Cymorth sydd ei angen yn Sir Drefaldwyn

Trustees are needed to save an important project designed to help people with ME and other neurological conditions in Powys. It will be run by MANGO (Montgomeryshire Alliance of Neurological Groups and Organisations) with the help of PAVO .

Community Voice funding has been promised for MANGO to employ a project worker for 4 years, whose job would be to help people with neurological conditions get their voice heard and influence service provision, first in Montgomeryshire, and then in the rest of Powys.

An added feature of this funding is that the Big Lottery required service providers to commit to engaging with service users, increasing the chance that we will actually be able to make a difference.

That project is now in jeopardy since officers had to retire due to poor health.

The Community Voice grant is only given to fully constituted groups, so in order to access the money and employ a project worker at least 2 more officers need to get involved in the committee ASAP. This project could potentially make a big improvement to the quality of life and care of people with neurological conditions throughout Powys, and their carers so if you think you can help please contact Jan for more information.

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IACFS/ME cyfnodolyn ar lludded nawr ar-lein

The new journal published by the International Association of CFS/ME is now online. This is a special free access double issue. Subsequent issues will be available by login to full members of IACFS/ME. Also, a print version can be ordered.

Fatigue: Biomedicine, Health & Behavior

Among the seven papers in this first issue, there is a review article on envelope theory by award-winning CFS/ME researcher Leonard Jason. Also the new issue highlights a controlled study from the University of California research team headed by renowned sleep expert Sonia Ancoli-Israel. The topic: chronic fatigue and sleep disruption in cancer patients with implications for light therapy treatment.

Topics to be covered by the journal include: fatigue in diseases such as cancer, autoimmune diseases, multiple sclerosis (MS), pain conditions, mood disorders and circulatory diseases. Friedberg and his editorial board will also consider papers on chronic fatigue syndrome (CFS/ME), fibromyalgia, fatigue in sleep, aging, exercise, sport and occupations. As Friedberg notes, ‘More generally Fatigue will publish on the biology, physiology and psychosocial aspects of fatigue as well as assessment and treatment.’

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ME a CFS mwyaf anodd i feddygon teulu i gyfeirio

The Aviva Health of the nation Index 2013 presents the results of  a study canvassing the opinions of GPs and 1,000 patients across the UK:

“As with last year’s survey, GPs told us that they were still struggling to refer patients on for more specialist insights to Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Over a period of ten years, these are still the number one conditions that GPs find most challenging to refer on for specialist attention. What’s most alarming however, is that 42% of GPs thought the NHS would no longer provide services for ME and CFS by 2015.”  (page 22)

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Cwlch gwael yn ddramatig yn newid y corff

BBC News reports that a run of poor sleep can have a potentially profound effect on the internal workings of the human body according to UK researchers.

The activity of hundreds of genes was altered when people’s sleep was cut to less than six hours a day for a week.

Writing in the journal PNAS, the researchers said the results helped explain how poor sleep damaged health.

Heart disease, diabetes, obesity and poor brain function have all been linked to substandard sleep.

What missing hours in bed actually does to alter health, however, is unknown.

So researchers at the University of Surrey analysed the blood of 26 people after they had had plenty of sleep, up to 10 hours each night for a week, and compared the results with samples after a week of fewer than six hours a night.

More than 700 genes were altered by the shift. Each contains the instructions for building a protein, so those that became more active produced more proteins – changing the chemistry of the body.

Meanwhile the natural body clock was disturbed – some genes naturally wax and wane in activity through the day, but this effect was dulled by sleep deprivation.

Prof Colin Smith, from the University of Surrey, told the BBC: “There was quite a dramatic change in activity in many different kinds of genes.”

Areas such as the immune system and how the body responds to damage and stress were affected.

Prof Smith added: “Clearly sleep is critical to rebuilding the body and maintaining a functional state, all kinds of damage appear to occur – hinting at what may lead to ill health.

“If we can’t actually replenish and replace new cells, then that’s going to lead to degenerative diseases.”

He said many people may be even more sleep deprived in their daily lives than those in the study – suggesting these changes may be common.

Dr Akhilesh Reddy, a specialist in the body clock at the University of Cambridge, said the study was “interesting”.

He said the key findings were the effects on inflammation and the immune system as it was possible to see a link between those effects and health problems such as diabetes.

The findings also tie into research attempting to do away with sleep, such as by finding a drug that could eliminate the effects of sleep deprivation.

Dr Reddy said: “We don’t know what the switch is that causes all these changes, but theoretically if you could switch it on or off, you might be able to get away without sleep.

“But my feeling is that sleep is fundamentally important to regenerating all cells.”

How to get a better night’s sleep

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cylchgrawn newydd o WAMES

The first issue of me voice: the wames magazine has been published today. There will be 5 issues a year providing a distinctively Welsh context  for sharing news and views surrounding ME. You can subscribe to a paper copy, have a pdf emailed to you, or download it from the website.

There are special news sections for young people, carers and those living with ME. As part of the wames information exchange (which inlcudes the newsblog, twitter feed, facebook page and e-group) we hope there will be a way for everybody to keep up to date with what’s happening in Wales and beyond.

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Bydd toriadau budd-daliadau taro economi Cymru

The two reports commissioned by the Welsh Government to better understand the impact of the welfare reforms show that the changes to the UK welfare system announced prior to December’s Autumn Statement will reduce total benefit and tax credit entitlements in Wales by around £590 million in 2014-15. Additional cuts announced in December’s Autumn Statement mean losses will be even higher than this.

Overall, families with children and those from low-middle income families will suffer the most from the changes.

Reforms to Disability Living Allowance account for some of the greatest cuts in Wales. Around 42,500 people in Wales are estimated to lose their entitlement as a result of this reform – an average loss of up to £83 per claimant per week and an annual loss of up to £183m in Wales as a whole.

Those hit by the cuts in welfare payments are likely to reduce their spending on goods and services, taking even more money out of the Welsh economy.

Although one of the UK Government’s main aims is for the welfare reforms to get more people into work, this research suggests that any effects on employment in Wales are likely to be small, and will depend on wider economic conditions.

Devastating impact of UK Government’s welfare reforms on people of Wales revealed

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Arolwg am ofalu

  • Out of pocket?
  • Health suffered?
  • Given up work?
  • No social life?

Tell Carers UK about it. They need to hear about the impact caring has had on your life as part of their major Caring and Family Finances Inquiry. They are aiming to provide a definitive examination of the financial impact of caring and assess the impact of the Government’s changes to the benefits system. Running throughout 2013, the Inquiry will have carers’ voices at its heart, collecting evidence via public polling, survey data and through evidence sessions involving carers across the UK.

Carers Wales will also be able to use the information to get a clear picture of the situation in Wales so that they can feed in to the Ministerial Group on Welfare Reform at the Welsh Government and help it to inform their work and future campaigning.

State of caring survey

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Gweithdy hawliau gofalwyr

Carers Wales is holding a free workshop for carers who would like to learn more about their legal rights on Tuesday 5th March 2013 at River House, Ynysbridge Court, Cardiff CF15 9SS from 10.30am until 2.00pm. A light lunch will be provided. For further information contact: Pat McCarthy, Carer Participation Officer on 0786 653 9075

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Adolygiad o ganllawiau NICE gohirio

At the beginning of January, The ME Association wrote to NICE (National Institute for Clinical Excellence) to ask for clarification on what was happening regarding the expected 2013 review of the NICE guideline on ME/CFS. They replied saying the review process is being overhauled and more information would be announced during 2013/14.

ME Association news item

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Caerdydd Zumba digwyddiad codi arian

ME Support In Glamorgan (mesig) are holding a fundraiser/awareness event on Valentine’s Day.

This is to raise £3000 for a person with ME to go to Burrswood hospital in Kent. The lady is bedbound. She has been allocated a place but NHS won’t fund the £3000 needed and social services are not meeting her needs.

Poster

Donate: cheques can be made out to ‘mesig’ and posted to 75 Llanon Rd, Llanishen, Cardiff, CF14 5AH

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