25 April 2010

Error Preceeds Truth

 'In all science, error precedes truth, and it is better that it goes first than last' Hugh Walpole

Previous blog entries over the past three or four months, both here and elsewhere, have called upon science to prevail in the endeavor to further identify and understand any correlation between XMRV and ME/CFS.  The blog entry titled 'The Topography of Scientific Inquiry' and 'The Topography of Scientific Inquiry - Part 2' address the necessity of producing replication studies when a new scientific discovery is made, for the purposes of verification.

At this stage of the game, there continues to be dispute over the findings of the original paper published by scientists at the Whittemore Peterson Institute, National Cancer Institute and Cleavland Clinic.  There is a lot at stake, after all.  Money is always a factor, careers will potentially be made or destroyed in the research field, medical arena and even in the journalism profession, based on who covers the story and what bias they take. Insurance companies stand to increase payouts, and at the very center of the debate, the quality of life for those individuals who have a diagnosis of ME/CFS, could be set to improve. Dramatically.

In January 2010, in response to the initial study published by the Whittemore Peterson Institute, McClure, et al published research they had conducted which failed to replicate the results published by the Whittemore Peterson Institute. It has since, however, become increasingly apparent that the McClure et al study failed to replicate the initial Whittemore Peterson Institute study. This also appears true of two further studies, including one published in the Netherlands by Van Kuppeveld et al, which also published a failure to detect XMRV in individuals with a diagnosis of ME/CFS.  Since these publications, the Whittemore Peterson Institute have produced press releases which suggest reasons why none of these studies can be deemed as replications, due to the use of different equipment, different procedures, different cohorts.

But what about if these UK studies did find evidence of XMRV in their ME/CFS cohorts?

'We would also like to report that WPI researchers have previously detected XMRV in
patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the
completion of their own studies, as they requested. We have email communication that
confirms both doctors were aware of these findings before publishing their negative
papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive
patient sample to determine if his testing procedures could in fact detect XMRV in a
positive blood sample before he published his paper. We wonder why these materials
were not used in his study which also failed to detect XMRV.'(Whittemore Peterson Institute, 2010).

'The negative studies were technically flawed in that their methods were demonstrated NOT to be capable
of detecting XMRV. Their patient populations likely did not satisfy CCC criteria and they looked only by PCR on genomic DNA the least sensitive way of detecting XMRV. To date none one has attempted to replicate our study. It is very clear that the prevalence of XMRV in UK is NOT ZERO and that XMRV has been detected in CFS patients in the UK. (Whittemore Peterson Institute, 2010).

Meanwhile, we are beginning to see the emergence of the initial findings of the Whittemore Peterson Institute into the mainstream.

We are now reading about bans being put in place on blood from donors who have or who have had diagnosis of ME/CFS. Please refer to the blog entry dated April 23 2010, 'A Question of Blood'.

A study published in the Journal of Virology, titled: Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by APOBEC3 Proteins and Antiviral Drugs, indicates that the use of antiretroviral drugs such as Tenofovir, AZT and Raltegravir, currently used in the management of HIV, would possibly be effective against XMRV infection (Paprotka T, 2010).

The pharmacutical company, Glaxo Smith Kline, has announced that they are funding a replication study that will attempt to replicate the Whittemore Peterson Institute's XMRV findings.  “Ethics board approval is pending, but we expect this study to begin shortly. GSK will obtain specimens for this study from [patients diagnosed by] Hunter-Hopkins Center (Charlotte, NC) as well as Drs. Klimas (Miami), Bateman (Salt Lake) and Gluckman  (Philadelphia) in order to sample subjects from diverse geographic locations. Samples will be provided anonymously by the new SolveCFS BioBank, recently funded by the CFIDS Association…” (Prohealth, 2010).


Paprotka T, et al (2010). Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by APOBEC3 Proteins and Antiviral Drugs. Retrieved 25 April 2010 from http://www.ncbi.nlm.nih.gov/pubmed/20335265

Prohealth (2010). Dr. Lapp’s News Re: New XMRV Study, ME/CFS Blood & Tissue Bank, Ampligen® Study. Retrieved 25 April 2010 from: http://www.prohealth.com/library/showarticle.cfm?libid=15255&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews

Whittemore Peterson Institute (2010). Letter to McClure. Retrieved 25 April 2010 from http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf

Whittemore Peterson Institute (2010). Q&A with Judy Mikovits. Retrieved 25 April 2010 http://www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf

23 April 2010

A question of blood.

It has been a while since the last blog entry, not due to lack of developments and newsworthy events in the ME/CFS and XMRV arena, however.

This month has so far seen the beginning stages of a reaction by public health officials to the Whittemore Peterson Institute research findings of October 2009, in which a retrovirus, XMRV, was identified as having a potential connection with the disease process of ME/CFS. Of course, many of us have since witnessed the follow up studies carried out in Europe which have failed to replicate these findings, however please see earlier blog entries regarding the reasons why these fail to contend as replication studies.

Up until this point, people with a diagnosis of ME/CFS have not faced great scrutiny, at least in New Zealand, with regards to donating blood.  Granted, during an ME/CFS relapse, the majority of individuals, due to the symptoms of the disease, may choose, understandably, not to donate blood.  Some may be advised by members of their respective medical team, not to give blood, on account of the potential further detriment to health and wellbeing.  

This makes a lot of sense, because there is notable evidence to say that individuals with ME/CFS have a reduced circulating blood volume compared to healthy controls (Bell, s., 2000), which would obviously be further reduced by the donation of blood.  Specifically, one of the signs associated with a diagnosis of ME/CFS, Postural Orthostatic Intolerance (low blood pressure upon transfer from lying to sitting, sitting to standing etc) would be further exacerbated by giving blood. Some individuals with ME/CFS have difficulty even with blood draws for testing, let alone a full donation. (Please refer to the Canadian consensus document, and the links at the end of this entry,for further information specific to Orthostatic Intolerance).

At the end of the day, despite the detriment to the health of these individuals, up until now, individuals who have, or who have had, a diagnosis of ME/CFS have not been rejected specifically for the purpose of public safety because of their illness status.  This, we can now see, is beginning to change. In Canada, earlier this month, a lifetime ban was placed on any individual who had a past or present diagnosis of ME/CFS (Toronto Sun, April 07 2010). This was followed soon after by New Zealand (Stuff.co.nz, April 21), and blood donor policy is currently under review in Australia with regards to ME/CFS.  These moves appear to have been instigated by the findings published in the Science Journal in October 2009, which identify a potential link between XMRV and ME/CFS.

At this stage, both Canadian and New Zealand authorities are stating that this is a precautionary measure, we still don't have that replication study of the the initial research conducted at the Whittemore Peterson Institute.  However, if XMRV does have a role to play in ME/CFS, then the hypothesis of transmission of the retrovirus by the Whittemore Peterson Institute, is that 'XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. (It is not known whether XMRV is more easily transmitted than other human retroviruses).' Whittemore Peterson Institute, 2010.
It shall certainly be interesting to see if the moves made so far by both the Canadian and New Zealand Public Health authorities, begin a domino effect, and increased perseverance by the medical community to act on the findings of the Whittemore Peterson Institute, and follow up with some replication studies.

On another note, I am planning to write a blog entry on the letter sent by the Whittemore Peterson Institute addressing the McClure et al study, which failed to identify XMRV in individuals with ME/CFS. In the meantime, I have put a link up to the letter itself.


Bell, S., 2000. Circulating Blood Volume in Chronic Fatigue Syndrome. Retrieved April 23 2010 from.http://www.ncf-net.org/library/Bell-StreetenJCFS1998.htm

Atkinson, K., 2010. Chronic Fatigue Donors face Rejection.  Retrieved April 23 from: http://www.stuff.co.nz/national/health/3607226/Chronic-fatigue-donors-face-rejection

Spencer, C., 2010. Chronic Fatigue Sufferers Can't Give Blood. Retrieved April 23 from:  http://www.heraldsun.com.au/news/breaking-news/viral-link-to-chronic-fatigue-sparks-blood-donor-review/story-e6frf7jx-1225856015325

Rose, D., (2010). Viral Link to Chronic Fatigue Sparks Blood Donor Review. Retrieved April 23 from:  http://www.heraldsun.com.au/news/breaking-news/viral-link-to-chronic-fatigue-sparks-blood-donor-review/story-e6frf7jx-1225856015325