Having this blog, I am lucky enough to have a place where I can also give space to those that do not have a blog or a place to use their Voice to Speak UP and Be Heard.. For THAT I am Very Grateful.. We ALL deserve to Be Heard. This weeks guest is from the UK and a retired Veterarian so very familiar with medicine and how it works and how those who influence that profession behave appropriately or not.
Thank you for your post...
I wish we ALL could have a little pill for MECFS/XMRV/Lyme etc.
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Yeah, I'm fine thanks. Keep getting little health problems but my doc says, what do you expect, you're getting to that age? Oh thanx very much. I know my hair's going a bit grey, but I didn't vote for
infectious arthritis in my knee (sorted now with antibiotics - was likely to have been Lyme, what else?), bad ears (OK now), ringworm on my chest (had it years), skin tags on my neck, need for stronger
reading glasses, high blood pressure, breathlessness, chronic cough (I’ve never smoked), weight gain and balding - then to be told it's all down to age. Really? I'm not retirement age yet - well, not for another 10 months.
I still have ongoing problems with my M.E. since Feb 1995 like irregular sleep patterns and need for daytime rests. Not to mention a degree of impotence/ED brought on by prescribed (never again!)
antidepressants which have long-term or permanent effects, impotence or ED being one, added to the similar effects of M.E. and general age processes. Can be fixed temporarily with those "blue diamonds" but I
have no need presently as I don't have a functional girlfriend. I'm seriously wondering whether it's a good idea to consider inflicting my problems on a new partner, so I cancelled my subscription to a dating
site on the internet after just one date. We met & chatted over a cup of coffee. She was disabled, a leg amputee, nice enough but I didn't fancy her anyway.
A new virus has been found in virtually all M.E. patients, no surprise, we really knew all along. We’ve known ever since MRI brain scans showed lesions the same as in HIV/AIDS - in 1985 - that it was a
retrovirus. Then a retrovirus was found and a paper published in 1991. This showed the virus inside mitochondria, which are the “batteries”
or power-units inside each cell. If they don’t work, you get very tired and weak. That explains everything. Then, just over a year ago, a retrovirus, presumably the same one, was found in ME patients in America. It’s named XMRV - too complicated to explain why.
Nasty things, retroviruses. They’re never good, usually harmful. They cause lots of cancers - breast and prostate, to name but a couple. People have been studying them for over 100 years. There’s one going
round Australia killing hundreds of koala bears right now. We have two kinds in our pet cats - Feline Leukaemia and Feline Immunodeficiency Virus (AIDS in cats). A Retrovirus is an RNA virus that splices itselfinto the actual DNA of your cells by transcribing itself into DNA. It never goes away.
XMRV affects up to 250,000 people in Britain alone and is the biggest cause of children being absent from school. Thousands of people have lost their jobs, their marriages, their houses, and are dependent on state disability payments, a huge drain on Britain's economy. But the Government won't take it seriously. They could have saved the taxpayer MANY BILLIONS of pounds over the years, and we could have had tests for the virus, proper antiretroviral treatments, and possibly vaccines, by now, if they'd invested money in the necessary research 20 or so years ago.
Instead, the virus has been pinpointed by a small private foundation in the USA, started by a couple whose daughter has been a sufferer for years. The wealthy husband put up the cash and they employed
experienced retrovirologists. They have done very careful research to extremely high standards, high enough to get their paper published in “Science” magazine. Meanwhile, here in the backwater of Old Blighty,our Medical Research Council (MRC) has been persuaded by thepsychiatric profession into promoting the idea that the disease is a mental one and has only been funding research into psychiatric treatments, so we are now well behind the real world. This Government attitude has led to several deaths directly from the disease and dozens of suicides.
I attended an All-Party Parliamentary Group on M.E. at the House of Commons in December ‘09 and the star turn was the Health Minister, who stated that he has no power to dictate to the PCT’s (primary care trusts, local medical services), or to the MRC as to how it distributes its money to researchers! Incredible. So what exactly IS his job? All State research funding is channelled through the MRC.
In the UK we are censored. We’re not even allowed to talk about ME or XMRV in the Press. Or rather, they’re not allowed to print it. All scientific material has to go through the “Science Media Centre” (SMC), a British Government body set up deliberately to censor it. The
Psychiatrists (called the "Wessely School") can of course publish any rubbish they like - and they do.
One group of "researchers", involving the psychiatrist Simon Wessely who selected the patients, published a paper saying they couldn't find the virus at all. Even though it's present in a lot of normal apparently-healthy people. Surprise surprise. They completely refused
to use the same techniques in the lab as the US group. Obviously, they didn't WANT to find it, as Wessely is a well-paid advisor to the insurance giant UnumProvident, and is due to retire with a good
pension from them. The psychologization of the disease has been good for the insurance companies in the US who can deny paying out for mental diseases, but this has been hoodwinking our Government, who
have had to cough up for disability payments and for carers instead, not to mention the loss to our economy of people who once were perfectly functional and working taxpayers. Then there’s all the intolerable pain and suffering.
Personally I'm a lot improved over the past sixteen years but still need to rest a lot. I can think straighter and can now cope with easy crosswords!
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Thanks Laurence for "Speaking UP."
For those new to this blog, please be sure to check out the new link I have added up at the Top Right for Helping the Research....Please Share and as usual Comments are Always Welcomed."
XMRV Chronicles
If you need a place to post your thoughts on current Research on ME/CFS/XMRV Please leave me a comment and then we will be in Touch, OK ?
I have also added some new blogs on the Right side and a few Petitions that might be worth a look if you are so inclined.
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