Yes, it's an interesting question.
I've been ill for 11 years, and I discovered online forums shortly before XMRV hit the news. I've been watching the IiME conference DVDs since the very first conference, and I think they have been an interesting barometer for the state of play in the field of ME.
I constantly learn things about the history of ME, from people who have been ill for longer, so I certainly haven't got a complete grasp of the history, but I've definitely seen the ME research field transform over the past 2 to 4 years.
The XMRV issue seemed to be a turning point, in terms of the amount of research being done. I think this is in part coincidence, but the XMRV research also brought quite a bit of interest to the field from outsiders. The Solve ME/CFS Initiative have commented on this as well, and observed that XMRV brought new researchers into the field. For example, Dr Lipkin became involved directly as a result of XMRV. But other researchers have become involved for other reasons (e.g. Ron Davis's son has ME), so I think that XMRV may have played a part role in the expansion of ME/CFS research but that its timing was probably part of the expansion of research that I've witnessed rather than the direct cause.
When I first became ill there seemed to be an utter lack of meaningful research except for a few isolated clinicians such as Byron Hyde and Dan Peterson etc. doing their small scale investigations with their patients. These were the type of researchers who presented at the early Invest in ME conferences, and they didn't seem to be well-networked with each other or with a scientific/research network. Peterson's network has visibly grown year after year.
When XMRV hit the news that was the only newsworthy research that I remember reaching my radar at the time, but now there is loads of research in the pipeline, and loads of newsworthy researchers involved in the field.
XMRV was a false lead, and Rituximab could yet disappoint us, especially as it's not yet been replicated by any other research team. But the initial findings seem to be quite robust, and the model of illness seems to be widely accepted as having potential.
Having well-resourced, high-status, and world-class researchers such as Lipkin and Davis on the case is definitely new to our field. And the number of researchers in the field seems to be steadily growing. As does the recognition of the illness e.g. from US government bodies such as FDA, HHS and CDC. (e.g. The FDA carried out the "voice of the patient" conference, HHS finally seems to be taking notice of us, and the CDC was beyond a joke 5 years ago but now at least seems to be instigating a serious research program even if not perfect.) I think almost every aspect of our field has been transforming over the last 2 or 3 years, albeit at a very slow pace. Perhaps the media and the medical authorities are the slowest at changing.
So, I would say that things have transformed in the relatively short period that I've been ill, but especially in the past 2 to 4 years, and that things are looking ever more promising. I'm very excited about what's going on, but always disappointed by the pace of developments. Things always take longer than we hope. And I think that new research technology may bring us answers quicker than would have been possible in the past.
People who have been ill for much longer than myself, saw the field change and get much worse years ago, when the field was hijacked by the psychologists. I think long term patients tend not to be optimistic, in terms of politics, because the situation was much better for them when they first became ill and the illness got treated seriously in clinical settings. They saw things change dramatically for the worse.
The clinical picture is probably currently much worse than those days but, even so, I think that the level and quality of research may now be better than then, even if we are still fighting many battles. Also the research technology has changed exponentially over the past decades, so that's a reason for great hope in my opinion. For example, Dr Lipkin made a recent
announcement that he's developed a cheap technology that can detect all known (and some unknown) viruses (that can infect vertebrates) in a blood or tissue sample. This is massively ground breaking stuff, but it's just a single example of the technology available today e.g. to Likin's and Davis's labs.
Just my own thoughts and perspective. Others may have different perspectives.
