There has been much media publicity lately over a small research study that claims to have made a connection between “CFS,” or "ME/CFS", and a retrovirus. While many are touting this as a huge medical breakthrough, there is a large group of doctors, scientists, patients and advocates who look at this information with tempered enthusiasm.
Why? These people are well-versed on the topic, and realize that before moving forward with great jubilation, more information is required. We realize that this research in and of itself, means precious little, so we have not only adopted a more "wait and see" attitude, but are of the opinion that this research is most likely relatively unimportant in the scheme of things and would not place it anywhere near the top of the list in the arena of much needed new M.E. research. We also worry that this research, and the sensationalism with which it is being reported, will detract from the need for genuine M.E. research.
The following comments from M.E. researchers, patients and advocates may help you understand better the "wait and see" attitude these folks have, and why it is so appropriate.
Additionally, as you consider the following insightful comments, please keep in mind what the Whittemore Peterson Institute itself says about the blood samples used in their recent retrovirus study:
"Dr. Peterson has a repository of samples from the original out break in Incline Village, Nevada which also includes longitudinal samples taken from patients from the 1980's through 2005. None of these samples were used in the XMRV study."
Reference link: WPI website
Thus we actually have no way of knowing if any M.E. patients were involved in the study at all, and that makes the results suspect to those of us who do have M.E. Knowing what we know about the wastebasket label "CFS", it makes us feel that the results of this study may not ever come to have any real value at all for M.E. patients, nor for many of those given a ‘CFS’ misdiagnosis. Perhaps the following comments, taken from an informal group discussion, will shed some light on a few of the reasons we need to consider this research with a healthy dose of skepticism.
Quotes on XMRV by fellow advocates:
“Here's what I think we know & don't know:
1. Patient population
- We know the blood samples were not 100% ME. Samples were from patients with `CFS' according to Fukuda & with `ME/CFS' according to Canadian Definition
- It's possible that some of the blood samples were from ME patients. Some ME patients may be included in the `CFS' group
- So the findings definitely do not apply only to ME. They might apply to ME as well as to other diseases.
- It's not clear what disease(s) the patient population represents.
- The media reports that this applies to ME (e.g. The Independent newspaper in the UK) are wrong.
2. Cause or effect?
- The media are claiming a possible `cause' of `CFS.' However, the article did not say Mikovits et al had found a cause, only that they had found an `association.' The article acknowledged that XMRV might only be a `passenger' virus.
- Mikovits said elsewhere that she is hopeful that XMRV might be the cause of `CFS,' and Cheney said it seemed likely - but they haven't explained why.
- No one has definitely said that XMRV is the cause of anything.
- It could be that XMRV infection is one of the things that is likely to happen when people are very ill, like RNase L dysfunction, like mitochondrial dysfunction, etc etc.
- For all the speculation, no one knows what the association of XMRV with `CFS' means.
3. What disease?
- The findings is that XMRV is associated with 'CFS,' but it has also previously been associated with prostate cancer. XMRV is also associated with leukaemia and lymphoma. So XMRV seems to be associated with a whole range of diseases."
“Sorry to go on about this, but I was just thinking of the...