Cyfarchion flwyddyn newydd gan WAMES

 Cyfarchion flwyddyn newydd gan y tîm WAMES.Rydym yn gobeithio y byddwch yn cael y Nadolig i chi ei angen ac rydym yn dymuno iachach, hapusach , yn ddiogel ac yn sych 2016 i chi!
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Helpu tyfu ymwybyddiaeth ME yn yr iaith Gymraeg ar-lein

Help ar gael i greu a rhannu newyddion digidol y Gymraeg

Dros y chwe mis nesaf fe fydd Canolfan Newyddiaduraeth Gymunedol Prifysgol Caerdydd yn cynnal ymgyrch i helpu unrhyw un sydd am greu a rhannu newyddion a gwybodaeth amserol yn ddigidol trwy gyfrwng y Gymraeg.

Bydd pytiau pwrpasol ar gael yn gyson ar ddefnyddio rhwydweithiau cymdeithasol poblogaidd megis Facebook a Twitter; gwybodaeth am ddeunyddiau digidol sydd wedi eu creu yn benodol ar gyfer y Gymraeg; a chanllawiau mwy eang ar sut i fynd ati i sefydlu gwefannau a newyddion cymunedol yn Gymraeg.

Dan nawdd Llywodraeth Cymru, fe fyddwn hefyd yn cynnal hyfforddiant am ddim mewn sawl lleoliad ac yn creu pecynnau gam-wrth-gam yn gymorth i newyddiadurwyr cymunedol ac eraill sydd am greu a rhannu eu newyddion yn fwy effeithiol.

Rydym yn awyddus i sicrhau fod gymaint ├ó phosib o bobl yn gwybod am, ac yn defnyddio, yr adnodd newydd ac yn cael cyfle i gael eu hyfforddi a’u mentora – boed yr unigolyn, grwp gwirfoddol neu gorff.

Os oes gennych gysylltiadau o fewn cymunedau Cymraeg rhannwch y tudalennau canlynol i helpu i dyfu iaith Cymraeg ar-lein.

WAMES is looking for Welsh speakers to join our communications team. We will support volunteers who wish to join us, but need training.

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What do you think of the Government’s ME/CFS services action plan?

The Health Minister, Mark Drakeford, has written to Local Health Boards drawing their attention to the Government’s Action Plan for improving services for people with ME, CFS and Fibromyalgia in Wales. Read it in English or Welsh.

[poll id=”9″]

Email us or leave a comment below if you have any comments or questions about this poll.

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Welsh news blog temporarily suspended

Apologies but we don’t have a Welsh speaking volunteer to update this blog so please keep up to date on the English blog

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Diweddariad ar gyfer Gr┼Áp Gorchwyl a Gorffen ME/CFS

WAMES took part in the 2nd Welsh Government Task & Finish Group meeting for ME/CFS on 21st February. The Terms of Reference for the group were confirmed as:

The Task and Finish Group will provide expert advice to the Welsh Government and NHS Wales. Advice should constitute a strategic approach to improving services for people with ME/CFS and Fibromyalgia in Wales, with the aim that:

  • All children and adults with ME/CFS and Fibromyalgia should be treated with dignity and respect and receive support on an equal basis with people receiving support for any other long term health condition, both in primary care and when accessing support from a range of secondary services
  • NHS Wales should be equipped to support patients to manage their conditions (insofar as possible), using effective and evidence based interventions (where available)
  • A consistent level of support should be provided across Wales, eliminating the ÔÇśpostcode lotteryÔÇÖ and over-reliance on a small number of individuals with an interest in these conditions

The group was told by the Health Minister that there would be NO additional money to develop services and that all services should follow the principles of prudent healthcare.

The Group will provide a short report and make recommendations to the Minister in the following areas:

  • Implementation of the pathways recommended by the original ME/CFS and Fibromyalgia Task and Finish Group
  • Raising GP awareness of ME/CFS and Fibromyalgia, to support timely diagnosis and effective management
  • Identifying/appointing clinical champions in each local health board and a ÔÇśhomeÔÇÖ for these services; this coordinating role could be taken by any one of a range of specialities but should not be located within mental health services
  • Establishing stakeholder groups to implement and adapt pathways in a locally sensitive way
  • Identifying and implementing improvements to services for children and young people and ensuring effective transition from paediatric to adult services
  • Developing and implementing practical solutions for hospital attendance where required and for domiciliary or remote care for patients too ill to travel to appointments
  • Any requirements for additional guidance for training purposes, to raise standards, to support action-planning in health boards and to enable audit of service delivery
  • Mechanisms to support implementation of the recommendations

Subject to Ministerial agreement, recommendations would result in letters to Chief Executives of Health Boards, asking them to implement the recommendations. It is proposed that progress in delivery would be supported and monitored by an Implementation Group.

The third and probably final meeting of the Group will take place on 9 May.

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Autoimmune basis for Postural Tachycardia Syndrome

Abstract

BACKGROUND

Patients with postural tachycardia syndrome (POTS) have exaggerated orthostatic tachycardia often following a viral illness, suggesting autoimmunity may play a pathophysiological role in POTS. We tested the hypothesis that they harbor functional autoantibodies to adrenergic receptors (AR).

METHODS AND RESULTS

Fourteen POTS patients (7 each from 2 institutions) and 10 healthy subjects were examined for ╬▒1AR autoantibodyÔÇÉmediated contractility using a perfused rat cremaster arteriole assay. A receptorÔÇÉtransfected cellÔÇÉbased assay was used to detect the presence of ╬▓1AR and ╬▓2AR autoantibodies. Data were normalized and expressed as a percentage of baseline.

The sera of all 14 POTS patients demonstrated significant arteriolar contractile activity (69┬▒3% compared to 91┬▒1% of baseline for healthy controls, P<0.001) when coexisting ╬▓2AR dilative activity was blocked; and this was suppressed by ╬▒1AR blockade with prazosin.

POTS sera acted as a partial ╬▒1AR antagonist significantly shifting phenylephrine contractility curves to the right. All POTS sera increased ╬▓1AR activation (130┬▒3% of baseline, P<0.01) and a subset had increased ╬▓2AR activity versus healthy subjects. POTS sera shifted isoproterenol cAMP response curves to the left, consistent with enhanced ╬▓1AR and ╬▓2AR agonist activity. AutoantibodyÔÇÉpositive POTS sera demonstrated specific binding to ╬▓1AR, ╬▓2AR, and ╬▒1AR in transfected cells.

CONCLUSIONS

POTS patients have elevated ╬▒1AR autoantibodies exerting a partial peripheral antagonist effect resulting in a compensatory sympathoneural activation of ╬▒1AR for vasoconstriction and concurrent ╬▓ARÔÇÉmediated tachycardia. Coexisting ╬▓1AR and ╬▓2AR agonistic autoantibodies facilitate this tachycardia. These findings may explain the increased standing plasma norepinephrine and excessive tachycardia observed in many POTS patients.

Autoimmune Basis for Postural Tachycardia Syndrome, by Hongliang Li et al in Journal of the American Heart Association, 26 February 2014

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WAMES CCB 1 Ebrill

The WAMES AGM will take place on 1st April in Dinas Powys. This will be a short business meeting to report on the activities of the past year and plan the priorities for the coming year.

Contact Jan if you have any comments about WAMES or issues you would like the committee to consider.

The post of secretary will become vacant following the AGM and we would love to hear from anyone who thinks they might be interested, as this post is vital for the smooth running of WAMES. More info

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Irlen syndrome and vision problems in CFS/ME

Abstract

This study investigated the biological basis of visual processing disabilities in adults with Chronic Fatigue Syndrome. The study involved 61 adults with symptoms of Chronic Fatigue Syndrome who were screened for visual processing problems (Irlen Syndrome) and divided into two groups according to the severity of symptoms of Irlen Syndrome.

Significant variations were identified in blood lipids and urine amino and organic acids of the two groups, which may be indicative of activation of the immune system due to some infective agent. It was suggested that metabolic profiling may help the development of more valid diagnostic categories and allow more investigation of immune system dysfunction as a possible causal factor in a range of learning and behaviour disorders.

A biochemical analysis of people with chronic fatigue who have Irlen Syndrome: speculation concerning immune system dysfunction. GL Robinson et al Percept Mot Skills 2001 Oct;93(2):486-504.

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The role of the HPA-axis in adolescent CFS

Abstract

BACKGROUND: There is accumulating evidence of hypothalamic-pituitary-adrenal (HPA) axis hypofunction in chronic fatigue syndrome (CFS). However, knowledge of this hypofunction has so far come exclusively from research in adulthood, and its clinical significance remains unclear. The objective of the current study was to assess the role of the HPA-axis in adolescent CFS and recovery from adolescent CFS.

METHOD: Before treatment, we compared the salivary cortisol awakening response of 108 diagnosed adolescent CFS patients with that of a reference group of 38 healthy peers. Salivary cortisol awakening response was measured again after 6 months of treatment in CFS patients.

RESULTS: Pre-treatment salivary cortisol levels were significantly lower in CFS-patients than in healthy controls. After treatment recovered patients had a significant rise in salivary cortisol output attaining normalization, whereas non-recovered patients improved slightly, but not significantly. The hypocortisolism found in CFS-patients was significantly correlated to the amount of sleep.

Logistic regression analysis showed that an increase of one standard deviation in the difference between pre- and post-treatment salivary cortisol awakening response was associated with a 93% higher odds of recovery (adjusted OR 1.93 (1.18 to 3.17), p=0.009). Pre-treatment salivary cortisol did not predict recovery.

CONCLUSIONS: Hypocortisolism is associated with adolescent CFS. It is not pre-treatment cortisol but its change to normalization that is associated with treatment success. We suggest that this finding may have clinical implications regarding the adaptation of future treatment strategies.

The role of hypocortisolism in chronic fatigue syndrome by SL Nijhof, JM Rutten, CS Uiterwaal, G Bleijenberg, JL Kimpen, EM Putte in Psychoneuroendocrinology. 2014 Apr; 42:199-206.

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Immune dysregulation in CFS similar to autoimmune disorders

Abstract

Perturbations in immune processes are a hallmark of a number of autoimmune and inflammatory disorders.

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is an inflammatory disorder with possible autoimmune correlates, characterized by reduced NK cell activity, elevations in regulatory T cells (Tregs) and dysregulation in cytokine levels.

The purpose of this article is to examine innate and adaptive immune cell phenotypes and functional characteristics that have not been previously examined in CFS/ME patients.

Thirty patients with CFS/ME and 25 non-fatigued controls were recruited for this study.

Whole blood samples were collected from all participants for the assessment of cell phenotypes, functional properties, receptors, adhesion molecules, antigens and intracellular proteins using flow cytometric protocols.

The cells investigated included NK cells, dendritic cells, neutrophils, B cells, T cells, gamma deltaT cells and Tregs.

Significant changes were observed in B-cell subsets, Tregs, CD4+CD73+CD39+ T cells, cytotoxic activity, granzyme B, neutrophil antigens, TNF-alfa ÔÇô and IFN-gamma in the CFS/ME patients in comparison with the non-fatigued controls.

Alterations in B cells, Tregs, NK cells and neutrophils suggest significant impairments in immune regulation in CFS/ME and these may have similarities to a number of autoimmune disorders.

Role of adaptive and innate immune cells in chronic fatigue syndrome/myalgic encephalomyelitis by EW Brenu et al in International Immunology, 19 January 2014.[Epub ahead of print]

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