“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?
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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?”
'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.'This is a half-truth. The lobbying is true, and I believe from my own experience that it is justified. BUT‘The scientists who advised the federal government to go ahead with clinical trials for a controversial new treatment for multiple sclerosis say it was new evidence — not public pressure — that changed their minds. “The presence of advocacy groups certainly made me aware that there were a lot of people that want this procedure, but that did not pressure me. It did not influence me in any way, pro or con, to support the idea of doing the (small-scale clinical) trial,” said Barry Rubin, a vascular surgeon at Toronto General Hospital.’http://www.thestar.com/news/canada/politics/article/1017876–scientists-explain-about-face-on-ms-trialsAlso EVB is also ‘an association’, as is vitamin D etc. This does not necessarily mean that they are not valid areas of research.
PS. You tweeted that you were on holiday – no rest for the wicked! 😉
Sadly, Prof G never let's the facts get in the way of a good story on this issue
RE. Poll: What would be your priority for MS Research money? Putting CCSVI in this poll does not make any sense. You didn’t single out any other specific research area, such as EBV. CCSVI could fit into many of the ‘options’ or none. Research is now being done. This is very welcome. The objection I have is that this took so long to happen and that the field of neurology has been so unconstructive in this area. I can’t imagine anybody thinking that all research money should just go into CCSVI. This does not mean that funding and time spent researching this area is not important.
Re: "Putting CCSVI in this poll does not make any sense. You didn’t single out any other specific research area, such as EBV."I agree, you are probably right on this one. I did it simply because this was the sort of choice the Canadian and Italian MS Societies, and the NMSS in the US, have had to make. Unfortunately, the funding pot is not bottomless so money spent on a special call, such as CCSVI, reduces money spent on research in other areas.
If the poll had been 6 to 12 months ago maybe it would have different. Then precious little was going on researching the presence and treatment of CCSVI and I would have considered it a short term priority above other things, just to get some answers ASAP.RE. The original post:It is important for you to note that the Canadian Institutes of Health Research said it was new evidence, not public pressure, which prompted their trial.