The WAMES AGM will be held on Friday 9th March 2012 in Dinas Powys.

Open to all members. Contact Jan if you wish to attend.

Former Civil Engineer Gemma Phillips from South Wales talks about her experience of the benefit system. This digital story was presented at Disability Wales’ ‘Unequal Cuts’ seminar on the impact of benefit and public service cuts on disabled people, at the Newport Hilton on 19 October 2011.

New diagnostic criteria for ME have been published by 25 authors from 13 countries, led by Canadian guidelines editors Bruce M Carruthers MD CM FRCP(C) and Marjorie I van de Sande BEd GradDip Ed, and including WAMES’ medical adviser Dr Nigel Speight. The panel used the Canadian consensus document as a starting point but made a number of significant changes, achieving 100% consensus and citing 123 publications to support its recommendations.

Main points include:

• “In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology.”
• “…diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.”
• “A patient with ME will meet the criteria for post-exertional neuroimmune exhaustion (PENE), at least one symptom from three neurological impairment categories, at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories, and at least one symptom from energy metabolism/transport impairments.”
• “Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”
• “Atypical Myalgic Encephalomyelitis meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms.”

Abstract             Excerpts from paper

Gwyn Hopkins, a 60 year old grandmother has just completed a 150 mile trek across the width of Wales in aid of ME in 10 days using footpaths and bridleways and spending nights in her one woman tent.

Thirteen years ago Gwyn was struck down with M.E. After weeks in hospital she became bedbound in her own home and faced a future in which mobility meant being pushed in a reclining wheelchair.

Her walk across Wales was aimed at demonstrating to the tens of thousands of ME sufferers in Britain that a full recovery is possible. Also she wanted to raise funds for “M.E. Research UK”, a charity funding biomedical research into ME.

“I want to do it simply because – now – I can” says Gwyn “it is such a joy to be out in the countryside again after spending years in bed, unable to walk more than a few paces. If I can help or inspire M.E. sufferers at the same time then that’s great.”

Gwyn, a former Monmouth care support worker who now lives in Somerset, says she made her against-the-odds recovery with great family support and by adopting Complementary Therapies. It took her 5 years.  More about Gwyn  Donate  to her charity

WAMES’ Information for all campaign launched during ME Awareness week

ME & CFS information for all

10 years of campaigning for better services and talking to people with ME, carers and professionals has shown us that accurate information about ME is not reaching those who need it. During ME Awareness week WAMES is launching a campaign to provide better information in Welsh and English for all who need it, beginning with our new website. We are using research results, clinicians’ experience and patient and carer stories to produce information sheets on a wide range of topics. By including the results of biomedical research we hope we can change many of the misconceptions about the illness that exist within the health service and general public, thus improving dialogue between professionals and those affected by ME, leading to an improvement in their quality of life.