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A disease with two faces? Re-naming ME/CFS
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5th Invest in ME/CFS Conference - Programme May 24 2010

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, May 23, 2010.

  1. Robyn

    Robyn *****

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    I know in the beginning some Gulf War Vets were being diagnosed with CFS and Fibromyalgia. There's also the issue of the sealed records in the UK. Makes you wonder a bit. There are so many things that go on that we just don't know about or it's found out later to be a problem. Examples: Celebrex (later tied to heart associated deaths), Bisphenol A in plastics (a hormone disruptor which has been in baby bottles, pacifiers and most plastic containers for 20 or so years, in process of being banned), melamine in dog food, and later found in baby formula, and an additive in most processed food. And various other products that the FDA approves and the CDC doesn't always followup on when problems are found. Oh and let's not forget retroviruses and pig DNA in vaccines. Aw noone will ever know, at least not for 30 or 40 or 50 years from now.
     
  2. lululowry

    lululowry Senior Member

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    Wow, DysautonomiaXMRV!:eek: I knew it was bad in the UK, but I didn't know it was THAT bad.:eek:
     
  3. MaryAnn

    MaryAnn

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    Hi Villagelife,

    I think that Gulf War victims receive up to 16 vaccines in a very short timeframe prior to deployment and that this is where their symptoms begin. I think vaccines play a part in both autism and CFS too. I know my daughter's symptoms began after receiving several vaccines needed to enter college for health profession and 2nd HPV shot.

    Although I agree that big Pharma wants to make money on providing drugs, they certainly make big dollars on vaccines and have the backing of the CDC in the US (law suits are limited/subject to the requirements of the National Vaccine Injury progam.) (Also, I believe the head of Merck was formerly in an executive role at the CDC).
     
  4. bluebonnet

    bluebonnet

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    Cheney's patients were tested at VIP.
     
  5. gracenote

    gracenote All shall be well . . .

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    Thanks, bluebonnet.
     
  6. Hi lululowry. Many UK severe ME patients are very scared of 'coming out', and the government keeping us scared makes sure no one knows we exist - so the severity of ME is hidden. Instead, the public see people (given the label 'CFS/ME') saying they cured themselves of ME in 3 days by altering their mind. (e.g. Lightning Therapy). The most absurd claim for an incurable inflammatory brain disease of course, but good enough to put on the BBC - twice. (I see, conversely the only ME patients allowed on British TV, are ones no longer here with no voice who cannot protest).

    Where are the XMRV+ patients in the UK on TV is my question?

    I see doctor Oz in the USA had a lady with XMRV seen by millions, yet in America you don't have a 'free' (paid for in tax) socialised medical system where big brother dictates what you are, literally and thus it was allowed to be shown. In the USA, if you have money, you can see a private doctor and get basic or advanced health care depending on the payments per month. What if private medical insurance didn't exist in the USA?

    If you go to ER in the USA with cardiac pain and someone calls you mentally ill (with no evidence) you can complain or sue for endangering your life. How can you complain if all ER's are run by the state - and the doctors are told you are mentally ill? Then you will get nowhere, and you will live your life (un-necessarily) as a hermit - like me - making sure you avoid angina and cardio-respiratory issues as much as possible.
    Alternatively, if you survive a cardiac emergency, then the state run health system will destroy, or fail to write down your presenting symptoms. Like me then, one has the situation where one has evidence of cardiogenic shock, but no comments 'about' this. Blank, nothing, and the next day it's comments about behavioural modification again. A private health care ER cannot do this, you can expose them and you can sue them. You cannot expose the state, as you won't wake up the next day. And so you must live, as a subject, and as a peasant.

    This is a form of enforced disability of the ME population, not my mind, as I have asked and demanded and protested many many times - even when I was offered a place at University, they refuse to 'play along' with me and give me medications or oxygen so I can life some form of life.

    I thus see the photos of Andrea Whittemore with an oxygen line, and am not only sad for her, but terribly envious she is allowed oxygen and I am not. Yet she is an American, and American's don't live in a pseudo communist state like the UK, where we are watched. (1 in 78 people in the UK in 2008 came under state surveillance).

    When I got to ER, I rarely go in, I take tranquilizers I stock pile by lying that I will attend hospital appointments ( I have a 'deal' I can have 2mg Diazepam to go in the ambulance). I lie because I am not allowed to have the medications in a normal pack (e.g. pack of 20+ 5mg tablets), despite being diagnosed with Dysautonomia which means any 'stress' or viruses can induce convulsions and dangerously high blood pressure (hypertension) that requires these drugs. Anyone with convulsions or Dysautonomia will tell you, during an attack - even 10mg won't stop things, so 2mg is useless. So for 2mg to work, I have to never leave my front door to wait until the next 6 month hospital appointment where I am 'meant' to be going to the hospital in the ambulance, where I am only then allowed 2mg tablets.

    Stupidly, they now tell me my breathing muscles are too weak to take these medications, hence this is the reason (I am now told) I am restricted. My reply is, where are the lung function/tread mill tests? The reply is, I am not allowed them. I show a 87% oxygen rate with a $1000+ machine. They tell me the machine is faulty, and refuse oxygen for these attacks I get. What would happen to me if I posted this letter on here, or anywhere? I know what, so I never do it - and thus, they escape. They are not questioned and the esteemed 'Professor' is clapped instead of told they shouldn't do this to people. Discrimination against ME patients allows this to happen, which is why they are discriminatory in the first place. Just as people were in Western democracies against women, gays and people who aren't white. Only laws stopped people's malicious behaviour towards minorities. But malicious behaviour against ME CFS patients is not only allowed, it's sanctioned as the correct 'method' to deal with 'people like us'. Medical apartheid, nothing less.

    I thus need a few tablets to protect my life and need to 'obtain' them, and make sure I walk nowhere to trigger these attacks. This has gotten much worse, since the 2009 NICE guidelines on CFS/ME, which states that CBT/GE/Pacing are the only 'proven' therapies for CFS/ME. My new doctor read those guidelines, and indeed must follow them. When I get chest pain, I have to take a tranquilizer, and I get driven in a distressed state to ER and then sit in the car with my parents or sit in the waiting room and dare not check in, unless the pain is extreme. That's what brain washing does to you, I am brain washed to live in fear (because it started before I was an adult). I am refused any cardio tests, as these were done, ready? 6 years ago. Laughable in the USA where you pay your $2,000 for all the tests for symptoms affecting us now, not 6 years ago.

    In America (correct me if I am wrong), it is illegal to steal a child or adult and lock them in a mental hospital unless there is evidence of mental disease that harms the child, or could harm other people or a felony has been committed. In the UK, you can be detained with a clean mental health record, for the crime of having severe ME and not being mobile. I was detained as a 'guest', after experiencing heart failure, and I was an adult. This is what they do to kids, see this.

    So yes, ME, CFS or whatever the label given can be and often is terrible, but it's more terrible when you have no human rights because of socialised (politicised) health care systems that order your abuse as a form of therapy. When you know this is planned and directed by those in the Military (E.g. Wessely) and you then meet his people face to face when the door is locked, then you really know the face of evil. A face that refuses pain medications when in terrible pain, and even cardiac pain.

    I'm sure lots of others would like to chip in here, but many of them are dead or just mentally/cognitively destroyed. I dream of being an American and having rights, even if if was, the right to purchase a pack of pain tablets or other tablets for diagnosed disease/heart arrthmia's would be there - but that isn't possible for me. I've now got acute agoraphobia (due to Dysautonomia/POTS) but it's only so bad because of the fear. I am never left alone, and my parents haven't been away or had a break for 15 years. If I call (your version of 911) it will state I have ''CFS/ME'' which is not a cardiac disorder, despite me being diagnosed with SVT and being in cardiac care unit with ME in the past, is states in my medical records I was not admitted for this but for psychological problems and personality change.

    This is how corrupt the UK is, when they 'find' someone with genuine severe ME, who cannot possibly recover with CBT/GE/Pacing Anti Depressant regime. What do they do with me? This is how one ends up in hospital for over 1/2 year. 1/2 year is a long time not to brush your teeth, wash your hair, or get help. This happens because to help someone who 'believes' they have ME - only makes them worse. And so it goes on, be it 1980, 1990, 2000, or now - 2010. It never ever ends, and there is no escape as even now I know the truth (I have XMRV) the government military psychiatrist, Simon Wessely states XMRV does not exist here. That is the 'facts' and thus patients who are positive, do not exist.

    We know (UK patients) Sophia Mirza got her door kicked down by the Police and she was dragged out of her room and locked up, months later she died. None of us want that happening to us. It's a warning to us, and so us ME patients in the UK who are peeing in bed pans, or getting molested by care workers (I am not joking) say nothing, because we wan't to live. And so XMRV does not exist, because the patients contribute to it's non existence. And ME patients, contribute to the non existence of ME, because of the same reasons.

    To get back on track about the Invest in ME conference. This blogger guy's blog who is getting miffed about Huber well he has a reason to - on patient's behalf over this side of the pond. Her words, and her (apparent) TV interview will be used against severe ME patients who have tubes coming out of parts of their body where tubes aren't meant to be - whilst on no correct medications as giving medications increases 'entrenched beliefs' on a physical cause - according to Psychiatrists.

    Anything that gives ammunition to people in denial about XMRV or the plight of severe ME patients is very very bad news, hence the Huber speech should not have been directed at an audience of many vulnerable and sick people. She could have waited for another venue, or had her work published, but she had to go 'reveal' it - and the powers that be will soon print this in the newspapers. (Simon Wessely who states ''Me is the belief one is suffering from an illness called ME'', is Science advisor to the British Media). Huber may be innocent, but what she has done will have negative consequences for patient's health.
     
  7. Rivotril

    Rivotril Senior Member

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    maybe they have made their test even more accurate
    Or Vipdx is also contaminated, if you would ask Huber/Van der Meer etc?:D
     
  8. Bob

    Bob

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    I didn't know they were finding XMRV in GWS patients (or had I just forgotten it?)... that's big news to me...

    That's an interesting point you make, villagelife... I have seen research that makes a definite link between the vaccines which soldiers receive and GWS... some of the patients never even went abroad to serve in the war, but they did receive all the vaccines, and then became ill...

    So this is something that links together ME, GWS and Autism... all three have been linked to vaccines... I just found out the other day that there is a suspected link between ME and specifically the Hep B vaccine... which is the vaccine which i had before i got ill.
     
  9. rebecca1995

    rebecca1995 Apple, anyone?

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    Well, VIP is kind of close to Disneyland. Mickey and Minnie might be carriers of MuLV... :D:Retro tongue::innocent1::ashamed:;):tear:
     
  10. acer2000

    acer2000 Senior Member

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    Lets just play devils advocate here...

    If suddenly millions of people needed such drugs, there would be much larger bargaining power to purchase them in bulk and economies of scale for manufacturers. I am not saying this is necessarily the case all the time, but there is a chance that the cost of these drugs would actually go down when governments and insurance companies start negotiating the prices more due to higher demand.

    Also in the USA private system, many disability insurers are also health insurers. Not all, but CIGNA for example is. It is much cheaper for them to pay even $10,000 a year for a drug for you than $50,000 a year in disability benefits. Plus, most people with CFS in the USA are disabled and can't work ever. They draw social security disability income and medicare. If they were able to work again, they'd be off the social security rolls and the cost of their medical care would be shifted back to the private insurers/employers sponsored system. Seeing as SS and Medicare make up near 50% of our federal governments expenses and are both insolvent, I'm sure they'd be happy to get a couple million people off of their rolls.

    If XMRV is implicated in autism, this argument is expanded 10x. Think about how much it is going to cost to take care of 10% of our population who are now Autistic. They really need to solve that one...

    So yeah... I'm as big of a cynic as the next guy. And there clearly are some bad actors in the insurance industry and government agencies. You don't have to look to far to find them. (Tuskeegee experiment, health insurers dropping people when they get cancer, etc..) But you can also look at it the other way. :-/
     
  11. hvs

    hvs Senior Member

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    If XMRV isn't at the root or the driver of this disease, GREAT. Fantastic. Who wants a deadly retrovirus for the rest of their lives? And if its disproven as root or driver, fantastic: we've dodged a red herring at the expense of 6 months of excitement.
    But the strangely personal way that Huber seems to have done her talk is just that: strangely personal. Not a bleepin conspiracy, not insanity or evil--but the kind of personal "thing" that arises in science and academia and any human institution or network.
    Big players in the field have discounted the contamination theory. Dr. Huber isn't going to change that in an afternoon. Will more and more good-faith voices add to it? Who knows? I doubt it, but who knows.
     
  12. KnightofZERO

    KnightofZERO

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    Haha can't believe you did that. Well they don't seem very fatigued or anything to me? Though maybe eating all those huge lollipops help them there?
     
  13. Rivotril

    Rivotril Senior Member

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    hahaha great :D
     
  14. Cloud

    Cloud Guest

    I believe big pharma and their political puppet brigade will take out whoever gets in their way. Look at what they just did to Dr Wakefield. I wouldn't be surprised if they push for internet control/censorship since that is where we mobilize and learn truths that can't be found via corporate media. Corporate media is where they control what the masses believe.....Beliefs like the propaganda that vaccines are safe. The internet has become our most powerful tool.
    It seems a good thing to now have big pharma on our side, regardless of their motives. I could be wrong.
     
  15. lululowry

    lululowry Senior Member

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    If vaccines can lead to cfs, autism, and cancer because of xmrv, than vaccines will have cost millions of lives.
     
  16. lululowry

    lululowry Senior Member

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    DysautonomiaXMRV, I have been developing an idea from various threads about the the situation in the UK but I thank you very, very much for giving me such a vivid and clear picture - though I am afraid it will give me nightmares.:( :eek: It puts many things I've read about here on PR in perspective for me - like the attempt to publicly disaccredit Wakefield and the bizarre statements about xmrv not existing in the UK. And to get back to the conference, it makes the three who put it on even more heroic in my book:victory:, and Huber's performance more ominous. :worried:
     
  17. natasa778

    natasa778 Senior Member

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    ..... And as Andy told me several years ago, it is on these shores that the battle must be waged and won. Britain's legal system, medical castes and restrictive press laws were simply too onerous to overcome. Here, our own press freedoms reflect our Founding Fathers' revulsion with the British norms in which no one could say what they think without fear of being beheaded, incarcerated or, to use the quaint phrase of the General Medical Council, "struck off." ....



    http://www.ageofautism.com/2010/05/olmsted-on-autism-rhymes-with-struck-off.html#comments
     
  18. Cloud

    Cloud Guest

  19. Bob

    Bob

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    Here's a good couple of summaries that reassure us that the XMRV research is going places, and which also reassure us that XMRV is not a contaminant:

    Dutch Press release : Positive ‘XMRV-study’ a matter of time
    http://esme-eu.com/news/dutch-press-release-positive-xmrv-study-a-matter-of-time-article340-7.html

    Negative Papers on XMRV
    http://www.davidsbell.com/LynNewsV7N1.htm

    These links have been posted somewhere previously, so apologies if I'm just re-posting what someone posted earlier in the thread (you know how it is - brain-fog and memory probs etc).
     
  20. lululowry

    lululowry Senior Member

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    Thank you Bob. I think I just need a continuous loop of reassurance right now!:rolleyes::tear::tongue::D
     

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