Imperial College now offering PCR XMRV testing

[oerganix]

There is a method to their madness, methinks

I wouldn't send any emails to Imperial college except very polite ones. The only bit of information that has reached the virologists at my husband's lab is that IP received hate mail after they published their research. They did not know anything about what that research was or why we were angry.

We are fighting a war, people, and mustn't give the other side any ammunition against us. It is getting dirty - I strongly suspect their motives - so we have to be smarter no matter how angry we are.

The whole sordid plot is becoming clearer. The rushed research paper is being given centre stage despite it's shortcomings and now their is going to be a test available just in case CFS in the US is confirmed as XAND.Mithriel

As I said before, and others have noted, this is probably part of the program to "prove" no one with ME in UK has XMRV or any other physical ailment. This 'test' will become the government required test and will 'prove' the person with ME doesn't have a physical illness that was caused by anything other than 'illness beliefs'. They 'sectioned' Sophia Mizra for not going to exercise therapy. Why wouldn't they also section those who refuse their bogus 'test'?

So, I would agree with Mithriel. It's better not to even talk TO them, but it's still OK to talk ABOUT them, but only in a calm, reasoned way. Don't remember who said it but: "Revenge is a dish best eaten cold."

And if we can't be calm, lets be funny. Thanks for the humor, guys! This development fairly screams for us to call in the clowns - oh, don't bother, they're already there!

 

[Esther12]

I would only claim that the IC test is faulty in some way if you know that this is true. I don't understand the technical issues well enough to say one way or the other, but I think we should be cautious with our claims, even if we feel that the IC have not been with their own. I sometimes worry that this forum can encourage people to get a bit carried away with things, and to be more sure of their beliefs than they should be. It looks to me as if things are still deeply uncertain with regards to XMRV.

 

[Esther12]

Come here and vent, but please don't vent at Imperial College.

I worry that even coming here to vent can help create an environment in which it's more likely others will send unhelpful e-mail to researchers. Living with CFS is really difficult, and it doesn't surprise me that people want to let off some steam, but I think it can often be unhelpful for the way others view CFS patients.

 

[oerganix]

The way others view CFS patients has already been established and our silence has given consent, to a certain degree. NO MORE SILENCE! No more editing ourselves at all times, in case we might be misunderstood -----somemore. No more internalizing those critics who have sought to make us our own captors, living in fear of offending someone. THEY declared the war. The resistance in on!

 

[George]

Yes, I have to agree, to be frightened and afraid and living in a hole in fear of angering those who supposedly have power get's you no where and implies consent. On the other hand (grin) going schizo just gives the opposition the opportunity to point out the schizo's.

So live, love laugh and use the wisdom that each of us has to make wise choices in how we handle to idiots and fools who are so desperatly trying to insulate themselves from (potential, as esther12 points out) truth. Must be some seriously scary potential.

 

[Gerwyn]

Why don,t we ask the WPI to validate the IC test against a known positive sample!!!

 

[Esther12]

I'm not pro-silence! We certainly need to join the debate where we can, but I just think that we should make sure we don't fall into the misplaced certainty that we so dislike about Wessely etc.

I think that the best way to win debates is to only make cautious claims which you are sure you can back up, while probing the claims of your opponent and trying to show where they have moved beyond that which can be reasonably supported by the available evidence. Too often I read posts on other webistes from angry CFS patients who are making claims that no-one else wil take seriously because of the way they're presented, often reinforcing the prejudices many people already have about CFS. We should edit ourselves to try to make sure we're not misunderstood - there's nothing noble about an indifference to clarity. It's always good for people to try to make their points as reasonably and lucidly as possible, but I think this is especially the case for us, given how CFs patients are already seen by so many others.

I don't want to imply that I have any right to tell others how to write, but these are my suggestions. You're certainly free to ignore them if you want!

 

[George]

Why don,t we ask the WPI to validate the IC test against a known positive sample!!!

I read in the Science article that one that was out last month that the WPI has offered to exchange samples in order to help validate the test. However, McCLure stands by her test.

Villagelife - there is the WPI = Whittmore, Peterson Institute and there is VIP Diagnostics or VIP Dx. I'm not familiar with WIP DX.
The site is down right now for a couple of reasons, one they are backed up on test, two they have validated the culture test against the PCR data and are switching to culture test only so nothing has been scrapped.

VIP Dx may be negotiated for rights to the serology test put together by the DHHS working group as well. Does anybody know which lab put that test together and did they collaborate with the Japanese?

 

[froufox]

Hi Mithriel,

Despite my post earlier I do totally agree with you. I've just edited my post just in case it does give more fuel to those out there who already think we are loopy. I definitely dont think that we should contact IC without careful thought and good evidence to back up any claims and we do need to keep our heads, its just easy sometimes to have a knee-jerk reaction in the face of such absurdity. The truth will win in the end and hopefully that won't take too long!!

I wouldn't send any emails to Imperial college except very polite ones. The only bit of information that has reached the virologists at my husband's lab is that IP received hate mail after they published their research. They did not know anything about what that research was or why we were angry.

We are fighting a war, people, and mustn't give the other side any ammunition against us. It is getting dirty - I strongly suspect their motives - so we have to be smarter no matter how angry we are.

The whole sordid plot is becoming clearer. The rushed research paper is being given centre stage despite it's shortcomings and now their is going to be a test available just in case CFS in the US is confirmed as XAND.

Mithriel

 

[VillageLife]

yes imperial college do test for HIV-1 and HTLV and other things....http://www1.imperial.ac.uk/medicine...e/infectious_diseases/mdu/diagnosticservices/

 

[Sasha]

Just read this thread and I can see a lot of distressed and angry compatriots! I agree that to offer an XMRV test when you've found zilch in a sample of people who should have had around 2-4% positive by chance (the background infection rate, according to the WPI & Japanese study) is thoroughly weird.

But my take on this is different to those suggesting that this will become the standard NHS test and that we're all doomed. If all the other labs in the world currently working on this find that XMRV causes CFS (the only scenario in which we would care what UK XMRV testing shows), then the XMRV/CFS story will be HUGE. There'll be no stopping it. Labs are already saying that they're working on tests cross-validated with the WPI samples so they'll end up with an internationally used standard test, surely. There'll simply be no getting away with offering a dud test even a few months from now.

Imagine even the worst-case scenario in which IC becomes the sole deliverer of NHS XMRV tests. Every ME patient who could afford it (and a lot will have a few hundred in the bank, which is all it would take) could have their blood sent to the US for testing if necessary, or to a UK lab that uses a validated test. If thousands of patients were telling their GPs that the world-leading lab had found them XMRV positive but the NHS one came up negative, their GP wouldn't ignore it, and that would add up to a lot of GPs - I can't imagine there's one in the UK without a few ME patients.

If XMRV really causes ME, there's just no stopping the story. I'd suggest that we should be patient (I know, I know!), let the real scientists do their thing, ignore the IC and their test (don't give them your money!). And I agree, no more angry emails that don't show us at our best.

 

[Abraxas]

I read in the Science article that one that was out last month that the WPI has offered to exchange samples in order to help validate the test.

I'm not sure which article you refer to George - but I seem to remember that the WPI and Imperial College agreed to exchange samples too, I thought it was on the PLos one website (in the comments section maybe) I've looked but can't find it now - does anyone remember this?

 

[Mithriel]

I wasn't getting at anybody, I'm sorry if it came across that way :Retro smile:

On the bright side, when OH told the virologists IC was selling a test they felt it was bare faced cheek and immoral as well.

Esther, we can criticise the IC study, it was bad science, whereas the WPI one was not.

I am shocked by McClure's email.

Even as a student I would never have got away with simply doing one experiment, getting a negative result and leaving it there. A negative result doesn't carry much information, too many things could have caused the result to be that way. I would have been more impressed if they had only found one or two positives.

A negative result must be repeated, checked, have variables changed and only THEN can it be claimed that something is not there. One set of test results and a claim that this proves XMRV is not in the UK is not science it is sheer arrogance. At the very least the test should have been run on a different group of patients, preferably using fresh blood.

XMRV is a new human retrovirus, one of only three. There is no reason to assume it will behave in the same way as HIV. To say that some parts of MLV are highly conserved so looking for thme is th esame as looking for XMRV is very dodgy.

The history of science is littered with the cast off theories of how things HAD to be. Scientists are meant to follow the data, but often they can't resist extrapolating beyond their facts.

For instance, everyone KNEW that the immune system was the only bodily system that was not controlled by the brain. After years of this being dogma, along came some researchers from outside the discipline who found the connection between the brain and the immune system because they LOOKED.

I have watched as dogmas have been overturned and now I am very suspicious of anyone who KNOWS something especially as a result of one experiment.

The WPI is doing science, they are excited, they are hypothesizing, but they don't claim to KNOW.

Mithriel

 

[julius]

After McClures response to Knackered, we now KNOW that these guys are not trying to do the right thing. We can only guess at what their motives are, but we now know what they aren't.

These are not scientists with an opposing view, they are heartless @#$%^'s with an agenda.

In one of the recent articles about XMRV the author stated that many scientists wouldn't comment because they were scared. If we are scaring real scientists, regardless of their point of view, then that is not good. But if we scare these dicks, then I'm all for it.

Go ahead and send nice little emails, sign petitions, write blogs. It won't change anything. These people are on a mission and polite discourse won't slow them down.

If there are a few psychos here who are able to put a little fear into these charlatans, then that's good.

 

[bullybeef]

I found the following response from Wessely on another forum. Apologies if already posted:

Thank you for your inquiry re the announcement from Imperial College that they are offering a diagnostic test for XMRV

I understand that this is not intended for people who know they have CFS or are concerned they might have CFS

I can see that this is not clear from the announcement though, but it seems this was an oversight which is going to be speedily corrected

I hope this clarifies matters

Simon Wessely

Professor Simon Wessely
Vice Dean, Institute of Psychiatry,
Head, Department of Psychological Medicine,
Director, King's Centre for Military Health Research,
King's College London

I am absolutely appalled by this test. It is unethical, exploitive, extortion and surely fraud. If they have reviewed their methods and they now have a more precise assay, then surely they would have retested their cohort first and released their results.

Based on Wessely's response, he is completely aware of what he is doing but to what end? The last time he raised his devious head, they couldn't find XMRV in the UK. A week later, people in the UK received their positive results. Maybe there is some positive news imminent and he's trying to defuse the positivity again.

I don't think I would take a NHS XMRV blood test now even if they pay me.

 

[George]

Thank you for your inquiry re the announcement from Imperial College that they are offering a diagnostic test for XMRV

I understand that this is not intended for people who know they have CFS or are concerned they might have CFS

I can see that this is not clear from the announcement though, but it seems this was an oversight which is going to be speedily corrected

I hope this clarifies matters

Simon Wessely

ummm. . .then who is it for??? Right now the only patient cohort with a link to XMRV are Prostate cancer patients as well as CFS. So this is only for Prostate cancer patients? So they are charging prostate cancer patients to find out if they have XMRV? Why would they do that? The prostate tumor percents are like 6% and 23% while the CFS population is like 50 to 100%.

I can't wait for the speedy correction mentioned above because these folks ain't making any sense at all.

 

[thefreeprisoner]

If there are a few psychos here who are able to put a little fear into these charlatans, then that's good.

Are you serious? I mean, really serious about something like that? Are you advocating that we send emails to researchers we don't agree with, with the direct intention of scaring them?

:worried::sad::worried::sad::worried::sad:

 

[bullybeef]

ummm. . .then who is it for??? Right now the only patient cohort with a link to XMRV are Prostate cancer patients as well as CFS. So this is only for Prostate cancer patients? So they are charging prostate cancer patients to find out if they have XMRV? Why would they do that? The prostate tumor percents are like 6% and 23% while the CFS population is like 50 to 100%.

I can't wait for the speedy correction mentioned above because these folks ain't making any sense at all.

Could it be autism, fibro or even gulf war syndrome? Whomever it is for, it isn't ethical. Maybe this wasn't meant for our eyes, but why post it on the net? I am glad I have sent this link to the Independent newspaper and the BBC before they get chance to re-word it.

 

[julius]

Are you serious? I mean, really serious about something like that? Are you advocating that we send emails to researchers we don't agree with, with the direct intention of scaring them?

:worried::sad::worried::sad::worried::sad:

No, I'm not talking about researchers. I was clear about that in my post. If a real researcher, tomorrow, did real research and proved that CFS is a phychological condition, then I would thank them. Seriously. Dissenting opinions and conflicting ideas are a healthy part of scientific research.

But that is not what these people are up to. This is not science, this is not research. Clearly, beyond any doubt, they have ulterior motives.

I stated in my last post that we can only guess what those motives are, but here are the only possibilities I can think of;

1) protection/advancement of career goals
2) pressure or offers of reward from vested interests (insurance companies)
3) trying to save face.

There is no possible way they are acting in the best interest of patients.

And this is my life they are messing with. I am suffering. I could die. It's the same for most individuals on this forum. They are sticking their fingers in my horrible diseased life, and it is not a joke. This is as serious as it gets.

If anyone here can propose a way that this group of 'researchers' are not acting in their own selfish interests, then please offer it on this forum.

 

[Mark]

It'll be health authorities for GPs on behalf of patients who pay for the test, I presume that's the implication. The other implication is that this testing will be offered to specific patients through their doctors under some as-yet unspecified circumstances. That the client group is not made clear seems utterly bizarre as others have noted. It would only be anything other than ridiculous - or some kind of subtle political ploy, perhaps an ironic or surrealist statement? - if there were an imminent announcement of an association between XMRV and some other condition which they had found in test findings as yet unpublished. (In which case, we can expect such news to complete peer review and publication in the next 3 days then?...I gather these things don't take very long at all these days...).