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resulted in less symptom improvement, more symptom worsening, and dissatisfaction of treatment by persons with ME/CFS. The MEA stated CBT that counsels patients with practical coping skills and dealing with co-morbid conditions may be appropriate and 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.
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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
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The 2015 MEA survey results concluded that CBT based on the now disproven 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
203:
as interventions for ME/CFS in the UK. They concluded that over 70 percent of patients said exercise therapy worsened their symptoms. Based on the survey's findings, the MEA concluded that GET should not be used for people with ME/CFS. In 2016, the MEA called for graded exercise therapy to be
175:
rather than
Myalgic Encephalomyelitis, stating that they felt this was a more appropriate description and was a name that doctors "cannot simply dismiss on the grounds that it is pathologically inaccurate in relation to ME (or research defined cases of CFS)".
144:
As of 2005, persons with ME/CFS in the UK still had difficulty obtaining treatment literature from their
General Practitioners' surgeries. A majority of persons with the illness were able to obtain treatment literature from the ME Association.
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withdrawn and stated that CBT should not be a primary intervention for ME/CFS. In 2018, the MEA repeated that GET should be withdrawn, and this should not be delayed until the ongoing UK's NICE guidelines review was completed.
141:
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.
218:(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.
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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 strategy.
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may lead to some patients developing post-viral fatigue syndrome, which could then lead to ME/CFS. In May 2020, the MEA published several advice leaflets about the coronavirus.
448:"PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It's time for an independent review of the methodology and results"
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The ME Association has conducted a number of patient surveys, including in 2010 and 2015, which have generally reported that most patients found
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In 2012, a year after the main PACE trial results, the MEA commenced an extensive opinion survey of patients who had used CBT, GET and
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one of the most helpful treatments, and they found graded exercise therapy and cognitive behavioral therapy more harmful than helpful.
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The ME Association funds research into ME/CFS, and in 2018 was reported to be funding the running costs of the UK ME/CFS Biobank.
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196:(GET) stating that the money should be spent on biomedical research instead and raising concerns about the methodology.
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334:"Primary healthcare provision and Chronic Fatigue Syndrome: a survey of patients' and General Practitioners' beliefs"
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The ME Association has campaigned for increased biomedical research on ME/CFS and improved treatment within the UK.
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Additionally, MEA advocates that NICE has not studied the physiological aspects of persons with ME/CFS.
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633:"Inside The Controversial Therapy For Chronic Fatigue Syndrome That Some Patients Call A "Cult""
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658:"A UK based review of recommendations regarding the management of chronic fatigue syndrome"
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746:"ME Association Guidance: Reducing the risk of Covid-19 and PVFS/ME/CFS | 19 May 2020"
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that provides information, advocacy, and services to persons and families affected by
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722:"Coronavirus Is Leaving People With Serious Fatigue – What Can You Do About It?"
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In 2017, the ME Association raised concerns about the use of the controversial
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The ME association was skeptical of the former guidance recommended by
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422:"Use of the term myalgic encephalopathy on the new MEA website"
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Medical and health organisations based in the United
Kingdom
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In 2020, the ME Association's medical advisor said that
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The
National Institute for Health and Care Excellence
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In 2001, the ME Association decided to use the term
968:Myalgic encephalomyelitis/chronic fatigue syndrome
810:Myalgic encephalomyelitis/chronic fatigue syndrome
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184:The ME Association (MEA) campaigned against the
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497:"Debate over Chronic Fatigue Syndrome Therapy"
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332:Thomas, Marie A and Smith, Andrew P (2005).
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524:"Patient reaction to the PACE trial"
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603:"No decisions about me without me"
495:Collingwood, Jane (5 April 2016).
446:Shepherd, Charles B (2017-08-01).
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662:Journal of Psychosomatic Research
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188:, a very large trial of
65:chronic fatigue syndrome
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834:Post-exertional malaise
194:graded exercise therapy
126:charitable organization
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173:Myalgic Encephalopathy
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612:. The ME Association
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264:2017-08-01
244:References
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192:(CBT) and
186:PACE trial
180:Treatments
136:Activities
829:Treatment
668:: 33–35.
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162:Positions
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576:BBC News
558:26795759
507:5 August
482:28805522
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