The WAMES AGM will be held on Friday 9th March 2012 in Dinas Powys.

Open to all members. Contact Jan if you wish to attend.

A review has been published describing the principle of pacing and how this can be adapted to meet individual abilities and preferences. A critical evaluation of the research was conducted to ascertain the benefits and limitations of this strategy.

Based on various studies, it is proposed that pacing can help to stabilize the condition and avoid post-exertional malaise. Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS.

Implications for Rehabilitation:

• Pacing is a strategy which helps patients with ME/CFS limit exertion-related increases in symptomatology.
• Pacing is appropriate for those who operating near or at their maximum level of functioning, and for individuals with neurological and immunological abnormalities.
• Pacing may be offered as part of an individualized, multi-component management programme.

Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document

The Bulletin of the International Association for CFS/ME has published an assesment of the process for ‘Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’.

ABSTRACT:

Across different medical fields, authors have placed a greater emphasis on the reporting of efficacy measures than harms in randomised controlled trials (RCTs), particularly of nonpharmacologic interventions. To rectify this situation, the Consolidated Standards of Reporting Trials (CONSORT) group and other researchers have issued guidance to improve the reporting of harms. Graded Exercise Therapy

(GET) and Cognitive Behavioural Therapy (CBT) based on increasing activity levels are often recommended for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). However, exercise-related physiological abnormalities have been documented in recent studies and high rates of adverse reactions to exercise have been recorded in a number of patient surveys. Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.

Using the CONSORT guidelines as a starting point, this paper identifies problems with the reporting of harms in previous RCTs and suggests potential strategies for improvement in the future. Issues involving the heterogeneity of subjects and interventions, tracking of adverse events, trial participants’ compliance to therapies, and measurement of harms using patient-oriented and objective outcome measures are discussed. The recently published PACE (Pacing, graded activity, and cognitive behaviour therapy: a randomised evaluation) trial which explicitly aimed to assess “safety”, as well as effectiveness, is also analysed in detail. Healthcare professionals, researchers and patients need high quality data on harms to appropriately assess the risks versus benefits of CBT and GET.

FROM THE CONCLUSION:

It is hoped that this paper will lead to a greater focus on the reporting of harms in ME/CFS, not just those that might be associated with GET or CBT, but from any posited treatment.

Interventions should not be presumed to be harmless when there exists evidence of potential harm and there have not been well-planned systematic methods to track and assess harms both within and outside trials. Potential strategies to improve reporting of harms are summarized in Table 3.

ME/CFS research should at least conform to standards being recommended for the majority of medical research while taking into account the unique features of the disease, such as its relapsing-remitting nature. Moreover, in the ME/CFS field, comparisons are often not made just within the classes of pharmacologic interventions and non- pharmacologic interventions but also between pharmacologic and non-pharmacologic treatments. False conclusions could be reached that a non-pharmacologic intervention is “safer” than a pharmacologic agent if harms-related data was collected more rigorously for the latter.

Individuals with ME/CFS can face many challenges and have not always been treated as well as they should have been by healthcare professionals. Many feel that their symptoms have been downplayed and their negative experiences of some treatments ignored.

Full text in PDF

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.

New diagnostic criteria for ME have been published by 25 authors from 13 countries, led by Canadian guidelines editors Bruce M Carruthers MD CM FRCP(C) and Marjorie I van de Sande BEd GradDip Ed, and including WAMES’ medical adviser Dr Nigel Speight. The panel used the Canadian consensus document as a starting point but made a number of significant changes, achieving 100% consensus and citing 123 publications to support its recommendations.

Main points include:

• “In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology.”
• “…diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.”
• “A patient with ME will meet the criteria for post-exertional neuroimmune exhaustion (PENE), at least one symptom from three neurological impairment categories, at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories, and at least one symptom from energy metabolism/transport impairments.”
• “Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”
• “Atypical Myalgic Encephalomyelitis meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms.”

Abstract             Excerpts from paper

Gwyn Hopkins, a 60 year old grandmother has just completed a 150 mile trek across the width of Wales in aid of ME in 10 days using footpaths and bridleways and spending nights in her one woman tent.

Thirteen years ago Gwyn was struck down with M.E. After weeks in hospital she became bedbound in her own home and faced a future in which mobility meant being pushed in a reclining wheelchair.

Her walk across Wales was aimed at demonstrating to the tens of thousands of ME sufferers in Britain that a full recovery is possible. Also she wanted to raise funds for “M.E. Research UK”, a charity funding biomedical research into ME.

“I want to do it simply because – now – I can” says Gwyn “it is such a joy to be out in the countryside again after spending years in bed, unable to walk more than a few paces. If I can help or inspire M.E. sufferers at the same time then that’s great.”

Gwyn, a former Monmouth care support worker who now lives in Somerset, says she made her against-the-odds recovery with great family support and by adopting Complementary Therapies. It took her 5 years.  More about Gwyn  Donate  to her charity

WAMES’ Information for all campaign launched during ME Awareness week

ME & CFS information for all

10 years of campaigning for better services and talking to people with ME, carers and professionals has shown us that accurate information about ME is not reaching those who need it. During ME Awareness week WAMES is launching a campaign to provide better information in Welsh and English for all who need it, beginning with our new website. We are using research results, clinicians’ experience and patient and carer stories to produce information sheets on a wide range of topics. By including the results of biomedical research we hope we can change many of the misconceptions about the illness that exist within the health service and general public, thus improving dialogue between professionals and those affected by ME, leading to an improvement in their quality of life.