A team led by Prof Basant Puri has used high resolution MRI scanning to uncover reduced grey matter volume in several parts of the brain. They believe that the data supports the hypothesis that significant neuroanatomical changes occur in CFS, and are consistent with the complaint of impaired memory that is common in this illness; they also suggest that subtle abnormalities in visual processing, and discrepancies between intended actions and consequent movements, may occur in CFS.

Abstract

More information

Prof Malcolm Hooper raises concerns about the use of statistics in current research:

Statistics and the conclusions drawn from them are nowhere more crucial than in the delivery of medical care. Drawing appropriate conclusions from correctly processed and interpreted data is vital. Where this doesn’t happen, the consequences can be devastating.

Randomised controlled trials (RCTs) are seen as the gold standard – so how is it possible to arrive at a translation into clinical practice that presents a nightmare to some of the sickest people in the country? This is what happened with the PACE Trial, in which it was possible for a participant to deteriorate physically over the course of the trial yet still be reported as having “recovered”.

PACE is the acronym for “Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation”; it cost over £5 million and was described as a Government-funded RCT of rehabilitation strategies for patients with Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME)…

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A study of a specialist paediatric CFS/ME service in Bristol found that out of 405 children studied between 2006 and 2009 only 1/125 of those with severe CFS/ME and 49/263 of those with mild to moderate CFS/M.E. were seen within NICE recommended time frames. National Institute for Health and Clinical Excellence (NICE) guidelines recommend referral to specialist services immediately if severely affected, within 3 months if moderately affected and within 6 months if mildly affected. The median time-to-assessment was 18 months.

Research abstract

Beth ydych chi’n ei ddymuno y Nadolig hwn?

Ydych chi’n gofalu am rhywun agos?

Ydych chi’n dymuno y gallech ddweud wrth bobl broffesiynol sy’n gwneud penderfyniadau, yr hyn rydych ei eisiau mewn gwirionedd i chi eich hun a’r rhai rydych yn gofalu amdanynt?

Gallai eich ‘dymuniad’ gael ei arddangos yn y Galeri yn y Senedd ar Ragfyr 1af 2011 mewn digwyddiad sy’n cael ei noddi gan Jane Hutt AC, Arweinydd y Tŷ, i gofnodi Diwrnod Hawliau Cynhaliwyr 2011. Gellir gyrru ‘dymuniadau’ ar unrhyw ffurf, Saesneg neu Gymraeg, ar gerdyn post, e-bost, ar fformat llun, ffotograff neu gerdd.

Gwybodaeth pellach: Canolfan Cynhaliwyr, Victoria Rd East, Canton, Caerdydd, CF5 1GZ

029 2022 1439 neu e-bost

This study investigated the expressed needs for health and social care of CFS/ME of people from varied social backgrounds, including those from ethnic minorities, and the challenges posed to health care professionals in providing appropriate and equitable care for this condition.

Access is linked to, and often constrained by official recognition of health conditions. Where, as with CFS/ME, these are difficult to diagnose and to recognise as genuine illnesses, inequalities of access arise to health and to health-relevant social care.

People with CFS/ME in this study highlighted the complexity of their illness, its impact on well being and the intensity of their consequent needs to regain control over their lives. For health services to respond more equitably to these needs, they should provide earlier diagnosis, more holistic health-and social care management, and more coordinated, pro-active comprehensive support across services and support networks. These are vital to maintain social inclusion, secure practical support to manage life and to decrease the impact on carers and finances. Well-being was seen to depend on needs-based, personalised, provision which could acknowledge the expertise of people living with CFS/ME.

Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support.

Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed.

Full article

Mae Lesley Griffiths, y Gweinidog Iechyd, wedi cyhoeddi gweledigaeth bum mlynedd newydd ar gyfer y Gwasanaeth Iechyd Gwladol.

Roedd y weledigaeth hon yn seiliedig ar wasanaethau cymunedol ac ar roi ansawdd, atal a thryloywedd wrth galon gofal iechyd.

Mae Law yn Llaw at Iechyd yn amlinellu’r heriau sy’n wynebu’r gwasanaeth iechyd a’r camau sydd angen eu cymryd i sicrhau bod ei berfformiad yn un o safon fyd-eang.

Mae’n rhestru’r ffactorau sydd y tu ôl i’r angen am newid, gan gynnwys poblogaeth hŷn sy’n cynyddu, anghydraddoldebau iechyd, mwy o bobl â chyflyrau cronig, a’r pwysau ar staff meddygol ac ar rai gwasanaethau arbenigol.

Mae’r ddogfen yn nodi sut bydd y GIG yn edrych mewn pum mlynedd, yn seiliedig ar roi rhan bwysig i wasanaethau sylfaenol a chymunedol ei chwarae.

Former Civil Engineer Gemma Phillips from South Wales talks about her experience of the benefit system. This digital story was presented at Disability Wales’ ‘Unequal Cuts’ seminar on the impact of benefit and public service cuts on disabled people, at the Newport Hilton on 19 October 2011.

Gallai gyffur gwrth-gansar fod yr allwedd i drin CFS, yn ôl ymchwilwyr o Norwy. Lleihaodd symptomau’r clefyd mewn deg allan o bymtheg o gleifion a gafodd Rituximab, cyffur gwrth-lymffoma, ac ymddengys fod dau wedi gwella’n llwyr. Bu i’r rhan fwyaf o gleifion brofi ail bwl o salwch ar ôl cyfnod ond mae’r doctoriaid nawr yn arbrofi gyda pharhad o’r triniaethau gyda’r bwriad o gynnal yr effaith da. Mae’r arolygon yn obeithiol.

Mae Rituximab yn gweithio drwy ddinistrio celloedd gwaed gwynion sy’n gwneud gwrthgorffynnau, a elwir yn gelloedd B. Mae canlyniadau’r treial felly’n awgrymu y gallai’r cellloedd gwaed gwynion hyn fod a rhan mewn achosi CFS a fod CFS yn glefyd hunan-imiwn. Darganfyddodd y tîm ar ddamwain y gallai Rituximab weithio ar CFS ar ôl gweld symptomau’n lleihau mewn claf oedd hefo lymffoma a CFS.

Erthygl New Scientist                           Eitem Newyddion TV2

Action for M.E. is making two grants of up to £25,000 each for biomedical research into ME. The call for proposals focuses on autonomic dysfunction, fatigue, immune dysregulation and pain.

Proposals must be submitted by email by 4pm Friday 20 January 2012. Press release

Are you concerned about Government cuts to disability benefits and services?

Join others who are affected by the cuts in a march in Cardiff on Sat 22nd October and help to send a clear message to the Government: stop these cuts. Marches will be held all over the UK organised by the Hardest Hit Campaign and supported by WAMES.

12.30 – Meet from 12.30 in the car park outside City Hall, Cathays Park.

1.00 – Speeches begin then the march will set off.

2.00 – Rally at the City Hall from 2.00.

Speakers: Boyd Clack (writer and star of Satellite City and High Hopes); Sarah Rochira the Director of RNIB Cymru, Rhian Davies the Director of Disability Wales, and Mohammad Asghar AM for South Wales East; local people who can speak from their own experiences about what the proposed cuts to benefits and services will mean to them as disabled people trying to live independent and fulfilling lives.

Directions to Cardiff City Hall -Click on the City Centre area of the map to open a more detailed view of the centre, showing rail links and information about parking.

Information about blue badge parking can be found on this map link:

To register your interest in the rally please email: wales@hardesthit.org.uk or call 020 8522 7433

Even if you can’t attend you can:

1. Write to your MP and invite them to attend their local event.

2. Lobby your MP in the week leading up to the event to help make sure that they are aware of our campaign and the arguments against welfare reform.

3. Write to the editor of your local newspaper so that as many people as possible know the march is taking place.

5. Be a case study. Your story is the most important. Tell us why you support this campaign and help us show the human face of welfare reform.