Imperial College now offering PCR XMRV testing

[Martlet]

If people fell out with you for your politics Martlet, more fool them, because you seem like a million carat gold kind of person.

Thank you for that compliment. It made me :Retro redface:

I am quite surprised that a moderator on a global site for worldwide expression should appear to take the stance to stick to your own backyard.

I actually believe in community organising, in advocacy being at the most local level practical. You raised the Obama campaign, but that was not won globally or even nationally, but rather street by street, town by town, with very focused, very targeted efforts. I want to see effective advocacy, not the sort that will be ignored. Of course, everyone is free to disagree with me and I understand that, but I can only recommend ways I have found effective and cannot go with the notion that angry letters get us anywhere.

 

[thefreeprisoner]

As a former University lecturer and researcher, I have been the recipient of rude and angry letters myself (one anonymous, one signed).
Their only results were to upset me A LOT, and strengthen my resolve to prove the writers wrong.

To me, it didn't matter which country these two furious writers were in. I perceived the mails to be rude and angry, and thus it weakened the senders' case.
To take an example from the other side, the blogger ERV greatly weakens her case by being militant.

Rachel xx

 

[Quilp]

As a former University lecturer and researcher, I have been the recipient of rude and angry letters myself (one anonymous, one signed).
Their only results were to upset me A LOT, and strengthen my resolve to prove the writers wrong.

To me, it didn't matter which country these two furious writers were in. I perceived the mails to be rude and angry, and thus it weakened the senders' case.
To take an example from the other side, the blogger ERV greatly weakens her case by being militant.

Rachel xx

'In 1889, Emmeline founded the Women's Franchise League, which fought to allow married women to vote in local elections. In October 1903, she helped found the more militant Women's Social and Political Union (WSPU) - an organisation that gained much notoriety for its activities and whose members were the first to be christened 'suffragettes'. Emmeline's daughters Christabel and Sylvia were both active in the cause. British politicians, press and public were astonished by the demonstrations, window smashing, arson and hunger strikes of the suffragettes. In 1913, WSPU member Emily Davison was killed when she threw herself under the king's horse at the Derby as a protest at the government's continued failure to grant women the right to vote.

Like many suffragettes, Emmeline was arrested on numerous occasions over the next few years and went on hunger strike herself, resulting in violent force-feeding. In 1913, in response to the wave of hunger strikes, the government passed what became known as the 'Cat and Mouse' Act. Hunger striking prisoners were released until they grew strong again, and then re-arrested'

Interesting ? Emmeline is largely credited with legislation granting women the right to vote. Rachel if i was well i could given you a hundred other examples from equal rights gays, to the equal opportunities act. Many, many many struggles took place, and they weren't all about polemics. Sometimes Rachel more is needed, sometimes more is achieved. History speaks for itself.

Mark

 

[Dx Revision Watch]

Archived ICL web pages

Anyone taken screen shots of the Imperial college site? I wanted to but can't remember how to do it

valia,

I have copies of all the text (but not the images) from all the web pages on Imperial College, London website that relate to the XMRV Detection Testing archived on my own site in this posting:

http://meagenda.wordpress.com/2010/...lege-london-xmrv-detection-testing-web-pages/

Complete text of Imperial College, London XMRV Detection Testing web pages

Shortlink: http://wp.me/p5foE-2K1

This includes:


Text on main information page ( http://tinyurl.com/XMRVDetectionTesting )

Text on the User instructions page, plus shipping details
Text of the Request Form
Word doc of Request Form

as the pages and Request Form file stood on 06.02.10

This posting also includes the notice issued by the ME Association on 6 February.

Quotes from the email response received from the office of Professor Wessely on 5 February.


I have also saved a Print Screen of the Google cache page for the main information page as cached on 27 January 10. The other two pages do not appear to have been cached yet.

This material will remain on my site irrespective of any changes to the text made by Imperial College or the anticipated clarification that the ME Association has been informed will be issued this coming week.

When the pages are revised (or a statement issued) I will post the revised text on my site.


The ME Association does not clarify in its notice who provided the information that the XMRV test is intended only for "referring doctors who are dealing with cases of prostate cancer" and that Imperial College is understood to be issuing a clarification on its website on Monday.

I will enquire of the ME Association the provenance of that information.


The main information page states:

"Please note we can only accept test requests and samples from medical practitioners (GPs or hospital doctors) we will not accept test requests directly from patients."

The Request Form states

"Note we will only accept requests from doctors or clinics, not directly from patients."

So whatever disorders the test is intended for, a referral for the test from a GP, consultant or private clinician would be necessary and they would act as handlers.

Suzy Chapman

 

[thefreeprisoner]

Hi Mark,

Public, direct action such as the suffragettes took is VERY different to individuals writing rude and angry letters to individual scientists.
That happens in private and against one individual.
It's not really a comparison.

Rachel xx

 

[oerganix]

Hi Mark,

Public, direct action such as the suffragettes took is VERY different to individuals writing rude and angry letters to individual scientists.
That happens in private and against one individual.
It's not really a comparison.

Rachel xx

True as far as it goes, but those seeking equal rights at that time did not have the internet and email. I have no don't they would have used it in much the same way if they had. Mark's point that responding nicely and politely to immoral and illegal behavior directed at a perceived weak and powerless group does not work is still valid. That the group being mistreated at this time is also largely disabled also makes a difference in how members may protest maltreatment. I do not advocate violence or threats of violence, but I think anger and rudeness are sometimes appropriate. Like joy or manners, they both can be overdone to where they are not appropriate, but like joy or manners, they are sometimes the only appropriate response to the hostility and powerful but stealthy agression directed at a group of human beings who are physically ill and living in the surreal situation of being maltreated by those who are supposed to be doing healthCARE.

Many therapists say that depression is anger directed at the self. If so, maybe it's time to take this self-directed anger and direct it outwardly, in a controlled, constructive and pragmatic way, for those who are in favor of trying this new therapy. If, as the proponents of the 'you're depressed' theory of organic illness are right, I should think that some of them would embrace our new, healthy behavior, instead of trying to sell us more antidepressant drugs.:Retro tongue:

Rachel, I really like your signature lines, but how rude, how passive agressive.:Retro wink:

 

[joyscobby]

being assertive

What organix says is true about how we often internalise the anger. We end up hateing ourselves. I havei in the past but this has recently changed for me. I am angry at the way I and most of us have been treated over many decades. However, anger is a distructive force it hurts us whether directed internaly or externaly. Being aggressive is met by agression. Instead of agression I would argue that we should take the aproach of being assertive. Saying no. Saying no more. We can do this with out agression or being passive.

see the difference

http://en.wikipedia.org/wiki/Assertiveness

 

[thefreeprisoner]

True as far as it goes, but those seeking equal rights at that time did not have the internet and email.

They had the means to write angry, rude letters, which is an exact parallel of email in those days.

I have no don't they would have used it in much the same way if they had.

OK -- addressing the suffragettes' tactics directly -- many historians believe that their militancy only served to SET BACK the women's movement in the UK.
An equally commonly accepted view of the history is that it was only until after the First World War when women took over jobs and men realised that we were just as competent with less training, that we got universal suffrange eventually in 1928. Contrast this with New Zealand where the suffragette activity was mainly through petitions and editorials in newspapers. Women got universal suffrage in in New Zealand in 1893, a full 35 years earlier.

I don't want to wait 35 years longer than I have to.

Mark's point that responding nicely and politely to immoral and illegal behavior directed at a perceived weak and powerless group does not work is still valid.

I think I have been misunderstood.
I am arguing against being rude and angry in private correspondence directly addressed to an individual.

If so, maybe it's time to take this self-directed anger and direct it outwardly, in a controlled, constructive and pragmatic way, for those who are in favor of trying this new therapy.

Acting out anger makes it grow. It becomes more unpredictable and less easy to control. Directing anger towards one individual is playing with fire.

I love this quote from Thich Nhat Hanh and have found it to be true in my experience:
"People who use venting techniques like hitting a pillow or shouting are actually rehearsing anger. When someone is angry and vents their anger by hitting a pillow, they are learning a dangerous habit. They are training in aggression. Instead, our approach is to generate the energy of mindfulness and embrace anger every time it manifests."

Rachel, I really like your signature lines, but how rude, how passive agressive.:Retro wink:

That's the difference with my signature -- you have been able to see it in order to comment on it. It is public. I am accountable to it in full view of everybody. If somebody gives me a cogent argument why I should change it, I can listen and perhaps edit it in response and everybody sees that happen.

I like satire. Satire is one of those things that works. But it doesn't work if it is private. It needs an audience.

Rachel xx

 

[Esther12]

Public, direct action such as the suffragettes took is VERY different to individuals writing rude and angry letters to individual scientists.
That happens in private and against one individual.
It's not really a comparison.

I really don't understand why people think it makes sense to compare angry e-mails from CFS patients to widescale social movements promoting civil disobedience.

It seems as if there's a desire to adopt a warrior mentality, and be able to think of ourselves as powerful, brave fighters. We've been attacked and treated unfairly, and that means we should have the right to hit back. I understand and share it as an emotional response, but the attempts to rationalise it as the pragmatic course of action most likely to benefit us seem really weak.

To tap into martlet's discussion about American politics, it reminds me of the way some Americans have responded since 9/11. A desire for toughness and machismo for its own sake. Who cares if using torture on terror suspects undermines America's arguments and encourages further recruits for their enemies? - we'll kill them too. Achieving our aims isn't enough - we want revenge! It didn't work for the world's only super-power, and I don't think it's going to work for us. We're not starting from a position of strength, and attempts to bully our opponents over the internet are just going to seem pathetic.

What's the most 'militant' piece of writing on the internet from those supportive of Wessely etc? Did it impress anyone? Did it make you think that you should avoid working against their position because they sounded so powerful and scary? I can't imagine so.

 

[valia]

valia,

I have copies of all the text (but not the images) from all the web pages on Imperial College, London website that relate to the XMRV Detection Testing archived on my own site in this posting:

http://meagenda.wordpress.com/2010/...lege-london-xmrv-detection-testing-web-pages/

Complete text of Imperial College, London XMRV Detection Testing web pages

Shortlink: http://wp.me/p5foE-2K1

This includes:


Text on main information page ( http://tinyurl.com/XMRVDetectionTesting )

Text on the User instructions page, plus shipping details
Text of the Request Form
Word doc of Request Form

as the pages and Request Form file stood on 06.02.10

This posting also includes the notice issued by the ME Association on 6 February.

Quotes from the email response received from the office of Professor Wessely on 5 February.


I have also saved a Print Screen of the Google cache page for the main information page as cached on 27 January 10. The other two pages do not appear to have been cached yet.

This material will remain on my site irrespective of any changes to the text made by Imperial College or the anticipated clarification that the ME Association has been informed will be issued this coming week.

When the pages are revised (or a statement issued) I will post the revised text on my site.


The ME Association does not clarify in its notice who provided the information that the XMRV test is intended only for "referring doctors who are dealing with cases of prostate cancer" and that Imperial College is understood to be issuing a clarification on its website on Monday.

I will enquire of the ME Association the provenance of that information.


The main information page states:

"Please note we can only accept test requests and samples from medical practitioners (GPs or hospital doctors) we will not accept test requests directly from patients."

The Request Form states

"Note we will only accept requests from doctors or clinics, not directly from patients."

So whatever disorders the test is intended for, a referral for the test from a GP, consultant or private clinician would be necessary and they would act as handlers.

Suzy Chapman

Thanks Suzy, it's good to have someone around who has their wits about them.

I tend to know I should be doing something but can't quite remember what or why

 

[Quilp]

Hello Rachel thanks for the clarification :-

'I think I have been misunderstood.
I am arguing against being rude and angry in private correspondence directly addressed to an individual'

You make some interesting points. Congratulations on becoming a moderator, I think the powers that be have chosen wisely )

 

[Martlet]

Emmeline is largely credited with legislation granting women the right to vote. Rachel if i was well i could given you a hundred other examples from equal rights gays, to the equal opportunities act. Many, many many struggles took place, and they weren't all about polemics. Sometimes Rachel more is needed, sometimes more is achieved. History speaks for itself.

The suffragettes did not engage in an angry letter campaign. Their more excessive methods set them back. Where they were successful, it was through putting their lives on the line, using passive resistance to good effect. I am a great believer in passive resistance but it is not for the feint of heart. It has tumbled empires, overthrown discriminatory systems, ended wars, but it comes at a price. Those trained in modern passive resistance know that when they take action - chaining themselves to railings, blocking the flow of traffic, going on hunger strike, crossing a line at the School Of The Americas, to name just a few tactics - they know that no matter what happens to them, they must not speak back or strike back, but must humbly submit to whatever is dealt out to them. Is that what you are advocating?

 

[Quilp]

The suffragettes did not engage in an angry letter campaign. Their more excessive methods set them back. Where they were successful, it was through putting their lives on the line, using passive resistance to good effect. I am a great believer in passive resistance but it is not for the feint of heart. It has tumbled empires, overthrown discriminatory systems, ended wars, but it comes at a price. Those trained in modern passive resistance know that when they take action - chaining themselves to railings, blocking the flow of traffic, going on hunger strike, crossing a line at the School Of The Americas, to name just a few tactics - they know that no matter what happens to them, they must not speak back or strike back, but must humbly submit to whatever is dealt out to them. Is that what you are advocating?

Hello Martlet, i was trying to look back at where we are now, and what could have been if we had been in a position to adopt a more proactive stance. To some extent this is a futile argument because by our very nature we are not in a position to exact a more aggressive stance. Sorry my brain is hurting a little.
Simon Wessely often complains that he receives hate mail. He says that 'it comes with the job' and yet in the last twenty years he has become stronger and stronger. The Wessely school has now emerged. Clearly angry emails to him didn't work, although it may have made a number of people feel a lot better
I believe that a more aggressive approach in the late eighties when the illness was termed 'yuppie flu' would have served us better although i cannot prove it to be so; though i can scarcely believe that it could have been worse.
I then drew upon parallels from history in which resistance has worked. From passive resistance, to polemics, to public protest. I'd like to think that if i knew what i know now, i would have camped outside Parliament Square in London until i changed the Status Quo.

Kind regards, Mark

 

[Martlet]

I'd like to think that if i knew what i know now, i would have camped outside Parliament Square in London until i changed the Status Quo.

Kind regards, Mark

I think we all would, Mark, but none of us could have imagined it would have turned out this way. We were accustomed to sick people being taken seriously, to people actually caring, not to whole groups of patients being marginalised, at times brutalised, by the very system that was supposed to care for them. I still wonder if that might be the way to go though. Is there not something planned for this May? Or did I just dream that up?

 

[Quilp]

I think we all would, Mark, but none of us could have imagined it would have turned out this way. We were accustomed to sick people being taken seriously, to people actually caring, not to whole groups of patients being marginalised, at times brutalised, by the very system that was supposed to care for them. I still wonder if that might be the way to go though. Is there not something planned for this May? Or did I just dream that up?

I think you make an excellent point; so many of us trusted our doctors at the outset. I still remember being sent to see a psychiatrist in 1995 with a skip in my step because i actually believed that he was in some way going to help me. It never even occurred to me that my GP didn't believe i had an organic illness.
I just cannot see past the injustices that have been committed in the last twenty years, and i am one of the more fortunate ones in that i have improved over time.
Brutalised is a very good word. I wonder how many of us are the same people ? I have changed so much in the last fifteen years. I have come to an unpalatable conclusion about who we are as a race of people. I was baptised as a Roman Catholic, but i cannot bring myself to believe in a just God any longer.
I have a picture of Lynn Gilderdale on my desk, on the front cover of last weeks Times newspaper. I see her face every night before I go to bed. It isn't just that we are ill, it is that just when we needed the medical profession most, they turned their back on us. I cannot comprehend this, and i suppose i never will. My feelings of anger have been forged on the altar of despair and in truth my judgement may not be what it should. Indeed i sometimes wonder why i haven't gone mad. Wouldn't that be a strange irony.

Kind regards, Mark

 

[Martlet]

I was baptised as a Roman Catholic, but i cannot bring myself to believe in a just God any longer.

You know, it's funny how differently the same thing affects different people and I am glad of your honesty, but in many ways saddened by your words. If anything, illness brought me closer to God and it has been precisely that relationship that has enabled me to go through so much - not only illness - without depression or bitterness. I have become more aware that God's answer to Man's inhumanity was not to wield the power of justice, but to come to experience the worst of our inhumanity, to share in it, to stand against all the powers of Hell, in the person of Jesus. I don't demand justice. Not God's justice, because I know that I could not stand in the ferocity of the winds that would blow. My life has not been perfect. Instead, I bathe in the gentle waters of his mercy, leaving judgment to him. That does not mean that I don't bristle at injustice carried out by Man against his brother. It has been my very Christian identity that prompts me to fight for justice, exquisitely aware that we are interconnected as children of the Most High.

I have long been convinced that the Bible doesn't give us two criminals hanging on crosses beside Jesus for nothing. I think they are there to illustrate to us that bad stuff happens, but that we are then given a choice in how to deal with it. We can rail against the innocent victim of man's cruelty, allowing our anger to twist us, or we can simply say, "Jesus, remember me when you come into your kingdom."

This little "homily" probably belongs in the Christianity thread, or lends itself to private discussion - I am always available - but I just wanted to slip my hand into yours, spiritually speaking and to say, "I understand you, my brother, and I will walk with you. Please don't despair."

 

[Quilp]

You know, it's funny how differently the same thing affects different people and I am glad of your honesty, but in many ways saddened by your words. If anything, illness brought me closer to God and it has been precisely that relationship that has enabled me to go through so much - not only illness - without depression or bitterness. I have become more aware that God's answer to Man's inhumanity was not to wield the power of justice, but to come to experience the worst of our inhumanity, to share in it, to stand against all the powers of Hell, in the person of Jesus. I don't demand justice. Not God's justice, because I know that I could not stand in the ferocity of the winds that would blow. My life has not been perfect. Instead, I bathe in the gentle waters of his mercy, leaving judgment to him. That does not mean that I don't bristle at injustice carried out by Man against his brother. It has been my very Christian identity that prompts me to fight for justice, exquisitely aware that we are interconnected as children of the Most High.

I have long been convinced that the Bible doesn't give us two criminals hanging on crosses beside Jesus for nothing. I think they are there to illustrate to us that bad stuff happens, but that we are then given a choice in how to deal with it. We can rail against the innocent victim of man's cruelty, allowing our anger to twist us, or we can simply say, "Jesus, remember me when you come into your kingdom."

This little "homily" probably belongs in the Christianity thread, or lends itself to private discussion - I am always available - but I just wanted to slip my hand into yours, spiritually speaking and to say, "I understand you, my brother, and I will walk with you. Please don't despair."

Marlet that is so so moving. Your post has such a clarity that i know exactly what you mean, and you are right. I was once very close to God, and i am sure there is more to life. In fact i have had three experiences in my life that proves to me that we carry on after life and all of them came after i became ill.
You are so kind, and i am happy that you have taken much comfort from Christianity. I hope this continues to be so because i do believe that for many their religion is an enormous source of peace, love and understanding. I hope that one day i'll find my way back, and with people like yourself nearby i know i have a chance; i know that we all have a chance.

lots of love, Mark

 

[usedtobeperkytina]

Interesting discussion.....

Yes, in the beginning, the belief was that if only they could see the evidence, then government officials will take it seriously and look into it. Evidence builds, builds, builds, builds, builds, and still they don't give us or our illness the deserved attention. But, maybe next year, maybe this next study, etc. Over time, when trust is broken, the feelings are anger and despair, loss of hope.

Once we realize the problem is not a lack of evidence, but deep seated bias, then a more confrontational approach is needed. As stated, passive resistance is most effective then hateful words, that are quickly dismissed.

Another problem is passive resistance requires energy. Step number one, we have to have enough energy to get dressed and get ourselves out of the house. The illness makes us lose so much, that what little we have must go to survival.

But, one idea I have mentioned before is "lay ins." Find a doctor that doesn't believe CFS is organic, which shouldn't be that hard, and then on a certain date, we all take our lawn loungers, wearing pajamas, blankets, hair undone, no makeup, and we lay down in front of doctor's office with signs that say, "We're tired of being ignored." "We're tired of lack of research funds." etc. You get the idea. And we lay down on the loungers (on public property, of course) with our signs on the back of our loungers. Media comes, etc. etc.

We could do it at CDC also.

Anyway, we would need an organization to get us all together to do that. But, our organizations are spending their resources funding research and educating us, the newly sick and lobbying Washington.

The best thing that can happen to us is for XMRV to be seen as cause of CFS and many other illnesses, such as autism. Then, the support for the same thing, more research into XMRV and improved doctor education and improved patient care, will take off.

I have noticed that there is a strong campaign for breast cancer. There is a new campaign that is receiving lots of attention, "Go Red". It is for women with heart disease. Why, oh why, can we not get attention to this big woman's issue, CFS and FM? We need some PR firm to put our illness into the mainstream culture.

But, again, lack of resources.

Tina

 

[talkingfox]

Tina, how about the use of surrogates in demonstration? I remember when Act Up! was staging demonstrations there were many who were too ill to participate, so their surrogate would hold a picture of them during the rally or whatever thing was happening.
Unfortunately they also held pictures of the dead....

I really think that there are those out there that would be willing to help, just as there was in the early days of HIV advocacy.
I also think that there needs to be some sort of physical thing that gives the public at large some sort of idea as to the sheer numbers of the effected, not unlike the AIDS quilt in DC. I remember healthy folks in the public at large saying " Oh MY....it's HUGE...I had no idea..."

 

[thefreeprisoner]

Mark...

I'm really sorry to hear about your despair and anger. A friend of a friend calls it the 'Black Dog' that mauls you when you feel worst and keeps following you around like a shadow.

The tragedy of Lynn Gilderdale is that she gave in to the despair when hope was just around the corner. Perhaps that's why you feel so connected to her?
To me, that's what made it such a sad story. And yet there are thousands who don't make front page news, because they "rail against the dying of the light" every day.

I wrote a blog post recently which is sort of about this, if you want to read it?
Hope and cynicism

Like pretty much everybody around here, I find it really hard to understand why this awful stuff is allowed to happen. I struggle with it a lot. I have tantrums and tell God "I can't bring myself to speak to You today. You're mean and I am so mad at you." But once I've pelted my Daddy with bricks, I realise that if there is no God, then there can never be any justice, because if all we have is nature, justice is irrelevant. It would be one endlessly cruel dog-eat-dog world with no hope for the weak, and continual victory for the evil strong. And there's some of that going on, yes.

But... I also see a world where people sacrifice everything to help those who can't fight for themselves. Where peace breaks out against the odds. Where we do put things right. There are so many people that I know personally, who are doing extraordinarily good things, that if I told you about them this post would take up several dozen pages. (And I can do that, if it would help.) The problem is that you don't read about them in the news, because there are dark powers that want you to despair, because you're easier to control that way.

We're here for you Mark. I couldn't bear the thought of you giving in right now. There is hope, but they don't want you to see it. They want you to give in to the darkness. Resist... and hope...

Rachel xx