Recently, a forum member wrote to me:It seems to me that you think that if XMRV doesn't work out then we or you are doomed. I don't feel that way and I'm sorry that you're in that position. Other than cataloguing this comment under "callous and unempathetic", my immediate reaction was: ????? I've had strokes, and biopsy-confirmed viral heart disease associated with my ME/CFS. My vasculitis symptoms resulting from my opportunistic parvovirus B19 infection have been proven on heart biopsy/PCR/immunohistochemistry. I know how real my health risks are. And I'm under 50. But I've only had this disease for 11 years. What about the scores of patients on this forum who have had this disease for 20, 30 years. Who are showing gamma t-cell clonal rearrangements, or outright lymphomas? Who have regular angina? Shortness of breath? Frothy bubbles coming from their lungs? Foot drop and facial droop, and other signs of stroke? The stark reality is that if XMRV doesn't work out - and if no other viable treatment comes within the next 2,3,5, 10 years - many of us could indeed be doomed. And what about the people who have lost 2 or 3 decades from their lives, and are facing old age... isn't a sense of urgency understandable? Missing: A sense of urgency So that's how I put my finger on it. This person doesn't share a Sense of Urgency on the need by legions of ME/CFS patients for urgently rapid, effective treatment of this neuro-immune disease. I wonder if this might be one reason why some patients don't see eye-to-eye on various issues. Could discussion on a Sense of Urgency bring about some rapprochement in attitudes, so that we advocate with a stronger, more effective voice for our community? Now firstly, I don't want to incite a pi$$ing match on who is sicker than whom. But I am laying down a challenge for those of us blessed with better health, to empathize with the fact that early mortality is a known finding in this disease. Just check out the early mortality threads: Life Expectancy and CFS/ME http://www.forums.aboutmecfs.org/showthread.php?5485-Life-Expectancy-and-CFS-ME A discussion on dying from cfs or cfs-related causes http://www.forums.aboutmecfs.org/sh...ssion-on-dying-from-cfs-or-cfs-related-causes It is clear that there may be many subsets of "CFS". And there may be differing senses of urgency among these subsets. Does that invalidate a Sense of Urgency for those who are desperately ill? And might it be wise - indeed prescient - for milder cases of ME to invest in the possibility of a sicker future - or at the very least to cultivate some empathy - by understanding this issue? So this raises a few questions: Why should patients/advocates/researchers/policy makers have a Sense of Urgency in this quest for effective biomedical diagnostics/treatments and/or a cure for ME/CFS? When the media, advocates, or other stakeholders don't have a Sense of Urgency: What are the consequences? What can patients constructively do? How can we provide a nuanced approach to Sense of Urgency in the various potential subgroups of ME/CFS, so that we don't go overboard with one end of the spectrum, while respecting that mortal risks of ME can be very real at the other end? Bottom line, I would welcome thoughtful comments on whether it is possible for us to arrive at some intelligent, empathetic, common ground, so that as a group we understand that some patients with ME/CFS have dire Sense of Urgency - for good, fact-based reason. And this Sense of Urgency creates a critical lens, and context, which guides our approach to advocacy. If there is strength in numbers, it worries me that some advocates don't "get" the sense of urgency issue. How can we help them to help our movement as a whole? How can we create intelligent cooperation rather than unnecessary conflict on this issue? Parvo P.S. One thing I would ask: this thread is not intended to spark debate on whether the neuro-immune disease ME/CFS is psychogenic. If you believe it is, I would ask that you start your own thread up elsewhere.