El Jones with shaved head

El before the shearing!

‘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.’

Wear blue to support ME

Of course WAMES supports people all over WAMES, not just in Pembrokeshire!

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

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

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

• 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.

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

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 Expenditure in ME/CFS: Immune wastage of energy and Rituximab

The following have been updated:

Transdermal micro-nutrients

The central cause: mitochondrial failure

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!