t's not strange at all. The ME/CFS community is not generally fixated on tick-borne infections because there are soooo many other possible triggers and causes. Many of us have no reason whatsoever to suspect the involvement of tick-borne pathogens. Tick-borne pathogens may be a trigger for some ME/CFS patients, but I could list you a hundred other implicated infections, pathogens, chemicals, toxins, vaccines, and other potential trigger events. Looking at the community as a whole, tick-borne pathogens are highly unlikely to be the answer, although they could very well be a part of the answer, alongside all of the other myriad potential triggers. Your acute interest in tick-pathogens isn't mirrored by the community for good reason; it's not a casual dismissal of the issue. By all means advocate for your personal interest, but please be careful about dismissing other valuable research projects (that can have enormous value for the community) simply because they don't prioritise your specific narrow field of interest.
Sorry, I feel compelled to address this more.
I do not think TBD's are THE answer. Nor have I even hinted at that in this thread. I think TBD's, including Lyme, have a similar likelihood of triggering ME/CFS as EBV and HHV-6 and Coxsackie A & B, etc. PERIOD. I think it is important that you know I test high or positive for ALL of those. I also am out of range low for NK cell function. I satisfy the CCC and the ICC criteria for ME/CFS, and have been diagnosed by TWO leading, and world-class ME/CFS specialists as having ME, and as also having Lyme. I could lean just as strongly on EBV or HHV-6 as the most likely causes (Hello! B-Cell infection!), as any of seven Tick-borne diseases. I am straddled between two controversial camps, and each holds an odd disdain for the other, and I love and am loyal to both.
It is very different in the US than many parts of the world. Lyme is a big deal here, as are the polemics surrounding it. Its history is full of deceit and posturing. Science has been far too often trumped by legacy concerns and patents and fear of litigation - and now unilateral legislative efforts. In the US, Lyme is the Perfect Storm.
I do not believe that is the case in the UK, and in many other countries. The reason is pretty straightforward - the United States is ground zero for the Lyme Wars.
We also are the starting place for CFS, and all that massive deceit and collusion that emanated from that appalling label. Yes, the world can thank us for that, too.
So when you take Lyme and force it into a tight space with ME/CFS, friction between two great masses of conflict can occur. US researchers know this and cannot escape it. This is not a criticism of them; it is simply an observation that is difficult to adequately counter. Moreover, neither camp wants anything to do with the other, except to point fingers. Yet they are inextricably linked, like the moon to the earth. The fact that ME/CFS research cannot escape unscathed the nasty gravitation of Lyme simply IS. It is what it is, and I can almost guarantee that researchers in each camp are painfully aware of this at times.
Here, at least in the Lyme community, sides are taken, and it is near impossible not to take one. The Old Guard Lyme cabal want every one to think ME/CFS and Fibro have nothing to do with Lyme. There is pressure out there for researchers to conform to this. It is a fact of life. But I think you all can appreciate this dilemma confronting researchers: It must be very difficult to buck the currents and adopt either one of these orphan diseases - can you imagine having to deal with the fallout from both?
So when you examine a given researcher's efforts, and if they involve or should involve Lyme, it is challenging not to acknowledge a respective side that researcher appears to have embraced. If his/her research reflects such an association, and you think, influence, how can you not volunteer that? Again, it is pervasive in the US, and to pretend otherwise borders on the disingenuous.
To some outside of the US, this may seem like an ad hominem attack. Here, it is status quo, as a given allegience in the Lyme Wars might explain, at least in part, methodology, study inferences and conclusions and more.
I give equal weight to TBDs as agents in ME/CFS - as equal (I hope) as all those others
@Bob noted. But when they are not given equal weight in research projects, I grow concerned because I know what influences might be at play. They need to be included because Science too often has taken a back seat to politics here in the US, both in Lyme and in ME/CFS. Lyme has been misrepresented in the ME/CFS world, and I promise you that ME/CFS has been misrepresented in the Lyme world.
I think we need to negotiate that ignorance and misinformation to mitigate it, and the ones we do the negotiating with may just be the researchers.