do go out – we are currently having a large green screen blind made to go right down to the floor for her in her bedroom which will allow her to play with more special effects both on video and her photographs. She is also going to try some taster singing lessons to see if she can tolerate them and if she can then we will enrol her for a weekly lesson very locally to develop her very pure singing voice. 

Tasha has found that she loves photography and wants to make it her career in the future, she also loves to draw and has a tattoo kit and has learnt how to put it all together (by watching YouTube tutorials) and when well enough loves designing tattoos and learning the art on artificial skin sheets. When she is well enough she hopes to be able to open a Facebook Page and sell postcards, calendars, note-lets etc. made from her photographs to raise funds for Invest in M.E. which is our chosen charity to support, as we wholeheartedly believe they are the key to unlock a better understanding of the illness and possible treatments via their research in the future. 

Recently I had to visit the doctors as I had been feeling very tired and unwell along with joint pains, it turns out (not surprisingly) that I have high blood pressure and IBS and as all my myriad of blood tests came back clear they feel I am either suffering physical manifestations of stress or possibly early signs of developing M.E. and so am being monitored monthly at the surgery by them. So as a way of combating stress and trying to make sense of what jumbles about in my mind I started a blog – I must admit most of what I type doesn't get published, it’s the process of writing it down that helps – whether I delete it or not afterwards. 

Tasha has also started blogging too and is finding it a great way to vent about her M.E. and anxiety amongst other things and reading her blogs have made me extremely proud of her and her bravery to share with others.


Since Tara’s illness we have gone from a family of no pets to a family with 3 crazy loving dogs – two Boarder Terriers, a dog called Taylor and a bitch called Skyla Minx and a Jug (Jack Russell & Pug cross) dog called Loki (who lives up to his name). They have been brilliant in providing pet therapy – sometimes when life seems overwhelming sitting with the dogs and accepting their unconditional love and devotion can be a balm to the soul. Whenever a member of the family is feeling particularly ill the dogs sense it and go to that person and literally “guard them” until they improve.


As a family, we find it helpful to talk about M.E., how it affects us and encourage all our friends and family to get behind us to spread awareness and support our sponsorship fundraisers. There are two fundraising ventures we are now undertaking on an annual basis;

Walk for M.E. as a family team every May during M.E. Awareness week – we don’t know yet how far we are going to be able to walk this year, it all depends on how well Tasha and Tara are at the time. We have also managed to get 5 Invest in ME t-shirts for us all to wear in the run up to and during our walk, we hope people will approach us to ask us more about the illness and charity - we also purchased 5 pin badges to wear at all times for the same purpose.







Wherever possible we like to support other fundraisers and be vocal in spreading the word about what M.E. does and how people can help us raise funds and awareness. Mama Chill (aka Stacy Hart) is one such person who I have utmost respect for – not only does this talented woman sing/rap she also designs clothing via Dizzyjam, some of these sales help to raise funds for Invest in M.E. – so if you can get behind her too that would be fabulous.



We couldn't have made it through the past few years though without the support and friendship of the wonderful people we have me through Facebook and the Let’s Do It for ME group, along with so many other very special people whose friendships we now treasure via other the ME groups too.

We know the M.E. journey is a difficult and unpredictable one but take comfort from fundraising and spreading the word that we are doing something positive for the cause and have a real hope that there will be help, treatments, understanding and better support for sufferers in the future because of the great team effort by all involved.

Thank you for all your support and friendship and we hope that for all a better future lies ahead.


With love from the Mawer Family



x~X~x

27 February 2014

Are you looking for a Charity to Adopt?

from Tanya: I know many social clubs or company's like to support a different charity each year and wonder - is your workplace, local social club or school looking for a charity to support?

If so, I urge you to consider supporting Invest in ME and helping us to raise money to fund research into causes and treatments, whilst also raising awareness for all the adults and children currently suffering from this illness.

For further information about the Charity please take a look at these websites where you can also contact them for further information if you require it;

and their supporting campaign  

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There are so many different ways you can raise funds and get involved, here are just a few;


Help us Perform Biomedical Research into ME
Take a slot in the Matrix to raise funds for the UK Rituximab Trial.
This is inspired by a £1000 donation to the UK Rituximab Treatment Trial JustGiving page and the Let's Do It for ME team have come up with an idea to help raise awareness and funds for this important biomedical research into understanding and finding effective treatments for ME.  The aim of the Matrix project is to help raise as much as possible of the £350,000 required to fund this trial by inviting 100 pledges to raise or donate £1000 each.

Invest in ME will coordinate the fundraising for this trial.

The charity has already invited other charities and organisations to support in funding this trial.  Everyone is invited to participate.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Invest in Me will help promote your fundraising event if you contact them;

Alternatively you could raise funds for free; 

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You can download sponsorship forms for any of your events here
AND 
There are badges, mugs, t-shirts, wrist bands and bracelets, car bumper stickers, information videos and various posters available.

To enquire about receiving printed copies of any Invest in M.E.'s leaflets (or any other information for your fundraiser) contact them - click here

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Whatever you can do - no matter how big or small, will help us to make a difference.

Thank you

x~X~x

21 February 2014

& THE TOTALS IN....

I want to start with a Big thanks to all those of you who've  purchased “Runnin On Empty” & “ Can You See ME” items so far, where all profit made  has just been donated online to  

Invest In ME,  30 t-shirts, 9 hoodies, 7 tote bags & 2 mugs later  plus a £20 donation thrown in from a very kind friend, & You lot have raised £202.08 HORAAAAAAY J

Also a big thankyou to everyone’s whose shared the store link and pictures. Don’t forget to upload your own pictures to the site with your purchases. For those not sure how to do this: Just click on the store link, http://wwwmamachill.dizzyjam.com/
click on any item and then scroll down and at the bottom of the page you’ll see pictures of those who’ve already uploaded including me & my ugly mug :o  and you’ll see an upload button…..but if you need help, i can always just nick your pic off facebook and do it for you, as I have for a few already, so just holla.


There is also a “comment” button here where you can say what you think about the item..did you like it?...was it good quality….did you like the design? Etc leaving comments can help other people decide wether to purchase something or not so along with the photos it’s a really big help.


DRUMROLL…….. On the 1st March I will be adding a brand new M.E design I’ve been working on called “One Stupid Dot” to go with the other three M.E ranges, so pencil that on your calendar, write it on your forehead, or better still write it on your partners forehead you’ll see it better, but remember to check it out on the 1st March.  All designs will be a permanent feature in the store and all profit from all four ranges will be donated to Invest In ME.  So please continue to purchase, share,  tell ya friends etc…….

The idea is to change up designs from time to time, so it keeps it fresh, gives you something new to wear, something you hopefully enjoy wearing while knowing that you are helping to raise funds and also awareness. I’ve already been stopped a couple of times in the cafĂ© where I live whilst wearing my “Runnin On Empty” T-shirt and asked where they can be purchased, & getting into chatter I was also able to tell them about M.E and why I used that design, but how it’s a design that’s open to anyone.

So its been good all round and I hope that if…please note I said “IF” we get a good summer....or any summer,  wearing the items out without a jacket  might stir up even more interest, so please keep your support rolling, its greatly appreciated.

And as always a special thankyou goes to the “Lets Do It For ME” team  who have been awesome in promoting and supporting this project.
    
                                               I will keep everyone posted.
                                                         Stay Blessed  
                                                     Back Before Elvis
                                                 Stacy A.K.A Mama Chill  :) XXX

17 February 2014

Mark Webster's Bath Half Marathon


Mark with mum Isabel Webster
Mark's story: On the first Sunday in March I will be taking part in the Bath Half Marathon as a way of showing my support to two special people who I love dearly and many more like them who also suffer with ME. Mum has shown  great courage in learning to manage a condition that leaves her house-bound most of the time these days. Her good friend Nadine also suffers from ME and has become a close friend to me and my wife. I'm sure she will not mind me saying that she is as mad as a box of frogs and she has the most wicked sense of humour.

Both of them have a generosity of spirit that is not bounded at all by the challenges they face on a daily basis. If ever there were two reasons to put hard earned cash into biomedical research into the causes of ME, these two should stand up... But they would be the first to speak out for their many friends and thousands more who they have never met who have to struggle with the varied and cruel effects of this neurological condition as well as dealing with the ignorance and antipathy often shown by some health professionals and members of the public.

Nadine and Issy at Mark & Beccy's Wedding in 2010
They deal with both these problems with a level of patience, resilience, dignity and dare I say humour, than I and many of their loved ones could ever hope to. ME frustrates us and makes us angry but they inspire us and help us to treasure the sense of well being that they still do have whilst also teaching us not to take our own health for granted. So if you would like to show your support for Mum and Nadine as well as their many friends and countless others who all deserve our support then please donate whatever you can, however little, it would be really appreciated.  To donate - click here

As for the run itself, if you are in Bath on the first Sunday in March you'll probably see me at the back running behind the bloke carrying a fridge and just in front of the lady running on her hands. I'm not the fittest person in the world and I'm carrying enough spare tyres to keep Kwik Fit in business so it will be a challenge to complete but what ever place I finish in, 'll be proudly wearing an 'Invest in ME' tshirt and thinking about my Mum, Nadine and the many others who run their own half marathon each day without even leaving the house.
Thanks for reading,
Mark x
Mark's Bath Half Marathon 2014 Fundraising Page on JustGiving

"Daddy is running for my Gran and Invest in M.E."
Mark's biggest supporter, his son Finn 


************
Let's do it for ME! is a community campaign in support of the work of independent UK charity Invest in ME (Research) and raises 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 people with ME. They are driving the agenda of scientific biomedical research into diagnostic tests and treatments for myalgic encephomyelitis in collaboration with international researchers of world renown - 2014 promises be an exciting year for progress in M.E. research and we can all help.
Click here for current and planned research projects.  Thank-you for your support.
Let's do it for ME!
ldifme.org
Invest in ME (Research)
investinme.org
Invest in ME International Biomedical Research Conference (IIMEC)
investinme.eu

16 February 2014

Invest in ME February 2014 Newsletter

With thanks to Invest in ME - February 2014 Newsletter includes: * IIMEC9 * BRMEC4 * IiME/UCL UK rituximab clinical treatment trial * IiME/UEA UK gut microbiota study * IoM * FDA * IACFS/ME * APPG * ME Awareness and Fundraising Events * The Matrix * Books on ME * Films on ME *

Invest in ME
February 2014 Newsletter

published 15/2/2014
 

IIMEC9 - 9th International ME Conference
Registration has been open since January for the 9th Invest in ME International ME Conference 2014 which will take place in Westminster, London, on 30th May 2014. 

The conference has been awarded the full 6 points of CPD accreditation. 

We welcome presenters from eight countries. 

The theme of the 2014 conference is Synergising Research into ME
This reflects the move to bring together biomedical research into ME to maximise the potential to find treatments and causes. 

We have recently added to our list of presenters and we welcome Professor Angela Vincent, Emeritus Professor of Neuroimmunology at the University of Oxford. Professor Vincent has vast experience in neuroimmunology and runs the Clinical Neuroimmunology service which is an international referral centre for the measurement of antibodies in neurological diseases. Her major interest is in the role of autoimmunity in neurological diseases. 

Dr Amolak Bansal will also return to provide an overview of diagnosis and treatment in UK and will lead a panel to discuss diagnosis and treatments for ME. Dr Bansal is heavily involved in the research being funded by Invest in ME and is the consultant leading the CFS service at Epsom and St Helier Hospitals Trust in Surrey. 
Professor Simon Carding ofUEA/Institute of Food Research, who is leading the IiME/UEA gut micriobiome project, and Professor Jonas Blomberg, who has recently published research funded by our European ME Alliance colleagues at IMET, compliment the agenda.  

More information about the conference is available here - http://www.investinme.eu/agenda.html

Biomedical Research into ME Collaborative Meeting - 4
Collaborations and cooperation between ME researchers, and researchers from other fields, is necessary and productive.

Prior to the conference the charity has organised the fourth Invest in ME Biomedical Research into ME Collaborative Meeting to take place on 29th May in London with experts from around the world discussing ME and current and future initiatives. 
Those attending include researchers at the cutting-edge of their fields - not necessarily in ME research - who will also be able to discuss the latest biomedical research initiatives underway or planned. 
This seminar has already been given the maximum CPD points by the colleges.

With researchers and physicians from nine countries attending we hope to make  further progress in crowdsourcing ideas and synergise  research into ME. More information here - http://www.investinme.eu/news-03.html


Possibly the 2 Most Important Research Projects for ME in the UK
We have managed with the help of our resourceful and imaginative supporters to raise funds to start our foundation research project at UEA/IFR. The UEA/IFR gut microbiota project began in October 2013. This has been an impressive achievement based on past ME fundraising attempts.
In the absence of any credible or scientific strategy being presented by those responsible for public funding of proper research into ME to find causes and treatments then patients have to find and fund their own. 
There are now very good researchers and clinicians willing to do research in this area and we need to continue to influence the way forward.
See more here http://www.investinme.org/LDR%20newslet%201312-01.htm
Within this project we have also been able to sponsor an intercalating 4th year medical student at UEA to perform a one year MsC degree within this project and to work alongside the PhD student.
This allows us to increase the base of experience and research opportunity, as was envisaged with our original proposal for a centre of excellence for ME.
Another complementary project is going to look further at Autoimmunity and ME/CFS with the ME consultant who is working with UEA, Dr Amolak Bansal, to perform a detailed analysis of antibodies binding the hypothalamus. To enable this project to go ahead an additional funding has been pledged by our European ME Alliance partners the Irish ME Trust).

This is not the end of the story at all though. We continue to fund for more gut microbiota-related research which will follow on. Our JustGiving page is at http://www.justgiving.com/investinm-e and we welcome help in distributing knowledge of these crucial projects.

Rituximab clinical trial for ME 
In May we set out for another project together with the Let's do it for ME team and we embarked on the objective of initiating a rituximab clinical trial, something we had announced we wished to attempt at the 2012 IIMEC7 conference. 
The target of £350,000 was set to be able to initiate a trial at UCL to treat a group of ME patients with rituximab based on the promising results from Norway. 
Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at UCL, has been the charity's advisor on this. Professor Edwards and Dr Jo Cambridge were behind the groundbreaking proof of concept study of rituximab in the treatment of rheumatoid arthritis, and the project has been progressing well.    
After several meetings with UCL it has been decided to conduct the research in two parts. 
The first part involves validating and expanding on Dr Bansal's B cell study and this is ready to start soon. The second part involves the actual clinical trial using rituximab to treat ME/CFS patients selected from the cohort taking part in the B cell study. This will start once the protocol that depends on the B cell study, funding, peer review, ethical approval and other administrative processes are in place. So far we have managed to raise £283,000 of the initial target of £350,000. 
The Let's Do It For ME team have created a mascot for the project - Professor Ldifme - and the professor is now assisting the UCL team and also the UEA team conducting the gut micribota project. 
You can read more of the rituximab research at our dedicated web site at this link -www.ukrituximabtrial.com

See also - The Matrix - http://www.ukrituximabtrial.org/IIMEUKRT%20Matrix.htm
The idea of the Matrix is an idea to encourage individuals, organisations, teams and companies to take a slot to aim to raise up to £1000 each. 100x £1000 events would raise £100,000 and we are pleased to see a many slots reaching their target - but many more are needed.
If you have an idea which can encourage a group, a community a business or a wealthy philanthropist and wish to take a slot then please contact us at info@investinme.org

FAQs on the rituximab clinical trial
We receive questions from patients wishing to take part in the trial which is understandable as ME patients have so few options for treatments and they are generally willing to be part of any research initiatives. 
However, the charity, as funders, can have no influence on the selection process. This will be the responsibility of the research team and consultants. 
The trial will be aiming to find likely responders based on the initial B cell study. The clinical trial protocol will not be designed until results from the preliminary B cell study start to come in and the patients will be selected from a cohort of patients who took part in the initial B cell study. The consultants in charge of patient selection for both parts of this trial will be those working at the Epsom and St Helier and UCLH NHS CFS clinics.More details and answers are available on the IiME web site which has been created for the project - http://www.ukrituximabtrial.org/IIMEUKRT%20FAQ.htm 
News of the project is available in the news page at http://www.ukrituximabtrial.org/IIMEUKRT%20News.htm

World Events
The Institute of Medicine (IOM) contract -a new ME/CFS definition 
One of the most talked about topics recently has been the US government health services contacting the Institute of Medicine (IOM) to produce a new definition for ME/CFS.
The cost of this contract is in the region of $1million!
Over 50 ME/CFS researchers and clinicians wrote against this contract asking for adoption of the Canadian Consensus Criteria.
Invest in ME wrote to Secretary Sebelius in support of the many researchers/clinicians and patients advocates who signed up to support these professionals  [http://www.investinme.org/IIME%20Statement%202013-11-01.htm].
Recordings of the public comments made by many notable and well spoken US advocates can be viewed herehttp://www.youtube.com/user/instituteofmedicine/videos.
Everyone's message was more or less the same asking for the contract to be cancelled.  A British lawyer Valerie Eliot- Smith also blogs about the importance of this debate and other topical issues here -http://tinyurl.com/l9lwvl5 

FDA "The Voice of the Patient ' document 
This document, produced by the FDA from the meetings held on 25th April 2013, is well worth reading and keeping for future reference. 
It is a series of reports from the U.S. Food and Drug Administration's (FDA's) Patient-Focused Drug Development Initiative "The April 25 Patient-Focused Drug Development meeting gave FDA the opportunity to hear directly from patients, patient caretakers, and other patient representatives about their experiences with this debilitating condition. 
The discussion focused on two key topics: 
(1) disease symptoms and daily impacts that matter most to patients 
and 
(2) patients' perspectives on current approaches to treating CFS and ME. The questions for discussion (Appendix 1) were published in a Federal Register notice that announced the meeting."  http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM368806.pdf 

IACFS/ME Conference 
The IACFS/ME 11th Biennial International Research and Clinical Conference to be held in San Francisco, California, USA, March 20-23, 2014. More information here - http://www.iacfsme.org

IiME AWARENESS and FUNDING EVENTS
A special mention for our supporters. We often thank our supporters and try to convey the appreciation of so many patients and families who are not in a position to do more themselves - and so rely on the efforts of the charity and its supporters. 
We are privileged to have such great support.
The Let's Do It For ME campaign also has to have special mention. 
The impressive imagination and vision which has dominated this campaign to aid Invest in ME in establishing proper research at prestigious universities and increase research collaboration is only exceeded by the sheer positivity shown by those running campaigns and those taking part in them.
We must not forget the great efforts of supporters using  e-bay to help the charity by selling items in aid of biomedical research.

It has been a great honour to work with people who are positive, creative, determined and show the integrity and vision which is required to overcome and overturn a generation of neglect by those responsible for treating, funding and representing ME research.

In a short newsletter we cannot show all of the wonderful efforts  being made to support awareness and biomedical research.
There are many whose efforts are not well known but their support has helped to ensure better  education about ME, more awareness of the illness and greater possibilities for biomedical research to be  developed. 
We thank all of our supporters for continuing to  help us throughout the year. We hope you  realise how much we appreciate your support.

'92 in 92' Challenge for  Invest In Me 

The world of  ME has many hurdles - one of them being isolation for  patients. It is a too infrequent an occurrence for friends  of someone with ME to stay in contact, let alone actively do  something to help. Many ME patients can feel isolated and abandoned by their friends  and even family members. 
So we are amazed at the reaction  and spirit of a group of four friends  who are aiming to visit all 92 English Football League Stadiums  in under 92 hours in support of Invest in ME and to raise  money and awareness for the Rituximab Trial.
They are doing this to help their friend who has ME.
The event begins on April 16th 2014.  We are really grateful for  this group of four who are doing an amazing job raising  awareness before the event has even started. 
Football clubs,  hotels, TV companies have already shown interest in this positive  way of raising awareness and funds for ME.
One can follow  the news of this event here
and make donations to support the amazing event click here
         

The charity has had a flag especially made for the tour and this will be taken along and used for photo opportunities at all of the clubs.  



The Big Sleep
Julia Cottam is once again organising The Big Sleep for ME  event in May. 
Julia and the team did a fabulous job last  year and this annual event is growing nicely and looks  to be a great event to be involved in during an ME Awareness  Week from 11th to 17th May.
You can read more  about the many ways to get involved here  http://www.thebigsleepforme.com 
 
Walk for ME
This  is the second year that Walk for ME event is being organised  and it is another great event for almost anyone to take  part. The website has a gallery of last year's walks and  gives easy to understand information how to get involved.  Those helping Invest in ME in this event will be assured  that all funds received are used for activities for  biomedical research into ME.
Find out more from the website here - http://walkforme.co.uk/ 

Several active individual pages on Just Giving have been set up to help IiME -

Bath Marathon
Two entrants  to the Bath half-marathon are raising funds for IiME

Mark Webster is the son of ME patient Isabel  Webster. Mike's JustGiving page and story are at-Mark's  Bath Half Marathon 2014 page

Catherine Ellicott is running also - her JustGiving page is at Cath's Bath Half Marathon 2014 page. Already Catherine has achieved an incredible total.
Our grateful thanks to Mark and Catherine on behalf of all patients and carers. 

London Marathon

Stephen Cox will be the charity's first supporter running in the London marathon on 13th April.
Stephen has set up a JustGiving page - http://www.justgiving.com/Stephen-Cox4
For a small charity such as Invest in ME it has always been difficult having an entry in the London marathon as the event seems geared for those charities who can afford to buy places. So we are incredibly grateful to Stephen for breaking the mold on this.
We would welcome any support in raising awareness of ME with these marathon events.  


Arctic  Marathon

Marathons are no mean feat to accomplish  - for anyone.

An extreme way of raising awareness of ME  and much-needed funding for biomedical research into ME has now been set in motion by Mike Shepherd. Mike is taking on the North Pole Marathon.
 

As Mike writes on his web site -This is the challenge of a lifetime and it is the result of my daughter having ME since September 2008. I have seen firsthand how damaging ME can be to a person's life, their prospects and their family. http://www.shepherdfitness.co.uk


Books on ME

MY A-Z OF M.E. (Myalgic Encephalomyelitis) 
by Ros Lemarchand 

Do you feel that no one  understands you? 
Do you feel alone with this illness? 
Do you  find it hard to express how you feel? 
Ros Lemarchand's  book of poems about life with M.E. is a must for you.
MY  A-Z OF M.E. (Myalgic Encephalomyelitis) is available in both Kinfle and papaerback editions

Ros also has a YouTube video about the book  - click here
   




Can I Tell you about ME/Chronic Fatigue Syndrome?

This  book by Jac Rayner.
IiME chairman Kathleen McCall has reviewed the book for the publisher and included the following comments -
"This book is very clear and easy to read. 
It is a great  resource that can be used by ME patients and their carers to  explain and inform others what it is like to be affected by  ME/CFS. 
Not only children but adult relatives, friends and  teachers would learn a great deal from this book."

Available on Amazon at this link

Jac's book is also to be translated into Norwegian.








Rafi Brown and the Candy Floss Kid
Sue Stern has raised over £1000 by taking a  MATRIX slot and donating proceeds to IiME from sales of her  children's novel last year - just a year ago.
One of Sue's sons has been severely affected  by M.E. and other related conditions for many years.
Her book has ISBN code 978-0-9574948-0-0.
Sue was interviewed by Kath, at Wythenshawe local radio, on her programme, 'Disability Matters'. 
As a result of her suggestion, I contacted the Royal National Institute for the Blind, who are now making a large-print version of the book, and when funds allow, a Braille version!
Sue's MATRIX slot is here - click here





APPG for ME
ME patients are continuously denied benefits as the training  given to healthcare professionals and medical assessors is  not based on the biomedical basis of ME. So Invest in ME used the opportunity  presented by the recent APPG for ME in UK parliament where  the minister for disability Mike Pennington attended the  meeting.
One of Invest in ME's questions to the  minister did get through and received a response.
This, and the other questions posed by  IiME which were not asked are available - click here
We encourage as many people as possible to make their views  known to the minister - stating that the main barrier to work and  living life to the full with ME patients is poor health and  lack of proper medical care. The lack of proper medical care  is due to lack of funding given to biomedical research to  look into the underlying causes of ME and finding a  diagnostic test.
The DWP co-funded the flawed PACE trial which  sought to look into management of ME using CBT, GET or  pacing without the cause of ME being known and which have  shown to be a disastrous waste of money with no worthwhile  result. All ministers carrying any responsibility for  patients has to be made aware of these realities.


FILMS  on ME
Finally noteworthy is a new film about ME which promises to raise awareness about ME at an international level in a way that may help us all change things.
With  impressive funding from a KickStarter campaign Canary in a Coal Mine follows the lives of several remarkable people living with a Myalgic Encephalomyelitis. They are forced to leave careers they loved, abandon the dream of having children, or face the prospect of being locked away forever in their homes and bedrooms. Worse still, most doctors, and sometimes those closest to them, don't even believe they're really ill. 
The film is sure to make an impact.


Best wishes to all
Invest in  ME





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InquiriesAll inquiries to Invest  in ME -  info@investinme.org

   
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