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Defeatism is undermining evidence that chronic fatigue syndrome can be treated:
Reading this piece, I thought reading the title that perhaps our british doctors had a change of heart. But no!!! They want us all to do CBT and GET. This is really insulting and annoying. What kind of evidence do they get that indeed CBT and GET works?
British Medical Journal Editors, please read the recent studies from Lombardi, and all the evidence that has accumulated over the years that ME/CFS is an organic disease. Please open your mind to the possibility of a retrovirus. Imperial College had a biased perspective and different scientific techniques and failed to find XMRV in any of their 186 samples. Does it mean they are right? Obviously not, because there are some XMRV + patients in LK already, and somebody out there is donating blood not knowing they are infected with this retrovirus.
May Lynn and Sophia's deaths have not been in vain. It's time for serious research now.
Public release date: 10-Feb-2010
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Contact: Emma Dickinson
edickinson@bmjgroup.com
44-020-738-36529
BMJ-British Medical Journal
Defeatism is undermining evidence that chronic fatigue syndrome can be treated
Editorial: Chronic fatigue syndrome
An air of defeatism exists within the medical profession about chronic fatigue syndrome that is undermining evidence that it can be treated, argue three senior doctors in this week's BMJ.
The recent acquittal of Kay Gilderdale, who had been charged with the attempted murder of her 31 year old daughter Lynn, has led to blanket press coverage. Yet Alastair Santhouse, consultant at The South London and Maudsley NHS Foundation Trust and colleagues from Institute of Psychiatry, King's College London, argue that the media has largely portrayed the condition as a progressive, paralysing, and commonly fatal illness, and little has been said about the uncertainties and controversies that this diagnosis has always attracted.
While not commenting on this specific case, the authors point out that severe presentations of chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) such as that of Lynn Gilderdale are unusual, and that, if a diagnosis of CFS/ME is made, data clearly show that mortality is not increased.
The greatest risk to life is likely to be suicide, they explain. And this is often linked to depression that can be effectively treated.
Treatments such as cognitive behavioural therapy and graded exercise therapy have also been shown to work in CFS/ME and are recommended by the National Institute for Health and Clinical Excellence (NICE). In patients with severe CFS/ME, such programmes may be prolonged, but they can be the trigger for improvements and sometimes dramatic recovery, add the authors.
In contrast, the alternative to treatment is often no treatment, and this can have a disastrous effect on the patient, who may feel that the medical profession has given up on them as a hopeless case, they warn.
Undoubtedly current treatments could be improved, recovery may not be complete in many cases, and access to services for those too disabled to attend hospital clinics needs to be improved, they write. Furthermore, doctors are often uncertain about what they are dealing with, and perhaps inevitably a breakdown of trust between doctors and the patients and their families often occurs.
But they believe that the medical profession must continue to go with the evidence in choosing treatments, in what can be a fraught clinical situation. "We owe it to our patients and to our professionalism to do what we can to help those with this potentially treatable condition because, notwithstanding the difficulties, this is our primary duty," they conclude.
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Reading this piece, I thought reading the title that perhaps our british doctors had a change of heart. But no!!! They want us all to do CBT and GET. This is really insulting and annoying. What kind of evidence do they get that indeed CBT and GET works?
British Medical Journal Editors, please read the recent studies from Lombardi, and all the evidence that has accumulated over the years that ME/CFS is an organic disease. Please open your mind to the possibility of a retrovirus. Imperial College had a biased perspective and different scientific techniques and failed to find XMRV in any of their 186 samples. Does it mean they are right? Obviously not, because there are some XMRV + patients in LK already, and somebody out there is donating blood not knowing they are infected with this retrovirus.
May Lynn and Sophia's deaths have not been in vain. It's time for serious research now.