Just because you're paranoid...
...it doesn't mean they aren't out to get you...
Marco, another superb post,
you are writing here about the most important and urgent issue that we
must get organised around - in just the way you describe - if we are to avoid the risk that history repeats itself and the door is slammed in our faces once again.
There's a natural tendency to think that science is always rigorous, fair and objective but in reality science is all too often distorted by political agendas, the agendas of funders, interdisciplinary and peer rivalry etc.
Absolutely. For years now, fuelled by disillusioned ex-researchers who quit when their last few crumbs of control over their own research agenda were lost to financial and political control, I have been fond of saying "Science no longer exists. It's all politics now". Weirdly, I never connected this realisation with our illness until now.
I do not believe it was always like this, but 'Science' now is a financially and politically directed political battlefield, and the guy with the most money nearly always wins. Yet somehow, real science still pops up occasionally, as it has done now in dramatic fashion at the WPI, and it is our task now to fight to ensure that this green shoot is not trampled underfoot as it was in 1991 when 2? 3? independent studies were "unable to reproduce the findings"...
That is our warning from history, and we
must now be in that game, we have to fight for our corner, because there are so few who will do it for us and so many ranged against us with so much to lose. It is a cruel and vicious requirement, as people with so little energy to spare, sometimes struggling to even survive, that we have to take on this work - but
this is our little window of opportunity, right now, and those of us who have the capability to play our part are now standing up.
at least we are now talking about prominent researchers in the retrovirus field a subject the psychiatric lobby have no expertise in and can't interfere in. BUT; by the same token few virologists have the knowledge of the whole sorry history of ME/CFS or have clinical experience of ME patients. What diagnostic criteria/symptom set will they use to select subjects, where will they find the subjects? Will they be required to work with established 'experts' in the field?
Crucial point. These retrovirologists give every appearance of knowing nothing whatsoever about us, and why should they when we have been invisible to the world? If you search this forum for the link to the Swedish prospective study, you will see something that fills me with hope: a retrovirologist musing on his past few weeks experience learning about ME/CFS, coming fresh to the field, and showing every sign of understanding what it's all about.
These are the people we must write to. We must directly contact every scientist involved in every one of these studies and explain our fears and concerns about this research, explain that we cannot afford for them to fail, explain the politics of defining us out of existence with Oxford Criteria and every other dirty trick in their book. We must help them to help us. And we must hope that the other side don't believe we have it in us to do all that.
Marco is right: this is the opportunity of a generation.
We...need to 'police' this research ourselves by compiling a worldwide register of all such research detailing the researchers, funders, associates/advisers, terms of reference/research aims, diagnostic critera for subject selection (narrow definition limited to 'organic' ME v wide CFS definition), research outcomes etc plus a commentary on our assessment of the robustness and objectivity of the research. We could even make predictions of the likely research outcomes based on the above factors. We could even organise to provide a brief for anyone intending to carry out such research.
That's as good a blueprint as I've seen for what we must do right now. And there is not much time. (That's the only thing I can think of missing from Marco's database spec: the timetable for these studies. I agree, we should publicly predict the results of these studies ahead of their publication, and explain our reasoning).
Gracenote makes the next key point: we need to join up with campaign groups for autism, multiple sclerosis, IBS, MCS, FM, Lyme, Gulf War Illness, and any other ideopathic neuro-immune condition, and impress on them the evidence suggesting that XMRV could be as significant for them as it is for us. 4% of the population are X+ so we may be a minority, but we're not tiny. All those labels may disappear into XAND anyway, and it's worth remembering that "divide and rule" is the oldest trick in the book. Unity is powerful, so I'm told, and besides, we cannot afford to leave anyone behind - and they
will try to pick some of us off and keep at least a rump of unfortunates to preserve their careers.
At the same time, the CFS studies are already in progress, so the most urgent and pressing task is to make sure those studies are studying XAND patients. I don't trust the argument that we need a global unified criterion for this study; we need to tell them that their true task is to range across a complex and distorted set of groupings and find the XAND.
So Marco, if you are paranoid, then so are we all, and our fears are exactly the same. If we are all paranoid, then we have nothing to lose but one more Christmas holiday. If we are not paranoid, we stand to lose everything. I for one am not prepared to take that risk.
I propose:
1: Define the group(s) on this forum who will take part in this work and rally the troops.
2. Ask Cort for some sticky threads.
3: Implement Marco's Plan.
(Note Katie's thread proposing a UK and European campaign group, currently with slightly longer-term objectives
http://forums.aboutmecfs.org/showthread.php?t=1147
Do I have a second?