#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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IAFME – International Alliance for ME webinar, Thurs 24 January 2019

IAFME – International Alliance for ME

Webinar: Thurs January 24, 2019 at 6pm GMT (1pm EST)

WHO Head-Quater in Geneva, Switzerland.
Copyright : WHO/Pierre Virot

As a member of the International Alliance for ME, WAMES invites you to attend a webinar to find out more about the work to getting ME on the agenda of the World Health Organisation (WHO).

What is IAFME?

The IAFME is a collaboration between national organisations. Its purpose is to encourage an appropriate public health response from the World Health Organisation and its Member States to meet the needs of people living with M.E. IAFME seeks to work collaboratively and inclusively as part of a worldwide advocacy movement alongside the current mobilisation of the M.E community.

The webinar

This webinar is an opportunity to better understand the raison d’être of the IAFME. Alexandra Heumber, Director of IAFME, based in Geneva, will present the IAFME, will explain in detail the purpose of the organisation and its objectives and will respond to your questions.

Alexandra will present the following information:

1. Presentation of IAFME overall

a. Why IAFME?
b. What and Who is IAFME?
c. What are our Mission, Vision, Values, members’ common goals?
d. What is our purpose? And what is the difference with the other existing international organisations

2. Why is the World Health Organisation (WHO) our focus?

a. What is the World Health Organisation?
b. How can we make ME relevant to an international organization such as the WHO?
c. Do you have any concrete examples of how resolutions have impacted care?

3. Presentation of the IAFME’s goal and objectives 2019-2020

a. Organisational capacity: IAFME, being now formally constituted, is building up the capacity and the legitimacy to be a formal consultation channel with the WHO and its Member States.
b. Advocacy: increase profile and awareness at UN level and get ME on the WHO agenda
c. Partnerships: building support and collaboration among public health community

4. What has IAFME achieved so far?

5. What are IAFME’s future activities and how can the community contribute?

Join us on Thurs January 24, 2019 at 6pm GMT (1pm EST). IAFME has the potential to achieve major advancements in the awareness and management of ME. We will all benefit from their work.

Places are limited, so please register and join the webinar early so you are not disappointed. Here is a link to register

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The UK debate on ME has been granted – 24 January 2019

#MEAction blog post, 17 January 2019: Take Action Now! The UK debate on ME has been granted

We are delighted that Carol Monaghan MP has managed to secure a debate in Parliament on Thursday afternoon, 24th January.

This debate has been confirmed by the Backbench Business Committee and will take place in the Main Chamber. Carol Monaghan has been pushing for a Main Chamber debate since the success of her previous debates. These have both been debated in Westminster Hall focussing on the PACE trial and biomedical research and treatments of ME. Each debate has attracted increasing interest, understanding and support from MPs across the political spectrum and we need to make sure this debate is the best so far!

Now is when the ME community must come into its own urging MPs to attend the debate and vote. It is the power of the grassroots that has built so much interest and attention from MPs.    Take action now!

Email your MP      Tweet your MP 

The motion is as follows:

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures”.

Carol Monaghan MP made her application for the debate on 30th October 2018 supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. You can read our summary and watch the 10 minute application here. Or read the full transcript from Hansard here (starts at Q11).

The rate at which MPs are engaging with ME is hugely exciting. Thank you to everyone who has already contacted their MP to explain how ME has affected your life and how you need immediate change. By sharing your experience a growing number of MPs are gaining confidence to speak out on your behalf.

#MEAction UK has also produced a parlimentary briefing for MPs. Feel free to use it when you contact your MP!

Read the briefing

The 2018 campaign briefing for AMs will also provide an overview of the ME situation in Wales for Welsh MPs.

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The importance of accurate diagnosis of ME/CFS in children & adolescents: a commentary

The importance of accurate diagnosis of ME/CFS in children and adolescents: a commentary, by Keith J Geraghty and Charles Adeniji in Frontiers in Pediatrics [Preprint December 31, 2018]

Article abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that causes a range of debilitating symptoms. While most research has focused on adults, the illness also presents in children and adolescents. Many physicians find it difficult to diagnose the illness.

In this commentary paper, we discuss a range of salient themes that have emerged from our ongoing research into the prevalence of ME/CFS in children and adolescents. We discuss reasons why paediatric prevalence estimates vary widely in the literature, from almost 0% to as high as 3%.

We argue that there is considerable misdiagnosis of paediatric cases and over-inflation of estimates of paediatric ME/CFS. Many children and teenagers with general fatigue and other medical complaints may meet loose diagnostic criteria for ME/CFS.

We make recommendations for improving epidemiological research and identifying
paediatric ME/CFS in clinical practice.

 

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CFS in the emergency department (US)

Chronic fatigue syndrome in the emergency department, by CR Timbol, JN Baraniuk in Open Access Emergency Medicine Vol 11, pp 15-28, [Published 11 January 2019]

 

Research abstract:

Purpose:
Chronic fatigue syndrome (CFS) is a debilitating disease characterized by fatigue, postexertional malaise, cognitive dysfunction, sleep disturbances, and widespread pain. A pilot, online survey was used to determine the common presentations of CFS patients in the emergency department (ED) and attitudes about their encounters.

Methods:
The anonymous survey was created to score the severity of core CFS symptoms, reasons for going to the ED, and Likert scales to grade attitudes and impressions of care. Open text fields were qualitatively categorized to determine common themes about encounters.

Results:

Fifty-nine percent of respondents with physician-diagnosed CFS (total n=282) had gone to an ED. One-third of ED presentations were consistent with orthostatic intolerance; 42% of participants were dismissed as having psychosomatic complaints. ED staff were not knowledgeable about CFS. Encounters were unfavorable (3.6 on 10-point scale). The remaining 41% of subjects did not go to ED, stating nothing could be done or they would not be taken seriously. CFS subjects can beidentified by a CFS questionnaire and the prolonged presence (>6 months) of unremitting fatigue, cognitive, sleep, and postexertional malaise problems.

Conclusion:
This is the first investigation of the presentation of CFS in the ED and indicates the importance of orthostatic intolerance as the most frequent acute cause for a visit. The self-report CFS questionnaire may be useful as a screening instrument in the ED. Education of ED staff about modern concepts of CFS is necessary to improve patient and staff satisfaction. Guidance is provided for the diagnosis and treatment of CFS in these
challenging encounters.

In the media:

Daily Mail:  ‘It’s all in your head’: Half of patients with chronic fatigue
syndrome claim they are dismissed by doctors who say the
illness is psychological

Georgetown University press release: Perceptions of chronic fatigue syndrome in the emergency department

 

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Genome-epigenome interactions associated with ME/CFS

Genome-epigenome interactions associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Santiago Herrera, Wilfred C de Vega, David Ashbrook, Suzanne D Vernon and Patrick O McGowan in Epigenetics 2018 [Published online: 5 Dec 2018]

 

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex disease of unknown etiology. Multiple studies point to disruptions in immune functioning in ME/CFS patients as well as specific genetic polymorphisms and alterations of the DNA methylome in lymphocytes.

However, potential interactions between DNA methylation and genetic background in relation to ME/CFS have not been examined. In this study we explored this association by characterizing the epigenetic (~480 thousand CpG loci) and genetic (~4.3 million SNPs) variation between cohorts of ME/CFS patients and healthy controls. We found significant associations of DNA methylation states in T-lymphocytes at several CpG loci and regions with ME/CFS phenotype. These methylation anomalies are in close proximity to genes involved with immune function and cellular metabolism. Finally, we found significant correlations of genotypes with methylation modifications associated with ME/CFS.

The findings from this study highlight the role of epigenetic and genetic interactions in complex diseases, and suggest several genetic and epigenetic elements potentially involved in the mechanisms of disease in ME/CFS.

Read full paper

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Stress control course Bridgend, begins 22 Jan 2019

The Stress Control course, Bridgend

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 YMCA, Angel Street, Bridgend CF31 4AD
  • Tuesday 22 January – 26 February 2019  1-2.30 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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Prospective biomarkers from plasma metabolomics of ME/CFS implicate redox imbalance in disease symptomatology

Prospective biomarkers from plasma metabolomics of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome implicate Redox imbalance in disease symptomatology, by Arnaud Germain, David Ruppert, Susan M. Levine and Maureen R. Hanson in Metabolites 2018, 8(4), 90 [Published 6 Dec 2018]

 

Research abstract:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease of enigmatic origin with no established cure. Its constellation of symptoms has silently ruined the lives of millions of people around the world. A plethora of hypotheses have been vainly investigated over the past few decades, so that the biological basis of this debilitating condition remains a mystery.

In this study, we investigate whether there is a disturbance in homeostasis of metabolic networks in the plasma of a female 32-patient cohort compared to 19 healthy female controls.

Extensive analysis of the 832-metabolite dataset generated by Metabolon®, covering eight biological classes, generated important insight into metabolic disruptions that occur in ME/CFS. We report on 14 metabolites with differences in abundance, allowing us to develop a theory of broad redox imbalance in ME/CFS patients, which is consistent with findings of prior work in the ME/CFS field.

Moreover, exploration of enrichment analysis using www.MetaboAnalyst.ca provides information concerning similarities between metabolite disruptions in ME/CFS and those that occur in other diseases, while its biomarker analysis unit yielded prospective plasma biomarkers for ME/CFS. This work contributes key elements to the development of ME/CFS diagnostics, a crucial step required for discovering a therapy for any disease of unknown origin.

 

 

 

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Multidimensional comparison of cancer-related fatigue & CFS: the role of psychophysiological markers

Multidimensional comparison of cancer-related fatigue and Chronic Fatigue Syndrome: the role of psychophysiological markers, by Hye Youn Park, Hong Jun Jeon, Young Rong Bang, In-Young Yoon in Psychiatry investigation [Published online: January 7, 2019]

Research abstract:

Objective:
The present study compared cancer-related fatigue (CRF) and chronic fatigue syndrome (CFS) using multidimensional measurements with the aim of better understanding characteristics and exploring markers of two similar fatigue syndromes.

Methods:
Twenty-five patients with CRF and twenty patients with CFS completed questionnaires, including the Fatigue Severity Scale (FSS), Hospital Anxiety Depression Scale (HADS), Perceived Stress Scale (PSS), and Pittsburgh Sleep Quality Index (PSQI). Additionally, levels of high sensitivity C-reactive protein (hs-CRP), heart rate variability (HRV), and (EEG) were obtained. Neurocognitive functioning was also evaluated.

Results:
Both groups showed comparable levels of psychological variables, including fatigue. Compared to CFS subjects, CRF patients had significantly higher hs-CRP levels and a reduced HRV-index. The within-group analyses revealed that the FSS score of the CRF group was significantly related to scores on the HADS-anxiety, HADS-depression, and PSQI scales. In the CFS group, FSS scores were significantly associated with scores on the PSS and the absolute delta, theta, and alpha powers in frontal EEG.

Conclusion:
Findings indicate that different pathophysiological mechanisms underlie CFS and CRF. Inflammatory marker and HRV may be potential biomarkers for distinguishing two fatigue syndromes and frontal EEG parameters may be quantitative biomarkers for CFS.

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Hope, disappointment and perseverance: reflections of people with ME/CFS & MS participating in biomedical research

Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study, by
Eliana M. Lacerda, Clare McDermott, Caroline C. Kingdon, Jack Butterworth, Jacqueline M Cliff, Luis Nacul in Health Expectations [Preprint January 10, 2019]

 

Research abstract:

Background:
The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception.

Aim:
To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities.

Method:
Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically.

Results:
A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged:

(a) Seeking coherence: participants’ reactions to initial research findings;

(b) Seeking acceptance: participants explore issues of stigma and validation;

(c) Seeking a diagnosis: participants explore issues around diagnosis in their lives;

(d) Seeking a better future: participants’ ideas on future research; and

(e) Seeking to share understanding: participants’ views on dissemination. Focus
groups perceived progress in ME/CFS and MS research in terms of ‘putting
together a jigsaw’ of evidence through perseverance and collaboration.

Conclusion:
This study provides insight into the emotional, social and practical importance of research to people with MS and ME/CFS, suggesting a range of research topics for the future.

Findings should inform biomedical research directions in ME/CFS and MS, adding patients’ voices to a call for a more collaborative research culture.

Excerpt from research paper:

4.1 Summary of key results

In recent years, patient perspectives have become increasingly important in informing the is planning, conduct and dissemination of research. In this study, participants with ME/CFS and MS illustrated the importance of research as means of seeking coherence to make sense of their illness (Theme 1), seeking diagnostic clarity (Theme 2) and proof of illness by which they could gain acceptance and from the medical profession and from society (Theme 3). Participants offered ideas on future research priorities (Theme 4) and recommendations for dissemination (Theme 5).

A key aim in this study was to elicit patient views on biomedical research priorities for the future. Overall, the research topics proposed fitted already familiar categories, such as immunological and mitochondrial dysfunction in ME, triggers including viruses, toxins and other pathogens, and biomedical differences between different subgroups. For participants with MS, the search for a cure was viewed as paramount, though participants were also interested in investigating genetic, viral, and immunological factors in triggering the illness. While not unexpected, these findings have value in confirming findings from our previous patient consultation work.2 What this study adds to our understanding is a vivid contextualization of these specific requests, within a wider and more personal understanding of how biomedical confirmation of an illness, or lack of it, can impact the patient’s quality of life, with factors including social acceptance, patient–doctor relationships, self‐confidence and support.

An intriguing finding of the study was the extent to which some of the MS participants reported feeling disbelieved by doctors, employers, or others about their symptoms prior to diagnosis. Their accounts of distress and loss of social confidence resulting from this resonate with the experiences of ME/CFS patients. Within this context, sharing research results was portrayed not only as providing information to medical professionals, families, and others in society, but also as a means of changing attitudes. Participants called for a more collaborative research culture, with greater emphasis on explaining where new knowledge fitted into a wider “jigsaw” of knowledge, and less on apparent “breakthrough” discoveries. Participants expressed pleasure at having played a part in contributing to the current research, tempered with awareness that determination was needed for the research journey ahead.

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CBT & GET patient survey – ends 31 Jan 2019

CBT and GET Patient Survey

Forward ME has launched a survey, having been asked by the National Institute of Health and Care Excellence (NICE) to gather evidence and experiences of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT).

NICE has recently started the process of reviewing (and ultimately replacing) the guideline on M.E./CFS Diagnosis and Management.  As part of this process Forward ME welcomes the opportunity to ensure that the views of the patients are taken into account at an early stage.

The survey focus is deliberately narrow and concentrates solely on GET and CBT, a key issue for people with M.E./CFS. It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February. The deadline for completing this questionnaire is the 31st January 2019, to meet the timeframe set out by NICE. This unfortunately means that Forward ME do not have the time or capacity to send out/accept paper copies.

We will make it very clear to NICE when we submit the report that those unable to complete the survey online, including many severely affected people, have not been able to take part. The survey is however designed to allow a carer, parent or another person to fill it in on behalf of someone else if they are unable to do this themselves.

The Countess of Mar, Chair of Forward ME said

“We are very pleased that the newly formed NICE Guideline Development Group (GDG) have indicated that they want to work closely with charities representing people with ME.  They have requested further evidence of outcomes and consequences of CBT and GET in patients with ME.  Although both the ME Association and Action for M.E. have previously carried out surveys of their members, Forward ME have been asked if they will conduct a survey which will reach as many M.E. sufferers as possible in order to provide the GDG with up-to-date results.”

The survey is designed for adults and children who have been diagnosed with myalgic encephalomyelitis (M.E.), chronic fatigue syndrome (CFS), M.E./CFS, or post-viral fatigue syndrome (PVFS), and who have undertaken or were offered CBT or GET in the UK since 2007. All responses collected in this survey will be anonymous.

The Countess of Mar continues

“We are sure that you will recognise how important it is that the new NICE guideline reflects the real situation of people with ME and that, by completing this survey you will be helping the GDG to reach informed conclusions that will be the basis of their recommendations for the new M.E. guideline.”

Take the questionnaire before the 31 January 2019.

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