Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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- 3,061
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Note: Quote from The ME Association document:
XMRV and ME/CFS: WHAT DO WE KNOW SO FAR? AND WHAT DONT WE KNOW? (VERSION 3) (04.11.09)
New Scientist
http://www.newscientist.com/article/mg20427350.400-me-or-not-me.html
ME or not ME
18 November 2009 by John Greensmith, Bristol, UK (Dr John Greensmith PhD) ME Free For ALL (Registration required to view parts of this site)
Your report on Judy Mikovits's study linking a retrovirus, XMRV, to chronic fatigue syndrome (CFS) 17 October, p 6 http://www.newscientist.com/article...-fatigue-syndrome-linked-to-cancer-virus.html), along with the longer online article ( http://www.newscientist.com/article/dn17947-chronic-fatigue-syndrome-linked-to-cancer-virus.html), has elicited cautious optimism in people with myalgic encephalomyelitis (ME).
ME has long been written off as malingering or of psychiatric origin, so there are hopes that the study will be replicated and that effective treatments can be suggested. It is widely accepted that CFS and ME are synonymous and interchangeable. In fact, ME is a discrete neurological illness that has been erroneously bundled into the generic CFS diagnostic basket, which contains several illnesses. Psychiatrists admit that these illnesses are heterogeneous and have a variety of causes, yet the confusion over diagnosis creates a situation in which people with ME lose their identity.
In light of the new study, psychiatrist Simon Wessely said that ME lies "somewhere between medicine and psychiatry". In practice, ME, which should be for physicians to treat, has been swallowed up by the catch-all diagnosis of CFS and dragged into the psychiatrist's clinic.
The problem arising from umbrella diagnoses can be illustrated by considering the effect that a clear diagnosis of ME would have on the findings of Mikovits's study. If every one of the 68 subjects in the sample of 101 people with CFS who tested positive for XMRV had a diagnosis of ME one might come to a different conclusion than if it turned out that none or few of them did. For this reason it is crucial to agree a common universal standard to ensure that we are comparing like with like.
If we use a set of diagnostic criteria more likely to include only people with ME, and insist on the same criteria for every attempt at replication, we would be more likely to achieve valid and reliable results for this condition.
From Hayley Klinger, 25%MEGroup
While people with ME will be delighted to read that a retrovirus could be the cause of their devastating and disabling illness, it is disheartening that the media are still going to the psychiatric profession for sound bites on the subject.
If the discovery proves anything, surely it is to highlight how totally inappropriate it has been to have had psychiatry involved in the study and treatment of ME for so long.
Troon, Ayrshire, UK
XMRV and ME/CFS: WHAT DO WE KNOW SO FAR? AND WHAT DONT WE KNOW? (VERSION 3) (04.11.09)
There is an immediate need for international agreement and co-operation on the research criteria being used to select well-characterised ME/CFS patients for further research into XMRV. Otherwise, we could end up in 2010 with a collection of conflicting results on prevalence because different international research groups have been using different patient selection criteria.
In the present situation, with many research groups reluctant or unwilling to use Canadian criteria, and not having stored samples from patients that meet Canadian criteria, the best way forward may be for everyone to agree to use Fukuda defined CFS. We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.
In the present situation, with many research groups reluctant or unwilling to use Canadian criteria, and not having stored samples from patients that meet Canadian criteria, the best way forward may be for everyone to agree to use Fukuda defined CFS. We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.
New Scientist
http://www.newscientist.com/article/mg20427350.400-me-or-not-me.html
ME or not ME
18 November 2009 by John Greensmith, Bristol, UK (Dr John Greensmith PhD) ME Free For ALL (Registration required to view parts of this site)
Your report on Judy Mikovits's study linking a retrovirus, XMRV, to chronic fatigue syndrome (CFS) 17 October, p 6 http://www.newscientist.com/article...-fatigue-syndrome-linked-to-cancer-virus.html), along with the longer online article ( http://www.newscientist.com/article/dn17947-chronic-fatigue-syndrome-linked-to-cancer-virus.html), has elicited cautious optimism in people with myalgic encephalomyelitis (ME).
ME has long been written off as malingering or of psychiatric origin, so there are hopes that the study will be replicated and that effective treatments can be suggested. It is widely accepted that CFS and ME are synonymous and interchangeable. In fact, ME is a discrete neurological illness that has been erroneously bundled into the generic CFS diagnostic basket, which contains several illnesses. Psychiatrists admit that these illnesses are heterogeneous and have a variety of causes, yet the confusion over diagnosis creates a situation in which people with ME lose their identity.
In light of the new study, psychiatrist Simon Wessely said that ME lies "somewhere between medicine and psychiatry". In practice, ME, which should be for physicians to treat, has been swallowed up by the catch-all diagnosis of CFS and dragged into the psychiatrist's clinic.
The problem arising from umbrella diagnoses can be illustrated by considering the effect that a clear diagnosis of ME would have on the findings of Mikovits's study. If every one of the 68 subjects in the sample of 101 people with CFS who tested positive for XMRV had a diagnosis of ME one might come to a different conclusion than if it turned out that none or few of them did. For this reason it is crucial to agree a common universal standard to ensure that we are comparing like with like.
If we use a set of diagnostic criteria more likely to include only people with ME, and insist on the same criteria for every attempt at replication, we would be more likely to achieve valid and reliable results for this condition.
From Hayley Klinger, 25%MEGroup
While people with ME will be delighted to read that a retrovirus could be the cause of their devastating and disabling illness, it is disheartening that the media are still going to the psychiatric profession for sound bites on the subject.
If the discovery proves anything, surely it is to highlight how totally inappropriate it has been to have had psychiatry involved in the study and treatment of ME for so long.
Troon, Ayrshire, UK