Group for parents of children with any health condition meets Caldicot, 3 May 2016

Group for Parents of Children with any Health Condition

Having a child with additional health needs can be challenging at times. Being able to share difficulties in a supportive and accepting group can help parents feel more confident.

Meetings to be held on Wednesday 3rd May and Wednesday 7th June from 9.30am—11pm at Caemawr Road Health Centre, Caldicot, NP26 4EW.

For further info see leaflet or call Nicole Webber on 07843 343 951

Download flyer

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Older people & independent advocacy survey – your participation invited

The Older People’s Commissioner for Wales want to know about Access to Advocacy

Independent advocacy can make a real difference to older people’s lives, helping to ensure that their voices are heard and that they have support, something that is particularly important during difficult or challenging times.

An advocate can

  • Support you to know your rights so you receive fair and equal treatment and access services that meet your needs.
  • Support you to understand information so you can consider all your options and make informed decisions.
  • Support you to have your voice heard so you can live the life you choose.

In certain circumstances, older people have a legal right to access and be supported by an independent advocate, yet many older people are unable to access these services.

The Commissioner’s survey

The Commissioner is therefore undertaking work to understand how access to independent advocacy currently works in practice in Wales, ahead of the publication of a report early next year that will give a voice to older people and highlight their experiences of using independent advocacy services. The report will also include good practice examples and set out what improvements need to be delivered to ensure that older people can access these essential services when they are entitled to them.

To support this work, the Commissioner wants to hear from older people who have used independent advocacy about their experiences, as well as from professionals and those working with older people who have supported older people to access these services, which will help her to create a Wales-wide picture of older people’s access to advocacy.

Complete the short online survey

If you would like a hard copy of the questionnaire call on 03442 640670

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ACTivate your life – wellbeing sessions in Gwent start 2 May 2017

Activate Your Life  is a four session course that aims to teach people about stress and suffering caused by emotional issues and offers a slightly different approach to more conventional methods of dealing with emotional and physical problems.

Ebbw Vale

  • Tuesday 2 May- 23 May   10-12am
  • Ebbw Vale Institute, Church Street, NP23 6BE

 Caerphilly

  • Wednesday 3-24th May  5.30-7.30 pm
  • Room K03 (Main Building), Coleg Gwent, Crosskeys Campus, Risca Rd, Crosskeys NP11 7ZA

Pontypool

  • Thursday 4-25 May  12-2pm
  • Pontypool Leisure Centre, Trosnant Street, Pontypool  NP4 8AT

Caerphilly

  • Monday 15 May – 12 June 2-4.30 pm
  • Caerphilly Library, The Twyn, Caerphilly CF83 1JL

Newport

  • Wednesday 24 May – 24 June 10-12pm
  • King’s Church, 71 Lower Dock Street, Newport NP20 1EH

Newport

  • Wednesday 31 May -21 June  6-8pm
  • Maindee Library, 79 Chepstow Road, Newport NP19 8BY

All courses above are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

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ME/CFS linked to imbalanced microbiome

Columbia University Mailman School of Public Health Press release, 26 April 2017: Chronic fatigue syndrome linked to imbalanced microbiome

Scientists identify abnormal levels of specific gut bacteria in individuals with chronic fatigue syndrome, including those with and without co-morbid IBS

Scientists at the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health have discovered abnormal levels of specific gut bacteria related to chronic fatigue syndrome/myalgic encephalomyelitis, or ME/CFS, in patients with and without concurrent irritable bowel syndrome, or IBS. Findings are published in the journal Microbiome.

The study is among the first to disentangle imbalances in the gut bacteria in individuals with ME/CFS and IBS. ME/CFS is a complex, debilitating disorder characterized by extreme fatigue after exertion and other symptoms including muscle and joint pain, cognitive dysfunction, sleep disturbance, and orthostatic intolerance. Up to 90 percent of ME/CFS patients also have IBS.

The researchers followed 50 patients and 50 matched healthy controls recruited at four ME/CFS clinical sites. They tested for bacterial species in fecal samples, and for immune molecules in blood samples.

They report:

  • Levels of distinct intestinal bacterial species–Faecalibacterium, Roseburia, Dorea, Coprococcus, Clostridium, Ruminococcus, Coprobacillus–were strongly associated with ME/CFS; their combined relative abundance appeared to be predictive of diagnosis
  • Increased abundance of unclassified Alistipes and decreased Faecalibacterium were the top biomarkers of ME/CFS with IBS; while increased unclassified
  • Bacteroides abundance and decreased Bacteroides vulgatus were the top biomarkers of ME/CFS without IBS
  • An analysis of bacterial metabolic pathways associated with disturbances in gut bacteria revealed distinct differences between ME/CFS and ME/CFS subgroups relative to healthy controls
  • In ME/CFS subgroups, symptom severity measures, including pain and fatigue, correlated with the abundance of distinct bacterial types and metabolic pathways
  • No changes were observed in immune markers–a finding that may reflect the dearth of participants who had been ill for a short time; earlier research suggests immune changes may only be evident when comparing short and long duration cases

“Individuals with ME/CFS have a distinct mix of gut bacteria and related metabolic disturbances that may influence the severity of their disease,” says co-lead investigator Dorottya Nagy-Szakal, postdoctoral research scientist at CII.

“Our analysis suggests that we may be able to subtype patients with ME/CFS by analyzing their fecal microbiome,” says co-lead investigator Brent L. Williams, assistant professor of Pathology and Cell Biology at CII. “Subtyping may provide clues to understanding differences in manifestations of disease.”

“Much like IBS, ME/CFS may involve a breakdown in the bidirectional communication between the brain and the gut mediated by bacteria, their metabolites, and the molecules they influence,” says senior author W. Ian Lipkin, director of CII and John Snow Professor of Epidemiology at Columbia’s Mailman School. “By identifying the specific bacteria involved, we are one step closer to more accurate diagnosis and targeted therapies.”

Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/ chronic fatigue syndrome by Dorottya Nagy-Szakal, Brent L. Williams, Nischay Mishra, Xiaoyu Che, Bohyun Lee, Lucinda Bateman, Nancy G. Klimas, Anthony L. Komaroff, Susan Levine, Jose G. Montoya, Daniel L. Peterson, Devi Ramanan, Komal Jain, Meredith L. Eddy, Mady Hornig and W. Ian Lipkin in Microbiome 2017 5:44 [Published: 26 April 2017]

Microbe discovery project, 26 April 2017: Ian Lipkin’s CII team shows gut bacteria in ME/CFS may influence disease severity

The Times article by Tim Whipple, 26 April 2017: Gut bacteria linked to chronic fatigue

Medical news today article by Tim Newman, 26 April 2017:  Link between chronic fatigue syndrome and gut bacteria explored

Vocativ article, by Ed Cara, 26 April 2017: Scientists Step Closer To Understanding Mysterious Fatigue Syndrome

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Take part in the Welsh Government survey on Independent Living

Welsh Government Press release, 11 April 2017: Survey – Framework for action on independent living 

This survey will help the Welsh Government to check that our future plans will address the barriers to independent living that are the most important to disabled people.
Please tell us about your experiences.

The closing date for responses is 31 May 2017.

Complete online survey     Arolwg ar-lein cyflawn

Background:
The Welsh Government’s Framework for Action on Independent Living was published in 2013. The Framework sets out what the Welsh Government is doing to make Wales a better place for disabled people, so they can have the same opportunities as everyone else and live their lives in the way they choose for themselves.

The Framework includes a list of actions, many of which have been completed or need updating.

Document Download:

Survey – Framework for action on independent living (Word version) (File size: 29KB)

Plan for Independent Living – Easy read survey (File size: 985KB)

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The Stanford Paradox: elevated energy production found in ME/CFS

Health rising blog post, by Cort Johnson, 18 April 2017: The Stanford Paradox: Elevated Energy Production Found in Chronic Fatigue Syndrome (ME/CFS)  

Producing energy is a big problem in Chronic Fatigue Syndrome (ME/CFS). In fact it’s probably the problem in ME/CFS, which is why the findings of mitochondrial dysfunction and lowered ATP production have made sense. When the metabolomics studies suggested that chronic fatigue syndrome (ME/CFS) was a hypometabolic state, the field seemed set: energy production (ATP) was low and the mitochondrial activity probably was too. Fatiguing disease and low ATP production: it seemed to make so much sense.

Then came the study with the eye-catching title: “Elevated Energy Production in Chronic Fatigue Syndrome Patients.” It suggested that far from being low, cellular energy production was actually abnormally high in ME/CFS patients. Even for a field that’s had more than its share of inconsistent findings, that was a real lu-lu.

The results, though, could not be ignored. They didn’t come from a small research group but from the Xinnan Wang Lab at Stanford.  Last year the lab – which is devoted entirely to studying the mitochondria – made headlines with its potentially seminal finding in Parkinson’s disease.  It uncovered a defect that prevented Parkinson’s patients from removing their mitochondria as their mitochondria start to wear out. That defect left those mitochondria pumping toxins into the brain.  Because the defect was present in different types of Parkinson’s patients, it suggested that a “mitochondriopathy” might lie at the core of the disease.

Plus the patient samples in the Wang ME/CFS study came from some of our best ME/CFS experts. Plus it was funded by an ME/CFS group – the Chronic Fatigue Initiative – that hires only the best researchers. There was no looking past this result.

Read Cort Johnson’s exploration of the study

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BBC Woman’s hour interview with woman with ME

BBC iplayer, 24 April 2017: BBC Radio 4 Woman’s hour programme: Interview with a female actor from Glasgow who has had ME since she was 9.

She discusses how she became ill and gives a very good overview of how it has affected her over the years. She mentions how it affects her ability to work and her worries about being able to self care and live independently.

Available to listen to or download   29:45 – 33:15 mins  (3 and a half minutes long)

 

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ACTivate your life classes, Bronllys Powys 2 May 2017

ACTivate Your Life classes – Tuesdays (4 weeks)

  • Event Date: 2 May 2017
  • Where:  Concert Hall, Bronllys Hospital, Brecon LD3 0LU
  • Time:  2.00 pm – 4.00 pm
  • Tuesdays – 2nd, 9th, 16th & 23rd May
  • organised by Centre for long term condition management, Powys Health Board

4 weekly ACTivate Your Life classes will teach you:

  • How your mind works
  • How your reactions may be making problems worse
  • How to make wise decisions
  • How to do what matters to you
  • How to face up to life

This is a free course designed to teach skills and manage how we react to problems. There is no assessment, no registration and no waiting list. Just turn up, take a seat and learn!

An overview of the programme can be found here

Feel free to bring someone along for support.

For more information on these programmes please contact:

activate.pow@wales.nhs.uk or phone 01874 712 449

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Disability Rights UK Brexit manifesto consultation

Disability Rights UK blog post, 21 April 2017: Disability Rights UK Research and Manifesto on Brexit

Disability Rights UK has been researching the possible impact of Brexit on disabled people’s rights.

This has included looking at UK laws that have a basis in EU law and what might be required to avoid aspects being lost or changed to the disadvantage of disabled people.

We held a roundtable in March 2017, attended by over 40 delegates from a range of disability organisations, including Centres for Independent Living, charities, Trade Unions and individual disabled people. To provide some legislative and policy context, we commissioned an analysis by Professor Anna Lawson, Director of the Centre for Disability Studies, University of Leeds.

We have also participated in other events on influencing Brexit debate and policy held by; the European Network for Independent Living, Thomas Paine Initiative, Equality and Diversity Forum, Joseph Rowntree Reform Trust and Cloisters Law Firm.

We are consulting on the development of the following ‘manifesto’ on what the disability rights sector should be seeking from a post-EU UK. We welcome further suggestions and input by email to tony.stevens@disabilityrightsuk.org (please send these by 5th May 2017)

Disability rights manifesto for Brexit

  • No loss of EU-based rights, including in relation to air and ship travel, web accessibility, accessible goods and services, public procurement and manufactured goods
  • No regression in disability rights: no changes to primary legislation without parliamentary scrutiny (i.e. no Henry VIII clauses), no watering down of secondary legislation, no discarding disability equality rules and regulations as ‘red tape’
  • Continued commitment to being ahead of the curve on disability rights – fully committing to implementing the new European Accessibility Act once passed, building human rights clauses into future trade agreements and at least matching future progressive developments in EU disability rights law
  • At least matching current EU funding of DPOs and disability rights – this includes EU funding that supports
    a) disabled people’s participation and voice
    b) independent living
    c) other UN Convention rights
    d) research on issues of importance to disabled people and with particular attention given to parts of the UK where loss of EU funding would damage the DPO sector
  • A full equality impact assessment of plans for freedom of movement, ensuring no disproportionate impact on
    a) disabled EU citizens living in the UK
    b) carers
    c) disabled British citizens living in other EU, and
    d) no detrimental impact on disabled people’s independence through reducing the PA workforce.
    This must involve detailed scrutiny of plans for EU citizens in the UK in terms of rules about ‘self-sufficiency’ and requirements for ‘comprehensive health insurance’
  • Continued mutual recognition initiatives useful to disabled people – for instance badges to enable disabled people to park and cards offering other access and benefits
  • Continued commitment to the European Convention on Human Rights

Background resources:

Brexit and Disabled People: Background Paper  by Professor Anna Lawson, University of Leeds

Video presentation by Professor Anthony Valcke, Supervising Solicitor EU Rights Clinic

5 takeaways on Brexit study on Brexit and citizens’ rights produced by the European Citizen and Action Service

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A content analysis of CFS & ME in the US news from 1987 to 2013

Research abstract:

A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013, by Zachary A Siegel, Abigail Brown, Andrew Devendorf,  Johanna Collier, Leonard Jason in Chronic Illness [Preprint April 2017]

Objectives:
The aim of this study was to analyze the content of American newspaper articles (n=214) from 1987 to 2013, in order to understand how the public digests information related to Chronic Fatigue syndrome, a controversial and misunderstood illness.

Methods:
A novel codebook derived from the scientific literature was applied to 214 newspaper articles collected from Lexis Nexis Academic(r). These articles were coded quantitatively and frequency tables were created to delineate the variables as they appeared in the articles.

Results:
The etiology was portrayed as organic in 64.5% (n=138) of the articles, and there was no mention of case definitions or diagnostic criteria in 56.1% (n=120) of the articles. The most common comorbidity was depression, appearing in 22.9% (n=49) of the articles. In 55.6% (n=119) of the articles, there was no mention of prevalence rates. In 50.9% (n=109) of the articles, there was no mention of any form of treatment for the illness. A total of 19.4% (n=42) of the headlines mislabeled the name of the illness.

Discussion:
Based on descriptive statistics of all 214 coded articles, media communicated mixed messages for salient variables such as the name of the illness, its etiology and treatment.

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