ME Association

Last updated
ME Association
AbbreviationMEA
Formation1978
Type Non-governmental organization
PurposeFundraising and support for individuals with chronic fatigue syndrome
Headquarters Gawcott
Region served
United Kingdom
Official language
English
Website 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] It has been reported to be one of the two largest UK charities for ME/CFS. [2]

Contents

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.[ citation needed ]

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. [3]

The ME Association has conducted a number of patient surveys, including in 2010 and 2015, which have generally reported that most patients found activity pacing one of the most helpful treatments, and they found graded exercise therapy and cognitive behavioral therapy more harmful than helpful. [2]

The ME Association has campaigned for increased biomedical research on ME/CFS and improved treatment within the UK. [4]

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. [4]

Positions

Illness name

In 2001, the ME Association decided to use the term Myalgic Encephalopathy 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)". [5]

Treatments

The ME Association (MEA) campaigned against the PACE trial, a very large trial of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) stating that the money should be spent on biomedical research instead and raising concerns about the methodology. [6]

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 pacing as interventions for ME/CFS in the UK. They concluded that over 70 percent of patients said exercise therapy worsened their symptoms. [7] 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 withdrawn and stated that CBT should not be a primary intervention for ME/CFS. [8] 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. [9]

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. [2] [10] 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 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. [10]

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. [10]

The ME association was skeptical of the former 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.

In 2017, the ME Association raised concerns about the use of the controversial lightning process, with medical advisor Charles Shepherd claiming it was "pseudoscience" for a treatment to claim effectiveness for so many different illnesses at once. [11]

Additionally, MEA advocates that NICE has not studied the physiological aspects of persons with ME/CFS. [12]

Long COVID

In 2020, the ME Association's medical advisor said that COVID-19 may lead to some patients developing post-viral fatigue syndrome, which could then lead to ME/CFS. [13] [14] In May 2020, the MEA published several advice leaflets about the coronavirus. [15]

Related Research Articles

<span class="mw-page-title-main">Fatigue</span> Range of afflictions, usually associated with physical or mental weakness

Fatigue describes a state of tiredness, exhaustion or loss of energy.

Medically unexplained physical symptoms are symptoms for which a treating physician or other healthcare providers have found no medical cause, or whose cause remains contested. In its strictest sense, the term simply means that the cause for the symptoms is unknown or disputed—there is no scientific consensus. Not all medically unexplained symptoms are influenced by identifiable psychological factors. However, in practice, most physicians and authors who use the term consider that the symptoms most likely arise from psychological causes. Typically, the possibility that MUPS are caused by prescription drugs or other drugs is ignored. It is estimated that between 15% and 30% of all primary care consultations are for medically unexplained symptoms. A large Canadian community survey revealed that the most common medically unexplained symptoms are musculoskeletal pain, ear, nose, and throat symptoms, abdominal pain and gastrointestinal symptoms, fatigue, and dizziness. The term MUPS can also be used to refer to syndromes whose etiology remains contested, including chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity and Gulf War illness.

Brynmor Thomas John was a British Labour politician.

Rintatolimod, sold under the tradename Ampligen, is a medication intended for treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There is some evidence it may improve some ME/CFS symptoms.

<span class="mw-page-title-main">History of ME/CFS</span> Review of the topic

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has a long history with an evolution in medical understanding, diagnoses and social perceptions.

Management of ME/CFS focusses on symptoms management, as no treatments that address the root cause of the illness are available. Pacing, or regulating one's activities to avoid triggering worse symptoms, is the most common management strategy for post-exertional malaise. Clinical management varies widely, with many patients receiving combinations of therapies.

<span class="mw-page-title-main">Controversies related to ME/CFS</span> Controversies and issues related to ME/CFS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a history of controversy. Although it is classified as an organic disease, it was historically assumed to be psychosocial, and a minority of medical professionals still hold this view. The pathophysiology of ME/CFS remains unclear, there exists many competing diagnostic criteria, and some proposed treatments are controversial. There is a lack of awareness about the condition, which has led to substantiated accusations of patient neglect and harm.

<span class="mw-page-title-main">Clinical descriptions of ME/CFS</span> Review of the topic

Clinical descriptions of ME/CFS vary. Different groups have produced sets of diagnostic criteria that share many similarities. The biggest differences between criteria are whether post-exertional malaise (PEM) is required, and the number of symptoms needed.

The Lightning Process (LP) is a three-day personal training programme developed and trademarked by British osteopath Phil Parker. It makes unsubstantiated claims to be beneficial for various conditions, including chronic fatigue syndrome, depression and chronic pain.

Graded exercise therapy (GET) is a programme of physical activity that starts very slowly and gradually increases over time, intended as a treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Most public health bodies, including the CDC and NICE, consider it ineffective, and its safety is disputed. However, GET still enjoys support among a minority of clinicians and organizations.

Daniel Peterson is an American physician in private practice in the state of Nevada, and has been described as a "pioneer" in the treatment of chronic fatigue syndrome (CFS). He graduated from the University of Rochester School of Medicine, Rochester, New York, in 1976 and was an intern and resident at the University of Utah Medical Center from 1976 to 1979. In 1979, he became a diplomate of the American Board of Internal Medicine. He is president of Sierra Internal Medicine of Incline Village, established in 1981.

<span class="mw-page-title-main">Myalgic encephalomyelitis/chronic fatigue syndrome</span> Chronic medical condition

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating long-term medical condition. People with ME/CFS experience delayed worsening of the illness after minor physical or mental activity, which is the hallmark symptom of the illness. Other core symptoms are a greatly reduced ability to do tasks that were previously routine, severe fatigue that does not improve much with rest, and sleep disturbances. Further common symptoms include dizziness or nausea when sitting or standing, along with memory and concentration issues and pain.

<span class="mw-page-title-main">Rona Moss-Morris</span>

Rona Moss-Morris is Head of Health Psychology and Chair in Psychology as Applied to Medicine at the Institute of Psychiatry, King's College London. Her research investigates long-term, medically unexplained disorders such as chronic fatigue syndrome (CFS) and irritable bowel syndrome (IBS). She joined the IoP in 2011 and presented an inaugural lecture entitled "Trials and tribulations: A journey towards integrated care for long term conditions."

Rosamund Vallings is a medical doctor, known as one of the leading authorities on Chronic Fatigue Syndrome (ME/CFS) in New Zealand.

<span class="mw-page-title-main">Post-exertional malaise</span> Worsening of symptoms with activity

Post-exertional malaise (PEM), sometimes referred to as post-exertional symptom exacerbation (PESE) or post-exertional neuroimmune exhaustion (PENE), is a worsening of symptoms that occurs after minimal exertion. It is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and common in long COVID and fibromyalgia PEM is often severe enough to be disabling, and is triggered by ordinary activities that healthy people tolerate. Typically, it begins 12–48 hours after the activity that triggers it, and lasts for days, but this is highly variable and may persist much longer. Management of PEM is symptom-based, and patients are recommended to pace their activities to avoid triggering PEM.

International May 12th Awareness Day, also known as International ME/CFS Awareness Day is held every year to raise awareness of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity, Gulf War syndrome and other chronic immunological and neurological diseases (CIND).

Idiopathic chronic fatigue (ICF) or chronic idiopathic fatigue or insufficient/idiopathic fatigue is a term used for cases of unexplained fatigue that have lasted at least six consecutive months and which do not meet the criteria for Myalgic Encephalomyelitis/chronic fatigue syndrome. Such fatigue is widely understood to have a profound effect on the lives of patients who experience it.

Peter C. Rowe is a physician and academic. A leading researcher in chronic fatigue syndrome, he is Professor of Pediatrics, Sunshine Natural Wellbeing Foundation Professor of Chronic Fatigue and Related Disorders, and Director of the Children's Center Chronic Fatigue Clinic at Johns Hopkins University School of Medicine.

<span class="mw-page-title-main">DecodeME</span> Genetic study on ME/CFS

DecodeME is an ongoing genome-wide association study searching for genetic risk factors for ME/CFS. With a planned recruitment of 25,000 patients, it is expected to be the largest such study to date. Recruitment closed on 15 November 2023 and results are expected in 2024.

References

  1. ↑ "ME Association". The National Organization for Rare Disorders. Retrieved 2017-08-01.
  2. 1 2 3 Kirke, Karen D (August 2017). "PACE investigators' response is misleading regarding patient survey results". Journal of Health Psychology. 22 (9): 1168–1176. doi: 10.1177/1359105317703787 . ISSN   1359-1053. PMID   28805528.
  3. ↑ Thomas, Marie A and Smith, Andrew P (2005). "Primary healthcare provision and Chronic Fatigue Syndrome: a survey of patients' and General Practitioners' beliefs". BMC Family Practice. 2005 6:49: 49. doi: 10.1186/1471-2296-6-49 . PMC   1325235 . PMID   16351714.{{cite journal}}: CS1 maint: multiple names: authors list (link)
  4. 1 2 "ME: Treatment and Research - Hansard". hansard.parliament.uk. 21 June 2018. Retrieved 2020-06-06.
  5. ↑ "Use of the term myalgic encephalopathy on the new MEA website". ME Association. 2010-10-01. Retrieved 2020-06-06.
  6. ↑ Shepherd, Charles B (2017-08-01). "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". Journal of Health Psychology. 22 (9): 1187–1191. doi: 10.1177/1359105317703786 . ISSN   1359-1053. PMID   28805522.
  7. ↑ Collingwood, Jane (5 April 2016). "Debate over Chronic Fatigue Syndrome Therapy". PsychCentral.com. PsychCentral. Retrieved 5 August 2017.
  8. ↑ Shepherd, Charles (2016-02-01). "Patient reaction to the PACE trial". The Lancet Psychiatry. 3 (2): e7–e8. doi: 10.1016/S2215-0366(15)00546-5 . ISSN   2215-0366. PMID   26795759.
  9. ↑ "Calls to scrap common treatment for ME". BBC News. 2018-05-08. Retrieved 2020-06-06.
  10. 1 2 3 The ME Association. "No decisions about me without me" (PDF). ME Association. The ME Association. Retrieved 20 January 2016.
  11. ↑ Chivers, Tom (30 December 2017). "Inside The Controversial Therapy For Chronic Fatigue Syndrome That Some Patients Call A "Cult"". BuzzFeed. Retrieved 2020-06-06.
  12. ↑ 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. doi:10.1016/j.jpsychores.2016.07.008. PMID   27521650.
  13. ↑ Wilson, Clare. "Could the coronavirus trigger post-viral fatigue syndromes?". New Scientist. Retrieved 2020-06-06.
  14. ↑ Hinde, Natasha (2020-05-11). "Coronavirus Is Leaving People With Serious Fatigue – What Can You Do About It?". huffpost.com. Retrieved 2020-06-06.
  15. ↑ "ME Association Guidance: Reducing the risk of Covid-19 and PVFS/ME/CFS | 19 May 2020". ME Association. 2020-05-19. Retrieved 2020-06-06.
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