ME Awareness – Join the WAMES ‘Help NHS be ME aware’ campaign

ME Awareness – Join the WAMES #HelpNHSbeMEaware campaign

 

During ME Awareness week 2017 WAMES is launching a challenge to the Welsh Government and NHS Wales to help NHS staff become ‘ME aware’ by developing awareness and training programmes. Read more

 

Do you wish NHS staff knew more about neurological ME?

Have you had a bad experience because your doctor, nurse, paediatrician etc. didn’t know enough about ME?

 

Let the Health Boards know:

  • Email with the challenge and tell them about your experience. Include the link to the blog post and keep it short!
  • Retweet WAMES #HelpNHSbeMEaware and #BeMEAware and #postexertionalmalaise tweets
  • Tweet the NHS staff you follow with  e.g.
    My GP (or nurse or paediatrician etc.) doesn’t understand neurological ME & #postexertionalmalaise. Please provide training!  #HelpNHSbeMEaware #BeMEaware
  • Please give training about ME and #postexertionalmalaise to NHS staff #HelpNHSbeMEaware  #BeMEaware
  • Repost the WAMES FB post
  • Post to NHS FB sites
  • Write to staff at their HQ address
  • Add a # BeMEaware poster

Contact details:

Cabinet secretary for Health

Vaughan Gething AM Correspondence.Vaughan.Gething@gov.wales twitter:   @wgcs_health           https://www.facebook.com/VaughanGething1/

Betsi Cadwaladr UHB

Hywel Dda  UHB

Powys tHB

Abertawe Bro Morgannwg UHB

Cardiff & Vale UHB

Cwm Taf UHB

Aneurin Bevan UHB

 

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Are current CFS criteria diagnosing different disease phenotypes?

Research abstract:

Are current chronic fatigue syndrome criteria diagnosing different disease phenotypes? by Laura Maclachlan, Stuart Watson, Peter Gallagher, Andreas Finkelmeyer, Leonard A. Jason, Madison Sunnquist, Julia L. Newton, in PLoS ONE 12(10) [Published: October 20, 2017]

Importance:

Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms diagnosed with a number of different polythetic criteria. Heterogeneity across these diagnostic criteria is likely to be confounding research into the as-yet-unknown pathophysiology underlying this stigmatised and debilitating condition and may diagnose a disease spectrum with significant implications for clinical management. No studies to date have objectively investigated this possibility using a validated measure of CFS symptoms–the DePaul Symptom Questionnaire (DSQ).

Objective:

To examine whether current CFS diagnostic criteria are identifying different disease phenotypes using the DSQ.

Design:

Case control study.

Setting:

Clinical Research Facility of the Royal Victoria Infirmary, Newcastle upon Tyne, UK.

Participants:

49 CFS subjects and ten matched, sedentary community controls, excluded for co-morbid depression.

Main outcomes and measures:

Self-reported autonomic and cognitive features were assessed with the Composite Autonomic Symptom Score (COMPASS) and Cognitive Failures Questionnaire (COGFAIL) respectively.

Objective autonomic cardiovascular parameters were examined using the Task Force® Monitor and a battery of neuropsychological tests administered for objective cognitive assessment.

Results:

Self-reported autonomic and cognitive symptoms were significantly greater in CFS subjects compared to controls. There were no statistically significant differences in objective autonomic measures between CFS and controls. There were clinically significant differences between DSQ subgroups on objective autonomic testing.

Visuospatial memory, verbal memory and psychomotor speed were significantly different between DSQ subgroups.

Conclusions and relevance:

The finding of no significant differences in objective autonomic testing between CFS and control subjects may reflect the inclusion of sedentary controls or exclusion for co-morbid depression. Consistent exclusion criteria would enable better delineation of these two conditions and their presenting symptoms.

Findings across CFS subgroups suggest subjects have a different disease burden on subjective and objective measures of function, autonomic parameters and cognitive impairment when categorised using the DSQ. Different CFS criteria may at best be diagnosing a spectrum of disease severities and at worst different CFS phenotypes or even different diseases. This complicates research and disease management and may contribute to the significant stigma associated with the condition.

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Jennifer Brea speaks about her film Unrest in UK media

Jennifer Brea and her film Unrest

Jennifer Brea is visiting the UK ahead of the screening of her film Unrest in Parliament in London on 25 October

ITV news interview with Jennifer Brea and Omar Wasow, 18 October 2017

Times, 17 October 2017:  Our lives were frozen by chronic fatigue syndrome

As Jennifer Brea’s chronic illness worsened and she spent more and more time confined to bed, she became increasingly active in her dreams. “Every night I’d have these incredibly kinetic dreams. I was flying or running up mountains. I’d wake up in the morning and realise that I was still in the same bedroom, and many mornings felt really disappointed that I was still alive.”

Guardian, 19 October 2017: Unrest review – powerful documentary about chronic fatigue syndrome

Jennifer Brea uses her own experience and others to build up a multifaceted portrait of the condition and the toll it takes

Cosmopolitan, 18 Oct 2017: What it’s like to live with an incurable illness no-one believes is real

Jennifer Brea was 28 when ME began to suck the life out of her. She was eventually left bed-bound, but doctors insisted tests showed there was nothing biologically wrong.

theupcoming.co.uk, 20 October 2017: “Picking up the camera was really an act of survival”: An interview with Unrest filmmaker Jennifer Brea 

Ahead of the UK release of Jennifer Brea’s widely acclaimed documentary Unrest, which details her experiences coping with chronic fatigue syndrome, we caught up with the filmmaker to discuss finding meaning in a meaningless experience, and how she finally found her voice again through the “magic” of film.

Join WAMES in bringing Jennifer’s film and campaign to Wales: read about #TimeForUnrestWales campaign

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Mid Wales Neuro Info day, Llandrindod Wells, 25 Oct 2017

Mid Powys Neuro Information and Advice Day

 

Neuro Voice Powys (NVP) in conjunction with the Powys Association of Voluntary Organisations (PAVO) will be

hosting an event from 11 a.m. to 1 p.m. for anyone with neurological symptoms.

 

  • Do you, or someone you care for, suffer from fatigue, pain, weakness, tremor, muscle stiffness, foggy brain, headaches or poor memory?
  • Do you, or they, have a neurological condition?
  • Do you need help coping with your symptoms, or managing in day to day life?

If so, come along and drop in for a chat with those who can help at the Neuro Information Day to be held on

Neuro Voice Powys has invited a range of organisations to attend this event including:

  • Clinicians from Powys Teaching Health Board (PTHB) who will explain the role of the Powys Community Neuro Services
  • Carers Corner (with information from Credu and Mid and West Wales Crossroads Care).
  • Displays and information will be available throughout the event from the above organisations plus charities including Headway , The Stroke Association, Parkinsons UK, Epilepsy, Autism Awareness, Dementia, Age Concern, WAMES (Welsh Association of ME & CFS Support), PAVO (Powys Community Connectors/ Info Engine and Befrienders), the SHINE Charity (Spina Bifida/ Hydrocephalous), MS, MND, the RNIB/Action on Hearing Loss and others.
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NHS retrospective healthcare funding claims – register your intent to claim

NHS Retrospective Healthcare Funding Claims

People who believe their care should have been funded by the NHS are being encouraged by the Welsh Government to register their intent to make a claim.

 

People who think they, or someone they care for, may have been eligible for Continuing NHS Healthcare but paid for all, or part, of their care can submit a claim.

 

Potential claimants have until October 31st 2017 to register their intent to make a claim for continuing healthcare costs which were incurred between 1 October 2015 and 31 October 2016.

The NHS will provide advice to claimants and will complete all of the work required to review their case free of charge. This is not a legal process and there is no requirement for people to appoint a solicitor. However, if a solicitor is used, these costs cannot be reimbursed. All claims will be reviewed within six months of the NHS having all the information that it needs. Information on how to submit a claim can be found here

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Cwtch support group meets 20 Oct 2017, Haverfordwest

Evening Meeting of Cwtch:

Fri 20 October 2017, 7-9 pm at Cashfield Community Centre, Haverfordwest, SA61 2GA

Topic: Christmas crafts –  making Christmas crafts to sell at a local craft fair

Cwtch is a support group for adults aged 18-45 years old who have long term or chronic physical health conditions. (One of the organisers has ME).

More info: 07530 870024   cwtch@live.co.uk

CWTCH (Pembrokeshire) website: http://cwtch-pembrokeshire.wales/

Facebook: https://www.facebook.com/CWTCHpembs/

Next meeting: Friday 17 November

 

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Theresa May to scrap Universal Credit helpline charges

BBC news, 19 October 2017: Theresa May to scrap universal credit helpline charges

 

People will be able to call the government’s universal credit helpline without being charged, within weeks.

Prime Minister Theresa May said she had listened to criticism of the charges, which can be up to 55p a minute, and decided it was “right” to drop them.

But she again rejected calls by Labour leader Jeremy Corbyn to “pause” the roll-out of the controversial benefit amid fears it is causing hardship.

In a symbolic vote, MPs backed a pause after Tory MPs were told to abstain.

The opposition won by 299 votes to 0 with one Conservative – Totnes MP Sarah Wollaston – defying her party by siding with Labour.

BBC Parliament Live: As debate happened

What is Universal Credit – and what’s the problem?

Unemployment total drops by 52,000
The outcome is not binding on the government although Labour leader Jeremy Corbyn said ministers must “act on the clearly expressed will of Parliament” and halt its roll out.

Commons Speaker John Bercow advised ministers to take account of the vote and “show respect for the institution” by indicating what they intended to do.

‘Simpler system’
Universal credit, which rolls six working-age benefits into a single payment, is designed to make the system simpler and ensure no-one faces a situation where they would be better off claiming benefits than working.

But it has faced a backlash from Tory MPs, who fear payment delays risk pushing families into destitution.

Explaining her decision to rebel, Dr Wollaston said the length of time people were waiting to be paid – in many cases more than six weeks – was a “fundamental flaw” that must be addressed.

She told the BBC she wanted to “see a much stronger commitment” from government “that they’ll do that immediately”.

At Prime Minister’s Questions earlier, Mr Corbyn said he was glad the PM had “bowed to Labour pressure” by scrapping the hotline charges.

But he added: “The fundamental problems of universal credit remain – the six week wait, rising indebtedness, rent arrears and evictions.

“Will the prime minister now pause universal credit and fix the problems before pressing ahead with the roll-out?”

Mrs May prompted cheers from Labour MPs as she began her reply with “yes”, before urging them to “listen to the whole sentence I was going to make”.

She said universal credit was “a simpler system”, that “encourages people to get into the workplace – it is a system that is working because more people are getting into work”.

The universal credit hotline will become free to use “over the next month”, the government has said, and that would be followed by all DWP helplines by the end of the year.

The government says it makes no money from the 0345 number. It is charged at local rate and is included as a free call in many landline and mobile phone packages but can cost some mobile phone users as much as 55p a minute.

Read more about Universal Credit and watch the videos

Guardian: Universal credit helpline charges to be scrapped

Daily Mail: Labour humiliates Theresa May with Commons victory on a motion attacking Universal Credit as Tory MPs warn the PM scrapping call charges on the benefit help line is not enough

ITV news: Universal Credit helpline call charges abolished after huge criticism

Channel 4 news: Was Jeremy Corbyn right about the cost of the universal credit helpline?

Huffpost: Universal Credit Claimants Charged More Than Tax Avoiders To Call Government

Independent: Universal Credit helpline 55p-a-minute charge to be scrapped, Government announces

 

 

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Show others what living with ME is like through the WAMES’ photo project

ME and my world – a WAMES photo project

ME is a complex and often misunderstood illness.

Throughout 2018 WAMES will be exploring a number of ways to raise awareness of our condition.

To begin with, through a series of portraits and snapshots, the ‘ME and my world’ project aims to show others just what living with the illness is like.

We want to show what your ME world is, what happens when things are really bad, the small things you do to keep yourself going and the interests you have that helped get you through. We want to show the way ME affects people’s lives and how it affects their world and those around them.

Show others what your ME world is like

Take part by observing and recording your life over the next few months.  If you would be willing to be photographed or just want to know more, then please email us at WAMES admin@wames.org.uk

Alternatively aim to send in your own photos that you feel illustrate your struggle with ME.

Tom Martin, photographer (and person with ME) will be overseeing this project.

 

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Rethinking childhood adversity in CFS

Research abstract:

Rethinking childhood adversity in chronic fatigue syndrome, by James E Clark, Sean L Davidson, Laura Maclachlan, Julia L Newton, Stuart Watson in Fatigue: Biomedicine, Health & Behavior [Published online: 10 Oct 2017]

Background:
Previous studies have consistently shown increased rates of childhood
adversity in chronic fatigue syndrome (CFS). However, such
aetiopathogenic studies of CFS are potentially confounded by
co-morbidity and misdiagnosis particularly with depression.

Purpose:
We examined the relationship between rates of childhood adversity using
two complimentary approaches (1) a sample of CFS patients who had no
lifetime history of depression and (2) a modelling approach.

Methods:
Childhood trauma questionnaire (CTQ) administered to a sample of 52
participants with chronic fatigue syndrome and 19 controls who did not
meet criteria for a psychiatric disorder (confirmed using the Structured
Clinical Interview for DSM-IV). Subsequently, Mediation Analysis (Baye’s
Rules) was used to establish the risk childhood adversity poses for CFS
with and without depression.

Results:
In a cohort of CFS patients with depression comprehensively excluded,
CTQ scores were markedly lower than in all previous studies and, in
contrast to these previous studies, not increased compared with healthy
controls. Post-hoc analysis showed that CTQ scores correlated with the
number of depressive symptoms during the lifetime worst period of low
mood. The probability of developing CFS given a history of childhood
trauma is 4%, a two-fold increased risk compared to the general
population. However, much of this risk is mediated by the concomitant
development of major depression.

Conclusions
The data suggests that previous studies showing a relationship between
childhood adversity and CFS may be attributable to the confounding
effects of co-morbid or misdiagnosed depressive disorder.

Keywords: Childhood adversity, chronic fatigue syndrome, modelling,
childhood trauma, depression

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WAMES is looking for a new treasurer

Are you good with figures?

Liz Chandler has been our treasurer for over 10 years, but now needs to step down.

The role of the treasurer is to:

  • Maintain an overview of WAMES’ financial affairs and advise the committee on budgets
  • Ensure that proper financial records and procedures are maintained

To find out more contact Jan jan@wames.org.uk

Please note:

  • Training can be arranged
  • Most tasks can be carried out from home
  • The post is available as ‘role share’
  • You don’t have to be knowledgeable about ME
  • Your work will be critical for continued campaigning and awareness raising in Wales!
  • A minimum 3 year commitment would be preferred
  • Volunteer roles are good preparation for job hunting, and can be included on CVs
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Report Hate Crime!

This week is National Hate Crime Awareness week

14th to 21st October 2017

A hate crime is where an individual is targeted because of their identity or perceived difference. It could be an act of violence or hostility or discrimination. Victims may have been bullied harassed or abused.

Hate crime destroys lives and isolates vulnerable individuals and communities. It is known to happen but it remains under reported. Left unreported, offenders are free to continue committing this crime. We want this to change. We want everyone to encourage and support people to talk about hate crime and most importantly REPORT IT.

  • If anyone tells you that they have been a victim, listen to their story and encourage them to report it
  • If you witness it, report it… You don’t have to be a victim to make a report
  • In an emergency call the police 999, if it is not an emergency call  101
  • If you don’t want to report to the police you could contact your local council.
  • Report online https://www.reporthate.victimsupport.org.uk/ or ring 0300 30 31 982 (FREE) 24/7
  • Download Hate Crime is wrong leaflet
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