Imperial College now offering PCR XMRV testing

[Min]

why is a professor of psychiatry, the government's very own denying machine, answering questions about prostate cancer testing?

 

[Bob]

So they can bar people with CFIDS from a commercial test? In the US that would be illegal. Anyone in the UK know if that is legal there?.

Hi Doogle,
We have a very different system here in the UK, and very few of us have private doctors, so I've never heard that question before.
We all get our health care on the NHS, and this test is only being offered privately through physicians.
We could possibly argue that it is illegal discrimination, but none of us want to get tested with the Imperial College team anyway, so I doubt if the legal implications would ever be put to the test!

Bob

 

[Mithriel]

So. let's see... First they claim XMRV is a virus that doesn't have a passport. No matter how many people have mixed with others who are from the USA or been there themselves, the virus has never once managed to infect anyone in Europe with CFS.

Now they are claiming that the virus IS in the UK but it doesn't infect healthy controls the way it does in the US and Japan, if it did they should have found at least 2 in 186 samples, and it doesn't cause CFS.

So we have XMRV BEHAVING differently in different continents.

That sounds like a psychiatric theory :Retro smile:

Let's give XMRV CBT to change its behaviour, much cheaper than antiretrovirals.

Mithriel

 

[Gerwyn]

Hi George They are going to "test" get a negative then later "confirm " that the patient had CFS according to their criterea retrospectively---sorry for the cynisism but that ,s what you get for 30 years in Medical politics----We need that assay method possibly from "a worried potential blood doner"

crafty heh! any ideas------

 

[Adam]

Announcement about XMRV testing at Imperial College, London
February 6, 2010 — meagenda
Announcement about XMRV testing at Imperial College, London

Shortlink: http://wp.me/p5foE-2JV

ME Association | 06 February 2010

IMPORTANT UPDATE – SATURDAY 6th FEBRUARY

Late last night The ME Association was informed that this announcement about XMRV testing does not apply to people with ME/CFS, or suspected ME/CFS.

It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer.

A full clarification will appear on the Imperial College website on Monday. It will appear here once we have it.

Dr Charles Shepherd

Hon Medical Adviser, MEA


Saw this on ME agenda site. Why did they not make this clear in the first place...anyone?

 

[bullybeef]

The following has been posted of the WPI facebook page:

Please check back here on Monday for the latest announcement from the Whittemore Peterson Institute.

I still believe it doesn't make less unethical to be keeping certain things quiet and charging to screen for a new human retrovirus that apparently doesn't exists in the UK, albeit, in ME sufferers.

They must think we are pretty naive. XMRV isn't in the UK, even though ME and Cancer are global.

 

[V99]

I would like to know what method they are using for this test. How do they know it will detect prostate cancer patients with XMRV, and why it is beneficial to those patients, if no direct cause has been found?

 

[bullybeef]

Maybe another research study has proven that XMRV does cause prostate cancer? But it doesn't make any sense why there is a fee. Usually when there is a fee, the research has already been done.

 

[thefreeprisoner]

I did suspect it was the case that this would just be for prostate cancer.
This makes things a lot clearer for me.

Rachel xx

 

[muffin]

From Muffin

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!

Since I was the one that wrote the email to the IC and was noted that the email could be viewed as "threatening", rude, and making CFIDS/ME people look like nuts, let me just say the following:

My email was signed with my name and my husband's name. I stuck my husband's neck out there with mine and he was quite senior in our DoD. So in essence, my money (my husband's reputation) was right where my mouth was. My email also had my contact information so that they could see I was an American and not a Brit. I make sure that when I email authorities that I play it straight and sign/address/telephone number so that they know where the email is coming from - I have no intentions of hiding my personal information from authorities when I write letters or emails. Lacks credibility when you do that. And I want a response.

Given that an American wrote that "threatening" email, it should not impact the British patients. It should, however, ensure that the UK researchers/authorities see that people outside of the UK are watching and aware - puts them on more notice than just the British ME sick they are damaging. The whole world is watching, including those nasty Americans.

In the US, that email would not be considered as threatening. No threats were made or implied. The email may have been terse or even butting up against rude but I do believe that if we don't fight back we will continue to suffer. We have kept our mouths shut for 30 years and no good has come from that. We have been quiet, gracious and did not rock the boat and we got nowhere. THEY have already tagged us as nuts (nutters) long ago and it was to discredit what we said and wrote. I think that banging on the UK/US health orgs/Gov't shows strength not mental illness. And quite frankly, the "dark side" will see that as well and it scares them - as it should because we are "on to them".

We can not continue to lay down and die. And if you see the post by Kurt on the early death rates of ME/CFIDS that is exactly what is going on. We die on average 25 years earlier than the rest of the population. Being well behaved, quiet, etc. won't change those death rates - that behavior won't change anything.

I have been severely disabled for 15 years and I don't expect the rest of my life to be much better short of the WPI and others quickly coming up with a cure that will work for the long-time sufferers (entrenched in our DNA types). I have already been facing down cancers and now my BIL does have an aggressive form of prostate cancer and a 9 year old child (my niece). I'm not very happy about any of this right now. And I over react as we have seen because now my family is involved, not just me - family.

Now, with all due respect to everyone - do you really think I am going to lay down and stay quiet? I did that for the first 13 years of my disease because I was just too sick and had too many personal issues to deal with mostly caused by CFIDS. Because of my niece and baby nephew I decided I had to get involved and fight - not for me, it's probably over for me, but for THEM.

Sorry guys if I seem offensive and aggressive - I guess I am now. I think I have good reason to be. I do believe that others feel the same way I do. They nailed us as nuts, never gave us funding, damaged and demeaned us each step of the way - and I think that enough is now enough. I do think it is time to slam back and I did. I also think we must continue to take the more formal routes like writing to Congress and Parliament and keep posting data, analysis, and thoughtful comments. But we also have to fight and sometimes that may get ugly or appear rude. Again, I think it will be viewed as a sign of strength and may push in the direction of real change for us all. Being quiet and complacent did not work.

So, to those that think the more formal approach is the way to go, continue on. To those that think this is a war that must be fought tooth and nail, continue on.

 

[Quilp]

Since I was the one that wrote the email to the IC and was noted that the email could be viewed as "threatening", rude, and making CFIDS/ME people look like nuts, let me just say the following:

My email was signed with my name and my husband's name. I stuck my husband's neck out there with mine and he was quite senior in our DoD. So in essence, my money (my husband's reputation) was right where my mouth was.
My email also had my contact information so that they could see I was an American and not a Brit. I make sure that when I email authorities that I play it straight and sign/address/telephone number so that they know where the email is coming from - I have no intentions of hiding my personal information from authorities when I write letters or emails. Lacks credibility when you do that. And I want a response.

Given that an American wrote that "threatening" email, it should not impact the British patients. It should, however, ensure that the UK researchers/authorities see that people outside of the UK are watching and aware - puts them on more notice than just the British ME sick they are damaging. The whole world is watching, including those nasty Americans.

In the US, that email would not be considered as threatening. No threats were made or implied. The email may have been terse or even butting up against rude but I do believe that if we don't fight back we will continue to suffer. We have kept our mouths shut for 30 years and no good has come from that. We have been quiet, gracious and did not rock the boat and we got nowhere. THEY have already tagged us as nuts (nutters) long ago and it was to discredit what we said and wrote. I think that banging on the UK/US health orgs/Gov't shows strength not mental illness. And quite frankly, the "dark side" will see that as well and it scares them - as it should.

We can not continue to lay down and die. And if you see the post by Kurt on the early death rates of ME/CFIDS that is exactly what is going on. We die on average 25 years earlier than the rest of the population. Being well behaved, quiet, etc. won't change those death rates - that behavior won't change anything.

I have been severely disabled for 15 years and I don't expect the rest of my life to be much better short of the WPI and others quickly coming up with a cure that will work for the long-time sufferers (entrenched in our DNA types). I have already been facing down cancers and now my BIL does have an aggressive form of prostate cancer and a 9 year old child (my niece). I'm not very happy about any of this right now. And I over react as we have seen because now my family is involved, not just me - family.

Now, with all due respect to everyone - do you really think I am going to lay down and stay quiet? I did that for the first 13 years of my disease because I was just too sick and had too many personal issues to deal with mostly caused by CFIDS. Because of my niece and baby nephew I decided I had to get involved and fight - not for me, it's probably over for me, but for THEM.

Sorry guys if I seem offensive and aggressive - I guess I am now. I think I have good reason to be. I do believe that others feel the same way I do. They nailed us as nuts, never gave us funding, damaged and demeaned us each step of the way - and I think that enough is now enough. I do think it is time to slam back and I did. I also think we must continue to take the more formal routes like writing to Congress and Parliament and keep posting data, analysis, and thoughtful comments. But we also have to fight and sometimes that may get ugly or appear rude. Again, I think it will be viewed as a sign of strength and may push in the direction of real change for us all. Being quiet and complacent did not work.

I probably will not be on this website very often for the next months because I have to deal with my sister, niece and my brother-in-law's prostate cancer. That should keep me quiet for a bit and also give me time to step back from being so angry at NIH/CDC and all the others who have damaged us for so long. Probably that should calm some fears that the Angry American Woman will be good for a bit. The last sentence was meant to be funny and a quick shot at myself - not disrespectful towards anyone else. Just a shot at me and my own recognition that I am deeply angry and maybe I do need to just step back a bit and calm down.

So, to those that think the more formal approach is the way to go, continue on. To those that think this is a war that must be fought tooth and nail, continue on.

That was so powerful muffin thank you. I sometimes wonder what would have happened if we had been more 'militant' thirty years ago.
If anyone can give a cogent, well reasoned argument that states that a more aggressive stance over the last thirty years would have strengthened the psychiatric lobby over that time, then i would like to hear it because right now, it's just about as bad as it can get.
Thank you for sharing your thoughts muffin. Let us indeed hope that WPI will come through for us.

love, Mark

 

[George]

Considering

Hi George They are going to "test" get a negative then later "confirm " that the patient had CFS according to their criterea retrospectively---sorry for the cynisism but that ,s what you get for 30 years in Medical politics----We need that assay method possibly from "a worried potential blood doner"

crafty heh! any ideas------

What you're proposing would be that the original prostate cancer patients with XMRV could end up fitting a description for CFS that is fatigue of unexplained (thus all in your head) type. Hmmm, I don't think it would work since if you have prostate cancer then you can not have CFS according to the criteria put into play both by Dr. Reeves as well as Dr. Wessley, Dr. White et al.

I don't know if they really meant to make this a private test in the first place or if they were going to hang it out there and see what happens but, providing a private test for prostate cancer patients and having them turn up XMRV positive would validate their assay. Kinda like see our assay's were working but the CFS patients didn't have XMRV. . .oh, kay I see where you're going with this.

This would save face. Got it. So a couple of young men with prostate cancer of an aggressive type are tested and found to have XMRV that means their test was right all along. Not that that fact could ever actually be established (roll eyes) But, they save face there and it would make sense of Dr. McClure's e-mail that they stand by their test.

Next because the test is available commercially some ME/CFS patient could get tested and come up positive and . . . what? They would be right back where they started from, unless they plan on blaming the now defunct Dr. Reeves for putting out an incorrect definition of CFS?? I suppose there might be a plan to make Dr. Reeves the whipping boy.

I dunna know, either way they will be screwed in the long term. I mean XMRV exists and it's not ubiquitous so researchers are going to stay on it till they find out if it causes disease. If it does then it's future work (money) for the labs and Pharma's and if it don't then (shrug) it's all over and on to the next thing. The B cell depletion study is half way to establishing a causal link.

I really can't figure out how they are going to get out of this and save face. If XMRV is causal for CFS, cancer or anything these guys are going to take one for the PLoS paper no matter how you slice it.

 

[thefreeprisoner]

(((((Muffin)))))

I am so sorry about all the stress you're going through. It sounds super-awful. It really does. I wish I could send you a whole sack of doggy biscuits. And magical no-calorie chocolate and hugs and all sorts of things.



Now: I'm trying to be as gentle as I can here, because your message worried me and I don't want to prod somebody when they're down and in pain.

I'm not immune to doing what you've done.
I'm speaking to you as somebody who sent emails alongside other Guardian readers here in the UK to US voters to try and persuade them to vote for John Kerry in 2004.
That backfired spectacularly. The US voters sent us back a resounding "Who the hell are you?"

I think this failure was partly due to the fact that our cultures appear similar, but they are different as a Mini Cooper and a Pontiac GTO. Please do not underestimate that. What seems pretty straightforward to somebody across the pond will be viewed as a scary affront to a Brit.

Please... at least take advice from our community before sending angry emails to prominent researchers... just to perhaps get a second opinion from those of us who will take the brunt of the UK Government's failure to recognise XMRV in ME sufferers, if that happens.

We are all in this together. It only takes one person to strike out on their own and make life considerably worse for everybody.

But we also have to fight and sometimes that may get ugly or appear rude. Again, I think it will be viewed as a sign of strength

In the UK, it's genuinely viewed as confirmation that we are nuts. Emails sent by Brits would tend to be written in a way that you might deem fawning or overly polite, self-deprecating and mildly humorous.
So we're one of the weirdest cultures on earth. Yeah, I know that. But you have to understand us before you can deal with us in a way that changes things.

Being quiet and complacent did not work.

I'd just like to point out that there really is no evidence for that. "Well, we don't have any treatment that works" you might say.
BUT where is the evidence that it's only now that people have started to write rude, confrontational or aggressive letters to researchers?
I'd be willing to be that has been ongoing since the 1980s, and certainly ever since the Ean Proctor scandal here in the UK.

Secondly I'd like to really question the statement that ME sufferers up to now have been quiet and complacent. I can't believe that for one second.
Silence and complacency certainly didn't set up the WPI.
We have some serious fighters on our side here, folks.

We should be angry, yes, because people are dying unnecessarily.
BUT we should direct that anger very carefully because it is powerful. If anger is used in the wrong way it becomes poison.

Finally muffin, please... for your own sake, go and have a good rest, for as long as you can. Try to get rid of the anger-poison because your family need your strength and love.

Rachel xx

 

[ukxmrv]

I don't think it is appropriate for people on this forum to tell others how to act, feel or campaign. We all have opinions here and that is all, opinions.

It's up to individual campaigners to decide that they want to do. I say this as someone who has campaigned in this area for over 20 years and seen many different styles and arguments. No one has the answer.

The only exception I would make is that we need to keep this Forum safe from closure and that means obeying whatever laws restrict us. Also the Forum owner has asked us to agree to certain conditions and I would like to see that respected. If we don't like them we can go elsewhere and start a new Forum.

 

[thefreeprisoner]

I'm sorry if my message has come across as bossy in any way. I am worried about muffin's health and well-being. I am also worried about how McClure is going to view us now and whether that will affect her willingness to work with WPI to improve her testing.

I do think that it is appropriate to make suggestions or to plead that somebody takes a certain course of action. I have seen a lot of threads on this forum where the community has told a particular person that they need to rest and take care of themselves, for example.

I think PWME can become isolated and sometimes we need a person to come alongside us and gently (or sternly) question our judgement or behaviour. I know I regularly need to be told to get to bed and rest up. It's not nice, 'cos I'm a stubborn soul and I tend to rebel.

But... there is a bit of serious irony here... and I may well have read your message wrong or misunderstood it in a big way but it does sound like you are telling people what to do

Rachel xx

 

[Martlet]

I don't think it is appropriate for people on this forum to tell others how to act, feel or campaign. We all have opinions here and that is all, opinions.

I think it's appropriate for members to make suggestions. As a British expatriate, I do see these differences thefreeprisoner mentions - very starkly. Added to which, the British authorities don't care one iota what the average American thinks about them, any more than Americans care what the British think. Letters written from overseas tend to be trashed.

The only exception I would make is that we need to keep this Forum safe from closure and that means obeying whatever laws restrict us. Also the Forum owner has asked us to agree to certain conditions and I would like to see that respected. If we don't like them we can go elsewhere and start a new Forum.

Indeed! We do have to obey laws governing the nations in which we live. Furthermore, we have to follow the rules set out by the forum owner and, as the newest addition to the moderator team, it is now thefreeprisoner's job to do this. I think she has been extremely gentle.

 

[Gerwyn]

I think it's appropriate for members to make suggestions. As a British expatriate, I do see these differences thefreeprisoner mentions - very starkly. Added to which, the British authorities don't care one iota what the average American thinks about them, any more than Americans care what the British think. Letters written from overseas tend to be trashed.



Indeed! We do have to obey laws governing the nations in which we live. Furthermore, we have to follow the rules set out by the forum owner and, as the newest addition to the moderator team, it is now thefreeprisoner's job to do this. I think she has been extremely gentle.

This is written from the perspective of the imperial college and is of course totally hypothetical!

We have a test that can now detect xmrv if present but we cant risk people with cfs having xmrv because we say this isnt true

so we will exclude any patients with real or suspected cfs from our new test so the following can happen;

we show the backgound level of xmrv in the "healthy " so our test is validated

We may pick up some xmrv in prostate cancer patients supporting this theory and gain plaudits from all

other patients negative for xmrv can later be reclassified as cfs at follow up questionaire so more evidence that there are cfs patients without xmrv

We can only win

Dont forget that these people as exteremly clever and as profs of medical depts ruthless they wont go down without a fight

I have seen this pattern so many times in the past to protect reputations or in the interests of political expedi
ency.
Is it happening now? you might think so but I couldn,t possibly comment

 

[Andrew]

Now's our chance to order xmrv testing from someone who can't find it.

 

[Advocate]

We may pick up some xmrv in prostate cancer patients supporting this theory and gain plaudits from all

Has any study ever looked for xmrv in peripheral blood mononuclear cells of men with prostate cancer? I thought researchers have looked only in cells taken from the tumor. (I can't remember which. Stromal cells? Epithelial cells?)

 

[muffin]

No, thefreeprisoner was correct in her assessments on the differences between how the English write and how the Americans write. I thought about that later on after I responded. I realized that when I said, "give him enough rope to hang himself" that the Brits may think that was a threat and not just a saying we use in the US. I then thought about how diffferent our humor is and how we do respond differently to eachother. So, I think I am OUT of the business of writing to the English. I am too American and that comes across and not in good ways. So, she is quite right and has made very valid points. I was watching Inspector Lewis last night and noted again what I saw when I lived in England. We do have very different cultures and the things that the Brits say to eachother would be considered very rude here anc vice-a-versa. I should have known better since I did live in England and saw first hand the very real differences. We may speak English but our culures and how we react to eachother, etc. ARE verry different. And I SHOULD have remembered that. I did think that having a Yank shake them might make them realize that they are being watched by the world, not just the people in the UK. I did come across as angry, a very angry American, indeed.
So no more writing to the Brits. I'll stick to the Americans where they are used to getting hit between the eyes type of writing. The British seem to talk around things and use snarky jokey but almost nasty comments to get their points across. The Americans just hit you in the face and you know you got hit in the face.

So, FreePris has done me a favor. I really should have known better. It is time for me to concentrate on my family as I just don't have the energy to be angry at the CDC/NIH and deal with a true life and death situation - and one that may leave a 9 year old without a father. So thank you for speaking up about the differences. It was all correct and dead on.