MESiG support group AGM Sat 1 June 2019

MESiG Support Group invites you to join them from 2 – 5 pm on Saturday 1 June 2019 at Bethel Church Community Centre, Llangranog Road, Llanishen,  Cardiff, CF14 5BJ

Annual General Meeting

The special guest speaker is Dr Nina Muirhead, who herself suffers with ME.     Julie Morgan, Assembly Member for Cardiff North and Deputy Minister for Health and Social Services may also be able to attend.   Tea and Cake will be provided and there will be the usual raffle.

All are welcome, please note that people with similar conditions are also welcome to come along.

 

More info: mesigwales@gmail.com      website

Next meeting:  1 July 2019

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Searching for serum antibodies to neuronal proteins in patients with ME/CFS

Searching for serum antibodies to neuronal proteins in patients with Myalgic Encephalopathy/Chronic Fatigue Syndrome, by Maria Pia Giannoccaro, Judith Cossins, Kari Sorland, Oystein Fluge, Angela Vincent in Clinical Therapeutics Vol 41, Issue 5, May 2019, Pages 836-847

 

Research abstract:

Purpose:
A role for the immune system in causing myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) is long suspected, but few studies have looked for specific autoantibodies that might contribute to the symptoms. Our aim was to look for evidence of antibodies to neuronal proteins in patients with ME/CSF.

Methods:
Sera samples from 50 patients and 50 healthy individuals were sent coded to the Neuroimmunology Laboratory in Oxford. Screening for antibody binding to neuronal tissue was performed on brain tissue and neuronal cultures. Specific serum antibodies were assessed by antigen-specific cell-based assays and radioimmunoassays. After antibody testing, the associations between seropositive status and clinical data were
investigated.

Findings:
Overall, 8 patients and 11 participants were found to have some serum immunoreactivity toward neuronal or neuromuscular junction proteins, but only 1 patient and 2 participants had specific serum antibodies. Nevertheless, seropositive status in patients with ME was associated with shorter duration since onset and a more severe disease.

Implications:
The results indicate no overall increased frequency of antibodies to neuronal proteins in ME/CSF and no evidence of a specific antibody that might be causative or contribute to clinical features in patients. However, the association of seropositive status with shorter duration of disease and more severe symptoms suggests a possible role of antibodies
at onset in some patients and should be the focus of future studies.

Read full article

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Biotransformation profiles from a cohort of chronic fatigue women in response to a hepatic detoxification challenge

Biotransformation profiles from a cohort of chronic fatigue women in response to a hepatic detoxification challenge, by Elardus Erasmus, Francois E Steffens, Mari van Reenen, B Chris Vorster, Carolus J Reinecke in  PLoS ONE 14 (5) May 2019 [https://doi.org/10.1371/journal.pone.0216298]

 

Research abstract:

Chronic fatigue, in its various manifestations, frequently co-occur with pain, sleep disturbances and depression and is a non-communicable condition which is rapidly becoming endemic worldwide. However, it is handicapped by a lack of objective definitions and diagnostic measures.

This has prompted the World Health Organization to develop an international instrument whose intended purpose is to improve quality of life (QOL), with energy and fatigue as one domain of focus. To complement this objective, the interface between detoxification, the exposome, and xenobiotic-sensing by nuclear receptors that mediate induction of biotransformation-linked genes, is stimulating renewed attention to a rational development of strategies to identify the metabolic profiles in complex multifactorial conditions like fatigue.

Here we present results from a seven-year study of a cohort of 576 female patients suffering from low to high levels of chronic fatigue, in which phase I and phase II biotransformation was assessed. The biotransformation profiles used were based on hepatic detoxification challenge tests through oral caffeine, acetaminophen and acetylsalicylic acid ingestion coupled with oxidative stress analyses.

The interventions indicated normal phase I but increased phase II glucuronidation and glycination conjugation. Complementarity was indicated between a fatigue scale, medical symptoms and associated energy-related parameters by application of Chi-square Automatic Interaction Detector (CHAID) analysis.

The presented study provides a cluster of data from which we propose that multidisciplinary inputs from the combination of a fatigue scale, medical symptoms and biotransformation profiles provide the rationale for the development of a comprehensive laboratory instrument for improved diagnostics and personalized interventions in patients with chronic fatigue with a view to improving their QOL.

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Health services for ME in Wales – a 20 year WAMES update

Health services for ME in Wales – a WAMES update

 

WAMES in Wales

It is now 20 years since the Welsh Government (WG) was established. At that time NHS Wales became independent and WAMES began campaigning in Wales for improvements to health services.  Over the years we have talked to numerous Health Ministers, civil servants, AMs, Health Board executives and NHS staff. We have taken part in focus groups, stakeholder groups, working groups and scoping exercises. We have run surveys of patient experience and campaigns to raise awareness in government and the NHS.

That is what WAMES has done, largely behind the scenes, to try to improve healthcare for people with ME. How did the Welsh Government and NHS Wales respond?

Welsh Government & ME

  • Since 1999 many AMs over the years have joined us in asking questions about the lack of awareness and services, leading to one of the largest postbags the government have received on a single medical condition.
  • In 2004 a series of Masterclasses were planned around the country.  The interest shown by GPs was so low, only one took place.
  • In 2009 a Task & Finish Group was set up to explore whether a clinical pathway was needed and decided it was.
  • WAMES joined a pathway working group to produce a Map of Medicine pathway for Wales. This was unfortunately based on the NICE guidelines and shortly afterwards the WG withdrew from the Map of Medicine database (based in England).
  • The Health Minister wrote to Health Boards urging them to implement the pathway and improve services. None appeared to do so.
  • In 2013 a second Task & Finish Group was set up with representation from the WG, NHS and patients. A report was published in 2014 outlining steps each Health Board should take to improve services. Few Health Boards have implemented more than one or two of the steps!
  • In 2014 An All Wales Implementation group (AWiG) was set up with reps from WG, the NHS and patients to oversee the implementation of the report.

Has healthcare for ME improved?

It is clear that there is an increase in the number of GPs who have heard of ME, though many still wish to call it CFS and focus on fatigue. There is still a belief that ME is difficult to diagnose and nothing can be done to help. Some still believe it is a psychological condition or that it simply doesn’t exist at all. Many patients tell us they still cannot find someone within Wales to give them an informed diagnosis or to refer them to support services.

WAMES and local groups in Wales still get too many helpline calls from people who are enduring appalling treatment from untrained and prejudiced health care professionals.

The existing services for pain and fatigue continue to offer rehabilitation services based on GET and CBT, though few people with ME are interested. Reports of relapse caused by this approach continue to reach us from people with ME who have undergone the course in NW Wales. Suicides and attempted suicides have increased in number.

Why is progress so slow?

There are many possible reasons contributing to this:

  • Continuing reorganisation and financial difficulties in Health Boards
  • Constantly changing personnel in HBs and Welsh Government
  • Lack of a clinical champion for Wales
  • No funding from the Welsh Government
  • Insistence that answers should come from within Wales, when no-one has sufficient experience or knowledge of ME
  • No obligation for HBs to implement improvements
  • Overworked doctors, who are waiting for a diagnostic test and treatments to materialise before becoming involved with this patient group
  • An unwillingness to look beyond NICE and listen to patients and explore the biomedical research
  • A feeling that ME is controversial due to the continuing activities of a biopsychosocial community that view ME as perpetuated by muscle deconditioning and faulty illness beliefs – in contradiction to the latest research.

WAMES believes that a key stumbling block is the shortage of informed GPs willing and able to diagnose.   Should diagnosis improve there would be statistics of the numbers and location of patients and it would be harder for HBs to ignore ME. The evidence for the need for services for this patient group would then be clear.

What next?

The All Wales Implementation Group (AWIG) has a new government policy lead.

Current work priorities are:

  • Inclusion of ME/CFS in IMTPs (Health Boards 3 year work plans)
  • Redesigning a clinical pathway
  • Developing patient information sheets
    Discussing the development of GP training resources with Health Education and Improvement Wales (HEIW)

WAMES will:

  • continue to represent people with ME on AWiG
  • continue to explore awareness raising possibilities with the RCGP;
  • work with the NHS in devising an ME self-management programme
  • represent Welsh people with ME on the NICE guideline review
  • take every opportunity to raise awareness of neurological ME in NHS Wales

Get in touch if you would like to support WAMES continue its work to improve services for people with ME in Wales  jan@wames.org.uk

 

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ACTivate your life well-being course begins 29 May 2019, Newport

ACTtivate Your Life course in Newport

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.

Newport

  • Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY
  • Wed 6-8 pm     29 May – 19 June 2019

All courses 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!

About the course

Classes are based on Acceptance and Commitment Therapy, and Mindfulness based practices. These psychological approaches teach people how to reduce suffering by accepting the things in life we cannot control and committing ourselves to the things we really care about. Sessions run for approximately 2 hours, once a week, with a break half way through the session. The classes are supported by PowerPoint presentations, Home Activities and Handout sheets.

Sessions cover the following four topics:

ACT 1: Getting Wise to Your Mind
ACT 2: Facing up to Life
ACT 3: Mindfulness
ACT 4: Doing What Matters

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

Check out the self help resources

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend

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ME support group meeting, Montgomery 29 May 2019

You are invited to join people with ME and their carers for a chat and a cuppa at the Dragon Hotel, Montgomery, Powys on Wednesday 29 May 2019 between 2.30 and 3.30pm.

Contact Donna Teague beforehand to confirm the meeting is going ahead.  dateague@hotmail.co.uk

Next meeting:   26 June 2019

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Stress management course begins Ebbw Vale 28 May 2019

The 6-week course in Stress Control will help you to understand stress, how it can affect you and how to control it. Each week you will learn new Stress Control skills and will learn how to fit these into your own personal Stress Control toolkit.

The six sessions are:

  • Learning about stress
  • Controlling your body
  • Controlling your thoughts
  • Controlling your actions
  • Controlling panic and sleep problems
  • Boosting wellbeing and looking to the future

Each person on the course receives a free Stress Control manual, containing course information, home activities and an audio CD of various mindfulness and relaxation activities. You can download the separate sections of the manual and access the audio here

Stress can affect all of us, whether we are young or old, male or female, rich or poor. Experiencing problems with stress doesn’t mean that we’re stupid, weak or mad. Stress is normal.

Ebbw Vale

  • Tues 28 May – 2 July 2019, 10 am -12 pm
  • Venue: Ebbw Vale Institute, Church Street, Ebbw Vale, NP23 6BE

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

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend

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WAMES AGM 15th June 2019

Annual General Meeting of WAMES

 

The annual business meeting of the Welsh Association of ME & CFS Support will be held by Skype to review past events and plan future activities.

Please contact jan@wames.org.uk if you have anything to report to WAMES, or topics you wish us to discuss or more importantly, if you would like to join the team or volunteer in a any way.  Let Jan know if you wish to attend.

When:

Saturday 15th June 2019   at  10.30am

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ME, CFS & chronic fatigue: three distinct entities requiring complete different approaches

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Chronic Fatigue: three distinct entities requiring complete different approaches, by Frank NM Twisk in Current Rheumatology Reports June 2019, 21:27 [https://doi.org/10.1007/s11926-019-0823-z]

 

Letter abstract:

Purpose of Review:
A recent review implicates that myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), and chronic fatigue are part of the “fatigue spectrum” and recommends “longitudinal studies integrating biopsychosocial approaches to inform early management and targeted rehabilitation strategies.”

Recent Findings:
ME is a neuromuscular disease distinguished by muscle fatigability (prolonged muscle weakness after minor exertion) and specific signs of neurological dysfunction. ME is not equivalent to CFS, as proposed by the authors. CFS is defined as unexplained chronic fatigue accompanied by at least four out of a list of eight specific symptoms. CFS is a distinct clinical entity and not merely a severe variant of CF, as suggested.

Proof that CF, CFS, and ME are part of a “fatigue continuum” and that CF can convert to CFS at a later stage is lacking. Biopsychosocial approaches for early management and rehabilitation of CF, as promoted by the authors, are at odds with the current understandings of ME, CFS, and CF. The (bio)psychosocial explanatory models for ME and CFS have proven to be invalid, and the associated interventions, cognitive behavioral therapy and graded exercise therapy, have shown to be ineffective and even potentially harmful.

Summary:
ME, CFS, and CF are three very distinct clinical entities. Interventions justified by (bio)psychosocial models appear to be unsuccessful and potentially noxious. To develop effective treatments, it is crucial to make a clear distinction between ME, CFS, and CF and to leave the (bio)psychosocial explanations and therapies behind us.

Read full article

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Increased risk of CFS following psoriasis in Taiwan

Increased risk of chronic fatigue syndrome following psoriasis: a nationwide population-based cohort study, by Shin-Yi Tsai, Hsuan-Ju Chen, Chi Chen, Chon-Fu Lio, Chien-Feng Kuo, Kam-Hang Leong, Yu-Ting Tina Wang, Tse-Yen Yang, Ching-Hui You and Wei-Sheng Wang in Journal of Translational Medicine 2019 May 17:154
[https://doi.org/10.1186/s12967-019-1888-1]

 

Research abstract:

Background:
The onset of chronic fatigue syndrome (CFS) has been shown to be associated with several immunological conditions such as infections or atopy. The aim of this study was to clarify the risk of chronic fatigue syndrome following the diagnosis of psoriasis, an immune-related dermatological disease, by analyzing the National Health Insurance Research Database of Taiwan.

Method:
2616 patients aged 20 years or older with newly diagnosed psoriasis during 2004–2008 and 10,464 participants without psoriasis were identified. Both groups were followed up until the diagnoses of CFS [Fukuda] were made at the end of 2011.

Results:
The relationship between psoriasis and the subsequent risk of CFS was estimated through Cox proportional hazards regression analysis, with the incidence density rates being 2.27 and 3.58 per 1000 person-years among the non-psoriasis and psoriasis populations, respectively (adjusted hazard ratio [HR] = 1.48, with 95% confidence interval [CI] 1.07–2.06). In the stratified analysis, the psoriasis group were consistently associated with a higher risk of CFS in male sex (HR = 2.05, 95% CI 1.31–3.20) and age group of ≥ 60 years old (HR = 2.32, 95% CI 1.33–4.06). In addition, we discovered that the significantly increased risk of CFS among psoriasis patients is attenuated after they receive phototherapy and/or immunomodulatory drugs.

Conclusions:
The data from this population-based retrospective cohort study revealed that psoriasis is associated with an elevated risk of subsequent CFS, which is differentiated by sex and age.

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