Imperial College now offering PCR XMRV testing

[V99]

The ME Association has posted a response.

http://www.meassociation.org.uk/ind...erial-college-london&catid=30:news&Itemid=161

Imperial College, the research centre in the UK that has found no evidence of XMRV infection in any of the blood samples from people with ME/CFS that they have looked at, has announced that their Molecular Diagnostics Unit*is now offering their method for XMRV testing to the public: Imperial College announcement

MEA POSITION STATEMENT

Until we have the results from more replication studies the*link between*XMRV and ME/CFS remains speculative and unproven.*We do not therefore believe that*there is any point in*spending money on an expensive blood*test which is not, at present,*going to*act as either a*diagnostic marker or an aid to*management.* And any laboratory offering this test to the public has an ethical duty to make these points clear.*
*
We would, however, be interested to hear from anyone in the UK who does decide to have an XMRV test.
*
The latest MEA summary on XMRV can be found here.* A summary of the Imperial College research which looked for XMRV in ME/CFS can be found here.*
*
We*hope that*the situation regarding XMRV and ME/CFS*will become clear once results from the other replication studies appear in the scientific journals over the coming months.

 

[Min]

OK, I have it worked out now. I thought it was funny but it's not.

It's going to be the UK's National Health Service test for XMRV. Like the NHS Lyme disease test, it is designed not to find anything.

As with Lyme disease, only this test's result will be accepted as proof, private testing will not. Those testing negative with this test but positive by private testing will be denied National Health treatment, sickness benefits and private insurance pay outs.

it will save the health service, the DWP and the insurance companies a fortune

and who work for them? White, Sharpe, Chalder, Wessely etc etc ........

 

[thefreeprisoner]

Min where did you get this news? Is it just conjecture?

Rachel xx

 

[joyscobby]

Never, Never not ICL not Getting my blood.

What if this group were to pass the hat for joyscobby or DysautonomiaXMRV to be tested by Imperial College PCR XMRV? If one of these people were able and willing, and could give the group an idea of the cost of dr's fees and testing, and if Cort was willing he could set up a fund and when the amount is reached send the money to the appropriate person. It would put to rest the Wessely cohort question, maybe more.

Thank you doogle BUT NO WAY are Imperial College London getting my blood. Even if you were all to club together and pay me a billion pounds to do so.

Never, never ever, will they get there hand on my XMRV+ve blood


joyscobby

PS However, to any real and ethical Scientist in the UK interested in genuine research with an unbaised motive I would consider it.

 

[Min]

Min where did you get this news? Is it just conjecture?

Rachel xx

yes, just conjecture

 

[valia]

OK, I have it worked out now. I thought it was funny but it's not.

It's going to be the UK's National Health Service test for XMRV. Like the NHS Lyme disease test, it is designed not to find anything.

As with Lyme disease, only this test's result will be accepted as proof, private testing will not. Those testing negative with this test but positive by private testing will be denied National Health treatment, sickness benefits and private insurance pay outs.

it will save the health service, the DWP and the insurance companies a fortune

and who work for them? White, Sharpe, Chalder, Wessely etc etc ........

Thanks Min, I was trying to say the same earlier, you have worded it perfectly

 

[thefreeprisoner]

yes, just conjecture

[heaves big sigh of shuddering relief]

And I absolutely agree with Joy, we should NOT send ANY samples to IC.
The failure of their study has absolutely nothing to do with the cohort, and everything to do with them using the wrong method to find XMRV. If they had used the right method, they would have found at least 2 people who had XMRV in among the 186 samples even if none of them had real M.E.
Their test is wrong. It will never find anything like XMRV.

Rachel xx

 

[V99]

I suspect they are only interested in prostate cancer?

 

[Quilp]

Thank you doogle BUT NO WAY are Imperial College London getting my blood. Even if you were all to club together and pay me a billion pounds to do so.

Neve, never ever, will they get there hand on my XMRV+ve bloodjoyscobby

PS However, to any real and ethical Scientist in the UK interested in genuine research with an unbaised motive I would consider it.

Am I to understand that joyscobby and Dysautonomia have tested positive for XMRV ? Imagine that, them testing positive or even negative with the IC. Two cohorts, both having ME testing negative with IC when they have tested positive with VIPx. Contamination having being ruled out even by the CDC, would go a long way to proving the shortfalls in IC's testing procedures.
I plan to have the test with VIPx. If I am positive, i will ask IC to do a test shortly after. That will take three months in total and although other results from our studies will have emerged during this time, i think this is an excellent opportunity for us to further marginalise IC's testing procedures.
Somebody has got this very wrong; we need to find out who.

Kind regards, Mark

 

[joyscobby]

On a personal note all I can say is that I am flbergasted at this. Imperial College's motives for this are incomprhessible no matter how you try and look at it. They are playing a very dangerous game forthemselves, for the UK population and for xmrv infected people.

What else can be said I am gobsmacked.

It just gets crazier and crazier as far as they are concerned.



KOAN will not to need to sacrafice herself under a bus. It woulb be over my dead body.

I would be grateful if people would refrain from suggesting that I get tested by Imperial College .

 

[thefreeprisoner]

I think V99's view is worth considering - this may be more to do with prostate cancer...

 

[Knackered]

So are they using the exact same test as they'd used previously?

 

[froufox]

HAHAHA Mark that is too funny!!

I cannot believe they have done this I think its very unethical and irresponsible how they can offer a commercial test that has failed to find anything, it is completely crazy isnt it??

I have similar thoughts to you Min I fear that this might be taken to be the "legitimate" UK test. I think this is obviously what they are trying to do Anyway lets hope not and lets hope that no-one decides to go for this test!!

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[thefreeprisoner]

I don't think we ought to send this to them directly.
White, Chalder and Sharpe are not publicly associated with it (yet).
Much as it is really fun, we already have a reputation for abusing ME researchers; let's not frighten off any more talented scientists.

Rachel xx

 

[muffin]

MY Email to Mcclure, et al regarding their so-called XMRV test

lucy.goodchild@imperial.ac.uk[/email], m.mcclure@imperial.ac.uk, steve.kaye@imperial.ac.uk,
"Let me get this correct: first you put out a bogus study "New virus is not linked to Chronic Fatigue Syndrome, suggests UK research" that says the Retrovirus XMRV could not be found in 186 tested patients. Then, you put out a "XMRV Detection testing" for a Retrovirus you essentially believe does not exist in ME sick. This begs the question of WHY you have put this test out there. Are you ensuring that ALL test results come back negative to further "prove" that XMRV does not exist in the ME sick and do further damage to real research? When Wessely is involved in any sort of ME "research" one can only conclude that he is involved to damage true science and maintain ME as a psychological disorder and not a real physical disorder that may be caused, in whole or in part, by a Retrovirus. Your credibility in this area is very suspect and ME patients will NOT be using your test to help you damage them further.

The above sentiment has been made public via the media and the Internet. Those in the UK will either use the American WPI approved XMRV test or wait until that test is available easily in the UK, but they will NOT be using the faked Imperial College test. Your XMRV test is very suspect and no one with background knowledge of the ME politics would dare to make use of it.

Why would anyone provide Wessely et al with the rope with which to hang themselves?

Did it not occur to any of you involved that the ME sick would not immediately see through this asinine ruse and make their beliefs public as fast as possible? Stop playing these political games with a deadly Retrovirus and millions of very sick and disabled people. The more you play these type of games the more severe the damage to the reputations of all involved will be quite soon." END

GUYS: YOU MUST hit them in the media and across the internet. You must also email them and tell them this is bunk. My brother-in-law was just diagnosed with prostate cancer (I found out last nite) and is going through treatment. NOW I am very mad that the NIH/CDC damaged Retrovirus research back in the 1980's. Had they continued funding DeFreitas and others, quite possibly prostate cancer, CFIDS/ME, and other diseases may have been cured or well on the way to being cured. My BIL's prostate cancer only adds more JET fuel to my raging anger fire. I think we all know that is just NOT good.

Update: I re-read my own email and still do not see it as threatening. Maybe terse and possibly a bit rude, but not threatening. I just told them the truth. That's all...

 

[Knackered]

Is there any chance at all this could be a good thing?

They're obviously intelligent people, they know they've already not being able to find anything and they know other labs in the US are finding XMRV in British patients. If they're using the same test and it's the test that was broken, they'll just find 0% again. Maybe they've changed the test?

 

[muffin]

Send it to them. You have to fight back from the get-go. They are going to use this test to really hammer the last nails in your ME coffin. Don't let them do it. You already KNOW that the other "researchers" are going to get in line behind The Weasel, so hit them now and hit them hard.

Take it out to the media and across the Internet and make sure everyone knows that this "test" is bogus and a waste of money. HIT HARD, HIT FAST AND KEEP HITTING.

 

[Knackered]

Send it to them. You have to fight back from the get-go. They are going to use this test to really hammer the last nails in your ME coffin. Don't let them do it. You already KNOW that the other "researchers" are going to get in line behind The Weasel, so hit them now and hit them hard.

Take it out to the media and across the Internet and make sure everyone knows that this "test" is bogus and a waste of money. HIT HARD, HIT FAST AND KEEP HITTING.

Do we know whether that's true yet? Do we know whether it's the same test? Maybe they're using the same methods as VIPdx

 

[Min]

Can anyone with a scientific mind please write to the science correspondents of the Daily <ail and the Independent, the only papers that will put our point of view forward?

The weasel- hugging Guardian will have a field day.

Will the IC also be offering XMRV related prostate cancer tests to women? That way they'll be guaranteed negative results.

 

[Knackered]

I emailed Myra McClure to ask her whether they were using the same test, she replied:

Our test was always reliable

And another reply:

The paper and the website clearly state that we cannot detect XMRV in UK CFS patients. The sensitivity of our assay is 1 copy. It cannot be made more sensitive.

Basically this is a test that going to give you a negative by the looks of it.

How can they say their test is reliable when they've never been able to find it?