The ME Association is not prepared to confirm the source of its XMRV “prostate cancer” test information
On 6 February, the ME Association put out the following notice:
“Late last night The ME Association was informed that this announcement about XMRV testing does not apply to people with ME/CFS, or suspected ME/CFS. It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday. It will appear here once we have it.”
Note no source for this information.
This morning, Imperial College, London, took down its XMRV Testing webpages and published this notice:
We wish to apologise for any confusion concerning the availability of this test and would like to clarify that it is only available as part of an ethically approved research project. We emphasis that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.
Note no “full clarification” and no explanation of the specific purpose for which this test is intended - only that it is “only available as part of an ethically approved research project” and that Imperial College is “not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.”
So, a test for detection of XMRV in what, precisely?
On Sunday, I emailed Tony Britton, ME Association Press and PR, with a request that the ME Association clarifies the source of its information that:
“It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer.”
A few minutes ago, I telephoned Tony Britton for clarification. Mr Britton says he is not prepared to “reveal his sources”.
I asked Mr Britton if he would confirm or deny whether the information came directly from Imperial College. He will not.
I asked Mr Britton if he would confirm or deny whether the information came directly from Professor Simon Wessley. Again, Mr Britton was not prepared to confirm or deny, and abruptly terminated the call.
Given the paucity of information contained within the notification issued by Imperial College, this morning, speculation if rife.
The ME Association is evidently not prepared to be transparent. How then, without knowing the source, can we decide whether this information might be relied upon or not?
Perhaps in future, if the ME Association is unwilling to provide verifiable sources for information such as this (which is in the public interest) it should think very hard about whether it should be prepared to put that information out in the first place.
So who is the ME Association acting as a spokesperson for?
And why is Imperial College not prepared to be transparent about the purpose of this test?