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End piece - Patient voices
In the plethora of views about the research and management of this illness, the authentic voice of the sufferer is rarely heard. For this reason some individual poignant experiences are given below.
"I was eighteen years old when I was struck down with severe, virally-induced ME. I am now thirty-three. It has destroyed my quality of life. My feelings of loss and helplessness are often overwhelming. My parents have to care for me and the illness has deprived me of a career, a social life, and the possibility of marriage and children. I am 90% bed-bound and feel wretchedly ill every waking moment. At worst I am unable to hold a conversation, watch TV, or even read. My only hope is for a research breakthrough in this illness. More than anything else, I want to see ME recognised and a treatment found." Clare
"The worst thing about having ME is, obviously, having ME. It is spending three years in your bedroom looking at the walls, in pain, isolated, unable to read, write, or talk, with a brain like spaghetti. The worst thing is having a brain which no longer works and which I can't do anything about. It's like being in solitary confinement, except that I haven't done anything wrong." Josh
"The feelings of pain and sickness are with me all the time. The illness has changed my life. I can do none of my former hobbies, and am left hanging around on the fringes of a no man's land between the dying and the well. It's a double torture - having the illness and having it unrecognised. It has been said that patients like me should just move on, but after twenty years it seems to me that the only things moving on in this illness are professionals - medical and charitable - making careers out of my misery. A little humility and some humanity by those in the so-called `caring professions' would go a long way towards helping me cope with what has been a truly awful experience." Alex
References
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Abbot NC & Spence VA. The National Research Register and ME/CFS: an analysis by MERGE. February 2002. Available from merge@pkavs.org.uk.
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Postscript by MERGE
This document is the creation of theMERGE staff, Dr Neil C. Abbot and Dr Vance A. Spence. A substantial contribution, including to the production and design, was made by Dr David J. Newton. The sections dealing with social care were prepared following expert advice from Mr William Dockery.
MERGE has links with the 25% ME Group which represents the severest ME sufferers in the UK and this analysis of the CMO report has, in part, been carried out with this particular group in mind. We acknowledge the many patients, carers and concerned professionals from the Friends of MERGE scheme for their contributions and support to the production process.
MERGE exists to fund scientific investigation into the causes and treatment of myalgic encephalomyelitis (ME), to provide information and education about the condition, and to support sufferers. The charity was founded by Dr Vance Spence and Mr Robert McRae, both ME sufferers forced to retire early from their professions. With Roger Jefcoate CBE as its founding patron, and The Countess of Mar as its patron, MERGE obtained charitable status in April 2000 and, after establishing itself successfully, commenced its five-year plan of expansion from May 2001. Ambitiously, we aim to commission and fund a variety of research projects into the pathophysiological basis of the illness, and to establish a social care programme.
Appendix
Following publication of the Working Group's report to the CMO, there was some debate about the future direction of research into CFS/ME in the UK. In particular, great reliance was placed on the "research" evidence documented in the National Research Register.
During a debate in the House of Lords on the Working Group's report on CFS/ME (16th April 2002), mention was again made of the role of the National Research Register in informing policy in this area. Accordingly, MERGE has included the executive summary of its document, Research into ME/CFS in the United Kingdom: Can the National Research Register inform future policy, in this Appendix. Electronic copies of the full document (50 pages, with 39 pages of tables) are available from merge@pkavs.org.uk
Research into ME/CFS in the United Kingdom:
Can the National Research Register inform future policy?
An analysis by MERGE, February 2002 - Dr NC Abbot and Dr VA Spence
Executive Summary
There is presently a debate in the United Kingdom about future direction of public policy regarding research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Energising the debate is an apparent increase in the scale of the problem nationally and, recently, publication of a report by an independent working group to the Chief Medical Officer of England. However, policy must be guided by good data and great reliance has been placed on the UK National Research Register (NRR) of completed and ongoing medical studies as a resource for informing debate. This register is a database of ongoing and recently completed research projects funded by, or of interest to, the United Kingdom's National Health Service. This analysis of the information on ME/CFS contained within the NRR was designed to answer a specific question: given the interest in the development of a research policy for ME/CFS in the medium to long term, is the information contained in the NRR records robust and accurate enough to inform policy-makers?
The total raw number of studies on ME/CFS retrieved from the NRR was 28 ongoing and 133 completed studies (partial records are presented in a 35-page Appendix to this report). From each, the following key data were extracted: Title; End date; Contact person; Principal research question; Sample group description; Funding source and amount. Each record was assigned to an ad hoc "research category" (of interest to researchers), and a "clinical category" (of more interest to the public and policy-makers) on the basis of the professional and/or departmental affiliation of the "contact person".
Of the 161 NRR reports retrieved, 10 appeared not to involve ME/CFS patients directly, and 12 appeared to be duplicates of existing reports. Thus, only 139 (23 ongoing and 116 completed) could be classed as "relevant" reports - representing 0.17% of the 80,000 on the entire NRR database. Eighteen reports (5 ongoing and 13 completed) concerned research in Scotland. Many reports were incomplete: 35% and 31% of ongoing and completed study records, respectively, had missing descriptions of the proposed sample group; 22% and 28%, respectively, had missing details of sources of funding; and the amount of funding received was not stated in more than a half of all entries. In addition, some records had very similar content, despite a difference in "end dates" which varied by up to 18 months, raising the possibility that some records describe extensions of an existing project rather than separate discrete investigations.
When classified by clinical category, 41% of reports had "contact persons" whose professional association was with "psychiatry, psychological medicine or mental health". The second and third largest categories were neurology, neurosciences or neurophysiology (13%) and general medicine/medical care research (12%), respectively. When classified by research category, investigations with some scientific rationale and some relevance to the pathophysiology of the illness constituted the largest group of records (43%), but many of these were smaller exploratory studies (evidenced by relatively small sample sizes) that are unlikely to have given a definitive answer to the initial research question. The main other categories contained clinical trials or other investigations of essentially biopsychosocial interventions (17%), followed by surveys pertaining to biopsychosocial interventions (14%), and surveys of welfare or social aspects (9%).
Given that the amount of funding received was not stated in more than a half of all entries, no definitive conclusions can be drawn from the information on source or amount of funding. However, the clinical category "psychiatry, psychological medicine or mental health" is the most successful in attracting research funding. Overall, however, few public resources (NHS or Research Council) have been directed towards researching this illness.
In conclusion, the NRR records tend to be incomplete; to contain inadequate descriptions of the research proposed; and to have no cross-reference to the results emanating from the research. The records relating to ME/CFS reveal that comparatively little research has been done given the scale of the problem in the UK and that few public resources have been directed towards research, particularly into the pathophysiological basis of the illness. Much of the research undertaken has been led by investigators with a professional or departmental affiliation to Psychiatry, Psychological Medicine and Mental Health, and none of the 139 studies were conducted on the most severely-ill patients.
Given the recent recommendations of the Chief Medical Officer of England that government investment in research on ME/CFS should be comprehensive and include a range of studies designed to "elucidate its aetiology and pathogenesis, clarify its epidemiology and natural history; characterise its spectrum and/or subgroups; and assess a wide range of potential therapeutic interventions including symptom control measures", we conclude that the NRR is not robust enough, as an information source or as a research resource, to inform the direction of future policy.
MERGE: the Myalgic Encephalomyelitis Research Group for Education and Support
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Updated: Thursday, 5 February 2004 6:13 PM EAST