Dr Joanna Longstaffe describes Post-viral fatigue syndrome (PVFS) and advises:
the most important thing for you to do is to rest up, maintain a healthy diet and general lifestyle and try to remain as stress free as possible to give yourself the best chance of a full recovery.
Drs Oystein Fluge and Olav Mella have been given 2 million Norwegian Kroners (approx. £220,000) to help fund a larger multi-centre follow-up study to confirm their findings that some people with ME had benefited from the immune modulator rituximab. This is not enough to fund the whole project so they are working to a draft protocol for a larger study in cooperation with the Oslo University Hospital (Aker).
When the preliminary protocol is completed, they establish collaborations with other research communities that want to take part in the study.
After that, the research protocol will be submitted to the Committee for Medical and Health Research Ethics and the Norwegian Medicines Agency.
An Australian study used the Validity Indicator Profile (VIP) to examine whether reduced effort contributes to the cognitive deficits that are associated with CFS.
Unlike most tests of effort, the VIP distinguishes between intentional and unintentional poor performance and does not assess cognitive functions that are affected by CFS, thereby reducing the risk of mistakenly attributing genuinely poor performance to reduced effort.
VIP performance was classified as valid for the majority of participants (CFS and controls), indicating high levels of effort and an intention to perform well.
No participant performed in a manner indicative of an intent to perform poorly (invalid: suppressed, inconsistent).
These findings suggest that poor effort is unlikely to contribute to cognitive test performance of persons with CFS.
Voices from the shadows is a compassionate and moving exposé, bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illnesses of the 21st Century.
The film presents interviews with medical experts and people with ME/CFS and their carers, together with archive and other material provided by them in a collaborative effort. All involved testify to the shocking severity of this physical illness and challenge the deeply unethical professional conduct of sections of the medical and the psychiatric professions who deny the biological basis of a neurologically debilitating, severe, chronic and occasionally fatal illness, even though it has been officially recognized as such by the World Health Organisation for over 40 years.
The film shows how children and young people have been coerced or forced, under threat of removal from their parents and/or admission to psychiatric wards, to undertake exercise programmes that have resulted in years and even decades of bedridden isolation, often in darkened rooms, suffering long-term paralysis and even death. As one of the medical experts involved makes clear, this tragic situation is the consequence of a situation where research funding follows political policy rather than medical need.
Buy the DVD £6 each plus a flat rate of £2 for p&p for any number of disks
Watch online from anywhere in the world for £2.39
Author Emily Collingridge lived with severe ME for 24 years and died in hospital on the 18th March 2012 at the age of 30. Her book Severe ME/CFS: A Guide to Living
was written at great cost to her health to ‘make the lives of those affected by severe ME easier’ and to be ‘a guiding light in the darkness’. In 2011, following a serious relapse she published a letter pleading for research and appropriate support for people with severe ME.
Our hearts go out to her stunned family. All of us at WAMES echo her plea: Please put an end to the abandonment of people with severe ME and give us all real reason to hope.
ME is often dismissed – but sufferers like Emily Collingridge are dying (Guardian article)
Researchers from London studied 222 patients reporting fatigue for over three months. They were given either ‘usual care’ – providing a booklet describing causes of fatigue and self-help techniques based on cognitive behavioural therapy – or NICE-approved therapies such as counselling and graded exercise.
They found fatigue symptoms in patients treated with graded exercise therapy or counselling were no better during this time than those who had been managed with usual care.
There was an improvement in the Chalder fatigue score over time regardless of which treatment group patients were in. The improvement between six month and 12 month follow-up was not significantly different between those receiving usual care and those receiving either graded exercise therapy or counselling.
In general, dissatisfaction with care was high. But there was no significant difference between the three groups at six months. However, there was a difference in dissatisfaction between groups at 12 months, with those in the booklet group being more dissatisfied.
Study lead, Professor Leone Ridsdale, professor of neurology and general practice at King’s College London,said: ‘Our findings suggest that many patients improve substantially in the first six months.’
‘From the current evidence, we propose that after assessment of patients who present with fatigue in primary care, doctors offer to reassess them in six months. If fatigue symptoms persist, the practitioner and patient may discuss further therapy options.’
Wait 6 months before treating fatigue
Spartacus is a grass-roots movement that started with the publication of the Responsible Reform report which revealed overwhelming opposition to the UK Government’s proposed welfare reforms, in particular the proposal to reform Disability Living Allowance (DLA)
The Report was entirely researched and written by disabled people and based on a rigorous analysis of the 523 organisational responses to the Government’s consultation on reform of disability living allowance which closed in February 2011. The report also analysed the reasons behind the increase in recent years in the number of DLA claimants.
The website contains news, reports, publications and briefings, and can be discussed on the forum We are Spartacus
Gwneud pethau’n well – Adolygiad o Gwynion Gwasanaethau Cymdeithasol
Rydym am wybod a ddylid diweddaru neu ddiwygio’r prosesau cwyno presennol i ddiwallu anghenion defnyddwyr gwasanaethau. Rydym eisiau sicrhau bod defnyddwyr gwasanaethau cymdeithasol yng Nghymru yn gallu mynegi pryderon a chwyno am y gwasanaethau â chyn lleied o drafferth â phosibl. Rydym yn awyddus i sicrhau bod pawb yn cael proses gwyno sydd: yn hygyrch; yn syml; yn deg; yn ddiduedd; yn amserol; yn effeithiol; yn gyson; yn atebol; ac yn sicrhau gwelliannau’n barhaus. Y dyddiad cau ar gyfer derbyn sylwadau yw 30 Mai 2012.
The Cardiff based support group ME Support in Glamorgan (MESiG) is meeting AMs in the Senedd on 21st March 2012 to raise awareness of ME and highlight the lack of healthcare available in Wales. MESIG wants ME to be recognised for the “serious and very real condition that it is so people get treated properly”.
A major study on the effects of Ampligen (Rintatolimod) on CFS provides added proof of Ampligen’s efficacy in ME/CFS following America’s Food & Drug Administration’s refusal to approve Ampligen for CFS in Dec 2009.
234 subjects with long-standing, debilitating CFS at 12 sites were given either twice weekly IV rintatolimod or a placebo.
Researchers reported that Ampligen increased exercise tolerance by 16.6%, reduced medication usage, improved most well-being scores and was safe.
Rhif Elusen Gofrestredig 1144534
