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ME/CFS and the Magic of the Canine Factor
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Newly refined test from the Whittemore Peterson Institute

Discussion in 'XMRV Testing, Treatment and Transmission' started by Abraxas, Jan 14, 2010.

  1. Martlet

    Martlet Senior Member

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    Sorry, but I can't leave that unanswered.

    Health care in the USA is mostly paid for by employer-provided health insurance and the insurers dictate what tests/treatment can be had. If a person loses their job, then they lose their health care and very, very few can afford to pay for treatment out of their own pockets. Even with health insurance, health care costs are the single largest cause of personal bankruptcy, because people have deductible amounts before insurance kicks in, then have to pay a percentage of their own costs and often, there is a limit to the amount insurers will pay over a lifetime.

    My husband lost his job just over two years ago. Six months later, our company-provided health insurance ended but we are among the fortunate ones because, as retired military, my husband is insured under a military scheme called Tricare - and as his spouse, so am I. But that doesn't entitle us to whatever tests we want. For starters, we have to pay for the first $300 of costs per benefit year, then have a co-pay of $3 per script (which is much lower than most) on our drugs, and then have to pay 20% of all doctor visits, tests and procedures, and can only have medically proven tests and treatment.

    When my husband reaches 65 later this year, in addition to all that, he will need to register for Medicare and will have to pay $100 a month on top of all the above! No free prescriptions for OAPs, as in the UK!

    And still we are among the lucky ones. 46 million Americans have no health insurance at all and these can often afford no medical treatment, so they go to casualty departments just so they can be stabilised, but receive no follow-up care.

    Then you mention the $163 per month. For the $163, British people receive unemployment benefits, disability allowances, retirement pension AND health care. Working Americans also have a compulsory tax called Social Security but this does not provide for health care. This tax is charged at a rate of something just over 12% of taxable income, generally split between employer and employee. Here in Missouri, median income was just under $40,000 last year, so you can work it out what they have to pay, although most people here are lucky if they make half of that.

    So, the bottom line is that British people get a lot more bang for their buck while the vast majority of Americans have their health care options dictated by whoever insures them... if they have health insurance.
  2. Martlet

    Martlet Senior Member

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    Mine too, Andrew. As excited as I was at the beginning, I have tempered that with the reality that we have been here before, and fear that the more noise we make, the sillier we will look (not to mention how devastated some might be) and the less credible our illness becomes in the mind of the public and the decision-makers.
  3. Wayne

    Wayne Senior Member

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    Optimistic About XMRV Research

    Hi Andrew, Hi Martlet,

    I have to say I don't share your concerns. I feel that things are rolling along really well with momentum gaining every day. Even if XMRV does not pan out as some people expect, I strongly suspect some other significant and very credible discoveries will be made. In the end, I believe we'll have more answers than when we started, and much more credence will be given to the organic nature of our illnesses.

    Wayne
  4. Frickly

    Frickly Senior Member

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    I love and share your optimism Wayne! Without hope...what do we have?
  5. Parismountain

    Parismountain Senior Member

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    I worked for Lucent Technologies before I went out on disability. My benefit plan when I went out stated I would have medical insurance and so would my family. Lucent was purchased by a French Telecom company. The first thing they did was cancel all medical insurance for all disabled people and their families. This from a country where I hear your employer might even cover your pet's health. So we had to pick up private medical insurance, we pay $400 a month for 2 people with the first $5,500 dollars in expenses on us out of our pocket, then they pay. I use to have cadillac plan, now I've got that. I'm on Medicare where the Dems are cutting $50 billion in benefits over ten years. My doc doesn't take Medicare so I pay out of pocket for a CFS doc, like $350 a visit. So the slow spiral down starts. Unfortunately for me I don't belong to a union so my president isn't going to step in and help. Hey, in fact I know my cfs doc is worried it will be illegal for him to practice medicine now under the new health care bill proposals.
    sorry to vent about my insurance woes. Martlet you are blessed to have the option and the style plan you do have. I'd have liked a health bill which would have said if you had benefits when you went out that no company still with a pulse can pull your insurance out from under you. That would have been change I could believe in.
  6. sleepwalking

    sleepwalking

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    I'll just add that when I went out on disability I kept the same great benefits that I had while working - until COBRA ran out. Because my SSD case dragged out over 3 yrs I was unable to keep COBRA. When I tried to pay for private insurance I was denied for pre-existing condition. I then found a law (HIPPA) that allowed me to purchase private insurance, but the premium was $750 a month. My deductibles were outrageous. I had a separate deductible for prescriptions, doctor visits, and lab tests. So I paid thousands of dollars out of pocket for the last 2 years, using all of my savings and now have nothing left.

    I finally won my SSD case in June, but wasn't eligible for Medicare until September. And it's not much better at covering the expenses and I also pay a monthly premium. It covers only a fraction of my doctors visits and tests like MRI's. And this year so far I'm finding that they won't cover drugs like Valtrex that they covered last year. So I will have to go off the medication I need because I can't afford it.
  7. Martlet

    Martlet Senior Member

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    I am sorry this has happened to you, but it is such a familiar story. Friends of ours who had to give up their small business when he fell ill had to fork out $1000 a month. They had to sell their home and then move in with his elderly father, just to survive until he was old enough for Medicare.

    I know how blessed we are to have Tricare, but we did have to make a lot of sacrifices to earn it! We are also blessed to have a very ethical doctors' practice with all sorts of specialists (no CFS specialists though) who are ready to negotiate with insurance companies. Without Tricare and my doctors, my medical bills for last year alone would have been close to $60,000, and none of that was CFS/ME-related.

    Please don't feel a need to apologise for venting. This is just one of the many ways CFS has impacted people's lives ... on both sides of the Pond ... and we are here to share and to support one another.
  8. Parismountain

    Parismountain Senior Member

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    I get a chuckle when I keep hearing the mantra currently going on when politicians keep saying everyone loves their Medicare. I use to have real insurance and now I've got Medicare and they are not close in comparison. A CFS patient dreads showing up at a doc already having to defeat the bias the doc has been taught and then on top of it Medicare doesn't pay him anything. I don't know any middle class senior who has just got Medicare, the wise ones always buy a Medicare Suplement to pay for or help pay for all those things which Medicare doesn't pay.

    Here's a funny one. I just had a sleep study done. My apnea (sp) is moderate, I stop breathing 11 times per hour. When the doc meets with me he says look fellow, I'm going to recommend that you have oxygen at night. We'll try it for 3 months. I've seen people who've stopped breathing 2 times per hour helped and I've seen people who have stopped breathing 18 times per hour not helped so in essence we just don't know. So we will try this and if it helps you it helps and we'll stick with it. Then he turns a page in his report and says uh-oh, you have Medicare. They only allow the oxygen if you stop breathing 15 times per hour. Okay here's what we'll do. Does your wife sew? Have her sew a pocket into the back of your pajama top between your shoulder blades. When you go to bed, put a tennis ball in the pocket and that will keep you off your back. Okay, Oxygen machine for people with insurance, tennis ball for those with Medicare. Hey, they wouldn't even buy the tennis ball.

    I've got to say transitioning from Cadillac coverage to Medicare is quite an eye opener. I use to try many alternative things my docs had suggested to get better which are not possible with Medicare managed coverage. I can just imagine if XMRV pans out a medicine developed which is effective some day which Medicare will just flat out not pay for. I need to up my dose of optimism I know but sometimes this stuff just gets to you at times.
  9. Katie

    Katie Guest

    Looks like I'm getting the new and improved test minus PCR. It's cheaper but I kinda wanted more than one type of test but beggars can't be choosers, I might still get the western blot.

    Exciting times.

    Pain killers are yummy ;)
  10. Alice Band

    Alice Band PWME - ME by Ramsay

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    Reply from VIP dx about the new test

    ------------------------------------------------------

    VIP Dx has updated the technology and improved the culture method which eliminates the need for additional PCR testing on whole blood.

    This one test combines two previous methods for a high sensitivity test. This is the most accurate diagnostic available for XMRV.
  11. garcia

    garcia Aristocrat Extraordinaire

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    Katie, do you know how much the new version of the test is?
    many thanks,
    garcia.
  12. Abraxas

    Abraxas Senior Member

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    garcia (love the avatar by the way!)

    This was posted by sleepwalker on another thread just a while ago:

  13. Katie

    Katie Guest

    It's approx 276 + 55 for Biolabs. Depends on the exchange rate used by HSBC on Monday but should be around that mark for UK folk.
  14. garcia

    garcia Aristocrat Extraordinaire

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    Thanks Abraxas! Do you recognize the picture?

    Thanks a lot for the info Abraxas & Katie. Katie, 276 sounds much more affordable than the 400 I paid. Almost wish I'd waited now! Although if this work pans out then frankly any amount of money is worth it.
  15. Abraxas

    Abraxas Senior Member

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    :rolleyes: Looks like Scotty or Chekov from Star Treck ?!
  16. garcia

    garcia Aristocrat Extraordinaire

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    It does look a bit like them doesn't it. Its Sci-fi, but not Star trek.

    I chose the picture to represent the limbo we are currently in with XMRV in particular, but also the limbo of being a CFS patient in general having to put your life on hold.

    The word "limbo" featured in this programme a lot.
  17. Abraxas

    Abraxas Senior Member

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    :confused: I'm still guessing! Another clue perhaps?
  18. natasa778

    natasa778 Senior Member

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    Fwiw antiherpetics do bring down HIV viral load. Jury is still out as to why exactly that happens...
  19. Lelvina

    Lelvina ex-Bookworm

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    Can I guess what it is? I think I know. I'd hate to ruin it though.
  20. garcia

    garcia Aristocrat Extraordinaire

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    Yes sure Lelvina, put everyone out of their misery!

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