#TimeForUnrestWales – the Cabinet Secretary for Health’s plans for ME & CFS

#TimeForUnrestWales

 the Cabinet Secretary for Health’s plans for ME & CFS

In early May WAMES wrote to the Cabinet Secretary for Health, Vaughan Gething, expressing concern for the slow progress in implementing the Task & Finish Group Report’s Recommendations and asking him:

to provide, as a matter of urgency, support and finance for a national training and awareness programme.

See: #TimeForUnrestWales – the struggle to get an accurate diagnosis

The Cabinet Secretary has replied saying:

I welcome WAMES’ continued support for this agenda and the important challenge that your organisation brings to both Welsh government and health boards across Wales. I understand your frustration with the apparent lack of investment by health boards in services for those suffering from CFS/ME… I do recognise that more needs to be done for patients suffering with CFS/ME and other persistent pain conditions.

Vaughan Gething’s proposals:

  • National training programme – he asks WAMES to work with the All Wales Implementation Group (AWIG) to submit a proposal to Health Education and Improvement Wales for a national training programme, for consideration when it is fully established later this year.
  • E-training package – he has asked the AWIG to consider developing a training package to assist with more accurate diagnosis that could be loaded onto the e-learning platform for GPs, funded by the Welsh government.
  • Health Board work plans – he has asked his officials to continue to work with the all Wales implementation group and health boards to  push for CFS/ME and FM to be included by all health boards in next year’s IMTPs, as so far only some HBs have included them. [IMTP stands for: Integrated Medium Term Plan.  This Plan describes the progress a Health Board has already made and what they are planning to achieve over the next three years. If it is not in the IMTP, it is not considered a priority]
  • CFS/ME services review – he has asked Christine Roach, a secondee from Public Health Wales to review CFS/ME and FM provision in Wales and make recommendations on actions that can be taken by both health boards and the Welsh government to improve services for people with these conditions. This report will be concluded this calendar year and he has asked Christine to contact WAMES directly.

ME & Neurological Services – the Cabinet Secretary says:

With regards to the inclusion of CFS/ME within the NCIG (Neurological Conditions Implementation Group) the matter has previously been discussed multiple times in the last few years and whilst they recognise that the WHO classifies CFS/ME as a neurological disorder, they have struggled to reach a consensus on whether the condition should be included under the remit of the group.

In June 2017 the group agreed that the conditions would not be best served by being included within the remit of the group as the vast majority of patients were not receiving regular care from neuroscience services and were generally supported by other specialities.

This was further clarified with the Wales Neurological Alliance at the last meeting in March 2018.

WAMES does not find it satisfactory that Neurological Services should be permitted to exclude people with ME and CFS, and we do not agree that patients are ‘generally supported by other specialities’. We are however keen to work with anyone who is willing to develop services and our priority will be to ensure those services are appropriate and acceptable to people with ME and CFS.

WAMES welcomes the Cabinet Secretary’s support for ME & CFS and his desire to improve health services. WAMES will be working with the All Wales Implementation Group and Chris Roach throughout 2018 to implement his proposals and will report back to him.

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New CFS test is 84% accurate

Medical News Today blog post, by Ana Sandoiu, 11 July 2018: New chronic fatigue syndrome test is 84 percent accurate

Myalgic encephalomyelitis/chronic fatigue syndrome does not currently have a diagnostic test. But this may soon change, as researchers have developed a test that can predict it with an unprecedented level of accuracy.

Currently, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is estimated to affect more than 1 million people in the United States, and up to 24 million people worldwide. This often debilitating condition is characterized by feelings of extreme exhaustion, muscle and joint pain, and insomnia, as well as difficulty concentrating or remembering things.

The causes of ME/CFS remain unknown, and in the absence of a proper diagnostic test for it, healthcare professionals have to exclude other disorders and examine a patient’s history before they can tell whether a person has ME/CFS or not.

However, this may soon change, as a team of researchers led by those at the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health in New York City, NY, have engineered a highly accurate test for the disorder. The researchers detail their findings in a new study recently published in the journal Scientific
Reports. Dr. Dorottya Nagy-Szakal, a CII researcher, is the first author of the paper.

Engineering an ME/CFS diagnostic test

Dr. Nagy-Szakal and team examined the blood samples of 50 people with ME/CFS and compared them with those of 50 age-matched healthy controls. Using a special technique that identifies molecules by measuring their mass, the scientists found 562 metabolites that the ME/CFS patients had in common.

Metabolites are byproducts of the body’s metabolism – that is, its ability to process sugars, fats, and proteins. In the recent research, the scientists excluded metabolites resulting from antidepressants or other drugs.

Laboratory tests carried out by Dr. Nagy-Szakal and team revealed that certain metabolites were altered in a way that suggested that the patients’ mitochondria – which are the tiny organelles inside the cell responsible for turning nutrients into energy – were not functioning properly. The results are coherent with previous studies led by other researchers, as well as with research carried out by Dr. Nagy-Szakal and colleagues last year.

In 2017, the team found a distinct pattern of metabolites in people who had both irritable bowel syndrome (IBS) and ME/CFS. Other studies have reported that 35-90 percent of those with ME/CFS also have IBS. And in the new study, half of the ME/CFS patients also had IBS.

Test yields 84 percent accuracy

Dr. Nagy-Szakal and her colleagues combined biomarkers from both their  2017 study and their new study. The result was a predictive model with a 0.836 score, which translates into an accuracy rate of 84 percent.

‘This is a strong predictive model that suggests we’re getting close to the point where we’ll have lab tests that will allow us to say with a high level of certainty who has this disorder,’ explains Dr. Nagy-Szakal.

Corresponding author Dr. W. Ian Lipkin, director of CII and the National Institutes of Health (NIH) Center for Solutions for ME/CFS, also weighs in on the findings, saying,

‘We’re closing in on understanding how this disease works. We’re getting close to the point where we can develop animal models that will allow us to test various hypotheses, as well as potential therapies. For instance, some patients might benefit from probiotics to retune their gastrointestinal microflora or drugs that activate certain neurotransmitter systems.’

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Insights into ME/CFS phenotypes through comprehensive metabolomics

Research abstract:

Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics, by Dorottya Nagy-Szakal, Dinesh K. Barupal, Bohyun Lee,
Xiaoyu Che, Brent L. Williams, Ellie J. R. Kahn, Joy E. Ukaigwe, Lucinda Bateman, Nancy G. Klimas, Anthony L. Komaroff, Susan Levine, Jose G. Montoya, Daniel L. Peterson, Bruce Levin, Mady Hornig, Oliver Fiehn, W. Ian Lipkin in Scientific Reports  8: 10056 (2018)

The pathogenesis of ME/CFS, a disease characterized by fatigue, cognitive dysfunction, sleep disturbances, orthostatic intolerance, fever, irritable bowel syndrome (IBS), and lymphadenopathy, is poorly understood.

We report biomarker discovery and topological analysis of plasma metabolomic, fecal bacterial metagenomic, and clinical data from 50 ME/CFS patients and 50 healthy controls. We confirm reports of altered plasma levels of choline, carnitine and complex lipid metabolites and demonstrate that patients with ME/CFS and IBS have increased plasma levels of ceramide.

Integration of fecal metagenomic and plasma metabolomic data resulted in a stronger predictive model of ME/CFS (cross-validated AUC = 0.836) than either metagenomic (cross-validated AUC = 0.745) or metabolomic (cross-validated AUC = 0.820) analysis alone.

Our findings may provide insights into the pathogenesis of ME/CFS and its subtypes and suggest pathways for the development of diagnostic and therapeutic strategies.

News medical, 10 July: Study identifies constellation of metabolites linked to ME/CFS

Science daily: Insights from metabolites get us closer to a test for chronic fatigue syndrome 

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‘A Girl Behind Dark Glasses’ book by Jessica Taylor-Bearman

‘A Girl Behind Dark Glasses’ book by Jessica Taylor-Bearman

Book Description:

From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage school girl. This true story follows her path as she ends up living in hospital for years with tubes keeping her alive.

This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice activated technology diary called `Bug’ that enables her to fulfil her dream of one day becoming an author.

It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.

Jo Moss’s review on her blog ‘The Mighty’: My Review of ‘A Girl Behind Dark Glasses’ as a Fellow ME Patient

I have just finished reading “A Girl Behind Dark Glasses: and I was so impressed I decided to write a review. “A Girl Behind Dark Glasses” is written by Jessica Taylor-Bearman and it’s an account of her life and struggles with a severe form of myalgic encephalomyelitis (ME).

“I was an inventor, a researcher, a model, and I travelled the world through my imagination. At that time, it was my only saving grace. I existed in a place I called Limbo Land, hovering between the conscious and the unconscious. I could hear my family talking to me, see images of them, yet I couldn’t reply or make sense of what they talked about.” – Jessica Taylor-Bearman

Order online from Jessica or from Amazon

Jessica’s website: Jaytay

Jessica’s book is available from Amazon   £4.99 for Kindle, £9.99 paper

 

Female First article, by Jessica Taylor-Bearman, 3 July 2018: 10 Things About Living With M.E. That You Want People To Know

Jessica Taylor-Bearman writes a piece for us upon the release of her new book A Girl Behind Dark Glasses.

I have been suffering with a chronic neuro immune disease for over twelve years called M.E. It stands for Myalgic Encephalomyelitis and remains very misunderstood in all aspects. You may have heard of it called by a multitude of different names including Chronic Fatigue Syndrome and sadly still, Yuppie Flu.

To find out more about the key things Jessica wants people to know read the full article

  1. There are so many things we do not know about M.E. but most importantly one thing we do know is that contrary to popular belief, M.E. is not ‘all in the mind’.
  2. It is not a rare condition.
  3. I live in constant pain
  4. It’s really hard being this sick for so many years without receiving any medication that will fix the problem.
  5. I lost all my independence when I was 15 years old.
  6. I spend most of my time living in a world of one room
  7. M.E. puts a huge strain on any family setup because everyone’s life has to revolve around the disease.
  8. I divide my day up into family time, rest time, and helping run my charity (Share a Star) from my bed.
  9. When you are chronically unwell, you really start to have to appreciate the little things in life.
  10. I’m bedridden activist
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Project offers new bridge between chronic illness community & disability movement

Disability News service blog post by John Pring,2018: Project offers new bridge between chronic illness community and disability movement

A disabled researcher has suggested a way to bring the hundreds of thousands of people with chronic illness under the umbrella of the disabled people’s movement.

Catherine Hale (pictured), who has lived with a diagnosis of ME for nearly 30 years, hopes that her new discussion paper will build bridges between the disabled people’s movement and the chronic illness community.

She is keen for her paper to “stimulate reaction and debate” from members of the movement, disability studies academics and policy-makers.

Hale suggests in the paper that people with chronic illness can be viewed as having a “stamina impairment” which restricts their activities – despite any treatment regimes they undergo – and that such people could make up the second-largest impairment group of disabled people in the UK.

She says that people with such impairments can and do experience socially-constructed disabling barriers, such as their marginalisation by society, the lack of medical understanding of their conditions, and the discrimination they face from those who doubt their ill-health.

She hopes that this will provide a way to explain their oppression through the social model of disability and bring them under the umbrella of the disabled people’s movement.

The publication of the discussion paper by The Centre for Welfare Reform is the latest stage of the three-year Chronic Illness Inclusion Project, which is receiving £40,000 lottery funding through the pioneering user-led DRILL (Disability Research into Independent Living and Learning) programme.

The project’s aim is to explore the experience of chronic illness within the social model of disability, co-produce an agenda for social, political and cultural change, and “forge a collective voice” for the online chronic illness community under the umbrella of the wider disability movement.

Hale says she believes that the only way that people with chronic illness can have their voices heard is for them to adopt a social model approach, which she believes will “strengthen and enrich” the disabled people’s movement.

She argues in the discussion paper that “there are restrictions to our lives, activities and wellbeing that are entirely created by social and political responses to chronic illness”, an approach that would allow a social model explanation for the barriers faced by people with conditions such as ME, fibromyalgia, Crohn’s disease and Ehlers-Danlos syndrome (EDS).

Read and listen to the full article

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Intracranial compliance is associated with symptoms of orthostatic intolerance in CFS

Research abstract:

Intracranial compliance is associated with symptoms of orthostatic intolerance in chronic fatigue syndrome, by Andreas Finkelmeyer, Jiabao He, Laura Maclachlan, Andrew M Blamire, Julia L Newton in PLoS One. 2018 Jul 3;13(7):e0200068

Symptoms of orthostatic intolerance (OI) are common in Chronic Fatigue Syndrome (CFS) and similar disorders. These symptoms may relate to individual differences in intracranial compliance and cerebral blood perfusion. The present study used phase-contrast, quantitative flow magnetic resonance imaging (MRI) to determine intracranial compliance based on arterial inflow, venous outflow and cerebrospinal fluid flow along the spinal canal into and out of the cranial cavity.

Flow-sensitive Alternating Inversion Recovery (FAIR) Arterial Spin Labelling was used to measure cerebral blood perfusion at rest. Forty patients with CFS and 10 age and gender matched controls were scanned.

Severity of symptoms of OI was determined from self-report using the Autonomic Symptom Profile. CFS patients reported significantly higher levels of OI (p < .001). Within the patient group, higher severity of OI symptoms were associated with lower intracranial compliance (r = -.346, p = .033) and higher resting perfusion (r = .337, p = .038). In both groups intracranial compliance was negatively correlated with cerebral perfusion.

There were no significant differences between the groups in intracranial compliance or perfusion. In patients with CFS, low intracranial compliance and high resting cerebral perfusion appear to be associated with an increased severity of symptoms of OI. This may signify alterations in the ability of the cerebral vasculature to cope with changes to systemic blood pressure due to orthostatic stress, but this may not be specific to CFS.

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Stress management course starts Bridgend 11 July 2018

The Stress Control course

The Stress Control course helps people to understand how stress and associated problems such as low mood, anxiety, panic and sleep affect them. The aim of the course is to help turn you into your own therapist; you are the expert on you, but the course is here to guide you in improving your understanding and management of stress.

The course is based on Cognitive Behavioural Therapy which looks at the connection between thoughts, feelings, bodily sensations and behaviours to help people discover what may be maintaining their stress and learn ways to manage it more effectively.

The course is run weekly over six sessions for approximately 90 minutes with a break halfway through the session.

The six sessions:

  1. What is stress? The first steps
  2. Controlling your body
  3. Controlling your thoughts
  4. Controlling your actions
  5. Controlling panic feelings and medication
  6. Controlling your sleep, wellbeing and controlling your future

Bridgend

  • Bridgend Life Centre, Angel Street, Bridgend CF31 4AH
  • Room: Conference room
  • Wednesday 11 July – 15 August    5.30 – 7 pm

You can turn up and register on the day of the course and bring a friend. Free course materials and relaxation CD will be available.

Stress Control is run as part of the Abertawe Bro Morgannwg Health Board Living Life Well Programme.

For more information contact the team: 07967 612246  living.lifewell@wales.nhs.uk

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Meta-analysis investigating post-exertional malaise between patients & controls

Review abstract:

Meta-analysis investigating post-exertional malaise between patients and controls by Abigail Brown and Leonard Jason in J Health Psychol. 2018 Jul [First published 5 July 2018]

Post-exertional malaise is either required or included in many previously proposed case definitions of myalgic encephalomyelitis/chronic fatigue syndrome. A meta-analysis of odds ratios (ORs; association between patient status and post-exertional malaise status) and a number of potential moderators (i.e. study-level characteristics) of effect size were conducted.

Post-exertional malaise was found to be 10.4 times more likely to be associated with a myalgic encephalomyelitis/chronic fatigue syndrome diagnosis than with control status. Significant moderators of effect size included patient recruitment strategy and control selection.

These findings suggest that post-exertional malaise should be considered a cardinal symptom of myalgic encephalomyelitis/chronic fatigue syndrome.

[The article lists possible definitions of PEM, including:

  • post-exertional neuroimmune exhaustion (Carruthers et al., 2011);
  • “an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability … and a tendency for other associated symptoms to worsen” (Carruthers et al., 2003);
  • “prolonged exacerbation of a patient’s baseline symptoms after physical/cognitive/orthostatic stress; [it] may be delayed relative to the trigger.” (IOM, 2015)]

Read full article

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Living with persistent pain in Wales: consultation Jun-Sep 2018

Welsh government open consultation, 5 June 2018: Living with persistent pain in Wales guidance

Your views are requested on draft guidance to replace the Service Development and Commissioning Directive for Chronic Non-Malignant Pain 2008.

Consultation description

We are consulting on the proposed direction of the draft guidance which includes:

  • living with pain
  • supported self management
  • health service provision

Consultation documents

Consultation document

Draft guidance

How to respond

Submit your comments by 14 September 2018, in any of the following ways:

 

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MESiG AGM & support group meeting Sat 7 Jul 2108, Cardiff

MESiG AGM – Saturday 7 July 2018

MESiG Support Group invites you to join them from 2 – 5 pm on Saturday 7th June 2018 at Bethel Church Community Centre, Llangranog Road, Llanishen,  Cardiff, CF14 5BJ

  • 2-3 pm   AGM
  • 3-3.50 pm   Guest speaker: Jill Shelton, Community Health Council
  • 3.50 – 4 pm Q&A
  • 4-5 pm Tea & cakes, raffle

All are welcome, bring friends, family, carers, anyone with an interest.

MESiG – supporting those who suffer from Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia and Lyme Disease.

More info: 02920 196277

mesigwales@gmail.com      website

Next meeting: 6 Aug – Tea in the park

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Hywel Dda ‘Our big NHS change’ consultation event, 5 July 2018 Milford Haven

Hywel Dda University Health Board blog post: Hywel Dda – Our Big NHS Change

Our doctors, nurses and therapists want to talk to you about “Our big NHS Change” proposals for Carmarthenshire, Ceredigion and Pembrokeshire and listen to your views.

These are informal Drop In Events. Please come along at any time between 2pm and 7pm to find out more.

This is your opportunity to tell us what you think or give us new ideas.

Thursday 5th July 2018 – Pill Social Centre, Milford Haven SA73 2QT

For more information go to website   or call 01554 899 056

 

We have a once-in-a-lifetime chance to fundamentally change the way that we provide local healthcare services for the better – and we want to hear what you have to say about it.

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