Too soon to translate?

"I found this Nature Medicine Editorial very enlightening in view of the recent CCSVI debate. The following are some extracts you may find interesting."


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Too soon to translate?

Nature Medicine 17,  751 (2011), Published online 07 July 2011
An association between a retrovirus and chronic fatigue syndrome has courted controversy since it was first announced. In light of new data discounting this link, medical decisions made on its basis—some of which were encouraged by the patient advocate community—might have been premature.
"Despite undesirable side effects and a lack of evidence of clinical benefit, some doctors have prescribed antiretroviral drugs to patients with CFS on the basis of the observation that antiretrovirals can inhibit XMRV replication in vitro (PLoS ONE, 5, e9948, 2010)."

"Some blood banks have prohibited people with CFS from donating blood in response to an advisory from the AABB (formerly the American Association of Blood Banks), an international association of blood banks, and an advisory committee recently recommended that the US Food and Drug Administration should follow suit."

"All of these measures now seem premature, given the questionable strength of the data supporting them."

"The debate over XMRV's association with CFS has also reached a fever pitch among people with CFS."

"There is currently no accurate diagnosis for CFS; instead, it is clinically defined by what it is not."

"Without a clear definition of the illness and little funding or attention being devoted to a better understanding of the condition, individuals with CFS have felt marginalized by the medical and scientific communities."

"Given that the WPI report pointed to potential therapeutic avenues for CFS, many affected individuals lent support to these findings and lobbied for them to be taken forward to influence clinical practice."

"A key question is whether the WPI findings and their implications were properly understood by the patient advocate community."

"The authors never claimed that XMRV causes CFS; they reported that there was a 'highly significant association' between the two."

"Even if the ongoing NIH study confirms an association, it would not prove a cause and consequence relationship."

"Could the eagerness of CFS sufferers to see their condition taken seriously have encouraged premature translation of the XMRV association?"

"The influence of a passionate advocate community should not be underestimated. The multiple-sclerosis community recently lobbied the Canadian Institutes of Health Research into funding further research into venoplasty as a potential treatment for the condition, despite many experts advising against it owing to lack of clinical benefit and the inherent riskiness of the procedure (Nature, 472,410–411, 2011)."

"Patient advocacy can drive the development of new therapies, but it is also essential to consider how scientists and clinicians can communicate with patients to best meet their needs. For example, some people with CFS fear that discrediting of the XMRV connection could adversely affect CFS research."

"The XMRV and CFS experience has demonstrated that the pressure to find causes and cures for diseases should not overrule the need for scientific proof and validation. There is a delicate balance between being too cautious and delivering medical care to those who urgently need it, but hopefully scientists, clinicians and patients can learn from this example and work together to ensure that the right scientific findings are translated at the appropriate time: once there is sufficient evidence to warrant moving forward."

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"Déjà vu?"