First, we don't even know if XMRV has anything to do with CFS. It hasn't been proved or verified yet.
Second, even if it does, for all we know it could be transmitted in some as yet unknown, non-easily communicable way. That is completely different from HIV being spread by one of the most common human activities there is, not to mention through blood.
So, even if XMRV *IS* responsible for CFS, the route of transmission could make it so unlikely that most people would contract it that the comparison to AIDS in Africa is simply absurd at this point. We don't know enough yet with any certainty to be making alarmist statements like that. It doesn't help anyone, it only creates an environment of nervousness and fear. From the context of some of her other her comments, that appears to have been her intent. I think that is irresponsible. An approach like that tends to damage the credibility of anyone who makes those kinds of statements (and arguably of anyone associated with that person, i.e., us).
The Tsouderos chat says there are at least half a dozen papers in the pipeline as we speak. This issue will get sorted out. Trying to "prod" people with alarmist statements (is that better for you?) is an ineffective strategy that can even backfire and cause more damage than not doing anything. There is no reason why we can't wait for the replication studies. By the end of the year this will probably all be sorted out one way or another. And then if XMRV is a causal factor, appropriate treatments can be developed. But we are definitely not there yet.
Well this is most interesting, if one is on the search for proving a causal factor - however one must remember
causal factors are not needed to prove a disease process.
What if you're completely wrong Mr Kite (I could equally be as wrong and you are correct) and XMRV has everything to do with CFS, including the same vector of transmission as HIV? I feel this may be possible when looking at was has been found already to date in such a short time. Namely CREB gene insertion of XMRV (affecting Mitochondria), T Cell, B Cell, NKC Cell infection, and the fact XMRV is activated by NF-KappaB and affects androgens, and the fact XMRV can alter Red Blood Cells.... well all these things have been found in CFS already and not shown in any other disease.
This is important.
If one looks at the biological capability of XMRV, and then looks at the symptoms and research into CFS - they match, exactly. Hence Judy Mikovits has already devastated the pro-psychiatric industry of selling 'CFS' as a 'life-style-choice' - thus hiding XMRV and neuro immune disease from the medical profession and wider public. Psychiatrists and the CDC suggest treating CFS with behavioural therapy, exercise, and anti depressants. (This is what the CDC have stated and suggested) yet XMRV cannot possibly be treated this way, and neither can ME, which now Harvard University 'don' Dr Komaroff says is an appropriate name to describe CFS.
For many, CFS 'hides' neuro immune disease. Dr Komaroff isn't just saying it, he's showing it in presentations. Judy Mikovits is showing it with blood tests.
Anyone with a diagnosis of ME in the UK (re-branded as the unique UK behavioural disorder of CFS/ME) hasn't been able to donate blood in the UK since around 1986.
Anyone with a diagnosis of CFS who is XMRV+ is now intimately introduced to XMRV as they cannot donate blood because of XMRV, and they risk passing on an incurable virus to their unborn child.
Anyone with a diagnosis of CFS who is XMRV+ can already prove in their case
(not all cases of 'CFS') - XMRV has caused neuro immune disease, and they don't need science to tick any box to confirm it.
This is a very important point.
CFS cannot be diagnosed with evidence of organic disease. CFS can only be diagnosed when there is unexplained persistent fatigue lasting 6 months, that is life limiting and not relieved by rest. Any physical or mental condition can cause this. And so CFS is not an appropriate label for a specific disease or illness. If you watch Dr Komaroff's excellent presentation he lays out CFS in a specific unique disease causing manner, and then suggests it should be called ME.
XMRV eradicates the label CFS, because XMRV is a retrovirus that inserts itself into human DNA and therefore not 'unexplained'. It is explained.
So how can someone with XMRV claim to have a disease? Get tested now for evidence of disease, that's how.
How is this possible? Cytokine testing showing inflammatory reponse, Natural Killer Cell Profile showing immune supression, RNASE-L Profile show anti-viral immune supression, Evidence of Mitochondrial dysfunction (poor ATP function) and associated evidence of CREB gene alteration, increased Lactate in brain/spinal cord fluid/muscle (proving Mitochondrial dysfunction), other evidence of inflammation such as premature bone loss in absence of poor diet and low calcium intake, and a plethora of other assays - in any individual would show disease states ranging from immune to brain to vascular.
One doesn't need to PROVE XMRV anything.
No one knows what causes cancer, we know the proceses, but the cause? We know zip. Same goes for many other diseases.
Cancer is simply a consequence of? No one knows. Different cancers can be caused by different things. Cancer doesn't need a single cause, and so (technically) CFS or ME doesn't.
There are, of course many forms of Diabetes: Diabetes, Gestational Diabetes, Diabetes Insipidus, and Phosphate Diabetes. Diabetes, does thus not need a single cause either.
On your premise, everyone with cancer, cannot be told they have a disease, until we know the cause, of cancer. This is fine and for you to say and I won't suggest you can't, for me personally it just doesn't fit with my disease or other people with ME who've read research. No cause of CFS needs to exist, ever for anyone to have a diagnosed neuro immune disease, they just need evidence OF 'disease'.
Which is easy if you have XMRV and have severe ME - sadly.
To me the fact I can no longer have children with a woman is devastating. And to a woman, even more especially. I am sure everyone sitting at home who is XMRV+ isn't waiting for anyone to 'confirm' if XMRV makes them sick, they
know it, and already have evidence, or can produce it if necessary. I am just waiting for recognition from the CDC, so I am allowed to go to hospital!!!!!! I am currently not allowed as I am told this is 'illness seeking behaviour' and my treatment regimen is to 'de-medicalise' my illness by not discussing, talking, or seeking help for it - because to ask for help, the UK NHS says is evidence of Somatization/Conversion disorder (Hysteria). Thankfully, outside of the UK, this is not the way.
Why am I in my bedroom now and not in Hospital? I am ill enough to be. I am being cared for by people who have traded in their own freedom and life to care for me. It's absurd. I should be in a hospital like everyone else with severe ME and be given Mitochondrial support, anti inflammatorys, anti virals, anti-retrovirals, night time oxygen, pain control, a home care support package and access to a counsellor. (Currently all denied because apparently XMRV and ME 'does not exist in the UK').
The problem is for the Department of Health is, I exist. Hence they have done their best to kill me, because they never wanted me to find out about XMRV. For me, Mikovits is an angel, because she created interest in the truth and put the angle-poise spotlight of Science right down onto those letters 'C F S' & (to their fury) 'C D C'. And therefore, XMRV (for me) is directly linked to CFS.
Now here is a suggestion not a personal attack.
Phoenix Rising could
consider suggesting that messages posted always take into consideration that users of the forum who are XMRV+, who are reading the XMRV SECTION of Phoenix Rising do not feel sidelined and denied as existing.
Currently this doesn't happen because people like me can be pushed aside, this is expected, I can deal with it. (No one likes me anyway as I speak out because no one else can or will in the UK). This is part of the process of life, no big deal.
But what when 500 of us are on here XMRV+ , and people are still writing messages like XMRV doesn't prove CFS etc? Hmm. Well others may get quite insulted by it to be honest, like it is being suggested they aren't allowed to have XMRV, or are freak cases of nature. It's rather weird to feel isolated in an XMRV sub-section of a forum, when you have XMRV!!!!! LOL.
(If these messages where in the CFS section, then fair enough).
None of us to blame for any of this, we are all passengers injected with the virus of Psychiatry who prevented and influenced research for decades. If there had been neuro immune research and the label 'CFS' had not been manufactured that fateful day in America, we wouldn't be forced to 'debate' and discuss and to hope and pray someone will help us.
So far we have Judy Mikovits, but we need more of her. Maybe Dr Kerr can clone her?!
