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Action for ME

NonprofitKeynsham, United Kingdom
About: Action for ME is a nonprofit organization based out in Keynsham, United Kingdom. It is known for research contribution in the topics: Cognition & Standardization. The organization has 4 authors who have published 4 publications receiving 42 citations. The organization is also known as: M.E. Action Campaign.

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Journal ArticleDOI
TL;DR: A substantial amount of centre ground was established between medical researchers, practitioners, and patient advocates, and not surprisingly there were serious and principled disagreements on several issues, which led to six members (all clinicians) deciding that they could not endorse the final report.

26 citations

Journal ArticleDOI
TL;DR: The negative themes indicate rehabilitation processes which contradict the NICE Guideline advice regarding GET, indicating that some clinical encounters were not implementing these and areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME.
Abstract: Disability and Rehabilitation 0 (2013) : 1-8, Informa Healthcare Purpose: 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: 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: 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. Read More: http://informahealthcare.com/doi/abs/10.3109/09638288.2013.797508

15 citations

Journal ArticleDOI
TL;DR: In this article , the authors explore different practices in pre-electroconvulsive therapy (ECT) evaluation across European countries using a snowball sample approach using an online survey from September 2019 to April 2020.
Abstract: Objectives Pre–electroconvulsive therapy (ECT) evaluation is an essential part of ECT preparation, a standard treatment in the psychiatric field. However, no routine pre-ECT evaluation has been published so far. This preliminary study aimed to explore different practices in pre-ECT evaluation across European countries. Methods The data were collected as a snowball sample approach using an online survey from September 2019 to April 2020. The final analysis included data from 18 clinics placed in 16 European countries. Results Regulations on the pre-ECT evaluation were found in 9 countries. All clinics reported doing complete blood count, serum electrolytes, and renal function analysis as a part of regular laboratory testing, alongside with a cardiovascular assessment. Ten clinics reported using psychiatric scales. Six clinics reported doing a cognitive assessment, of which all had regulations on the pre-ECT evaluation. Not one evaluation had the same sets of procedures and diagnostics. Conclusions The differences in assessment approaches mirror high variability of the pre-ECT evaluation practice across Europe. Cognitive assessment and objectification of psychiatric symptoms should be a regular part of the pre-ECT evaluation because of the monitoring of the most common adverse effect and observing the clinical response to ECT. Standardization of the pre-ECT evaluation and ECT in general would remove criticisms and opposition to the treatment, make it based on the best of our knowledge, and provide a method respectful of patients' best interests and rights.

3 citations

Journal ArticleDOI
Jane Colby1

1 citations

Journal ArticleDOI
Ruth Richardson1
TL;DR: Ruth Richardson of UK charity Action for ME discusses the need to increase awareness of this condition among healthcare professionals and shares resources to help with this.
Abstract: Myalgic encephalomyelitis, or chronic fatigue syndrome, represents a significant human and economic health burden. Ruth Richardson of UK charity Action for ME discusses the need to increase awarene...

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Performance
Metrics
No. of papers from the Institution in previous years
YearPapers
20221
20211
20141
20021
19991