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 websitewww.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 it 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

• Wisgo glas (rhuban neu ddillad) ar y 12fed a bod yn barod i ddweud wrth bobl pam.
• Ymuno â’n digwyddiad ymwybyddiaeth ar Facebook (FB) a gwahodd eraill – ddweud wrthym am eich cynlluniau codi ymwybyddiaeth a phostio llun er mwyn i ni gyd gymryd rhan yn y digwyddiad.
• Follow us on Twitter (in English) and tweet about the issues that matter to people with ME and CFS @WAMESMECFS
• Dweud wrth bobl am ein newsblog fel y gallant gael gwybod beth sy’n digwydd yng Nghymru.
• Sefydlu google alert er mwyn i Google hysbysebu chi pan eitem o ddiddordeb yn ymddangos ar-lein – yna yn ei drosglwyddo i bwy bynnag sydd angen gwybod!
• Peidiwch ag anghofio i noddi El Jones i eillio ei phen ar y 12fed.
• Ydych chi’n gwybod am â diddordeb proffesiynol mewn darganfod mwy am ME? Gofynnwch iddynt gysylltu â Jan i gael gwybod am y ‘gweithwyr proffesiynol network.Tell wrthynt am y gynhadledd IiME yn Llundain ar 1 Mehefin a sut y gallant gael disgownt.

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

Mae El Jones, yn ddewr iawn, yn bwriadu siafio’i phen ar ddiwrnod Ymwybyddiaeth ME, 12fed o Fai, er budd WAMES ac yn eich gwahodd chi i’w noddi hi.

Mae El gyda ME ers pedair mlynedd ac yn byw yn Ne Cymru.

Bydd ei hymdrechion hi, ynghyd a’ch haelioni chi, yn caniatau inni barhau i weithio tuag at fywyd gwell i bobl hefo ME/CFS yng Nghymru.

E-bostiwch hi gyda’ch enw, manylion cysylltu a swm eich cyfraniad, a gwnaiff El gysylltu a chwi. Mi bostiwn y ffoto ar ol y siafio i brofi ei dewrder!

Brain imaging during a simulated reward task showed reduced activation in the right caudate and right globus pallidus of patients with CFS. The reduction in activity (in the CFS group) correlated with measures of fatigue; the greater the fatigue, the greater the reduction in activation.

Given similar findings in patients treated with the antiviral cytokine interferon-alpha, inflammatory cytokines might be involved in chronic fatigue syndrome.

Fatigue is a common feature in neurologic disorders that involve the basal ganglia, such as Parkinson’s disease and multiple sclerosis. The basal ganglia, which mediate motor activity and motivation, are vulnerable to the effects of pro-inflammatory cytokines, and the effects of interferon-alpha on the basal ganglia correlate with fatigue.

Because dopamine is the primary neurotransmitter in basal ganglia, dopamine metabolism may be important in CFS.

Decreased basal ganglia activation in chronic fatigue syndrome subjects is associated with increased fatigue Elizabeth R Unger et al