ME Association
| Formation | 1976 |
|---|---|
| Type | Non-governmental organization |
| Purpose | Fundraising and support for individuals with chronic fatigue syndrome |
| Headquarters | Gawcott |
Region served | United Kingdom |
Official language | English |
| Website | www.meassociation.org.uk |
The ME Association is a UK health charitable organization that provides information, advocacy, and services to persons and families affected by ME/CFS, and raises funds for research into ME/CFS.[1]
Activities
The organisation informs its members of developments affecting sufferers, carers, family and friends, via its quarterly magazine ME Essential, its website, and other communication media. It promotes its members' interests in medical and political arenas, and in the media. It produces advice on specific aspects of the illness and its effect on sufferers, particularly in its clinical guidance booklet, 'ME/CFS/PVFS : An exploration of the key clinical issues', which informs both practitioners and patients.
The ME Association telephone helpline MEConnect[2] is available for advice and support between 10.00 and 12.00 am, 2.00 and 4.00 pm and 7.00 and 9.00 pm, every day of the year, on 0844 576 5326.[notes 1] Email ME Connect on meconnect@meassociation.org.uk is also available for medical and dental advisers. This only provides factual information, and references to other informational sources.[3]
The organisation is a charitable company and members subscribe annually at a cost of £18.
Positions
In 2012 the MEA commenced an extensive opinion survey of patients who had used cognitive behaviour therapy (CBT), graded exercise therapy (GET) and pacing, as interventions used in management strategies for ME/CFS in the UK. They concluded that over 70 percent of patients said exercise therapy worsened their symptoms.[4] Based on the findings of the survey, in 2015 the MEA concluded that GET should not be used for people with ME/CFS.
The MEA survey results concluded CBT intervention practiced, on the assumption that abnormal beliefs and behaviours are responsible for maintaining the illness, are inappropriate, and risked a worsening of symptoms. A CBT practitioner's belief that ME/CFS is a psychological illness also resulted in less symptom improvement, more symptom worsening, and dissatisfaction of treatment by persons with ME/CFS. The model of CBT that aids patients with practical coping skills and dealing with co-mobid conditions may be appropriate. Such CBT should be available as required to ME/CFS patients the same as other chronic conditions such as multiple sclerosis, Parkinson's disease, cancer, heart disease, and arthritis etc.
Pacing was considered, "the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS". The MEA recommended it should be the major management stratagy[5]
The ME association is skeptical of the guidance recommended by The National Institute for Health and Care Excellence (NICE) for primary treatment of ME/CFS. The MEA considers CBT with GET not safe for ME/CFS patients, or not effective. The ME Association recommends that persons with ME/CFS consider a pacing approach to the illness.
Additionally, MEA advocates that NICE has not studied the physiological aspects of persons with ME/CFS.[6]
Notes
- ↑ Note: rates for 0844 numbers are fixed by the telephone provider. The MEA receives 3p/min to cover costs of service, telephone provider fees are an additional charge. Mobile phone and other devices may be more expensive than landlines
References
- ↑ "ME Association". The National Organization for Rare Disorders. Retrieved 2017-08-01.
- ↑ "The ME (Myalgic Encephalopathy) Association". Lincolnshire County Council. Retrieved 2017-08-01.
- ↑ "ME Association) Association". ME Association. Retrieved 2017-08-01.
- ↑ Collingwood, Jane (5 April 2016). "Debate over Chronic Fatigue Syndrome Therapy". PsychCentral.com. PsychCentral. Retrieved 5 August 2017.
- ↑ The ME Association. "No decisions about me without me" (PDF). ME Association. The ME Association. Retrieved 20 January 2016.
- ↑ Mallet, Miriam; et al. (2016). "A UK based review of recommendations regarding the management of chronic fatigue syndrome". Journal of Psychosomatic Research. 88: 33–35.