Participants
A total of 1144 participants completed the on-line survey (Fig. 2). The majority of respondents indicated that they had M.E. (n = 822). However, responses were also received from individuals who had a family member, friend or colleague with M.E. (n = 136) or were caring for someone with M.E. (n = 66). Individuals with a professional interest in M.E. also completed the online survey (n = 26), and a proportion indicated that they were a supporting lifelong or professional member of Action for M.E. (n = 94).
Top five research priorities described by Action for M.E. survey respondents
The top five areas identified as a first, second or third research priority were: disease processes to achieve a better understanding of the underlying pathology of M.E. (total rating count = 618); more effective treatments (total rating count = 505); faster and more accurate diagnosis (total rating count = 309); clinical course of M.E., outcomes and prognosis (total rating count = 207); and severely affected patients (total rating count = 203). The least popular research priorities identified were: sleep (total ratings count = 79); economic research towards identifying the cost of M.E. for individuals and society (total ratings count = 68); and psychological aspects (total rating count 60). (Figure 3 and further details are available from http://www.actionforme.org.uk/get-informed/news/our-news/archived-news/our-news/2013/research-priorities-our-survey-results).
Key themes from the unstructured responses to the research priorities survey
Much of the unstructured data provided by respondents emphasised the importance of funding biomedical research into disease processes to achieve a better understanding of the underlying pathology of M.E. Three themes were identified in relation to this topic, and these will provide the basis for the presentation of the unstructured responses.
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Theme 1: Accurate diagnosis and awareness
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Theme 2: Risk factors and causes
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Theme 3: Drug development and curative therapies
Theme 1: accurate diagnosis and awareness
Many of the respondents felt their condition was often trivialised and requested that a clear distinction be made between M.E. and Chronic Fatigue Syndrome (CFS).
A “Define a more accurate name for the illness”
B “Chronic fatigue is not M.E. and has trivialised M.E., making the dangers in the condition misunderstood”
C “Change the name of M.E. – ‘chronic fatigue’ dropped and M.E. as M.E. given the neurological symptoms, effects and underlying pathology of the condition”
It was suggested that the identification of a diagnostic test/biomarker would promote accurate and timely differential diagnosis.
“Identify a marker for M.E.”
“A diagnostic test to separate it from chronic fatigue”
Several of the respondents described a general lack of sensitivity on the part of health and social care professionals in their interactions with individuals with M.E.
D “A law to stop abuse from doctors and social services”
E “GPs who believe you when you visit”
It was suggested that education and training should be provided as a matter of urgency to raise awareness of M.E. amongst health and social care professionals.
F “As some doctors don’t believe M.E. exists, there should be compulsory courses for GPs on the symptoms and their effects on patients”
Respondents provided specific details of their own personal disease history and experiences of being diagnosed with M.E. Many indicated that they had experienced long delays in receiving a definitive diagnosis and that this had affected their ability to commence treatment in a timely manner.
G “Ensuring that once a patient is referred to their local CFS/M.E .service that appropriate advice is supplied to stop serious deterioration while waiting for help”
H “I have had M.E. for 28 years now. I have no-one who I go to see, either a doctor or a specialist”
I “Diagnostic help. 1989 M.E. started, 1992/3 diagnosed, 70 next year, still with M.E.”
Several respondents indicated that a lack of awareness of M.E. and delay in diagnosis had impacted on their ability to receive financial support to help manage their condition and remain independent in activities of daily living.
J “Ensuring that people receive benefits so that they can survive”
K “Financial help to pay for help in the home, as those with no-one at all to help with the day to day running of their home, and this is not a luxury – it’s to obtain a reasonable way of living”
Theme 2: risk factors and causes of M.E
It was suggested that research should focus on understanding the risk factors and underlying causes of M.E. Again, respondents indicated that a distinction should be made between M.E. and CFS when prioritising future research funding.
L “It’s obvious to me that the priority is research into the causes of this dreadful illness”
M “Research should concentrate on the biology of severe Myalgic Encephalomyelitis and not the psychology of mild Chronic Fatigue Syndrome”
Respondents demonstrated their awareness of, and support for, biomedical research into a potential immunological/viral association with M.E.
“Immune deficits and viruses”
“Testing for viruses, vitamin deficiencies and food intolerances”
“Gut flora”
“Effects of ageing”
Many respondents emphasised the importance of developing an enhanced understanding of the disease processes underlying their condition.
“Mainly interested in a proper understanding of the underlying disease spectrum”
Respondents also demonstrated their awareness of, and support for, biomedical research into the disease processes underpinning M.E. at a molecular level.
N “Understanding the effect of malfunction in the mitochondria organ in the cell, where all of the body’s energy is created”
“Cellular activity within muscles, dysfunctioning methylation cycle”
Theme 3: drug development and curative therapies
Several of the respondents indicated that research should focus on developing effective interventions for M.E., with a particular emphasis on curative therapies.
“Research into effective treatments and hopefully a cure”
“Treatment or a cure is a priority”
It was suggested that the focus of treatment should move away from psychological therapies, which were felt to have limited benefit for individuals with M.E.
O “I would also like to see much less emphasis on any psychological intervention or therapies. Of course people become depressed – but it’s the illness first and any psychological factors follow”
P “Action for M.E.’s research priorities need to be focused on proper biomedical research and should not be allowed to drift back to funding research linked to the biopsychosocial model proposed by certain UK psychiatrists. This is a dead-end and total waste of precious research funds”
“No CBT or GET as I found it made me ten times worse”
Respondents felt that funding should be invested in clinical trials to develop effective drug management for M.E.
“Immune system studies including treatments with immune modulators such as Rituximab”
“Rituximab, Ampligen and Oxygen Therapy - do they help people with M.E.”