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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‘Invest in your health’ course 24 Aug 2017, Llandrindod Wells, Powys

‘Invest in your health’   A course to help you maintain or improve your health and wellbeing

  • change your life
  • take control
  • become more mindful
  • improve your mood
  • eat healthier
  • manage your health condition
  • be active
  • learn new skills
  • connect with others
  • set goals

Invest in Your Health is a course designed for people who live with a health condition or live with someone who has a health condition.

Booking is essential.

Free 6 Week Programme

A mix of group work, presentations and discussions

Next Programme starts: Mind, Crescent Chambers, South Crescent, Llandrindod Wells LD1 5DH     Thursday 24th August 2017, 1pm – 3:30pm

For more information or to book please contact The Invest in Your Health Team, Powys Teaching Health Board Email: invest.pow@wales.nhs.uk or 01874 712507

Webpage

 

 

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Joining together to improve health & social care in South Gwynedd

The South Gwynedd Long Term Health and Chronic Conditions Alliance

is a forum where individuals and organisations can work in partnership to be one voice for all people with long term and chronic conditions in Merioneth county, Gwynedd:

  • Raising awareness of long term and chronic health conditions
  • Campaigning for service improvements

WAMES is a member pf this alliance and is looking for someone who lives in the area to represent WAMES and all people with ME and their carers.  Contact Jan for more information: jan@wames.org.uk

  • The next South Gwynedd Long Term Conditions Alliance meeting will be held on Monday September 25 at 10am at Dolgellau Hospital
  • The Good Health Event this year will be held on Friday October 13th at the Glan Wnion Leisure Center, Dolgellau    Flyer
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Inflammation correlates with symptoms in CFS

Research overview abstract:

Inflammation correlates with symptoms in chronic fatigue syndrome, by Anthony L Komaroff in PNAS August 15, 2017

It is not unusual for patients who say they are sick to have normal results on standard laboratory testing. The physician often concludes that there is no “real” illness and that the patients’ symptoms likely stem from a psychological disorder. An alternative conclusion, often honored in the breach, is that the standard laboratory tests are measuring the wrong things.

Chronic fatigue syndrome (CFS)―also called myalgic encephalomyelitis/chronic fatigue syndrome―is such an illness. Often, the condition begins suddenly, following an “infectious-like” illness. For years, patients do not return to full health. The illness waxes and wanes, and at its worst leads patients to be bedridden or unable to leave their homes. A report from the National Academies estimates that CFS affects up to 2.5 million people in the United States and generates direct and indirect expenses of $17–24 billion annually (1). The most widely used case definition (2) consists only of symptoms. This, along with typically normal results on standard laboratory tests, has raised the question of whether there are any “real” objective, biological abnormalities in CFS. In PNAS, Montoya et al. (3) report the latest evidence that there are such abnormalities.

Indeed, research over the past 30 y has discovered pathology involving the central nervous system (CNS) and autonomic nervous system (ANS), energy metabolism (with associated oxidative and nitrosative stress), and the immune system, as described in a detailed review (4). This Commentary will briefly summarize the evidence, providing citations only to work published since this review. I will then place the report by Montoya et al. (3) in context, and speculate about the pathophysiology of the illness.

Read more

 

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Hywel Dda Health Board asks how they can transform clinical services in Mid & West Wales

Hywel Dda University Health Board says:

Transforming Clinical Services – Help us improve our NHS for Mid and West Wales

Hywel Dda University Health Board has launched a new clinically-led engagement and listening exercise to ask local residents and stakeholders exactly what they want from their future NHS services. Take part on Facebook or by online questionnaire.

This is your chance to tell/ask the Health Board about:

  • the difficulty in getting a diagnosis for suspected ME
  • the lack of knowledge about ME  and its key characteristic (the post exertional response) throughout the Health Board
  • the lack of quality in the care of people with ME
  • why the ME specialist consultant is no longer allowed to hold ME clinics
  • why people with ME don’t get appropriate referrals to medical or support services
  • why there are no home based palliative care services for the severely affected
  • why the severely affected are made more ill by ill informed nursing and social care at home which forces patients to do more for themselves than is good for them, leading to relapse and increase in symptoms
  • why no person with ME is given a care plan as recommended by NICE
  • etc. etc.

The Health Board goes on to say:

We want everyone to have a good experience of our services and we also want to make sure that we spend your money wisely. We believe the best way to do this is to connect with local people, our staff and with partner organisations in order to jointly think about how best to run services.

‘Transforming Clinical Services’ invites you to join in our big conversation about our local NHS. We want to talk to and hear from patients, the public, carers, Community Health Councils, local authorities, the third sector – in fact everyone who uses, cares about or interacts with our services. We want to listen to the views and experiences of many people and groups to help develop a range of solutions that genuinely meet the needs of our communities.

The four key things we think we must do better:

  • Quality of care
  • Meeting the changing needs of patients
  • Making our resources go further
  • Joining up services

Where do we need to make changes in these services?

  • Out of hospital care
  • Urgent and emergency care
  • Planned care

Key documents: 
Please read our documents and tell us what you think by 15 September 2017. If you need these documents to be translated into another language or format, such as large print or audio, please call 01554 899 056 or email tcs@wales.nhs.uk

To complete the questionnaire online with your views about our ideas and plans for Transforming Clinical Services go to: https://www.surveymonkey.co.uk/r/tgc-tcs

Before completing the questionnaire online check out the questions first, take your time thinking how you want to answer them, and then cut and paste your answers into the online form. Remember to pace yourself!

Live Facebook Q&A – Tuesday 29 August , 6pm – 8pm
Clinicians will be available to talk to at www.facebook.com/hywelddahealthboard about Transforming Clinical Services, our big conversation about our local NHS.

If you can’t join us but would like to ask a question, please send it to communications.hdd@wales.nhs.uk and these will be put to the panel. All questions and answers from the events will be made available on our website http://www.hywelddahb.wales.nhs.uk/

 

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‘The most common disease you’ve never seen’: how one woman turned her illness into a life-changing film

Telegraph article, by Alan Vincent, 11 August 2017: ‘The most common disease you’ve never seen’: how one woman turned her illness into a life-changing film

 

Jennifer Brea was 28 when she was bedridden with a high fever. As she explains, “I got better, but something wasn’t right.” She, like millions of people worldwide, had contracted Chronic Fatigue Syndrome, or myalgic encephalomyelitis, otherwise known as ME.

Suddenly, her life as she knew it, as a newlywed PhD student at Harvard University, was put on hold, as she became progessively more ill, losing even the ability to sit in a wheelchair. Doctors told her that her condition was “all in her head”. There was, and remains, no cure.

Then, four years ago, from her bed, Brea began to make a film about her experiences after keeping a video diary with her iPhone. In doing so, she gave a voice to those who suffer from “the most common disease you’ve never seen”, and encouraged scientists and medical professionals to plough their energies into unravelling a condition that has mystified physicians for years.

Unrest won a prize at Sundance film festival earlier this year, and became one of the first titles to be released with the support of Sundance Institute’s Creative Distribution Fellowship, which aims to empowering entrepreneurial Sundance filmmakers.

Read more about the film and view the trailer

Get in touch if you would like to help WAMES host this film in venues around Wales. Contact Jan

 

See also:

ABC Radio Melbourne, August 7, 2017: Afternoons with Clare Bowditch – Jennifer Brea wants to shine a light on an often misdiagnosed disease

Melbourne International Film Festival review

 

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DWP wrong to deny Benefits appeals

Independent Living blog post, 8 Aug 2017: Benefit appeals timed out unlawfully

The Department for Work and Pensions (DWP) has been acting unlawfully in stopping people taking disability benefit appeals to tribunal, three senior judges have ruled.

Recent judgement in Upper Tribunal
If you disagree with a disability benefit decision, for example Employment and Support Allowance (ESA) or Personal Independence Payment (PIP), you have to follow a timetable which includes asking for an internal review, known as “mandatory reconsideration”, within one month.

The upper tribunal found that it was wrong for the DWP to refuse claimants the right to appeal if they took more than a month to ask for a review of the decision.

Case brought by Child Poverty Action Group for two claimants with mental health problems
The charity, Child Poverty Action Group, challenged the DWP system on behalf of two claimants with serious mental health problems who didn’t ask for mandatory reconsideration within the specified period.

The DWP initially refused to change the decision to reject their benefit application, or to allow a tribunal consider whether that was correct.

This is what the judges found:

 “The reality is that many claimants will be vulnerable for reasons including issues relating to their mental health or learning disabilities. It is obvious that there is a high risk that many of them with good claims on the merits will miss time limits.

“This risk has been exacerbated over recent years by changes in the scope of legal aid and local authority and advice sector provision, and hence the reduction in the numbers of welfare rights officers and others who are readily available to assist claimants with their benefits claims and appeals.”

“We are concerned with the situation where a claimant sends the secretary of state a request for a mandatory reconsideration to which the secretary of state responds by stating that the application is late and does not meet the criteria for extending time. We have concluded that as a matter of statutory interpretation a claimant in such circumstances has a statutory right of appeal to the first-tier tribunal.”

Challenge over ESA also applies to other disability benefits
The Child Poverty Action Group said the upper tribunal decision would protect the appeal rights of the hundreds of thousands of benefit claimants who each year seek to challenge refusal of benefit.

Although this case related to Employment and Support Allowance (ESA), it is relevant to other benefits from the DWP, although not tax credits, which are processed through HM Revenue and Customs.

Judges unimpressed by DWP presentation of judicial review option
The government had argued that claimants had recourse to judicial review if their right to go to tribunal was refused, but the judges observed that out of 1,544,805 mandatory reconsideration decisions made by the government between 2013 and 2017, there had not been a single example of a claimant taking this legal path.

The ruling comes after a Freedom of Information request revealed that the DWP has a target to uphold 80% of original benefit decisions following “mandatory reconsideration” reviews.

About 12% of ESA (work capability assessment) decisions are overturned at mandatory reconsideration, but the figure rises to 59% of those that make it to the tribunal stage.

Carla Clarke, the legal officer for Child Poverty Action Group, said:

“ [it was] not only a vindication for our two clients, but it stands to provide justice for significant numbers of families wrongly denied the financial help to which they are entitled”.

“This decision ensures that even if the DWP thinks there is no good reason for their delay, it cannot prevent such individuals pursuing an appeal before an independent tribunal. To have found otherwise would have been to uphold a system where the decision-maker also acts as arbiter of whether an individual could challenge their decision or not – a clear conflict of interest and an affront to justice”
The Department of Work and Pensions said: “We have received the tribunal’s decision and are considering the judgment.”

See also:

Disability Rights UK blog post, 7 Aug 2017: Upper Tribunal rules DWP wrong to deny appeals over refused benefits

 

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North Wales Health & Social Care plan – your comments invited

North Wales Regional Plan

The North Wales Social Care and Well-being Improvement Collaborative has published a regional plan explaining how organisations in North Wales will work together to deliver health and social care services.

It’s based on a report about the care and support people need in North Wales written by the Regional Partnership, called a population assessment.

Please let them know what you think about the plan through the online survey by 31 October 2017.   Arolwg ar-lein

Read the summary or full versions of the plan  Cymraeg

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The ME/CFS Symposium at Stanford – watch the video

The ME/CFS Symposium held at Stanford on Saturday August 12th 2017 can be viewed online:

The start times of each speaker:

Open Medicine Foundation’s Community Symposium is now available to view online for anyone who was unable to watch it live. We have collated the start times of each speaker (in parentheses) to make for easier viewing for those who want to dip in and out.

Introduction & Welcome: Linda Tannenbaum and Ashley Haugen (00:10)
Opening Remarks: Ron Davis: (00:14)

Morning speakers:
Robert Naviaux: The metabolism of the cell danger response, healing, and ME/CFS (00:18)
Chris Armstrong: ME, metabolism and I (00:38)
Jonas Bergquist: In search of biomarkers revealing pathophysiology in a Swedish ME/CFS patient cohort (00:53)

Maureen Hanson: Probing metabolism in ME/CFS (01:46)
Neil McGregor: Genome-wide analysis & metabolome changes in ME/CFS (02:05)
Alan Light: Gene variants, mitochondria & autoimmunity in ME/CFS (02:21)
Panel discussion: Morning speakers (02:42)

Afternoon speakers:
Baldomero Olivera: A novel source of drugs: the biodiversity of oceans (04:37)
Mario Capecchi: The role of microglia in neuropsychiatri c disorders (04:57)
Mark Davis: Is CFS/ME an autoimmune disease? (05:14)

Alain Moreau: New research strategies for decoding ME/CFS to improve diagnosis and treatment (06:06)
Wenzhong Xiao: Big data analysis of patient studies of ME/CFS (06:25)
Ron Davis: Establishing new mechanistic and diagnostic paradigms for ME/CFS (06:44)
Panel discussion: afternoon speakers (07:21)

Closing remarks: (08:03)

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The Mail online asks: Why are doctors and patients still at war over ME?

Mail online post, by Jerome Burns, 15 August 2017: Why are doctors and patients still at war over M.E.?

How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine

  • Myalgic encephalomyelitis can leave those affected bedridden for years
  • It’s linked with 60 symptoms, most commonly a feeling of constant exhaustion
  • There’s been a long-running debate between doctors and patients about cause

Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’.

The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).

For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed ‘yuppie flu’ because it seemed typically to affect young professionals.

For years there’s been a long-running and bitter debate between doctors and patients about its cause and how to treat it.

The lack of a clear physical cause meant many doctors dismissed it as all in the mind. This infuriated patient groups who insisted it was all too real and the result of an infection or immune system failure.

Even now, when it is generally accepted that ME/CFS is a genuine condition, it remains one of the most angrily contested areas of medicine. But the battle lines are no longer drawn just between patients and doctors: the medical community itself is at loggerheads.

The issue: the best way to treat ME. This has huge significance for the estimated 500,000 people in Britain affected by it. The official NHS treatment for their condition is delivered by psychologists and involves a combination of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) which involves doing a little more each day.

The idea is that doing regular aerobic exercise would help patients a lot, but that they are held back by ‘fear’ of activity: the CBT is meant to overcome this.

Many patients and doctors claimed this combination provided little if any benefit.

This dispute has now broken out into the public arena in an extraordinary fashion. Two weeks ago the Journal of Health Psychology published what was effectively an attack on the official NHS treatment.

COULD IT BE CAUSED BY INFLAMMATION?
At the heart of the issue is what causes ME. Patient activists and some doctors consider it a physical disorder.

This ‘biological’ theory appeared to be reinforced by recent research from Stanford University in the U.S. that identified a new set of ‘messenger’ molecules in the blood that are part of the immune system and behave differently in ME/CFS patients.

New, sophisticated equipment allowed a team to run a very detailed analysis of the blood of 192 patients, comparing it with nearly 400 healthy people. They found that immune system messenger molecules (cytokines) that trigger inflammation and produce flu-like symptoms were higher in patients with the most severe symptoms.

An independent expert, Gordon Broderick, a systems biologist at Rochester General Hospital in New York, commented that it was a ‘tremendous step forward’.

Read more

More articles inspired by the publication of an issue of the Journal of Health Psychology’s issue on ME/CFS:

Harsh criticism of big ME-study (Norwegian article with English translation)

The so-called PACE-the study is school example of poor research, writes journal editor. Thus, the fight rolls on ME/chronic fatigue syndrome.

The researchers behind the PACE-the study believes the study shows that training and cognitive therapy can improve or cure ME/CFS. Not all agree in the conclusion.

Looking at the Evidence (blog post by mrspoonseeker)

Chronic fatigue syndrome reality conflicts with medical study (in The Mining Journal)

American physicians have been strongly influenced by the PACE trial. This may be the result of our devotion to the concepts of “Evidence Based Medicine.” One simply has to publish a study, whether well-constructed or not, biased though it may be, perhaps even deeply flawed, and the results can be adopted and repeated as gospel.

The research community, on the other hand, has rejected the psychiatric model epitomized by PACE. They instead are looking for a physiologic explanation, whereby there is some actual, physical phenomenon at work.

 

 

 

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Disability Discrimination Quiz

Do you have an impairment or long-term health condition?

You might be experiencing discrimination at work without realising it.

Find out if you might be experiencing disability discrimination at work and what to do about it with this quiz.

It should take you between 10-15 minutes, depending on how much extra information you want along the way. At the end of the quiz you will be given some links for information and help with any issues that the quiz might have raised

The Disability Discrimination Quiz was developed at Cardiff University and is backed by Disability Wales.

Take the quiz

The screen-reader accessible version

Research into discrimination at work

 

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