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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ME/CFS: A new explanation – and cure from Dr Willy Eriksen?

Tracy Duvall blog post, 10 June 2017: ME/CFS: A new explanation – and cure?

In a recent paper, Dr. Willy Eriksen proposes a complete explanation for the development, diversity, and persistence of myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS). He also suggests a possible cure. Seeing that this potentially groundbreaking research was attracting little attention, I contacted Dr. Eriksen and interviewed him via email. This post contains a summary of his hypothesis, which I’ve tried to present in everyday language.

Other posts contain:

1) the interview, which contains considerable new information about his hypothesis, and 2) my understanding of how Eriksen’s model fits with other research—and with my experience.

Eriksen holds an MD and PhD and is a research professor at the Norwegian Institute of Public Health.

Ultra-short summary
…Clumps of immune cells form in one or more key spots along the nervous system. Epstein-Barr virus (EBV) infects the clump(s), and this causes inflammation in the area. This inflammation provokes a reaction in the nervous system, which directly and indirectly accounts for the symptoms of ME/CFS. Extracting a patient’s immune cells, priming them to fight EBV, and returning them to his or her body might cure the disease.

Read the full blog post for more information

 

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Guided graded exercise self-help plus specialist medical care (GETSET)

A new research paper on a guided graded exercise programme has received much media coverage, some support and a lot of questions and criticisms. Links to a number of these follow.

A summary of the paper’s conclusions can be found in the Telegraph:

Exercise can help chronic fatigue syndrome, study shows, by Sarah Knapton,
22 June 2017

Increasing exercise each day can help patients with Chronic Fatigue System to feel less tired and feel better, a new study suggests.

Scientists at Queen Mary University of London placed 200 people on a 12 week programme in which they were either encouraged by a physiotherapist to walk a little more each or given a programme of medical care including medication for depression, pain and insomnia.

After four months the mean fatigue score of the exercise group was four points lower than in the control group, on a scale of 100, which researchers said was a moderate but significant impact.  Physical function was also six points higher.

Lead author Dr Lucy Clark said: “We found that a self-help approach to a graded exercise programme, guided by a therapist, was safe and also helped to reduce fatigue for some people with chronic fatigue syndrome, suggesting that it might be useful as an initial treatment for patients to help manage symptoms of chronic fatigue syndrome.

“We are now looking at whether the effects were maintained beyond 12 weeks.

“The aim is to progress carefully to improve rather than pushing people too hard and towards a setback.”
CFS affects about seven in 1000 people and is characterised by chronic, disabling fatigue in the absence of an alternative diagnosis.

The self-help exercise programmed involved slowly building up physical activity levels after establishing a daily routine, with the support of a physiotherapist over the phone or Skype.   The research was published in The Lancet.

Action for ME’s Chief Executive, Sonya Chowdhury, challenges the findings: Action for M.E. comment on GETSET study in Lancet, 23 June 2017

Some people with M.E. report that using a guided self-help version of graded exercise therapy (GET) helps improve symptoms, says a study published yesterday in the Lancet.

Two hundred people with M.E. (diagnosed using criteria set out in the NICE guideline) took part in the 12-week study. Half were randomly assigned to receive specialist medical care alone, such as prescriptions or advice regarding medication. The other half received guided graded exercise self-help (GES) in addition to specialist medical care; this involved slowly building up physical activity levels, after establishing a daily routine, with the support of a specialist physiotherapist by phone or Skype.

Results indicate that:

42% of participants in the GES group adhered to the programme “well” or “very well”
the mean fatigue score in the GES group was four points lower than in the group receiving specialist medical care alone; the mean physical function score was six points higher in the GES group
when rating their overall health, 18% people in the GES group reported feeling “much better” or “very much better,” compared to 5% in the specialist medical care group
10 of 97 participants in the GES group dropped out of the study, compared to two in the specialist medical care group.

Action for M.E. comment:

Sonya Chowdhury, Chief Executive, Action for M.E., says,

“People living with M.E. urgently need access to appropriate care to support them in managing complex and challenging symptoms. While this study shows moderate improvements for those taking part, it’s essential to note that only a minority of patients – one in five – reported feeling much or very much better.

“Limitations to this study are made clear in the paper – in addition to these, we note that the most commonly chosen activity by those taking part was walking. This indicates that those bed and/or housebound with the more severe form of M.E., who are frequently too ill to undertake basic self-care, were unlikely to have been included: even carefully managed activity is rarely, if at all, possible for this very vulnerable patient group.

“It is extremely frustrating to see the study being reported by the Telegraph with the headline Exercise can help chronic fatigue syndrome. Exercise as it’s generally understood – going for a run, playing football – is NOT the same as graded exercise therapy, which is a specialised symptom-managed approach that should be delivered by an experienced professional. To conflate the terms plays down complexities involved in managing M.E. and perpetuates misunderstanding about this devastating condition.

“On a related note, the authors state that ‘relative efficacy of a behavioural intervention does not imply that CFS is caused by psychological factors.’ But it cannot be denied that the continuing emphasis on behavioural treatments for M.E., particularly when we know so little about the biology of the condition, contributes to continuing misunderstanding and stigma that prevents children, families and adults affected by M.E. accessing the care and support they need.

“This situation will only change if we see significant mainstream investment into collaborative research that helps us stratify the illness, identify biomarkers, and ultimately lead to targeted treatments for everyone with M.E., not just a minority.”

The original paper:

Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for chronic fatigue syndrome (GETSET): a pragmatic randomised controlled trial, by Dr Lucy V Clark, Francesca Pesola, Janice M Thomas, Mario Vergara-Williamson, Michelle Beynon, Prof Peter D White in the Lancet [22 June 2017]

GES is a safe intervention that might reduce fatigue and, to a lesser extent, physical disability for patients with chronic fatigue syndrome. These findings need confirmation and extension to other health-care settings.

A comment: This paper is accompanied by a comment by a practitioner of GET and CBT for people with CFS:

Guided graded exercise self-help as a treatment of fatigue in chronic fatigue syndrome, by Daniel J Clauw in the Lancet [22 June 2017]

A supporting article: another article in the BMJ also supports the approach, though most of the article is behind a paywall:

Self help approach to graded exercise may help chronic fatigue
syndrome, by Susan Mayor in British Medical Journal Vol. 357, p j3057
June 23, 2017

Responses criticising the approach have also been published:

Mitochondrial dysfunction needs treating Re: Self help approach to graded exercise may help chronic fatigue syndrome, Ellen C G Grant, 24 June 2017
[Physician and medical gynaecologist  Retired]

Why does the very important discovery that this complicated medical condition is due to impaired mitochondrial function – for a number of specific and treatable reasons – continue to be ignored?

Re: Self help approach to graded exercise may help chronic fatigue syndrome, by Ian Stirling [Medically retired], 23 June 2017

I am a patient with CFS. I am often bedbound, following trivial exercise (washing up).
The reasons I am bedbound is not due to cardiovascular or muscular insufficiency or avoiding exercise. I do not have Delayed Onset Muscle Soreness in the days afterwards. I have severe cognitive effects (n-back/… performance plummets). I have significantly reduced one-time maximal grip strength. Normal exercise response does not cause pain in the whole body following exercise of one muscle group, or the host of other symptoms.

Re: Self help approach to graded exercise may help chronic fatigue syndrome, by Anton Mayer, 23 June 2017

Susan Mayor states that the GETSET trial shows that graded exercise therapy can improve fatigue and physical functioning. Due to weaknesses in the trial design, it is not actually possible to distinguish biased self-reporting (“placebo effect”) from genuine improvement. Indeed, we know from previous studies that GET and CBT don’t lead to improvement on objective measures of health and functioning in CFS: their effect is most consistent with a small transient placebo effect. That this study was funded and is being taken seriously is very worrying.

More info about the trial:

Wolfson Institute of Preventive Medicine at Queen Mary University of London, the home of the trial, has published information about the trial: GETSET Trial FAQs

The Science Media Centre has published mixed responses from a number of their associates, 22 June 2017:

expert reaction to study on guided self-help graded exercise therapy as a treatment for chronic fatigue syndrome (CFS) 

Science daily blog post, 23 June 2017: Guided self-help approach to graded exercise program is safe, may reduce fatigue for patients with chronic fatigue syndrome

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Monmouthshire’s safe places scheme for wheelchair users

BBC news article, 14 June 2017: Monmouthshire ‘Safe Places’ scheme to help disabled

A new scheme providing better support for disabled and vulnerable people is being launched in Monmouthshire.

More than 90 businesses across the county have signed up to the “Safe Places” project.

They will display stickers in their windows, showing they can help wheelchair users and people with Autism or dementia.

Disability charity Monmouthshire People First said it aimed to give more people the confidence to go out.

Businesses taking part in the project – believed to be the first scheme of its type in Wales – have been pre-vetted, with funding from Gwent’s police and crime commissioner and The Big Lottery fund.

Mary Allan, from the charity, said the scheme was in response to disabled people asking for a list of places they could make a phone call, get directions or other help.

She said public transport often let wheelchair users down, while others lost confidence in going out after becoming lost or confused.

“The overwhelming response we’ve had from the shops and businesses has been fantastic,” she said.

“Most of them have said they’d help anyway – we’ve had some lovely stories about what people have done.

“It’s really just formalising it – they’ll have a key-fob with the ‘Safe Places’ logo on it, they’ll see the sign in the window and feel confident to go in.”

Terry Christopher, who is registered blind, said the scheme could make a real difference to people with disabilities.

“I’ve become dizzy and disorientated myself on occasion, despite knowing Monmouth inside out,” he said.

“If it means that someone can go for a coffee, go for a pint, a meal somewhere or do a bit of shopping, and they’ve got the confidence to do it, that is life-changing.”

Gwent Police said it hopes the prospect of quick and convenient support in the nearest shop, cafe or pub will give disabled people the confidence to report more hate crime committed against them.

The project plans to speak with local taxi companies to work on a similar scheme for transport.

It intends to roll the initiative out to neighbouring Torfaen later this year.

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Further commentary on the PACE trial: biased methods & unreliable outcomes

Article abstract:

Further commentary on the PACE trial: Biased methods and unreliable outcomes, by Keith J Geraghty in Journal of Health Psychology [First Published June 14, 2017, Editorial]

Geraghty in the year 2016, outlines a range of controversies surrounding publication of results from the PACE trial and discusses a freedom of information case brought by a patient refused access to data from the trial.

The PACE authors offer a response, writing ‘Dr Geraghty’s views are based on misunderstandings and misrepresentations of the PACE trial’. This article draws on expert commentaries to further detail the critical methodological failures and biases identified in the PACE trial, which undermine the reliability and credibility of the major findings to emerge from this trial.

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What is known about severe & very severe CFS? A scoping review

Review abstract:

What is known about severe and very severe chronic fatigue syndrome? A scoping review, by Victoria Strassheim, Rebecca Lambson, Katie L. Hackett, Julia L. Newton in Fatigue: Biomedicine, Health & Behavior [Preprint June 19, 2017]

Background:
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) affects 0.4% of the population. It is characterised by disabling fatigue and a combination of self-reported symptoms which include impairments in concentration, short-term memory, sleep disturbances, post-exertional malaise and musculoskeletal pain.

There are four categories of severity in the CFS/ME population: mild; moderate; severe; and very severe which are expanded on elsewhere and adopted by the National Institute for Health and Care Excellence [NICE. Chronic fatigue syndrome/myalgic
encephelomyelitis diagnosis and management in adults and children; 2007].

Objective:
Identify research relating to those severely and very severely affected by CFS/ME.

Methods:
We searched electronic databases for relevant studies using pre-defined search terms: ‘chronic fatigue syndrome’ and ‘severe’ which covers ‘severe’ and ‘severely’. Included were English language papers published in full that discretely identified severely and very severely affected CFS/ME populations from the broader CFS/ME population.

Results:
Over 2000 papers were reviewed and 21 papers met the selection criteria.  The capture produced both adult and paediatric populations with a variety of methodologies. Wide differences in illness characterisation, definition and measurement were found. Case studies reported that in extreme presentations very severe CFS/ME individuals may be confined to bed, requiring reduced light and noise exposure.

Conclusion:
This review highlights the limited research focusing on the severely affected CFS/ME population. The heterogeneity of the condition contributes to the lack of consensus concerning definitive diagnostic criteria and functional measures to assess disability. Focused research to understand the disease characteristics of the most severely ill will
help to advance our understanding of possible phenotypes associated with distinct severity categories.

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Survey: Talking about your impairment or condition at work

Disability Rights UK blog post, 8 June 2017: Talking about your impairment or condition at work

Scope are carrying out research into experiences at work.

To do this, they are interviewing people about sharing information about their impairment or condition with their employer and colleagues.

Scope would be interested to hear from people who haven’t discussed their impairment or condition with their employer as well as people who have.

They are recruiting people who:

  • Are aged 16-64.
  • Are currently in work
  • Live in England or Wales
  • Interviews will be held in July and August 2017 and at a location that best suits each interviewee.

Interviewees will receive a £10 gift voucher for their time.

If you or anyone you know would be interested in taking part or want more information, please contact Scope’s Researcher Melanie Wilkes on 0207 619 7278 or at melanie.wilkes@scope.org.uk

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Defense of the PACE trial is based on argumentation fallacies

Article abstract:
Defense of the PACE trial is based on argumentation fallacies, by Steven Lubet in Journal of Health Psychology [Published June 14, 2017]

In defense of the PACE trial, Petrie and Weinman employ a series of misleading or fallacious argumentation techniques, including circularity, blaming the victim, bait and switch, non-sequitur, setting up a straw person, guilt by association, red herring, and the parade of horribles. These are described and explained.

 

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Understanding severely affected CFS: the gravity of the situation

Review abstract:

Understanding severely affected chronic fatigue syndrome (CFS): The gravity of the situation, by Victoria Strassheim, Robert Ballantine, Katie L. Hackett, James
Frith, Julia L. Newton in Physical Therapy Reviews [Preprint May 25, 2017]

Objective:
To describe how the effects of gravity may adversely affect the neuro-cardiovascular physiology of individuals with severe Chronic Fatigue Syndrome (CFS).

Design:
A narrative review of the literature relating to microgravity, orthostatic intolerance and severe CFS. Emphasis is placed on the clinical significance and implications for the management of patients with severe CFS, with suggestions for future rehabilitation and physical interventions.

Results:
Physiological functions in humans have evolved to counter the effects of gravity, in particular the neuro-cardiovascular system. Reducing exposure to gravity will result in deconditioning of these systems. Many of the symptoms experienced by astronauts returning to Earth are shared by those with severe CFS.

Prolonged periods in the supine position create an environment similar to microgravity – the mechanism through which we propose orthostatic intolerance develops in CFS. However, there are also some physiological changes present in CFS which may exacerbate these changes. Studies have shown that some CFS individuals have  hypovolaemia unrelated to deconditioning. This pre-existing hypovolaemia may make the neuro-cardiovascular system more vulnerable to the effects of bed rest in those individuals with CFS.

Conclusion:
Severely affected CFS individuals may be more susceptible to a specific type of deconditioning, related to reduced exposure to gravity, due to pre-existing vulnerabilities in their cardiovascular and autonomic nervous systems. Rehabilitation which targets the neuro-cardiovascular system and its response to upright posture may improve function and symptoms of severely affected CFS individuals.

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ACTivate your life – wellbeing sessions in Gwent June – Aug 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.

Abertillery

  • Tuesday 20 Jun- 11 Jul  10 – 12 am
  • Ty Ebbw Fach, Chapel Rd Six Bells NP13 2ND

Caerphilly

  • Monday 7 August – 4 Septemebr   2-4.30 pm
  • Caerphilly Library, The Twyn, Caerphilly CF83 1JL

Chepstow

  • Monday 3 -24 July   2-4pm
  • Chepstow Leisure Centre, Welsh St NP16 5LR

Monmouth

  • Monday 3 -24 July 6-8pm
  • Monmouth Shire Hall, 3 Agincourt Square NP25 3EA

Cwmbran

  • Tuesday 4 – 25 July    5.30-7.30 pm
  • Victory Church, Greenforge Way, Springvale Industrial Estate, NP44 3UZ

Ebbw Vale

  •  Tuesday 11 July – 1 Aug    10-12am
  • Ebbw Vale Institute, Church Street, NP23 6BE

Newport

  • Wednesday 2-23 Aug  10-12pm
  • King’s Church, 71 Lower Dock Street, Newport NP20 1EH

Newport

  • Wednesday 9-30 August   6-8pm
  • Maindee Library, 79 Chepstow Road, 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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Big Benefits Survey 2017

Big Benefits Survey 2017:

The Disability Benefits Consortium (of which WAMES is a member) wants to find out more about disabled people’s experiences of applying for and getting benefits. This will help us campaign to make sure the system is fair for disabled people in future.

The survey will take between 10 and 30 minutes to complete. In order for us to understand your experience of the whole process of applying for disability benefits, this survey is best completed once you have gone through your application(s) and know the outcome. However, you are welcome to complete it if you have yet to go through your application process.

Take the survey

This survey will ask you about Employment and Support Allowance (ESA), Personal Independence Payment (PIP) Attendance Allowance (AA) and Universal Credit (UC). However, you will only be asked about the benefits you’ve applied for.

Your responses will remain anonymous, unless you offer to be contacted further to support our campaigning work. Your anonymous responses will not be shared and will only be used by the Disability Benefits Consortium and its members to campaign for improvements to the benefits system.

If you have questions about the survey, please contact DBC Co-Chair Phil Reynolds at preynolds@parkinsons.org.uk

This survey will run on an ongoing basis throughout 2017

The Disability Benefits Consortium (DBC) is a national coalition of over 80 different charities and other organisations committed to working towards a fair benefits system for disabled people, people with long-term conditions and their carers.

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