#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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Associations between clinical symptoms, plasma norepinephrine & deregulated immune gene networks in subgroups of adolescents with CFS

Associations between clinical symptoms, plasma norepinephrine and deregulated immune gene networks in subgroups of adolescent with Chronic Fatigue Syndrome, by Chinh Bkrong Nguyen, Surendra Kumar, Manuela Zucknick, Vessela N Kristensen, Johannes Gjerstad, Hilde Nilsen, Vegard BruunWyller, in Brain Behav Immun. 2018 Nov 9. pii: S0889-1591(18)30796-7 [Epub ahead of print]

Highlights:

Research abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is one of the most important causes of disability among adolescents while limited knowledge exists on genetic determinants underlying disease pathophysiology.

METHODS: We analyzed deregulated immune-gene modules using Pathifier software on whole blood gene expression data (29 CFS patients, 18 controls). Deconvolution of immune cell subtypes based on gene expression profile was performed using CIBERSORT. Supervised consensus clustering on pathway deregulation score (PDS) was used to define CFS subgroups. Associations between PDS and immune, neuroendocrine/autonomic and clinical markers were examined. The impact of plasma norepinephrine level on clinical markers over time was assessed in a larger cohort (91 patients).

RESULTS: A group of 29 immune-gene sets was shown to differ patients from controls and detect subgroups within CFS. Group 1P (high PDS, low norepinephrine, low naïve CD4+ composition) had strong association with levels of serum C-reactive protein and Transforming Growth Factor-beta. Group 2P (low PDS, high norepinephrine, high naïve CD4+composition) had strong associations with neuroendocrine/autonomic markers. The corresponding plasma norepinephrine level delineated 91 patients into two subgroups with significant differences in fatigue score.

CONCLUSION: We identified 29 immune-gene sets linked to plasma norepinephrine level that could delineate CFS subgroups. Plasma norepinephrine stratification revealed that lower levels of norepinephrine were associated with higher fatigue. Our data suggests potential involvement of neuro-immune dysregulation and genetic stratification in CFS.

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Shop this Christmas on Amazon Smile & raise funds free for WAMES

You shop. Amazon gives, with a smile.

Amazon will donate 0.5% of the net purchase price of eligible purchases to the charitable organisation of your choice.

Choose WAMES!

AmazonSmile is the same Amazon you know. Same products, same prices, same service.

  • Go to https://smile.amazon.co.uk
  • Sign in to your account or register a new account
  • Name WAMES as the charity you wish to support
  • Now shop – Amazon will send money to WAMES
  • Or go directly to support WAMES

Remember – always shop through https://smile.amazon.co.uk

Choose WAMES now and help keep WAMES on the campaign trail!

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The abnormal cardiac index & stroke volume index changes during a normal tilt table test in ME/CFS patients… are not related to deconditioning

The abnormal cardiac index and stroke volume index changes during a normal tilt table test in ME/CFS patients compared to healthy volunteers, are not related to deconditioning, by C (Linda) MC van Campen, Frans C. Visser in Journal of Thrombosis and Circulation, 7 November, 2018

Research abstract: 

1.1    Background. A small study in ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) patients undergoing tilt testing, showed that, despite a normal tilt test, stroke volumes and cardiac output were lower than in healthy volunteers. Moreover, it was suggested that this difference was related to deconditioning of patients.

Aim of the study. We performed table testing in 150 ME/CFS patients. Stroke volumes and cardiac output were related to the severity of the disease.

1.2    Methods and results. In the patients the severity of the disease was clinically evaluated according to the ME criteria and scored as mild, moderate or severe disease. In a subgroup of 109 patients this clinical diagnosis was confirmed by the physical functioning score of the Rand-36 questionnaire. Significantly lower physical functioning scores (indicating worse functioning) were observed in the more severely affected patients. Stroke Volume Index (SVI) and Cardiac Index (CI) were measured by suprasternal aortic Doppler imaging in the supine position, prior to the tilt, and twice during the tilt. Thirty-seven healthy volunteers underwent the same tilt protocol. In all patients and all healthy volunteers, a normal heart rate and blood pressure response was observed during the tilt. The decreases in SVI and CI during the tilt was significantly larger in patients compared to the SVI and CI decrease in HV. The decrease in SVI and CI were similar and not significantly different between the mild, moderate, and severe ME groups.

1.3    Conclusions. During a normal tilt table test decreases in SVI and CI decrease are significantly greater in ME/CFS patients than in HV, consistent with previous work. The absence of differences between patients with mild, moderate, and severe ME/CFS suggests that the decreases in stroke volumes and cardiac output are not related to deconditioning. Other factors like decreased blood volumes and autonomic dysfunction may cause this difference in the hemodynamic response between ME/CFS patients and HV.

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Low omega-3 index & polyunsaturated fatty acid status in patients with CFS/ME

Low omega-3 index and polyunsaturated fatty acid status in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, by Jesús Castro-Marrero, Joan Carles Domingo, Alba Martinez-Martinez, José Alegre, Clemens von Schacky in Prostaglandins, Leukotrienes and Essential Fatty Acids (PLEFA) [Published online: November 9, 2018]

Highlights:

  • Erythrocyte omega-3 index (5.75%) and n-3 PUFA levels are low in individuals with CFS/ME.
  • The erythrocyte omega-3 index may be a useful biomarker of overall health, but cut-off points need be validated in the Spanish CFS/ME population.
  • This study suggests that low EPA + DHA levels may be a risk factor for poor cardiovascular health and pro-inflammatory status in CFS/ME. Understanding the role of omega-3 PUFAs and immunometabolism should be the next step.
  • Further studies of omega-3 fatty acid supplementation in CFS/ME are warranted.

Research abstract:

Background:
Several studies have suggested that low levels of omega-3 fatty acids (n-3 PUFAs) including eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) are associated with cardiovascular risk, major depression, sleep problems, inflammation and other health-related issues. So far, however, erythrocyte PUFA status in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) has not been established. This study aimed to determine whether n-3 PUFA content and omega-3 index are associated with measures in CFS/ME patients.

Patients and Methods:
PUFA levels and omega-3 index were measured in 31 Spanish CFS/ME patients using the HS-Omega-3 Index® method. Demographic and clinical characteristics and self-reported outcome measures were also recorded.

Results:
A low mean omega-3 index (5.75%) was observed in 92.6% of the sample. Omega-3 index was inversely correlated with the AA/EPA ratio (p= 0.00002) and the BMI (p= 0.0106). In contrast, the AA/EPA ratio was positively associated with the BMI (p= 0.0038). No association for FIS-40 and PSQI measures was found (p> 0.05).

Conclusion:
The low omega-3 index found in our CFS/ME patients may indicate increased risks for cardiovascular health, which should be further investigated. A low omega-3 index also suggests a pro-inflammatory state in these patients. Attempts should be made to increase the omega-3 index in CFS/ME patients, based on intervention trials assessing a potential therapeutic value.

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CFS: Suggestions for a nutritional treatment in the therapeutic approach

Chronic fatigue syndrome (CFS): Suggestions for a nutritional treatment in the therapeutic approach, by Geir Bjørklund, Maryam Dadar, Joeri J Pen, Salvatore Chirumbolo, Jan Aaset in Biomedicine & Pharmacotherapy Vol 109, Jan 2019, Pp 1000-1007

Review abstract:
Chronic fatigue syndrome (CFS) is known as a multi-systemic and complex illness, which induces fatigue and long-term disability in educational, occupational, social, or personal activities. The diagnosis of this disease is difficult, due to lacking a proper and suited diagnostic laboratory test, besides to its multifaceted symptoms. Numerous factors, including environmental and immunological issues, and a large spectrum of CFS symptoms, have recently been reported.

In this review, we focus on the nutritional intervention in CFS, discussing the many immunological, environmental, and nutritional aspects currently investigated about this disease. Changes in immunoglobulin levels, cytokine profiles and B- and T- cell phenotype and declined cytotoxicity of natural killer cells, are commonly reported features of immune dysregulation in CFS. Also, some nutrient deficiencies (vitamin C, vitamin B complex, sodium, magnesium, zinc, folic acid, l-carnitine, l-tryptophan, essential fatty acids, and coenzyme Q10) appear to be important in the severity and exacerbation of CFS symptoms.

This review highlights a far-driven analysis of mineral and vitamin deficiencies among CFS patients.

Excerpt:

A meta-analysis with 27 studies concludes that there are still few data to provide a promising hypothesis for the effective role of mineral and vitamin supplementation in the CFS pathophysiology and therapy. Current studies on minerals and vitamins in CFS patients need large population-based and age-matched prospective research, as well as well-observed interventional studies in CFS patients, to achieve more awareness in the efficacy of minerals and vitamins in the CFS pathophysiology. According to this analysis, vitamin A and vitamin E are promising vitamins that need further examination.

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CWTCH support group meets Haverfordwest 16 Nov 2018

Evening Meeting of Cwtch:

Friday 16 November 2018, 6-8 pm at Cashfield Community Centre, Haverfordwest, SA61 2GA

Topic: Emotional intelligence/mind and body connection with Katie-May White

Cwtch is a support group for adults aged 18-45 years old who have long term or chronic physical health conditions. (One of the organisers has ME).

More info: 07530 870024   cwtch@live.co.uk

CWTCH (Pembrokeshire) website: http://cwtch-pembrokeshire.wales/

Facebook: https://www.facebook.com/CWTCHpembs/

Next meeting: Fri 7 Dec

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Hand grip strength as a clinical biomarker for ME/CFS & disease severity

Hand grip strength as a clinical biomarker for ME/CFS and disease severity, by Luis C Nacul, Kathleen Mudie, Caroline Kingdon, Taane G Clark, Eliana M Lacerda in Frontiers in Neurology, 5 Nov 2018 [Preprint]

Research abstract:

Background:
The diagnosis of myalgic encephalomyelitis (ME/CFS) in research and clinical practice has largely relied on clinical history, which can be subjective in nature. Clinical signs are often subtle, overlap with other conditions, and are not formally included as part of diagnostic workup. The characterisation of clinical signs and biomarkers is needed for better diagnosis and classification of patients and to monitor treatment response.

Hand grip strength (HGS) has been used as an objective measure of muscle strength and fatigue, which is a primary symptom of ME/CFS. We assessed the potential usefulness of HGS as a diagnostic marker in ME/CFS.

Methods:
We compared HGS measurements from participants in the UK ME/CFS Biobank, with groups consisting of people with ME/CFS of differing severity (n=272), healthy (n=136), multiple sclerosis (n=76) controls, and others with chronic fatigue not meeting the diagnosis of ME/CFS (n=37). We correlated the maximum and minimum of, and differences between, 3 repeated HGS measurements with parameters of disease severity, including fatigue and pain analog scales, and physical and mental component summaries from the SF-36v2TM questionnaire across recruitment groups.

Results:
HGS indicators were associated with having ME/CFS, with magnitudes of association stronger in severely affected than in mild/moderately affected patients. Compared with healthy controls, being severely affected was associated with a reduction in minimum HGS of 15.3kg (95%CI 19.3-11.3; p<0.001), while being mild/moderately affected was associated with a 10.5kg (95%CI 13.2-7.8; p<0.001) reduction. The association persisted after adjusting for age, sex and body mass index. ME/CFS cases also showed lower values of maximum HGS and significant drops in values from the first to second and third trials, compared to other study groups. There were significant correlations between HGS indicators and clinical parameters of disease severity, including fatigue analog scale
(Spearman’s Rho= -0.40, p<0.001), pain analog scale (Rho=-0.38, p<0.001), and physical component summary (Rho=0.42, p<0.001).

Discussion:
HGS is markedly reduced in ME/CFS, particularly in patients with more severe disease, and may indicate muscle and fatigue related symptoms.

HGS is a potential diagnostic tool in ME/CFS, and could also be used to enhance patient phenotyping and as an outcome measure following interventions.

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Stress management course Swansea begins 15 Nov 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

Swansea

  • Swansea YMCA, 1 The Kingsway, Swansea SA1 5JQ
  • Room: Theatre
  • Thurs 15 Nov – 20 Dec 2018    2-3.30 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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DBC Universal Credit survey – your experiences needed

Universal Credit survey launched!      

October 31, 2018

The  Disability Benefits Consortium has launched a Universal Credit survey  #UCandme so that we can find out more about the experiences of disabled people and people with long term health conditions. [WAMES is a member of the DBC]

Universal Credit is a new benefit which is being introduced in the UK. It will replace 6 benefits including Employment and Support Allowance.

It will affect hundreds of thousands of disabled people across the country.

Universal Credit has been in the news a lot recently as there are concerns about how it is being rolled out and the amount of money people will receive.

Take our Universal Credit Survey
If you have applied for Universal Credit or tried to apply – we want to hear from you!

By adding your voice, you’ll join thousands of other disabled people and people with long-term health conditions in helping us lobby the Government and campaign for a fairer benefits system.

Please share as widely as possible and promote on social media using: #UCandme

If you would like to complete the survey over the phone please contact  Rony Erez on 020 3828 6850. For other alternative formats, please contact us

The survey should take up to 20 minutes to complete. In order for us to understand your experience of the whole process of applying for UC, it is best completed once you have gone through your application and know the outcome.

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CWTCH event in Tesco Haverfordwest, 14 Nov 2018 – Walk in my shoes

WIMS – Walk in my shoes – CWTCH event in Tesco

CWTCH will be presenting their Symptom Suit at Tesco in Haverfordwest SA61 1BU on  Wednesday  14th November 2018, 10-4 pm.

Volunteers will wear the suit AND walk for 30 minutes on a treadmill.  The suit helps to explain what it feels like to live with a chronic illness, in particular hidden symptoms. It is filled with weights, itchy fabric etc.

In October Stephen Crabb MP wore the symptom suit.

More about the WIMS campaign

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