Wythnos Ymwybyddiaeth BackCare, 7-11 Hydref 2013

Posted on October 9, 2013 by wames

This year’s campaign is ‘Caring for Carers’.

Carers provide invaluable help and assistance to their children, friends, relatives, and partners, but what happens when their work leads to back pain, compromising their ability to care?

Back pain is endemic among carers: a 2011 survey found that 70% of carers experienced back and shoulder pain. This issue seriously affects the quality of life of those who should be most valued in our society, as well as impacting on their caregiving work. More information can be found from the Backcare Charity.

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Cynorthwyo i werthuso gwasanaethau cleifion a gofalwyr yn ardal Gorseinon

Posted on October 9, 2013 by wames

Community Voice Patient and Carer Open Day

Are you a Patient or Carer?    Registered with:

Ty’r Felin Surgery, Pen Y Bryn Surgery, Tal Y Bont Surgery, Gowerton Medical Centre, Penclawdd Surgery or Princess Street Surgery?   (Llwchwr Community Network)

Help evaluate patient and carer services in your area on Friday 11th October 2013, 1.00 – 7.00pm, Canolfan Gorseinon, Millers Drive, Gorseinon, Swansea, SA4 4QN.

  • Get your voice heard by local service providers such as health, social services and the voluntary sector
  • Learn about what services are available locally
  • Contribute to the work of the Healthy City Programme

Help is available with respite/child care; travel expenses; interpretation or personal assistance costs if you would like to attend meetings.

If you would like more information about the 4 year project or to attend the day, please confirm with: Cara Spowart, Community Voice Patient and Carer Development Officer, SCVS on 01792 544013 or email: cara_spowart@scvs.org.uk

(The Swansea Healthy Cities Community Voice portfolio will be delivered by seven partners. The portfolio is funded by the Big Lottery Fund and the grant administered by SCVS.)

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Arolwg gwrth-fwlio gan Barnardo’s Cymru

Posted on October 9, 2013 by wames

Mae Barnardo’s Cymru yn poeni am faint o fwlio mae plant a phobl ifanc yn ei brofi ac yn ei weld o’u cwmpas. Maent eisiau dangos i Lywodraeth Cymru faint o fwlio sy’n digwydd.

Os ydych wedi dioddef, neu wyt ti wedi gweld plant yn cael eu bwlio gan eu bod nhw’n anabl neu eu bod nhw’n cael cymorth dysgu yn yr ysgol, gan eu bod nhw’n hoyw neu’n ddeurywiol (bisexual), (neu gan fod pobl yn meddwl eu bod nhw’n hoyw neu’n ddeurywiol, yn cael eu bwlio oherwydd lliw eu croen, eu crefydd, neu’r wlad maen nhw wedi’i geni ynddi, cwblhewch holiadur byr ar-lein neu yn y papur.

Dychwelyd i Elaine Speyer, Ymchwil a chynorthwy-ydd polisi, 19-20 London Road, Castell-nedd SA11 1LF gan 1 Tachwedd.

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Mae aciwbigo yn gymharol ddefnyddiol o ran CFS

Posted on September 25, 2013 by wames

Research abstract

CONTEXT:

Given that the etiology of chronic fatigue syndrome (CFS) is believed to be multidimensional, interventions generally have been nonspecific and typically produce only mild to moderate effects. In medical practice, treatment for CFS remains largely symptomatic. Preliminary evidence of the efficacy of acupuncture for CFS is available, but the field has lacked high-quality trials.

OBJECTIVE:

The research team conducted the study to determine the efficacy of acupuncture for CFS.

DESIGN:

A two-arm, randomized, controlled, singleblinded design was adopted.

SETTING:

The study took place in a teaching laboratory at the School of Chinese Medicine at the University of Hong Kong, Hong Kong, China.

PARTICIPANTS:

Recruited through press publicity in Hong Kong, 127 individuals–40 men and 87 women–participated in the study. Intervention Through careful implementation of sham acupuncture in the control group (CG), the study blinded all participants with regard to their experimental or control status. The treatment regime was 2 sessions/wk for 4 consecutive wk.

OUTCOME MEASURES:

Measures of fatigue (Chalder’s Fatigue Scale), health-related quality of life (SF-12), and general mental health (GH Q-12) were taken at baseline and upon completion of treatment.

RESULTS:

Ninety-nine participants completed the interventions, with 50 and 49 participants in the experimental group (EG) and CG respectively. Repeated measures ANOVA revealed a significant decrease in physical (F(1,93) = 4.327; P = .040) and mental fatigue (F(1,96) = 10.451; P = .002) and improvement in the physical component score of SF-12 (F(1,93) = 4.774; P = .031). Considerable effects with Cohen’s d were observed in the sham-control group: 0.92, 0.78, and 0.38 for the three scores, respectively. These positive effects could have included some therapeutic effects due to pressure on the acupuncture points from the sham needles in addition to normal placebo effects. The EG showed moderate net effect sizes with Cohen’s d: 0.52, 0.63, and 0.54 for the three outcome measures, respectively.

CONCLUSION:

Despite considerable positive effects for the CG, the EG demonstrated significant net-effect sizes at a moderate magnitude in physical and mental fatigue and in the physical component of health-related quality of life. The impacts on general mental health outcomes appeared to be smaller.

Acupuncture for chronic fatigue syndrome: a randomized, sham-controlled trial with single-blinded design.  Ng SM, Yiu YM in Altern Ther Health Med. 2013 Jul-Aug;19(4):21-6.

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Sut i wella perthynas therapiwtig mewn ME / CFS

Posted on September 25, 2013 by wames

Abstract

Background: Clinical practice and the medical literature abound with reports of mutual dissatisfaction between individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and health care practitioners.

Purpose:

In this paper we:

1) formulate and describe the common therapeutic challenges in the care of patients with ME/CFS and

2) present a patient-centered, collaborative practice model that may mitigate these challenges.

Method:

We have combined clinical experience with hundreds of patients, a thorough review of the medical and psychotherapy literature and comments from patients and colleagues to arrive at our proposed practice model.

Findings and Discussion:

We have identified six common therapeutic challenges listed below. From our experience and the psychotherapy literature we have identified a relatively simple patient-centered intervention for each therapeutic challenge. These interventions are recommended for health care practitioners who find themselves in difficulty while working with patients with ME/CFS.

  1. Disagreement about the validity and severity of ME/CFS – Validate the patient’s experience and openly discuss differences of opinion.
  2. Disagreement about the etiology and best management of ME/CFS – Find and validate the truth in the patient’s position.
  3. Frustration due to lack of improvement – Collaboratively search for hope.
  4. Altered power balance between practitioner and patient – Clarify and increase practitioner expertise.
  5. Working with patients who feel unheard – Listen to the whole story.
  6. Gap between needed and available services – Build a coalition to access needed services.

Conclusions:

Therapeutic relationships with patients with ME/CFS can be rewarding and enjoyable. The interventions highlighted in this paper may assist practitioners who feel otherwise.

Improving the therapeutic relationships between patients with ME/CFS and health care practitioners  Eleanor Stein MD, FRCP(C), Eva Stormorken RN, CRNA, MNSc, Bengt Karlsson RN

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Datgelu cynllun ar gyfer hyrwyddo byw’n annibynnol yng Nghymru

Posted on September 23, 2013 by wames

Mae Llywodraeth Cymru wedi datgelu gynlluniau a fydd yn ceisio chwalu’r rhwystrau y mae pobl anabl yng Nghymru yn eu hwynebu.

Mae’r fframwaith gweithredu ar gyfer byw’n annibynnol yn disgrifio’r camau y bydd Llywodraeth Cymru yn eu cymryd er mwyn sicrhau y gall pobl anabl fanteisio ar wasanaethau a chyfleoedd yn yr un modd â gweddill y gymdeithas.

Dyma’r cynllun Cymreig cyntaf o’i fath sy’n ymwneud ag anabledd ac mae’n dwyn ynghyd faterion yr arferai’r llywodraeth ymdrin â hwy ar wahân. Cyfrannodd pobl anabl a sefydliadau ar gyfer pobl anabl at holl gamau llunio’r cynllun.

Mae’r fframwaith yn disgrifio gweledigaeth bositif ar gyfer pobl anabl er gwaethaf y ffaith nad yw’r economi’n rhy lewyrchus ac er gwaethaf y newidiadau i’r system les a thoriadau mewn gwariant cyhoeddus.

Mae mesurau’r cynllun yn cynnwys:

  • Cynyddu nifer y bobl anabl a all ddefnyddio’r Rhyngrwyd.
  • Atgyfnerthu hawliau pobl ag anableddau dysgu o safbwynt tenantiaeth.
  • Cydweithio â’r GIG, cynghorau a’r trydydd sector fel y gall yr holl wasanaethau, gofal a chymorth neu gymaint â phosibl ohonynt gael eu darparu yn y cartref neu mor agos â phosibl ato.
  • Rhoi rhagor o lais i grwpiau anabledd ar lefel strategol drwy sefydlu paneli annibynnol ar gyfer defnyddwyr a gofalwyr.
  • Ei gwneud hi’n haws i bobl anabl ddefnyddio trafnidiaeth gyhoeddus, gan gynnwys hybu safonau uwch o safbwynt hyfforddiant ar gyfer gyrwyr a’r cerbydau sydd ar gael.
  • Datblygu Siarter ar gyfer Teithwyr Anabl ar Drafnidiaeth Gyhoeddus fel y gall teithwyr anabl adnabod gweithredwyr bysiau a threnau sydd wedi ymrwymo i’w gwneud hi’n haws i bobl anabl ddefnyddio eu gwasanaethau.
  • Cynnal y cynllun teithio rhatach ar fysiau ar gyfer pobl anabl sy’n cynnig cymorth mwy hael na chynlluniau tebyg mewn rhannau eraill o’r DU.
  • Cymryd camau i wella’r modd y caiff anghenion dysgu ychwanegol eu hasesu a’r modd y darperir ar eu cyfer, gwneud adeiladau ysgolion yn fwy addas ar gyfer disgyblion anabl a datblygu llwybrau dysgu ar gyfer plant a phobl ifanc anabl;
  • Gwella amseroedd cyflawni ac ansawdd yr offer cymhleth a ddarperir ar gyfer pobl anabl.

Fframwaith gweithredu ar gyfer byw’n annibynnol

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Diweddariad ar Rituximab treial y DU

Posted on September 23, 2013 by wames

Invest in ME have now raised £57,000 for their UK rituximab trial from a variety of organisations and individuals and can begin the first phase.

The UCL team is working on a study to confirm and expand Dr Bansal’s B cell results in a different cohort of ME patients. IiME’s advisor, Professor Jonathan Edwards, will be consulting with Norwegian researchers Professor Olav Mella and Dr Oystein Fluge about their trial.

Quick Overview of the IiME/UCL Clinical Trial

Interview with Professor Jonathan Edwards

The £350,000 trial is being funded through the ‘Matrix project’.  100 people or organisations are invited to contribute by pledging to raise or donate £1,000 each.

ME Research UK statement on funding a UK Rituximab trial

ME Association statement on funding a UK rituximab trial

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Pwysigrwydd tystiolaeth feddygol ar gyfer hawliadau budd-daliadau

Posted on September 22, 2013 by wames

Action for ME has produced a factsheet to help GPs understand why their medical evidence is so important in supporting benefits claims and appeals. If your practice is reluctant to provide such information or makes a substantial charge for it, consider giving a copy to your GP and practice manager.  If a GP is too busy to read the factsheet you may wish to tell her/him briefly the key points and check that your medical record is up to date.

Supporting medical evidence for people with M.E./CFS: a  guide for healthcare professionals who are asked to provide reports for welfare benefit claims and appeals  AfME, August 2013

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MS a ME tebygrwydd

Posted on September 22, 2013 by wames

Review abstract

Background

‘Encephalomyelitis disseminata’ (multiple sclerosis) and myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) are both classified as diseases of the central nervous system by the World Health Organization. This review aims to compare the phenomenological and neuroimmune characteristics of MS with those of ME/CFS.

Discussion

There are remarkable phenomenological and neuroimmune overlaps between both disorders. Patients with ME/CFS and MS both experience severe levels of disabling fatigue and a worsening of symptoms following exercise and resort to energy conservation strategies in an attempt to meet the energy demands of day-to-day living. Debilitating autonomic symptoms, diminished cardiac responses to exercise, orthostatic intolerance and postural hypotension are experienced by patients with both illnesses.

Both disorders show a relapsing-remitting or progressive course, while infections and psychosocial stress play a large part in worsening of fatigue symptoms. Activated immunoinflammatory, oxidative and nitrosative (O+NS) pathways and autoimmunity occur in both illnesses. The consequences of O+NS damage to self-epitopes is evidenced by the almost bewildering and almost identical array of autoantibodies formed against damaged epitopes seen in both illnesses. Mitochondrial dysfunctions, including lowered levels of ATP, decreased phosphocreatine synthesis and impaired oxidative phosphorylation, are heavily involved in the pathophysiology of both MS and ME/CFS.

The findings produced by neuroimaging techniques are quite similar in both illnesses and show decreased cerebral blood flow, atrophy, gray matter reduction, white matter hyperintensities, increased cerebral lactate and choline signaling and lowered acetyl-aspartate levels.

Summary

This review shows that there are neuroimmune similarities between MS and ME/CFS. This further substantiates the view that ME/CFS is a neuroimmune illness and that patients with MS are immunologically primed to develop symptoms of ME/CFS.

Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics, by Gerwyn Morris and Michael Maes BMC Medicine 2013, 11:205

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Gall probiotig leihau chytocinau pro-llidiol yn ME/CFS

Posted on September 3, 2013 by wames

Research abstract

Certain therapeutic microbes, including Bifidobacteria infantis (B. infantis) 35624 exert beneficial immunoregulatory effects by mimicking commensal-immune interactions; however, the value of these effects in patients with non-gastrointestinal inflammatory conditions remains unclear.

Method:

In this study, we assessed the impact of oral administration of B. infantis 35624, for 6?8 weeks on inflammatory biomarker and plasma cytokine levels in patients with ulcerative colitis (UC) (n = 22), chronic fatigue syndrome (CFS) (n = 48) and psoriasis (n = 26) in three separate randomized, double-blind, placebo-controlled interventions. Additionally, the effect of B. infantis 35624 on immunological biomarkers in healthy subjects (n = 22) was assessed.

At baseline, both gastrointestinal (UC) and non-gastrointestinal (CFS and psoriasis) patients had significantly increased plasma levels of C-reactive protein (CRP) and the pro-inflammatory cytokines tumor necrosis factor ? (TNF-?) and interleukin-6 (IL-6) compared with healthy volunteers. B. infantis 35624 feeding resulted in reduced plasma CRP levels in all three inflammatory disorders compared with placebo.

Results:

Interestingly, plasma TNF-? was reduced in CFS and psoriasis while IL-6 was reduced in UC and CFS. Furthermore, in healthy subjects, LPS-stimulated TNF-? and IL-6 secretion by peripheral blood mononuclear cells (PBMCs) was significantly reduced in the B. infantis 35624-treated groups compared with placebo following eight weeks of feeding.

Conclusion:

These results demonstrate the ability of this microbe to reduce systemic pro-inflammatory biomarkers in both gastrointestinal and non-gastrointestinal conditions. In conclusion, these data show that the immunomodulatory effects of the microbiota in humans are not limited to the mucosal immune system but extend to the systemic immune system.

Bifidobacterium infantis 35624 modulates host inflammatory processes beyond the gut by David Groeger et al. in Gut Microbes, Vol 4, Issue 4, July/Aug 2013.

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