Founder of Health Rising and Phoenix Rising
What a great message Tony...I think you are correct - that physiological research mostly done in the U.S (but also Canada, Australia and the UK - Julia Newton et. al) will put an end to this bias and open windows that cannot be closed. I hope that the Clinical Center study and Ron Davis's study will have such significant findings that even the UK cannot ignore them...Good luck with your health!I registered a couple of weeks ago and haven't had time to tell my full story yet. Will do. In short, after a lifetime of regular (one ,often two per year) viral flu-like infections I started to develop mild but progressive ME (towards end of 90's), with continuing regular viral attacks. From around 2004 I had 2 bouts of noro virus per year until 2010 when although my youngest brought the virus home from school I did not catch it. Since then I catch nothing even when other family members are sick. This new-found immunity might seem good news but it has corresponded with ME symptoms becoming much more severe and in particular daily cognitive dysfunction has replaced the occasional fog previously experienced. I feel my brain is physically sick although routine scans reveal nothing abnormal. So it has been a long slow decline for me with the occasional more pronounced drop in functionality form which I never recover fully.
I thinks its fair to say that because of a slow onset of ME, together with the demands of raising 4 children, I kept away from the ME community. Perhaps there was also an element of arrogance that I couldn't see how I could possibly end up disabled by this, like them I guess. However over the last year I have come to realise that if i continue to decline then there may be serious implications for myself and the family. Hence I have spent the last few weeks catching up with what is happening to and for other sufferers of these awful diseases.
Here in the UK, sufferers in England have treatment options of GET/CBT or little else and here in Wales (3 million people) there are currently no services, although the Welsh assembly (the devolved government) has directed health boards to start developing treatment pathways based upon that in England i.e GET/CBT. There are some small charities involved in lobbying for government research funding and some fund small research projects directly. There is plenty of mistrust and anger towards the medical establishment here. A glance at the NICE response following their 'victory' over sufferers in the courts has my blood boiling very quickly. So in Wales we face the prospect of GET/CBT coming to a nearby hospital and perhaps also the prospect of pressure to cooperate for fear of loosing state benefits.
So from where I am sitting, US research offers the only current hope for identifying the molecular basis for our disease(s). Until the void that is the absence of a credible medical model for ME/FM is filled, then psychiatrists/psychologists will have too much space/freedom to air their more subjective opinions on our disease(s) and in the process (unintentionally) causing hurt to some very vulnerable people. We need hard objective science to come to our rescue and I do believe that we will have detailed pathology/assays as a result of the 21st century science planned and the subsequent expansion of molecular science in this field which will follow.
As someone who worked in biological research for 15 years these guys are entitled to have their say, that is their training and science works by open discussion. The fault lies in the previous lack of funding for expensive molecular science which has produced a bias towards inexpensive, more subjective, research. In the absence of answers to the riddle of ME the problem is that world wide media will look for a simple, clear answer to report. For example our Daily Mail stated a while back that following a report that two further viruses had been ruled out of involvement in ME it is somehow more likely that this is a mental-illness, helping to strengthen the myth among the general public.
Yes there is plenty to feel angry about but I believe that if the US gov/agencies stick by their words then this bias will be corrected eventually and dignity will be restored to ME/FM sufferers worldwide.