RE: The question about having to wait years to prove what XMRV might do to people...........
Well in my view, It's easy to show mortality to rate in ME/CFS and link these deaths to XMRV.
Health agencies just need to look at the people with ME/CFS who died prematurely from heart failure, cancer, and infections and compare these to age matches controls who didn't have ME/CFS label.
If people are dying in their 40's and 50's from significant rates of disease (all who had a label of ME/CFS in their teens and twenties) the answer is there that XMRV could wipe out more people than your girlfriend trying to master
Super Mario Cart on the Wii.
Only one study has been done to my knowledge by Jason et al in 1996.
25 years loss in life expectancy. That fits in perfectly with a retrovirus like HIV, or XMRV.
Think of all the people with ME/CFS who have blatant
symptoms of diastolic heart failure yet who have no
diagnosis of heart failure (due to it being mitochondrialy based and thus ignored) and who still keel over with stroke and cardiac events far too young. This started happening to me when I was 23 and I just happen to be XMRV+ all these years later. There was I linked up to beeping machines totally clueless asking myself why am I the only ME patient in cardiac care unit? Probably as the others never got there in time, that's why.
Heart failure ruins lives through loss of mobility, chest pain, loss of intimacy, people can't sleep laying flat without a bed-raiser, people are destroyed in hot weather and have exertional dyspnea (shortness of breath) and even water retention before their kidneys pack in. (Everything people with severe ME claim they have), who are now testing positive for XMRV. That's why these ME folk are on oxygen when the temperature hits 30c, or they would be if they were allowed oxygen in countries like the UK.
Disablity in ME, it's hidden because it taboo for a doctor to see with their own eyes or listen with their ears what ME patients say, because by doing so would 'encourage' their neurosis. Eventually patients don't bother complaining, so like me the live like an old man and come the summer stick their head in the fridge and wonder why the cat keeps meowing for milk. Better to save face, than go begging too many times and made to look a fool.
Hence in my medical records after being very ill it stated ''de-medicalise'' and not ''investigate heart problem''. Wessely school of psychiatry orders this in writing, so doctors copy it as it's called 'evidence based medicine'. I'm not a one off, this is institutional in the UK with socialised medical health care.
Every month since XMRV discovery at the WPI, the injustice and the stupidity of the Psychiatric profession builds and builds into a foghorn blast of wrong doing, that when ME patients are accepted (and not hated as sub human citizens) the clowns of medicine will go down in history of having committed the most spectacular of crimes against innocent people, including children.
Lets not give in, but believe in the people who believe in us and have our best interests firmly at heart, because they care. And they care, because on behalf they will press STOP on the cassette tape player of wrong-doing and PLAY on bio-medical research that was (and still is) prohibited for people with the label ME CFS. A situation of xenophobic disgust of patients with ME CFS and thus, medical apartheid.
All at odds with the ethos of the hippocratic oath: First do no harm. Well enormous harm continues to the second I type and you read this. Thank the good lord the WPI turned up and pointed scientists (who were looking out the window) to the evidence in front of them that was there all along. At least through this smashed life we live, someone's coming with the hoover to clear the mess up - even if for many it's too late.
People go on an exodous for religious reasons. If I get better I want to go on exodous for people who died and pay my respects to them. I want to walk with thousands of recovered patients in silence. Because in life, and from the medical profession - these poor folk who are no longer with us, got nothing but disrespect. We can only do this with bio-medical research and drugs.
How ironic, that only then can we have the mobilty to pay our respects to the dead. That day will happen I am sure. Banners, solidarity, and respect. Only then can we show the world what has happened, and only then will the gravity of the situation be realised by the deceived public. On that day, maybe the leaders of the Psychiatric gestapo will be jailed, or indeed considered with rightful venom.
A venom they injected into
us for decades and laughed in our faces as we begged for mercy. XMRV is a snake and WPI will slice it in two eventually so we can be free and live without so much sustained fear and misery. Somwhere in there, is faith for better times ahead. Something unthinkable before October 2009.
