Good post oerganix. Your points about the history of breast cancer are very interesting. I'm perfectly happy if we can agree that we're both half-right.
Still, I seriously doubt that a retrovirus implicated in breast cancer would generate more interest than one implicated in prostate cancer.
Impossible to speculate so we'd best not bore everybody with the argument. I still reckon it would generate at least as much scientific interest, because it's highly likely the virus is involved in other cancers as well, but if prostate cancer happens to be more in the spotlight these days, that's just fashion really.
Women got together to change that attitude without much help or interest from men. Perhaps men need to band together to get more attention for prostate cancer, but I see more interest in it even now than there has ever been for ME/CFS.
Crucial points. Absolutely, yes, women have gained everything they have gained by banding together and fighting for their rights. I'd love to see men banding together in the same way now to fight for our rights, because there are a lot of emerging issues, and we're in a paradoxical phase where both men and women are discriminated against in a variety of ways. But I don't see much likelihood of that banding-together happening. Lest I be misunderstood, I've always thought of myself as a feminist, but men have never been thoughtfully engaged in the gender debates, and as a result we are still having a one-sided conversation which will never allow us to reach equality.
So I'd love to see men getting together to campaign about gender issues, but it ain't going to happen because we're all terrified of being labelled sexists if we do. (Apart from me of course, I don't give a damn about anything any more, that's the good thing about having nothing left to lose.
)
The fact that the Office of Women's Health, in the US, is the only government office truly interested in dealing with CFS as a medical illness says volumes. As far as I know, there isn't even an Office of Men's Health, men being the standard to which women are derivations, or a sub-category. I'm sure someone will correct me if I'm wrong.
I'm sure you're right, something similar is true here in the UK, and it gives me an opportunity to put the point I want to make succinctly (now there's a rarity!). The fact that there is an Office of Women's Health and not an Office of Men's Health is discriminatory against
both men and women. Is that making sense?
I used to go to a PWC support group. To a man, the men in the group complained of being doubly disdained for having a "woman's illness". One was taunted by his doctor who said CFS is a mental illness of hysterical women, and a man who claimed to have CFS was by definition, an hysterical sissy.
Which perhaps points to the way that men in situations such as this are now among the worst victims of sexism. We get it in the neck from
everyone.
If WPI had come out with research on a retrovirus that was solely implicated in CFS, I have no doubt that Dr. Mikovits would have been treated just like Dr. de Freitas was in 1991. In fact, Reeves attempts to do just that even now.
Absolutely: I'm sure that's true. The only reason the research is even credited at all is because they already heard of XMRV in another context.
So, I can't help be happy that other illnesses may be implicated in this discovery, simply so that CFS can't be, I hope, dismissed one more time as unimportant because it is a "woman's illness".
Dead right that it's really good news for us all, it will force them to stumble across the truth in spite of themselves.
I have no doubt that if 60-80% of the sufferers of CFS were men, this illness would not have been treated as badly as it has been. Witness how quickly Gulf War illness?/syndrome? was recognized and validated and treatments, however inadequate, were implemented.
Hmm...I can agree up to the point that if a greater proportion of CFS sufferers were men, it might have made a difference. But I would have been likely to cite Gulf War Syndrome as an example on "my side" if you hadn't got there first! Is it really the case that GWS has been taken seriously and properly researched? Here is a near-100% male condition, yet last time I looked, the scepticism from the establishment about its reality pretty much mirrored our own CFS experiences. Perhaps it got a bit more interest from conspiracy-theorists and anti-war types, because it's a "sexy" story. But they still haven't got to the bottom of what GWS really is, have they?
So while we're on the subject, is GWS actually XMRV I wonder? Surely the symptoms are not a million miles away from CFS/ME/FM. When was that war anyway, 1991? And when did the epidemic of CFS ramp up and go worldwide I wonder? How many of us on here have been sick "for about 20 years"? Was GWS the epidemic that paved the way for the explosion of XMRV in the general population?
To answer my own questions, I have very little doubt that there's a connection there. But I don't want to ruffle any feathers by pondering too loudly as to whether it would be possible for a biological weapons researcher to take a leukaemia retrovirus out of a mouse and genetically manipulate it so that it could infect humans via fungal spores...surely such a thing is unthinkable...neither the US nor the Iraqi military would contemplate it...
I also think it will be really interesting to see whether these other diseases siphon off a lot of the research money and attention from ME/CFS.
I'm sure that will happen, just as you fear. At the same time, we'll probably get a lot of relevant research out of the XMRV studies for other conditions, so hopefully it won't all be bad news.
