WAMES & MWWMEG pool resources

On 1st January 2013 WAMES and the Mid & West Wales ME Group (MWWMEG) merged with WAMES. We already had a good working relationship with MWWMEG but we are excited about this opportunity to pool resources, learn from MWWMEG and improve our support and representation of people with ME throughout Wales.  So, what’s next?

A new magazine due out in February

MWWMEG’s informative newsletter was widely appreciated by their members so we have decided to replace our small infrequent newsletter with a magazine which we hope will be of interest to people all over Wales. It will be available free of charge online or by email,  or paper copies can be bought by subscription.  More information in February.

Choose how to get involved

  • become a member and help direct the work of WAMES
  • volunteer and help us to make a difference for people with ME
  • subscribe or join the free e-mailing list
  • donate

OR do all 4!

Support group meetings

MWWMEG’s local get togethers will continue as independent groups, with the support of WAMES. We are always keen to help people to set up new meetings. Find out about all Welsh support groups here.

What else?

We will continue to campaign ,  provide a helpline and information for people with ME, carers and professionals, to the best of our ability. But remember, we are a small organisation with limited funds so please think about how you can help!

 

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Carer Sylvia from WAMES & Text Santa appeal

Sylvia Penny from WAMES talks about what it is like being a full-time carer in  ITV’s Text Santa appeal video.

She is also interviewd on the Carers UK website.

Support ITV’s text Santa appeal and help raise vital funds for Carers UK

 

 

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Dr Dowsett on ME relapses

To commemorate the life of Dr Betty Dowsett the Young ME Sufferers Trust has posted online an article by her about ME relapses.

There’s No Smoke Without Fire! Some comments on the tendency to replase in ME

She lists the main principles of management as:

  • Conservation of energy
  • Reduction of stress
  • Simplification of work

Construct a lifestyle in which it is possible for the illness to stabilise and the sufferer to progress at their own pace towards realistic ambitions.

More about Dr Dowsett

 

 

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ME/CFS Primer for clinical practitioners

The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) has published a Primer for clinical practitioners. It is available as a PDF file and is free to download, though donations are invited. A 42 page spiral bound print booklet can be purchased for $15 from the BookPatch website.

ME/CFS: a Primer for Clinical Practitioners has been developed by an international team of practitioners led by Dr Fred Friedberg.

Highlights of the Primer include:

  • A summary of the pathophysiological effects of ME/CFS to date
  • A user-friendly diagnostic worksheet utilizing the Canadian Consensus Criteria
  • Straightforward treatment suggestions covering an array of ME/CFS symptoms
  • Emphasis on post-exertional malaise and activity management
  • Sections on special populations/ problems (e.g. severely affected, pediatric ME/CFS, pregnancy)

 

 

 

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Pioneer for ME, David Lewis 1939- 2012

Paediatrician David Lewis has died of pancreatic cancer at the age of 73.  As a consultant paediatrician at Bronglais hospital, Aberystwyth, he was one of very few doctors in Wales to take ME seriously in the 1980s and 1990s. His care and concern for children who were often misunderstood and sometimes mistreated, led him to respond to calls for help from many parts of Wales and England. He was willing to travel far and wide to diagnose very sick children, support their families, and speak out against abuse (as in the case of Ean Proctor in the Isle of Man).

His clinic in Aberystwyth accepted adult patients for a time, even though this brought him into conflict with the hospital management. He had an acute intelligence and refreshingly open minded attitude to medicine. He practised homeopathy and recommended treatments that were often considered ‘alternative’. He was sometimes ridiculed by fellow doctors but he did not allow that to stop him looking for ways to safely relieve the suffering of his patients.

Dr Lewis was greatly missed when he retired and he will be remembered as a Pioneer for the physical illness Myalgic Encephalomyelitis. Many patients and families will always be grateful that he believed and supported them when no-one else in the medical community would.

Obituary

 

 

 

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Michelle Penny – Living with ME for the last 17 years

For the last 17 years, Michelle Penny has been crippled by chronic fatigue and pain, which has left her virtually bed-bound. She tells Rachel Mainwaring what it’s like living with ME at Wales online.

Excerpts:

“I relapsed in October and this is probably the worst I’ve ever been,” says Michelle. “People think it’s just a condition that makes you tired all the time but it’s worse then that. It’s the pain that’s the worst thing. It’s not that I’m not motivated to do things, I just can’t. I just don’t have the energy and my legs really hurt…”

Michelle’s condition means she is also very sensitive to light and noise so, while sitting in bed, she has a slightly darkened room with very little natural light coming in, and plays her iPod very quietly, just to provide some background noise…

“It’s more than just being tired. I have trouble concentrating so I can’t even read books anymore, even though I used to love to read. I also get very random headaches…

 

 

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Dr Betty Dowsett 1920-2012 ME champion

It is with deep regret that we announce the death of Dr Betty Dowsett on June 14 in a nursing home in Cambridge at the age of 91.  In 2001, at the age of 80, and already retired for many years, she was the key speaker at the launch of WAMES in the National Assembly in Cardiff, and continued as our adviser. Her support in our early years gave us the confidence to campaign ‘against the flow’ of the medical tide.

Betty was born in Newport, Gwent and studied medicine at Edinburgh University. She worked as a GP in London then after further studies became a consultant microbiologist. She built up an expertise in ME seeing thousands of people with ME from the 1960s onwards, working with Dr John Richardson and Dr. Melvin Ramsey. She was instrumental in setting up the National ME clinic in Essex with Prof Leslie Findley.

In latter years, she also worked with Jane Colby and The Young ME Sufferers Trust (Tymes Trust), on a groundbreaking study into ME as the cause of major long-term sickness absence from school. She continued to lecture and advise patients and professionals about ME following her retirement, at her own expense. She is quoted as saying “ it is not how old you are but what you can do and you are never to old to do something”.

Simon Lawrence of the 25% ME group summed her up:

“She was someone who was relentlessly courageous in fighting the establishment on their stance of ME. She was sympathetic and empathetic to all who contacted her for help and support. She was someone who did not seek glory or try to make a name for herself in all that she did for others but simply did it because, as a doctor and, more importantly, as a human being, she felt it was her duty to help and, indeed, took great pleasure in helping people with this disease.”

The funeral will be held on Friday, June 29. The family have asked that, instead of sending flowers, people should make donations directly to the M.E. charity of their choice.

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

Bibliography of Dr Dowsett’s papers

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The proof El shaved her head for WAMES!

El Jones with shaved head

El Jones with shaved head

Eleanor with hair

El before the shearing!

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‘ME is debilitating, misunderstood, confusing and unpredictable’

Pippa Bennet describes her experience of ME on the We are Cardiff blog:

12th May is International ME awareness day. You know ME, it’s the lazy people’s disease? Well, it’s estimated that over 28 million people now suffer from it in the world and in the US alone, more people now have ME than AIDS.

I have suffered from ME for 13 years, since I was 14. I got glandular fever and it simply never went away. Instead it mutated into a new, terrifying beast. ME is debilitating, misunderstood, confusing and unpredictable. Even the name is debated. Many people prefer the term CFS or Chronic Fatigue Syndrome over ME which stands for Myalgic Encephalomyelitis. It is pure medical semantics, but they both generally describe the same condition – depending on your doctor’s preferred interpretation! The prognosis is ill-defined and unknown too. The best anyone can tell you is that if you contracted is when you were under 18 then you stand a better chance of one day getting better than if you contracted it over the age of 18…

Read the whole article

Pippa’s blog

 

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Raise awareness with WAMES!

Join us in raising awareness of ME:

  • Wear blue on the 12th (either a blue ribbon or blue clothes) and be ready to tell people why.
  • Join our Awareness event on Facebook (FB) and invite others – tell us about your awareness raising plans and post a photo so we can all share in the event.
  • Follow us on Twitter and tweet about the issues that matter to people with ME and CFS @WAMESMECFS
  • Tell people about our newsblog so they can find out what is happening in Wales.
  • Set up a google alert so that Google can email you when an item of interest appears online – then pass it on to whoever needs to know!
  • Don’t forget to sponsor El Jones to shave her head on the 12th
  • Know a professional interested in finding out more about ME? Ask them to get in touch with Jan to find out about the professionals’ network.Tell them about the IiME conference in London on 1st June and how they can receive a discount.

 

 

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