Dr Coffin appears to have chosen sides or maybe doesn't want to emulate his surname by helping the little people? (the WPI).
We have evidence of a budding real new virus under an electron microscope, and he says ''It is not impossible that there is something fundamentally wrong with the initial study''
Huh? SCIENCE don't print studies that are possibly fundamentally flawed, we all know that.
The only thing fundamentally wrong,is in nearly 9 months - we have no action.
No advice, no leaflets, no plan of action, no actual action!
This is not Dr Coffin's fault, it's people at the very top blushing at the reality the WPI just served an ace and they have no tennis racket to return the ball with.
People and their families are sick, some are dying. Some are dead. There is no scope in this to 'doubt' when the WPI Postulate this XMRV is linked to CFS and people actually are testing positive for it who just happen to have neuro immune disease with the label CFS, and healthy people are 25x less likely too.
If you inhale dust, and are shown that people are 25x more likely to have an asthma attack, doesn't that suggest that dust may trigger allergic reactions? Or is that possibly fundamentally flawed science? Time for government agencies to DO SOMETHING, and end the endless theorizing towards the negative - of what if we're wrong and it's all a dream, a ghost in the machine, an apparition due to over excited women with an agenda. Yea, the old sexist message again.
'Wrong' doesn't invent a new human retrovirus under an electron microscope in 3 different countries, in laboratories separated thousands of miles from
each other.
'Wrong' doesn't invent the same infection in people who universally claim to be (and indeed are) severely functionally impaired with a post/persistant viral fatigue syndrome.
'Wrong' just happens to be a virus, not an ice cream machine or a aluminium door knob, but the very thing people with CFS claim caused them to become ill in the first place.
It's so obvious in people tested (not all cases of CFS obviously), for these people XMRV is highly implicated and we have people saying it could be an error and it's nothing. Instead, why not help these people with XMRV to stop spreading their infection, and improve their quality of life (CFS is perfectly able to be other things, and will be). Why is that so hard to start?
Isn't this why they are driving an Escalade and you're driving an Escalator? (Increased functional capacity enables productivity enables possibilty such as employment and money). The only money us 'CFS Homies' are getting for our 'ride' on a friday night downtown is a parking ticket in a disabled bay outside Walmart. Life, could indeed - be rather better.
Scientists appear to be obessing over a giant CFS cloud that has to rain on a certain day on all states, when the reality is, some clouds rain a certain rain droplet on some states, and it's this that is being debated as never raining at all.
WPI never said XMRV causes CFS, it said XMRV was found in lots of people who were told they have CFS. The irony is here, the people with XMRV may not have CFS at all, but XMRV that causes neuro immune disease. This suits both pro and anti XMRV people just fine. Hence the WPI tentatively invented the term XAND, for this very reason.
I don't care if XMRV isn't CFS, it doesn't matter - it's three letters. XMRV can be called flim flam pjyama banana hop scotch syndrome and I'll accept that. What people need, is medications.
OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!! These people are so sloth like in their ability to process, delegate, organise and act on even 1 person being sick with XMRV, never mind 1,000, or 100,000.
Perhaps all the XMRV folk should all go on Oprah (via Oprah emblazoned ambulances) and get her to write to the CDC because no one outside the WPI is actually doing anything constructive whatsoever to help people with XMRV.
Dr Coffin saying that patient's claims to a virus could be fundamentally flawed when we all know it's not contamination (confirmed by CDC, NCI, Cleaveland Clinic & other labs), and it's real - confirmed by photographic evidence of budding retrovirus and other countries, laboratories unconnected with the WPI also finding it in other countries - is most unhelpful for patients with XMRV. Did he say this? Maybe it was journalistic license. Who knows.
What we do know is people with immune and brain disablities are waiting to get their results on XMRV from small company (VIPdx). Doctor's read negative (unsubstantiated XMRV comments) - that may influence them in the negative themselves. They then prohibit patients finding out if they have XMRV (by stopping access to testing). This is bad. If people in the community are infected, an infectious risk, or have indeed (tragically) already passed on their infection to their children, they need to know as soon as possible. We must have an FDA approved test to do this, one tiny little VIPdx lab, cannot possibly cope.
As a parent, finding out one is XMRV+, this would be utterly devastating. I would far rather my child find out about being XMRV+ (whilst healthy) through a calm process of taking my child to a doctor, than having a kid in the playground taunt and poke them and calling them 'freak' or 'AIDS BOY' - when possibly in a year or so the news breaks. (The CDC keeping this secret and hidden will make the inevitable news, even harder to swallow as these kids will learn and be told 'mommy has XMRV but she doesn't know what to do'). So for years, the child of the XMRV will have to keep this hidden thanks to the caustic anti-XMRV environment that inevitably emerged. Anybody interested or aware of CFS politics could predict this would happen when the XMRV news broke in October 2009.
More stigma.
One doesn't remove stigma of HIV/XMRV by avoiding the possibility of it tapping you on the shoulder, rather firmly in the near future.
Ultimately, scientists aren't counsellors, or therapists or care givers - and boy does it show.
Health agencies produce public advice and plans of actions, and we need ACTION not DISMISSAL for those infected with, or at risk of transmitting their XMRV further - entirely innocently.
Only FUNDING can do this. FUND & ACT CDC, FUND & ACT.
