El Jones with shaved head
El before the shearing!
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Western Telegraph urges people to wear blue to support ME
The Western Telegraph item about ME Awareness week:
‘A support group for people in Pembrokeshire living with ME is urging people to wear blue tomorrow to show support for International ME Awareness Day.
The Welsh Association of ME & CFS Support (WAMES) is also urging supporters to post a picture of themselves wearing blue on their new Facebook page.
The group has increased its social media presence to coincide with ME Awareness Week, which ends tomorrow, extending its online presence into Facebook and Twitter.
It is inviting people in Pembrokeshire with ME in Wales to share their stories through the social networks, or through their website www.wames.org.uk .
Pembrokeshire-based WAMES volunteer Sharon Price, who has had ME since her late teens said: “As there is no NHS specialist consultant for ME in Wales, charities like WAMES and the Mid and West Wales ME Group are vital sources of information and support for those diagnosed with ME and Chronic Fatigue Syndrome.
“We also campaign for better understanding and awareness of the illness and better services for those affected, as well as raising funds for biomedical research.
She said that WAMES would like to hear from people in Pembrokeshire with ME as well as their carers or family.
“We need to build up an accurate picture of people’s experiences of services so we can present patients’ stories to health professionals and service commissioners. “You can help by sending us your story, completing a questionnaire, or joining us on Facebook.’
Of course WAMES supports people all over WAMES, not just in Pembrokeshire!
ME Awareness on Radio Cardiff May Sat 12th
Niki Stitch (musician) is appearing on Radio Cardiff Saturday 12th, 7-9am and is going to be giving ME Awareness Day a mention. Please tune in.
Her CD will be on sale for suggested donations of £3 -£5. All proceeds are going to WAMES and the ME Association. Ring in to order 02920 235664.
Soulful Saturday Breakfast on Radio Cardiff 98.7FM
‘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…
MESiG AGM / Awareness event
Saturday 19th May at Ararat Baptist Church, Plas Treoda, Whitchurch CF14 1PT
4pm-5pm AGM/Presentations for members and potential members
Open to the public:
5pm-6pm Food, Browsing Stalls
6pm-7pm Guest Speaker
Guest speaker Naturopath Emma Jones- ‘Change your life and your symptoms forever’ with the healthy Jones naturopathic nutrition approach.
contact: 02920762347 christallaconstantinou@talktalk.net
MESiG: ME Support in Glamorgan
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.
IiME medical conference – discount available for professionals
The 7th International Invest in ME Conference will be held on 1st June 2012 in London:
Building a Future for Research into ME: Clinical and Research Updates in Myalgic Encephalomyelitis
Top experts will be speaking and important CPD (Continuing Professional Development) points are available for healthcare professionals.
WAMES will ‘sponsor’ professionals to attend so they will receive a discount. Contact Jan
Chair yoga in Cardiff
A new Chair Yoga Class is designed to improve posture, breathing, balance, coordination and strength. It includes relaxation techniques and a short meditation which is all done sitting (and standing if able).
At Heath Citizens community Hall Heath Park.
Thursday mornings 10.30 to 12. Cost £5.00 drop in –only, pay when you come.
Parking right outside and ramp to enter. More information
Contact Carol 02920217480 or email
Energy expediture in ME/CFS
A new article has been added to Dr Sarah Myhill’s website:
Energy Expenditure in ME/CFS: Immune wastage of energy and Rituximab
The following have been updated:
The central cause: mitochondrial failure
Posted in News
Tagged Dr S Myhill, energy, immune wastage, micro-nutrients, mitochondria, rituximab
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Eleanor is ‘hair-raising’ for WAMES on 12th May
El Jones is bravely going to shave her head on ME Awareness day, 12th May, in aid of WAMES and invites you to sponsor her.
Eleanor has had ME for 4 years and lives in south Wales.
Her efforts combined with your generosity will enable us to continue working towards a better life for people with ME & CFS in Wales.
Email her with your name, contact details and the amount you wish to sponsor her for, and El will get in touch with you. We’ll post the ‘after photo’ to prove her bravery!
