07 January 2010

The topography of scientific enquiry

As the name of this blog suggests, I am aiming to provide a comprehensive reflection of ME/CFS and maintain regular updated information about XMRV as research continues to establish what role it plays in the disease process of ME/CFS. Due to the nature of writing a blog, and regular research updates, I will lack any form of chronological order of information. When the research side of things is quiet, i'll focus more on management strategies, co morbid diseases (such as Fibromyalgia), Support networks and advocacy, and the like. Today, however, looks like a news/research kind of day.

In a previous blog, dated 28 December 2009, the initial findings of the Whittemore Peterson Institute were discussed. This blog will aim to address some of the research findings since then, and attempt to place this in the frame of reference of scientific method and enquiry. Links to media articles and research will be listed at the end of the page.

First of all, in October 2009, the Whittemore Peterson Institute announced (after six months of rigorous review) they had identified a retrovirus, XMRV, as being present in 95% of individuals with ME/CFS. Xenotropic murine leukaemia virus-related virus is a single stranded RNA genome, which originated in, though did not infect, mice (hence the term xenotropic). It is very similar in nature to other mouse retroviruses, which is why it is termed a 'related virus'.

Now, of course, when a study is conducted, there is the initial hypothesis, or question. The WPI conducted research based on a hypothesis that a group of individuals with ME/CFS (meeting the Canadian Consensus and CDC criteria for diagnosis - see references) are much more likely to be XMRV positive than a group of individuals without the ME/CFS diagnosis. They predicted that they would find a relationship between XMRV and ME/CFS, and then designed an experiment that would test this hypothesis, which, of course, led to the results listed above and in the blog entry of December 28th.

When results are released from any study, but especially one as groundbreaking as that done by the WPI, there is a responsibility for the scientific community to respond by replicating the reseach, in efforts to either say 'yes, this result is accurate, solid science that we can trust in and work with', or 'no, this has flaws in it, which means we have to go back to the drawing board; design new study method'. When the initial research results are released, all information regarding how the research is conducted, including hypothesis, subject criteria, and methodology, is made accessible for other scientists so that any replica research that takes place is accurate and reliable. It is inaccurate for researchers to claim they have proven or disproved the findings of a previous study unless they have accurately replicated all aspects of the original study.

A group of scientists in the UK carried out research which attempted to replicate the findings of the WPI, and their findings were released this week. The UK group, scientists from both King's and Imperial universities in London, stated they had found no evidence of the XMRV in a population of individuals who have ME/CFS (Bosely, 2010). What has since transpired is that this paper should not be considered valid, because it fails to replicate the original WPI research accurately (Vernon, 2010).

This is one of a number of research papers which will take place over the coming months. I am attempting to avoid the politics associated with ME/CFS, suffice to say that there do exist biases in this particular field of medicine. However, continued advocacy, education, and accurate information, will empower individuals to promote understanding and acceptance from the medical and scientific community.

Boseley, Sarah. The Guardian. Research casts doubt over US chronic fatigue virus claim. 2010. Retrieved from http://www.guardian.co.uk/lifeandstyle/2010/jan/06/chronic-fatigue-syndrome-xmrv-virus on 07 January 2010.

Vernon, S. CFIDS Association of America. XMRV negative results emphasize need for robust robust replication study. 2010. Retrieved from http://www.cfids.org/cfidslink/2010/010603.asp on 07 January 2010

WPI press release addressing dissimilarities between UK and US findings: http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf

No comments:

Post a Comment