26 June 2012

Dr. Betty Dowsett 1920-2012

Dr. Elizabeth Dowsett passed away 14th June, aged 91, and her loss is keenly felt by the ME patient community. IiME (Research) Charity said,

“Her voice was a constant force in support of ME and ME patients over the years”.

Born in Newport Gwent, Dr. Dowsett studied medicine at Edinburgh University and worked as a GP in London before becoming a consultant microbiologist. She developed considerable experience and expertise in ME, seeing thousands of patients from the 1960s onwards, and working with other experts in the field, such as Dr. John Richardson and Dr. Melvin Ramsay.

Following her retirement, Dr. Dowsett continued to lecture and advise patients and professionals about ME. She worked with Jane Colby of The Young ME Sufferers Trust on a ground-breaking study into ME as the cause of major long-term sickness absence from school, published in 1997. In 2001, she was the key speaker at the launch of the Welsh Association of ME and CFS Support in the National Assembly and continued as an adviser to WAMES.

Dr Dowsett attended the very first IiME conference as Invest in ME's guest of honour and her name will be found in innumerable articles and references on ME on the IiME website. In this article, co-authored by Jane Colby, Dr. Dowsett wrote:

“In the absence of a straight cure for ME, researchers have focused on psychological therapies, touted as cures by irresponsible practitioners and reported as such in the media. Like Invest in ME and The Young ME Sufferers Trust, I believe that enough is enough. It is time to focus attention on the physical nature of the illness, and particularly in my opinion, on the microbiology as well as the host factors and the effects. Early identification of infecting organisms, especially in children, who are the epicentre of this illness, is vital”.

Dr. Dowsett had an interest in human enteroviral infections and co-authored a paper published in 1990 titled Myalgic encephalomyelitis – a persistent enteroviral infection?  From the Abstract:

“This illness is distinguished from a variety of other post-viral states by an unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory. Routine diagnosis, specific therapy and prevention, await further technical advances.”

One of the first studies planned by Invest in ME at the centre of excellence in East Anglia will be on enteroviruses.  The Let's do it for ME campaign is helping to raise funds for this research, and we are pleased to able to announce today that we have just reached half-way mark to our initial funding target for the research strategy to begin. We are proud to be playing our part in helping Invest in ME charity to take this important work forward and we thank you and everyone taking part for your support.

Dr. Dowsett's funeral takes place on Friday, 29th June. Her family have asked that donations be made directly to the ME charity of choice in place of flowers. Cards may be sent to:

The Family of Betty Dowsett,
c/o The Cottenham Court Nursing Home
High Street
CB24 8SS (but do not send donations with your cards)

Please click  here for options to donate to Invest in ME for biomedical ME research.

Our sincere condolences go Dr. Dowsett's family and our grateful thanks to them for thinking of ME patients at this sad time.

Thank you also for your support.

The Team at Let's do it for ME.

18 June 2012

Make ME Crafts

Make ME, Break M.E.

A new website, http://www.MakeMECrafts.com, features art, crafts and products made by M.E. sufferers and their family and friends, with profits being donated to 'Invest in ME' to help fund a UK M.E. centre of excellence for biomedical research and treatment.

Make ME's aim is to draw focus to the little things that people with this condition can accomplish, bit by bit, instead of the bigger things they can't; to shift attention to the positive ways that the bed-bound can still make a difference.

Being ill doesn't mean you have to stop being creative!

These courageous people are sending their lovingly created crafts out into a world they can't be part of, to raise awareness and fight for real and effective M.E. treatments.

Crafts on 'Make ME' are made and listed by sufferers at their own pace, as they complete them, with many sellers working on projects a little at a time, as and when they're able. Unlike in the working world, there is absolutely no rush - no pressure. There are no demands to perform or time-constraints within which something has to be finished, giving them the flexibility to manage activities around their health.

It's not about how fast you can do something, it's about how well you can do something. These people may be ill, but they certainly haven't lost their talent, their passion or their creativity. They just can't manage things on the same scale as healthy people. They may not be able to keep up with the break-neck pace of the world outside, but that doesn't mean they can't do something constructive; something worthwhile, bit by bit. To borrow a phrase from a well known supermarket: "Every little helps".

'Make ME' is about doing something rewarding for a good cause; allowing sufferers to find some purpose again and changing the way they're seen in the community. It's about showing people that underneath every broken shell is a real person trying to get out, to express themselves, to reclaim something of what they've lost and achieve some level of normality; to create and be a part of something wonderful in this world, as others are able to.

Arts and crafts have proven to be very therapeutic, offering catharsis to a great many people from all backgrounds. Making things creates a real sense of accomplishment - something that's very important for all of us to retain, especially if we're unable to achieve much in other areas of our lives.

'Make ME' was set up by sufferer Jon Watson. It was initially launched as a Facebook page, to centralise crafts being sold for 'Invest in ME', but having proven to be a hit the project now has its own website at http://www.makemecrafts.com

The 'Make ME' project is part of the 'Let's do itfor ME!' patient driven campaign supporting the pioneering M.E. charity 'Invest in ME' (Charity No. 1114035), who are leading the charge for invaluable translational biomedical research into M.E. They plan to open an M.E. centre of excellence right here in the UK, the first of its kind in Europe. With your help they hope to revolutionise the diagnosis, treatment and care of M.E. and raise awareness and understanding of this debilitating condition.

'Make ME' is expected to expand and grow as part of its natural development, with the possibility of fairs/shows/workshops/tutorials/meets/forums/blogs and much, much more in the future, all painstakingly managed around the fluctuating health of participants.

Their most recent campaign 'Hug ME' calls for handmade soft toys and cuddly things for sale, auction or donation to a young person with M.E. - to help bring a smile to a suffering child.

Let's support these incredible people 'doing it for ME', working not just to improve their own situation but that of many others suffering from this disease all around the world, bringing hope and pride to sufferers everywhere.

Buy some goods, tell your friends, donate materials or get involved!

All crafters are welcomed with open arms and open hearts. Seller registration and item listing is free, as long as you agree to donate a portion of your profits to 'Invest in ME'.

If you wish to donate crafts or materials, or feel you can contribute in some other way, please do get in touch with them via their website, or email admin@makemecrafts.com

They'd be grateful of any support you can provide.

See what's on offer, find out more, get inspired or sign up for their newsletter by hopping on over to http://www.makemecrafts.com

You can also find them on Facebook and Twitter!

9 June 2012

TopCashback - Raise money for free.

TopCashBack is the UK's most generous cashback website and is recommended by Martin Lewis of MoneySavingExpert.  So if you buy on line this a great way of earning money for Let's do it for ME / Invest in ME's Biomedical Research Fund.  With really great offers and the highest percentages paid out each time you by online.

Over 3300 online merchants and it's completely free.

No Strings - No catches - No Spam.

Just 3 easy steps

Join for Free (Just a few simple details)

Buy online (Log in to your TopCashBack online account and start searching for the merchant or product)

Get Cash Back.

So please sign up for TopCashBack using the link below and TopCashBack will donate £10 to Invest in ME once you have reached £10 in your cash back account. You then have a choice you can receive all of the money in your account yourself or you opt to donate all or a percentage of the money you have accrued direct to Invest in ME (option available in your account)

Start earning money now by sign up here TopCashback for Invest in ME.

There will be a banner stating - You have been referred by ''IiME''

As they say it's a no brainer :o)

5 June 2012

Peter's Kilimanjaro Challenge


£2,365.00 inc. gift aid raised so far by Peter's Kilimanjaro challenge and money still coming in, including £50 from Ed Milliband on the 11th July. Peter is doing well, although not back out walking he has been out jogging. More funds to be collected at Barnsley Football Club where Peter is the chaplain.

Despite it being very tough going Peter made it to within 400 metres of the summit before finally succumbing to altitude sickness, he was so disappointed. He is home safe and sound but still suffering from the altitude sickness. Thank you to everyone who sponsored him.


Once again our superhero Peter Amos (Paul Kayes' brother-in-law) is raising funds for Let's do it for ME / Invest in ME's Biomedical Research Fund.

This is what he wrote -

In my 65th year, the year of my retirement, I am setting myself my most severe challenge yet to raise money for Invest in M.E.

On 2nd June I set off from Heathrow, arriving at Kilimanjaro airport in the late evening of the same day. After travelling to the start of the Rongai route I begin the first 2000ft of ascent up the highest mountain in Africa, standing at 19,341ft. Day two sees us climbing a further 2400 and day 3 - 3100 ft. This is where altitude problems could provide serious problems, hence an easier day which sees us climb 1000ft and return to the campsite to aid the acclimatisation process. On Day 5 we climb 3200 ft and then walk around the mountain rim for one and a half hours to reach the actual peak. It will be your donations that drive me on when I feel I can go no further.

We descend to our camp site and then further to our final camp. On the last day we descend 5700 ft before returning to our hotel and then straight home.

Having trained hard in Snowdonia my feet are already severely battered. So a few prayers might be needed too.

Thank you so much for taking the time to read this. An even bigger thanks if you were willing to support such a very good cause.

Peter Amos.

Donations can be made through Peter's JustGiving page by clicking here

You can also text your donation
To: 70070 pakc65 £ amount
for example PAKC65 £5 to 70070

 At the training camp where Peter is picking up a few tips from Paul & Paul's dad Richard

3 June 2012

Scott's Marvellous Scottish May Marathon for ME!

Scott Handcock
On a ridiculously hot day in Edinburgh last Sunday, 27th May, Scott Handcock ran 26 miles to complete his first ever marathon in 4 hours 47 minutes and 53 seconds!

In his first blog entry of the year in January, freelance writer / director / producer and "occasional voice-monkey", Scott explained why he was doing this in addition to his usual type of "Big Finish" production:

"I'm running for a friend of mine - Jac Rayner - who oddly, I've never met properly, but have worked with a lot over the last year. We're doing a lot to raise awareness (and hopefully money) for M.E. related charities over the coming year, particularly a new project - Let's Do It For ME - which is looking for much-needed funding.

"It's a condition that isn't commonly understood, which is one of the reasons I'm running. Obviously I want to raise money, but if people just go to look at my page and read about how M.E. affects people, and spread the word, that in itself is useful. So please, whilst you're here, click the link below and read about what I'm running for. And if you're able to donate, please do. Thanks. S x"

Huge thanks to Scott, his wonderful family and friends, and all those whose generous donations helped exceed his target by raising a total of £2,194 + £456 in Gift Aid!

In her blog, Jac wrote, "The money is wonderful, but the awareness he’s raised has been brilliant too – I know a lot of people can’t afford to donate (or keep on donating), but their understanding is just as appreciated. And as someone who hated running even back when I *could* run, I am in awe anyone who is prepared to put themselves through something like this anyway."

You may recognise some names from the list of sponsors, especially of you are a fan of Dr. Who ...

... and / or if you recall the announcement in March of another project that we are really excited about ..

A Big THANK YOU Scott and your sponsors for such sterling support!

Let's do it for ME!