Big Thank You!

Photo of Jan with dad Duncan taken at her
brother's wedding in 2006 (prior to Jan relapsing)

We wanted to say a big THANK YOU to Duncan Laverick who has kindly donated money given to him at his recent well deserved retirement from SABIC (formerly ICI) at Wilton, Teesside. That's both the gift from colleagues and friends along with the company gift he received - a total of £370 plus gift aid of £92.50 giving a grand total of £462.50 towards Let's do it for ME / Invest in ME and the biomedical research centre at the University of East Anglia, Norwich.

Duncan served ICI / SABIC all of his working life in Research and Development in the Wilton Centre and latterly on Olefines 6 on the Wilton site.
We wish him a long, happy and healthy retirement and again thank him for his generous donation towards this much needed research.

Now some of you will have spotted the same surname as our own Super Jan! Yes it's her Dad (I won't write what she said about him!).

Jan has kindly let me (Paul Kayes) write this short thank you as she is in relapse at present and not well enough to do it herself. Maybe because I too worked at ICI Wilton for 27 years of my working life.

Jan Laverick and Jo Best are the two main instigators of the Let's do it for ME Campaign and work (I was going to say tirelessly) for the cause...however as many will know, campaigning is not without its payback for people with M.E. in terms of health. Despite their limitations, they do a fantastic job on behalf of all of us sufferers.

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 (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.

Amy's Sponsored Screen-Free Weekend!!

Last year, Amy kindly raised funds for Invest in ME with a sponsored silence. This year, she is going screen-free for a whole weekend – very valiant for someone who largely relies on screen technology for contact with the world outside her home. 

Amy says:

“Hiya, my name's Amy, I'm 29 years old and I have been ill for 8 years will a severe illness called 'Myalgic Encephalomyelitis' or M.E. for short. M.E. has robbed me of so much of my life and affected me so greatly that I am now housebound and often bedbound with severe symptoms.

UK charity Invest in ME are planning to set up a specialist treatment and research centre for M.E. suffers here in the U.K. which could treat patients and offers us real hope, so myself and many of my friends are trying to help them raise as much money as possible to make this happen.

Because I'm so ill, I'm limited by what I can do to raise money, no marathons or bungee jumps for me sadly!! So instead I have decided to do a screen free weekend from the 11th to the 13th of November. That will be 48 hours with no TV, no pc and no internet!! Which for an internet addict like me, who lives alone, will be really hard, but totally worth it!

It would be really appreciated if you could sponsor me, and also let your friends know too.”
Amy also bravely shared the full account of her life since contracting myalgic encephalomyelitis for October's Monthly Story on Becoming Visible 4ME - click here to read more about Amy.

Amy's fundraising page is here on Everyclick.


Thank you so much Amy and her sponsors for your support!

Let's do it for ME!

UPDATE:  Amy raised £764 on her Everyclick page - 153% of her target! 
                    Thanks so much to Amy and all her generous sponsors!!

Click here to read about Annabel Schleutker's Screen-Free Weekend.

*This 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.

Peter Amos BUPA Great North Run

Peter Amos has a relative with myalgic encephalomyelitis.  He said:
 
“I'm running in the Bupa Great North Run Sunday 18th of September and want to raise as much money as possible for Let's do it for ME in support of Invest in M.E. and their plans to open a Centre for Biomedical Research into M.E. in East Anglia, the first of it's kind in Europe.

Let's do it for ME is a patient driven initiative in support of Invest in ME and gives great hope to the estimated 250,000 sufferers in the U.K. 25% of whom are severely affected / bed bound. Also for the very many children and teenagers who suffer from this debilitating illness.

Thank you for your generous support,

Peter.”


UPDATE

Peter finished the run in a time of 2.03.49 and has raised £756 so far!

He has asked us to pass on a big thank you to all those who have sponsored him and for all the support and encouraging posts and comments.

Peter's fundraising page on Everyclick remains open until 31st October so there is still plenty of time to donate in support of his achievement.

Thank you so much to Peter and sponsors for doing this for ME!


To donate via Peter's page on Everyclick, click here.

P.S. When you make a donation, don't forget to check the Gift Aid box if you're a UK taxpayer as then your charity can claim an extra 25% from the government!



*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.

Press Release: “Let's do it for ME!” Awareness and Fundraising Campaign.

A campaign has been launched by patients with myalgic encephalomyelitis (ME) to raise awareness and vital funds for a centre of excellence, the first of its kind in Europe.

The centre aims to translate biomedical research findings into appropriate treatments for patients with ME as rapidly as possible. The research proposed will be of the most advanced possible with a focus on immunology and virology, building upon the research database and enabling new areas of cooperation with other biomedical research facilities.

A spokesperson for the campaign said:

“The prospect of this centre is an exciting new development for patients.

Classified by the World Health Organisation as a neurological disease, the effects of ME are multi-systemic, affecting the brain, heart, musculo-skeletal, immune, endocrine, gastrointestinal systems. ME patients may go on to develop autoimmune diseases, heart problems and rare cancers; many have orthostatic intolerance and postural orthostatic tachycardia syndrome.

Progress in research has been hampered in part by the complexity of ME, as studies have tended to look at the many and various symptoms, providing valuable insights into underlying pathology over the years, but not yet translating into treatments or discovery of the root cause of ME.

We believe the new centre will accelerate research by operating as a hub for national and international collaboration between doctors and scientists, progressing innovative and exciting new avenues for research enabled by advances in technology and science.

The centre would be based at the University of East Anglia in Norwich, with access to the excellent facilities of the research park on campus.

Patients seen at the new centre will be assessed according to the correct and up-to-date diagnostic criteria, which will provide the benefit of a positive diagnosis, rather than simply a diagnosis of exclusion of other causes, as well as the advantage of using well-defined patient cohorts for the research itself.

It will be a great relief for the many NHS doctors who are currently at a loss as to how to help patients presenting with such diverse and debilitating symptoms. As things stand, once given a diagnosis, there can be a tendency for either patient or doctor to attribute any new symptoms to the ME or CFS. Previous studies from UK universities have shown that up to 44% of patients given a diagnosis of CFS/ME were either misdiagnosed or had other, potentially treatable conditions.

The new centre will offer hope to some 250,000 people in UK with ME, particularly to the 25% who are severely affected, some unable to move, speak or swallow, and the 10% who are children. The campaign organisers also wish to honour the memory of two brave young women who were among those who have lost their lives to ME – Sophia Mirza died in 2005 aged 32, Lynn Gilderdale died in 2008 aged 31, having contracted ME at age 14. Specialist autopsies commissioned by their families showed similar damage in both cases to the spinal cord, dorsal root ganglia and sensory nerves.

We are immensely grateful to Invest in ME for taking such a positive step towards this goal and we hope that our campaign to achieve this will receive unanimous and widespread support”.


Press Release on Pressbox - Health

Press Release on Pressbox - Science

The press release can also be downloaded in pdf  here.