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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I wonder how longed they worked to hone the verbiage in this paragraph:
"But if the research community was underwhelmed, people with the syndrome were not. If true, these findings would have transformed the understanding of the illness and opened up new avenues of treatment. Some saw this as a definitive response not only to those few professionals who, they claim, continue to doubt the reality of the syndrome, but also to the larger number of professionals who believe that, irrespective of causation, rehabilitative treatments can reduce symptoms and disability. It is depressing that the first, untenable, view is too often confused with the second, a perspective that offers hope to patients and is backed by evidence."
...research community underwhelmed????? Not true.
"It is DEPRESSING..." Really? They are depressed that the CFS/ME community doesn't see a difference between the professionals who doubt the reality of the syndrome with those who offer bogus treatments, "backed by science".
Gerwyn;53321]I Think I,m wondering about collusion a doctor in london should know about the controversy re the diagnosis of the condition I am thinking out loud but when did she achieve honarary consultant status and how?
I have had a quick search and came up with the following:
McClure was made Honorary Consultant in Genito-Urinary medicine in 1992.
She gained her Ph.D. from Cambridge and worked for five years for the Institute of Cancer Research. She was awarded a D.Sc in medicine in 2002. At Imperial, she holds the Chair of Retrovirology and heads the section of infectious diseases.
Last year, (not sure of the age of the article, so it may or may not mean 2009) she was appointed Director, Research and Development for St Mary's NHS Hospital Trust.
She certainly isn't underqualified as a researcher!
Talk about a Freudian slip! I thought the original sounded a bit too honest!We misinterpreted an author’s proof comment relating to the eighth paragraph, which should read: Meanwhile, a different strategy is also being considered to reconcile these different findings: that new blood samples should be taken from patients with diagnosed chronic fatigue syndrome and sent to laboratories capable of carrying out the analysis. This is likely to happen [not "This is unlikely to be soon"]
Don't worry Gerwyn. This is not going to happen.I can only plead that people avoid being retested in any lab which cannot show publically that its tests can detect XMRV in blood samples sent by the WPI and go on public record as doing so.
This scenario really frightens me
Sorry Knackered, I was told by a good source that unfortunately the virus was not XMRV.
Charles Shepherd posted this to co-cure today
ME/CFS, XMRV, DSM-V and the British Medical Journal - 6 March 2010
Current issue contents:
This week's edition of the British Medical Journal is concentrating on ME/CFS and XMRV.
Besides having XMRV on the front cover there are seven other items:
1 Editor's choice: 'Let's proceed with caution' by Fiona Godlee.
2 Editorial: 'Chronic fatigue syndrome and human retrovirus XMRV' by Simon Wessely and Myra McClure (p489)
3 Letter: 'More than defeatism greets patients with ME' from Stephanie Munn (p495)
4 Letter: 'Severely affected, severely neglected' from Charles Shepherd (p495)
5 Observations/Medicine and the media: Science, chronic fatigue syndrome, and ME by Cathie Sudlow (p510)
6 Research highlights: Chronic fatigue syndrome and XMRV - reasons why the BMJ fast tracked the Dutch XMRV study and critical comments about the media publicity that accompanied publication of the Science paper in October 2009 (p516)
7 Fast Track Research: Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort (summary of key points on p520)
Up until now many clinical doctors in the UK have not even heard of XMRV and only a few knew about the possible link to ME/CFS.
Things are about to change....
There is also an editorial - 'If accepted, will fan the flames of false positive diagnoses' - on the first draft of DSM-V (p492)
Post by The ME Association: http://www.meassociation.org.uk