Boy, George...
...that's awesome! I had completely forgotten the case was so strong on this one! This is gonna be a breeze!...
I'm going to proof it in this post and edit it here so you can more easily compare the two and continue to edit; I'll put what I have so far into post#2 as well. Comments/queries in red. Style I'd like to aim towards is as terse, matter of fact, to the point as possible...so things will get trimmed a bit, but without losing any significant content. Here goes...
MYTH: The WPI has been irresponsible in the way it has encouraged patients to pay for XMRV tests, even though the relevance of XMRV is, as yet, unknown.
["patients" and "pay" were my words, what would be more appropriate? Would be good to get an actual quote for this myth - ERV may be able to oblige...]
FACT:
1. No member of the WPI has ever made a statement asking, encouraging or soliciting ME/CFS "patients" to "pay" for XMRV testing, but has instead encouraged patients to join studies. ["never" had better be true, or one referenced quote to the contrary would undermine the whole FAQ...]
2. XMRV testing will inevitably be offered by some private lab regardless of what any group or agency may want. The WPI released their test in response to the release of a test by Co-Operative Diagnostics Ltd.
3. Laboratories offering testing will of course charge for testing to cover their expenses.
4. A significant subset of the ME/CFS patient community is both ready and willing to pay for testing, in full knowledge that the WPI's findings have not yet been independently replicated.
5. Providing WPI-licensed testing discourages other companies from offering over the internet tests that may or may not be consistent with the WPI methodology for detecting XMRV in ME/CFS patients.
Dr. Judy Mikovits (Director of Research at WPI) has repeatedly told lecture audiences to wait, and to sign up for studies in order to receive free testing in a controlled environment. Other members of the WPI staff - including Dr. Daniel Peterson, Annette Whittemore and Dr. Vince Lombardi - have also encouraged members of the patient community to enroll in studies until more information becomes available about the virus itself and whether or not the virus is truly associated with CFS. [Would be cool to have some references or quotes on this].
Dr. Coffin and Dr. Peterson discouraged individual patient testing at the CFSAC meeting on October 29th 2009, as did Dr. Nancy Klimas in her review of XMRV on November 7th 2009 (read more). Dr. Klimas encouraged patients to participate in studies but discouraged patients from testing privately.
On October 26th 2009 Cooperative Diagnostics [Ltd?] (a private company not associated with the WPI) put out a press release and began offering an XMRV test kit (read more). This move seems to have prompted the WPI to quickly license its research test methodology to Viral Immune Pathology Diagnostics Laboratories (VIP Dx) but Cooperative Diagnostics was the first company to offer a test to the general public.
[Might want to cut this bit on Clongen, not directly relevant to the question and the tighter we can make this FAQ, the better it will be]
[My additional concluding remark follows...]
Further comments:
Many patients find it extremely patronising to be told they are being exploited by the WPI and should wait before more information is available before testing for XMRV. Patients aware of how to obtain a test for XMRV are also fully aware of the situation regarding the research and the fact that the WPI's findings have not yet been replicated by a second research team.
Through such tests, UK patients in particular were able to confirm that the WPI's tests do indeed indicate the presence of XMRV in ME/CFS patients in the UK - contradicting the suggestion by Prof. McClure and others that the discrepancies between earlier studies may indicate that XMRV is not present in Europe. This patient-led finding has made a very significant contribution to the early debate about the potential implications of WPI's research.
Indeed the reporting of such findings in the national press are a sign of the revolution in patient-led research that is represented here. After experiencing decades of failure by the scientific community to undertake biomedical research into their illness, many ME/CFS patients are frankly not terribly interested in being told that they ought not to use their own money to seek the answers they are denied by traditional authorities. If members of the medical research community want to blame anyone for this modern phenomenon, perhaps they should look closer to home.
...that's awesome! I had completely forgotten the case was so strong on this one! This is gonna be a breeze!...
I'm going to proof it in this post and edit it here so you can more easily compare the two and continue to edit; I'll put what I have so far into post#2 as well. Comments/queries in red. Style I'd like to aim towards is as terse, matter of fact, to the point as possible...so things will get trimmed a bit, but without losing any significant content. Here goes...
MYTH: The WPI has been irresponsible in the way it has encouraged patients to pay for XMRV tests, even though the relevance of XMRV is, as yet, unknown.
["patients" and "pay" were my words, what would be more appropriate? Would be good to get an actual quote for this myth - ERV may be able to oblige...]
FACT:
1. No member of the WPI has ever made a statement asking, encouraging or soliciting ME/CFS "patients" to "pay" for XMRV testing, but has instead encouraged patients to join studies. ["never" had better be true, or one referenced quote to the contrary would undermine the whole FAQ...]
2. XMRV testing will inevitably be offered by some private lab regardless of what any group or agency may want. The WPI released their test in response to the release of a test by Co-Operative Diagnostics Ltd.
3. Laboratories offering testing will of course charge for testing to cover their expenses.
4. A significant subset of the ME/CFS patient community is both ready and willing to pay for testing, in full knowledge that the WPI's findings have not yet been independently replicated.
5. Providing WPI-licensed testing discourages other companies from offering over the internet tests that may or may not be consistent with the WPI methodology for detecting XMRV in ME/CFS patients.
Dr. Judy Mikovits (Director of Research at WPI) has repeatedly told lecture audiences to wait, and to sign up for studies in order to receive free testing in a controlled environment. Other members of the WPI staff - including Dr. Daniel Peterson, Annette Whittemore and Dr. Vince Lombardi - have also encouraged members of the patient community to enroll in studies until more information becomes available about the virus itself and whether or not the virus is truly associated with CFS. [Would be cool to have some references or quotes on this].
Dr. Coffin and Dr. Peterson discouraged individual patient testing at the CFSAC meeting on October 29th 2009, as did Dr. Nancy Klimas in her review of XMRV on November 7th 2009 (read more). Dr. Klimas encouraged patients to participate in studies but discouraged patients from testing privately.
On October 26th 2009 Cooperative Diagnostics [Ltd?] (a private company not associated with the WPI) put out a press release and began offering an XMRV test kit (read more). This move seems to have prompted the WPI to quickly license its research test methodology to Viral Immune Pathology Diagnostics Laboratories (VIP Dx) but Cooperative Diagnostics was the first company to offer a test to the general public.
On learning of the Co-operative Diagnostics test, Cort Johnson contacted the WPI in an effort to find out whether the WPI would offer testing to the public. He posted this response on October 26th: (read more)From post#3: [What does post#3 refer to? Anyway, this quote doesn't add much, I'm inclined to cut it, or at least just reference or link to it from the previous section above eg see post#3 here]
The Simplex XMRV test identifies patients infected with XMRV. XMRV has been recently identified in 95% of Chronic Fatigue Syndrome patients, in addition to large numbers of patients with Fibromyalgia, Atypical Multiple Sclerosis, and other clinical conditions. Cooperative Diagnostic’s XMRV assay is the first diagnostic for the virus to be made available to the public.
Two days later, on October 28th, VIP Dx made available on their web site two tests: a PCR test and a culture test. (The testing acceptance was made retroactive [?? "retrospectively dated ??"] to October 23rd, which created some confusion as to who actually made the test available first. (read more ) ). A statement from the VIP Dx web site indicated that VIP Dx were orientating the test to the physician:The WPI has developed a blood test for the detection of XMRV and we are currently negotiating an agreement with a clinical laboratory to allow for limited testing. These services will be made available as soon as possible and we will provide information on this site as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back here for updates.
No word on which lab to use. (gotta change my website!)
In January of 2010 a new lab called Clongen Laboratories began offering an XMRV test (read more). To date no one has used this lab that I know of and no results are available on their web site.VIP Dx is committed to providing quality clinically relevant tests, accurate, timely results and excellent customer service to aid the physician in diagnosing and managing chronic viral and immune mediated diseases.
We are very excited about our latest technology and new XAND test menu.
[Might want to cut this bit on Clongen, not directly relevant to the question and the tighter we can make this FAQ, the better it will be]
[My additional concluding remark follows...]
Further comments:
Many patients find it extremely patronising to be told they are being exploited by the WPI and should wait before more information is available before testing for XMRV. Patients aware of how to obtain a test for XMRV are also fully aware of the situation regarding the research and the fact that the WPI's findings have not yet been replicated by a second research team.
Through such tests, UK patients in particular were able to confirm that the WPI's tests do indeed indicate the presence of XMRV in ME/CFS patients in the UK - contradicting the suggestion by Prof. McClure and others that the discrepancies between earlier studies may indicate that XMRV is not present in Europe. This patient-led finding has made a very significant contribution to the early debate about the potential implications of WPI's research.
Indeed the reporting of such findings in the national press are a sign of the revolution in patient-led research that is represented here. After experiencing decades of failure by the scientific community to undertake biomedical research into their illness, many ME/CFS patients are frankly not terribly interested in being told that they ought not to use their own money to seek the answers they are denied by traditional authorities. If members of the medical research community want to blame anyone for this modern phenomenon, perhaps they should look closer to home.