Wayne Diggy Duignan from Pembrokeshire will be riding the Merlin 105 mile bike race on June 30th to raise funds for WAMES. Check out
If you would like to sponsor this epic effort, please contact Sharon Price who will put you in touch with him.
Merlin Bike reid codi arian 30 Mehefin
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Tagged codi arian, Diggy Duignan, fundraising, Merlin bike reid
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Flu vaccination alters gene expression in CFS
Research abstract
Vaccines have been shown to cause differential expression of genes and increase antibody titers against antigens.
Influenza vaccines may have an effect on unexplained disorders such as Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Immunological changes have been identified following immunization with trivalent influenza vaccine (TIV).
The objective of this pilot study was to examine the consequences of TIV on cytokine and cytotoxic genes in CFS/ME.
Peripheral blood mononuclear cells were preferentially isolated from whole blood of 7 CFS/ME patients and 8 controls. Following total RNA extraction and synthesis of cDNA, reverse transcriptase-quantitative polymerase chain reaction (RT-qPCR) was used to determine the expression levels of mRNAs for cytotoxic genes (perforin (PRF1), granzyme A (GZMA), granzyme B (GZMB) and cytokine genes.
GZMB was significantly increased overall in the CFS/ME patients compared to the controls. GZMA was significantly increased 28 days after vaccination while PRF1 was reduced prevaccination but increased 14 days post-vaccination in the CFS/ME patients. There were no significant changes in cytokine genes pre or post vaccination.
Administration of TIV may increase the expression of lytic genes in CFS/ME and this may contribute to the increase in cytotoxic activity we observed in these patients post vaccination.
Enhanced Gene Expression Following Vaccination in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis by Ekua W. Brenu et al International Journal of Clinical Medicine, March 2013
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Tagged cytokines, cytotoxic activity, gene expression, vaccination
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Newidiadau Budd-daliadau Lles Sioe Deithiol 25 Mehefin
Free events are being held for disabled people and their families to help you understand the changes to welfare benefits and know your rights:
- Tuesday 25 June 2013 Bangor
- Wednesday 3 July Newport FULLY BOOKED
- Thursday 18 July Newtown
The events will provide:
- an overview of changes to welfare benefits
- Personal Independence Payment
- Employment Support Allowance and the Work Capability Assessment
- Housing Benefit changes
- Information about your rights and how to use them. Get your copy of “Know Your Rights, Use Your Rights, Live Your Rights”
- Opportunity to discuss your views and experience
These events are provided by Disability Wales, in partnership with Learning Disability Wales and All Wales People First.
Book now to avoid disappointment! Limited places left.
For further details please contact Inacia.rodrigues@learningdisabilitywales.org.uk
Posted in Newyddion
Tagged Anabledd Cymru, Benefits, Budd-daliadau, Disability Wales
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Llais Niwrolegol Gweithiwr datblygu hysbyseb swydd – canolbarth Cymru
Hysbyseb Swydd – Gweithiwr Datblygu wedi’i leoli yn y Drenewydd, Powys
Prosiect 4 blynedd, rhan-amser 10 awr yr wythnos
Cyflog £6,773.71 yf (£23,708 pro rata)
Cyfle i weithio gyda MANGO (Cynghrair Grwpiau a Mudiadau Niwrolegol Sir Drefaldwyn) o dan brosiect Powys yn Un – Cysylltu Lleisiau.
Byddwch yn galluogi pobl sydd â chyflyrau niwrolegol trwy Bowys gyfan i gael llais cryf ac effeithiol. Byddwch yn gweithio’n agos gydag unigolion yn ogystal â grwpiau a sefydliadau statudol ar draws y sir, gyda’r nod o ddeall a hyrwyddo’r hyn sydd ei angen ar unigolion i wella gwasanaethau, mynediad at wasanaethau, ac ansawdd bywyd gwell.
Byddwch yn meddu ar
• Sgiliau cyfathrebu gwych;
• Sgiliau TGCh da.
• Y gallu i greu perthynas gyda phobl ar bob lefel
• Sgiliau cyflwyno a gwaith grŵp
Byddwch yn
• Gryf eich cymhelliad, yn hyblyg, yn gallu teithio, ac yn drefnus
Byddai profiad o, a gwybodaeth am oblygiadau byw gyda chyflwr meddygol cronig yn fantais.
Byddai’r gallu i gyfathrebu yn Gymraeg yn fantais.
Dyddiad cau: 8fed Gorffennaf 2013
Cynhelir cyfweliadau ar 16eg Gorffennaf 2013, pan fydd gofyn i chi roi cyflwyniad 10 munud a baratowyd ymlaen llaw, yn ogystal â chael cyfweliad ffurfiol.
Ceir pecyn cais drwy ffonio 01686 621537 neu e-bostio: lisa.banfield@pavo.org.uk
Cymdeithas Mudiadau Gwirfoddol Powys
Ariennir y swydd hon trwy’r Gronfa Loteri Fawr.
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Tagged Cynghrair Niwrolegol, MANGO, Sir Drefaldwyn
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Rhesymau ar gyfer profiadau gwael o therapïau adsefydlu
Review abstract
Purpose:Â First, to explore the experiences of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) of rehabilitation therapies so as to build an understanding of reasons for the discrepancy between the notably mixed experiences regarding effectiveness reported in patient surveys and the RCT evidence about the efficacy of Graded Exercise Therapy (GET). GET is a form of structured and supervised activity management that aims for gradual but progressive increases in physical activity. Second, to review patient experiences of two related rehabilitation approaches, Exercise on Prescription (EoP) and Graded Activity Therapy (GAT).
Method:Â An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008, examined using thematic analysis.
Results:Â Both positive and negative experiences of rehabilitation were reported. Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise. Negative themes included poor communication, feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working.
 Conclusions: The negative themes may help explain the negative outcomes from rehabilitation reported by previous patient surveys. The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline advice regarding GET, indicating that some clinical encounters were not implementing these. These findings suggest areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME.
Implications for rehabilitation:
The insensitive delivery of rehabilitation support for people with CFS/ME can explain negative outcomes reported in patient surveys. Therapist-patient collaboration, establishing a sustainable baseline and agreeing a setback plan are all examples of higher quality rehabilitation indicated by this research.
Greater awareness of the positive and negative experiences of rehabilitation therapies should enable avoidance of the potential pitfalls identified in this research.
Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing. By contrast, factors leading to negative experiences include poor communication and support, conflict in beliefs about CFS/ME and rehabilitation, pressure to comply with treatment, worsening of symptoms, baselines experienced as unsustainable, and feeling blamed for rehabilitation not working.
Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. PW Gladwell, D Pheby, T Rodriguez, F Poland  Disability and Rehabilitation, 4 June 2013 [Epub ahead of print]
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Tagged adsefydlu, GET, graded activity therapy, graded exercise therapy, rehabilitation
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Dysfunction mitochondrial yn wahanol yn CFS ac FM
Research abstract
Chronic fatigue syndrome (CFS) and fibromyalgia (FM) are complex and serious illnesses that affect approximately 2.5% and 5% of the general population worldwide, respectively. The etiology is unknown; however, recent studies suggest that mitochondrial dysfunction has been involved in the pathophysiology of both conditions.
We have investigated the possible association between mitochondrial biogenesis and oxidative stress in patients with CFS and FM. We studied 23 CFS patients, 20 FM patients, and 15 healthy controls.
Peripheral blood mononuclear cell showed decreased levels of Coenzyme Q10 from CFS patients (p<0.001 compared with controls) and from FM subjects (p<0.001 compared with controls) and ATP levels for CFS patients (p<0.001 compared with controls) and for FM subjects (p<0.001 compared with controls).
On the contrary, CFS/FM patients had significantly increased levels of lipid peroxidation, respectively (p<0.001 for both CFS and FM patients with regard to controls) that were indicative of oxidative stress-induced damage.
Mitochondrial citrate synthase activity was significantly lower in FM patients (p<0.001) and, however, in CFS, it resulted in similar levels than controls. Mitochondrial DNA content (mtDNA/gDNA ratio) was normal in CFS and reduced in FM patients versus healthy controls, respectively (p<0.001). Expression levels of peroxisome proliferator-activated receptor gamma-coactivator 1-alpha and transcription factor A, mitochondrial by immunoblotting were significantly lower in FM patients (p<0.001) and were normal in CFS subjects compared with healthy controls.
These data lead to the hypothesis that mitochondrial dysfunction-dependent events could be a marker of differentiation between CFS and FM, indicating the mitochondria as a new potential therapeutic target for these conditions.
Could Mitochondrial Dysfunction Be a Differentiating Marker Between Chronic Fatigue Syndrome and Fibromyalgia? J Castro-Marrero et al  Antioxidants and Redox Signalling, 29 May 2013. [Epub ahead of print]
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Tagged Dysfunction mitochondrial, Fibromyalgia, FM, oxidative stress
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Adolygiad o is-grwpiau yn CFS
Review abstract
We have been able to reduce substantially patient pool heterogeneity by identifying phenotypic markers that allow the researcher to stratify chronic fatigue syndrome (CFS) patients into subgroups.
To date, we have shown that stratifying based on the presence or absence of comorbid psychiatric diagnosis leads to a group with evidence of neurological dysfunction across a number of spheres.
We have also found that stratifying based on the presence or absence of comorbid fibromyalgia leads to information that would not have been found on analyzing the entire, unstratified patient group.
Objective evidence of orthostatic intolerance (OI) may be another important variable for stratification and may define a group with episodic cerebral hypoxia leading to symptoms.
We hope that this review will encourage other researchers to collect data on discrete phenotypes in CFS to allow this work to continue more broadly. Finding subgroups of CFS suggests different underlying pathophysiological processes responsible for the symptoms seen. Understanding those processes is the first step toward developing discrete treatments for each.
Brain dysfunction as one cause of CFS symptoms including difficulty with attention and concentration  Benjamin H. Natelson Front Physiol. 2013; 4: 109
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Tagged dysfunction niwrolegol, dysfunction yr ymennydd, is-grwpiau, orthsotatic intolerance, OT
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Problemau gwybyddol a poen nad ydynt yn gysylltiedig yn CFS
Research Abstract
In various chronic pain populations, decreased cognitive performance is known to be related to pain severity. Yet, this relationship has not been investigated in patients with chronic fatigue syndrome (CFS). This study investigated the relationship between cognitive performance and (1) pain severity, (2) level of fatigue, and (3) self-reported symptoms and health status in women with CFS. Examining the latter relationships is important for clinical practice, since people with CFS are often suspected to exaggerate their symptoms.
A sample of 29 female CFS patients and 17 healthy controls aged 18 to 45 years filled out three questionnaires (Medical Outcomes Study 36-Item Short-Form Health Survey, Checklist Individual Strength (CIS), and CFS Symptom List) and performed three performance-based cognitive tests (psychomotor vigilance task, Stroop task, and operation span task), respectively.
In both groups, pain severity was not associated with cognitive performance. In CFS patients, the level of fatigue measured with the CFS Symptom List, but not with the CIS, was significantly correlated with sustained attention. Self-reported mental health was negatively correlated with all investigated cognitive domains in the CFS group.
These results provide evidence for the clinical importance of objectively measured cognitive problems in female CFS patients. Furthermore, a state-like measure (CFS Symptom List) appears to be superior over a trait-like measure (CIS) in representing cognitive fatigue in people with CFS. Finally, the lack of a significant relationship between cognitive performance and self-reported pain severity suggests that pain in CFS might be unique.
Cognitive performance is of clinical importance, but is unrelated to pain severity in women with chronic fatigue syndrome. K Ickmans et al  Clin Rheumatol. 2013 Jun 5. [Epub ahead of print]
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Tagged poen, problemau gwybyddol
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T & NK cell screening is a possible biomarker for CFS
Research abstract
Background: Chronic Fatigue Syndrome (CFS) is a debilitating neuro-immune disorder of unknown etiology diagnosed by an array of clinical manifestations. Although several immunological abnormalities have been described in CFS, their heterogeneity has limited diagnostic applicability.
Methods: Immunological features of CFS were screened in 22 CFS diagnosed individuals fulfilling Fukuda criteria and 30 control healthy individuals. Peripheral blood T, B and NK cell function and phenotype were analyzed by flow cytometry in both groups.
Results: CFS diagnosed individuals showed similar absolute numbers of T, B and NK cells, with minor differences in the percentage of CD4+ and CD8+ T cells. B cells showed similar subset frequencies and proliferative responses between groups. Conversely, significant differences were observed in T cell subsets. CFS individuals showed increased levels of T regulatory cells (CD25+/FOXP3+) CD4 T cells, and lower proliferative responses in vitro and in vivo. Moreover, CD8 T cells from the CFS group showed significantly lower activation and frequency of effector memory cells. No clear signs of T-cell immunosenescence were observed. NK cells from CFS individuals displayed higher expression of NKp46 and CD69 but lower expression of CD25 in all NK subsets defined. Overall, T cell and NK cell features clearly clustered CFS individuals.
Conclusions: Our findings suggest that alterations in T-cell phenotype and proliferative response along with the specific signature of NK cell phenotype may be useful to identify CFS individuals. The striking down modulation of T cell mediated immunity may help to understand intercurrent viral infections in CFS.
Screening NK-, B- and T-cell phenotype and function in patients suffering from Chronic Fatigue Syndrome. M Curriu et al Journal of Translational Medicine, 20th March 2013
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Tagged B-cell, immunological dysfunction, NK-cell, T-cell
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Prepared to care? Carers week 2013 survey
As part of Carers week (10-16 June) UK charities asked carers to describe the impact caring had had on their lives. The results were published in the Prepared to Care? report
Key findings
- 7 out of 10 (75%) carers were not prepared for all aspects of caring.
- 8 out 10 (81%) carers were not prepared for the emotional impact of caring.
- 8 out of 10 (78%) carers were not prepared for changes to their lifestyle because of a caring role.
- 7 out of 10 (71%) carers were not prepared for the change in relationship with the person they care for.
- Just under two-thirds (63%) of carers were not prepared for the impact caring had on their career.
- 7 out of 10 (72%) carers were not prepared for the financial impact of their caring role.
Relationships
- 2 out of 5 (42 per cent) carers had had a breakdown in a relationship with a family member.
- 2 out of 5 (43 per cent) carers have seen their relationship improve with the person they care for.
- 6 in 10 (61 per cent) carers have found it difficult to maintain friendships.
Career
- Nearly half (45%) of carers that responded to our survey have given up work because of their caring role.
- 2 out of 5 (42 %) carers have reduced working hours because of their caring role.
- A third (34%) of carers have missed out on the chance of a promotion
Finances
- 6 out of 10 (60 per cent) carers have had a reduction in income because of their caring role.
- A quarter (26%) of carers have taken out a loan or fallen into debt because of their caring role.
- A quarter (26%) of carers have taken out a loan or fallen into debt because of their caring role.
- Half (49%) of carers have used savings to buy essentials such as heating and food.
Health and well-being
- 7 out of 10 (72%) carers have had to reduce the amount of exercise that they take.
- 6 out of 10 (61%) carers have suffered from depression because of their caring role.
- 9out of 10 (92%) carers feel more stressed because of their caring role
Support, advice and information
- 8 out of 10 (81%) carers were not aware of the support available because of the timeit took them to identify themselves as carers.
- A third (35%) of carers were given the wrong advice about support available because ofthe time it took them to identify themselves as carers.
- Half (46%) of carers that responded to our survey had been offered a Carer’s Assessment.
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Tagged carers, carers week
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