Peter W On March 30, 2011:
I can see you are trying to make sense of this situation but are missing the key bit of the puzzle and the history. Does this help? -
First, the difference between clinically diagnosed ME/CFS and “patients claiming to have chronic fatigue syndrome”. At the link here you will find the Canadian Consensus Criteria for ME/CFS http://www.cfids-cab.org/MESA/ccpc.html.
This clinical definition is not focused on fatigue, is not vague, is not entirely subjective, does not easily allow overlap with other conditions; and is not something a person could “claim to have”. It represents the collective experience of hands-on clinicians.
You are correct that some CFS studies do indeed use “self report” or non-specific instruments to determine their study cohort. Here is a link to Prof. Jason’s study demonstrating how non-specific the CDC’s survey criteria are http://dps.sagepub.com/content/20/4/251.abstract.
Unfortunately the use of “self reported claims of having CFS” and non-specific survey instruments is not the domain of the patients. It is the domain of those research groups with a bloody-minded determination to define Chronic Fatigue Syndrome as general, vague condition with multiple causes.
It is this issue that drives the rage of patients losing their lives to this condition. This issue predates XMRV by 20 years and the latter just happens to be the visible end of it right now.
So far all studies that have found murine derived viruses in CFS patients (eg. the original Science study, the FDA/NIH study, the Cornell University study) have looked at cohorts that reflect the clinical reality of the consensus criteria (or at least the Fukuda definition).
One of the early negative studies (unbelievably) used patients “claiming to have CFS”, derived from a random telephone survey. And proclaimed this as “lack of association…of XMRV”
Hypothetical:- if a study of cancer and viral infections was published and you found out that the cancer patients were found from a telephone survey, would you take it seriously? And, would you trust a study looking for viruses that specifically excluded persons that showed signs of possible viral infection such as sore throat and tender lymph nodes would you take it seriously?
Neither do patients have confidence in the conclusions of research groups that make all sorts of technical claims, but can’t understand or deliberately ignore basic logic issues like the ones above.
Fortunately the quality of studies seems to be improving as you note. And fortunately there seems to be more involvement from researchers that demonstrate attention to detail by articulating the issues and seriousness of the illness. These are trusted.
“Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease
and CFS” http://www.cfids.org/research/proteome-analysis.pdf