Imperial College now offering PCR XMRV testing

[thefreeprisoner]

Tina and Talkingfox.

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.

I luuuuuuuuuuuve this idea!
Martlet you were saying some kind of passive resistance is taking place in May -- is this the sort of thing they are doing?
Right, hubby, where's my wheelchair?!

Rachel xx

 

[Knackered]

I don't think this is a good idea, it'd make us look like lazy insane people, it's not something I'd like to be associated with and I hope it never happens, the newspapers would have a field day.

I'd rather research showed CFS to be organic.

 

[Lily]

I don't think this is a good idea, it'd make us look like lazy insane people, it's not something I'd like to be associated with and I hope it never happens, the newspapers would have a field day.

I'd rather research showed CFS to be organic.

I think you're right. They'd say if these people can be here doing this, they can be at work.

 

[Kati]

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.


Tina

Tina, I agree with you, I think we need to make ourselves visible to the public and decision makers. I don't think our doctors would do anything honestly. Many of us have been ill and bedbound for year, disappeared from their own lives, jobs and society and we are being ignored. I like to believe we are more and more vocal especially in here, and by sending letters and watching and acting on any news about ME/CFS. Time has come, we need to become visible again, and let people to see for themselves how people with ME has been treated all these years, and that some of us didn't make it and couldn't bear living like that.

Some researchers are taking huge steps, some doctors are giving beyond what is expected from them, and now it's time to put ALL the governments on board. We can't afford one more year of ignoring.

May 12 should be marked in our calendar and perhaps local activities should be organized? Invite the decisions makers to participate- talk person to person. Even if you have to lay down for it. We need more than ever to be heard and we need more than ever to get more research fund, and more education for our doctors.

 

[MEKoan]

Protests have been happening in the UK for many years. If you are in the UK, why not ask some of the veterans for advice and guidance. Yes, this demonstration is very small but if more people came... well... And, there have been others.

[video=youtube;OLFGPc_fZ7A]http://www.youtube.com/watch?v=OLFGPc_fZ7A[/video]

 

[ukxmrv]

One of the powerful ME actions in the UK was at the High Court with the Judicial Review. Lots of photos of people outside the court building

See down toward the bottom of this page

http://www.nicemecourt.co.uk/Outside_the_court.htm

Koan is right about there being a lot of experience here in the UK.

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

With one particular problem / impasse I took myself down to a conference in the UK with a pile of printouts and gave them out by the door explaining the problem. Security and the organisers came out to negotiate but they didn't get too tough because of the number of people that I spoke to.

They were actually mortified that I would air their dirty linen in public.

The became more manageable in the following weeks and we gained some concessions.

If we can get a "foot through the door" in some of these places it does become easier but patients do need to be prepared to do this. The problem is that many PWME cannot leave their homes and bed. I can only do so a small amount of the time.

Why more parents, siblings and partners aren't doing this I simply don't understand.

Before I became so very badly disabled I joined Act-up and learned a lot from them.

 

[valia]

One of the powerful ME actions in the UK was at the High Court with the Judicial Review. Lots of photos of people outside the court building

See down toward the bottom of this page

http://www.nicemecourt.co.uk/Outside_the_court.htm

Koan is right about there being a lot of experience here in the UK.

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

With one particular problem / impasse I took myself down to a conference in the UK with a pile of printouts and gave them out by the door explaining the problem. Security and the organisers came out to negotiate but they didn't get too tough because of the number of people that I spoke to.

They were actually mortified that I would air their dirty linen in public.

The became more manageable in the following weeks and we gained some concessions.

If we can get a "foot through the door" in some of these places it does become easier but patients do need to be prepared to do this. The problem is that many PWME cannot leave their homes and bed. I can only do so a small amount of the time.

Why more parents, siblings and partners aren't doing this I simply don't understand.

Before I became so very badly disabled I joined Act-up and learned a lot from them.

I understand all too well, for many of us our families don't believe we are really sick either.

 

[usedtobeperkytina]

Well, I don't think it will make us look lazy. As I said, we come with our hair in a mess, no makeup, etc. And we lay there with our heads down, curled up in the infant position. It is what we look like when we are sick and at home. The problem is, no one sees us like this.

And the demonstration in UK, while needed, had people who look healthy. THAT IS THE PROBLEM. PEOPLE DON'T BELIEVE WE ARE SICK BECAUSE WE DON'T LOOK SICK. So let's show them what we look like when we are sick.

Well, it was jut a thought. I don't have the time or energy to organize anything like that. I had a booth at the local festival two years ago with a banner and brochures from CAA. Right now, I have to put all my energy into earning a pay check.

But I can come up with ideas.

Tina

 

[flex]

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.

The Obama campaign was immensely influenced by global politics. Didn't you see him in Berlin? The whole of the rest of the world wanted change in America and America new that. It was a time when Americans had to reflect and see things from another perspective. Nobody, absolutely nobody wanted McCain outside of the US and we certainly didn't want more of the same like George Bush. Outside the US it wasnt about Republican or Democrat. People wanted someone they thought could stand for the truth. Someone to effect change.

This reminds me of our battle and how we should be using people power in a new revolutionary sense by means of global communication strategy. The world is a small place now because of global communication and we need to utilize that "street by street"

 

[Marco]

Have a look at the following article as one example of the power of dissent against the establishment.

http://www.spectator.co.uk/spectator/thisweek/5749853/the-global-warming-guerrillas.thtml

Please ignore whatever views you have on anthropogenic global warming or on the Spectator as a publication. The point is there have been few more entrenched establishment views than global warming, seemingly supported by the overwhelming majority of scientists, governments, intergovernmental agencies and uncritically reported in the media. Yet a few committed bloggers have managed to open the whole area up to debate - which I'm sure everyone would agree is healthy.

Why can't we take a similar approach by relentlessly highlighting the flaws in the psych lobby research, the real issue with Lyn Gilderdale's death, the lamentable failure of the CDC and MRC to fund proper research etc. I know these things are discussed here - but do we have enough CFS sceptic websites. You don't even need to leave the house never mind lie down outside your GP's surgery.

 

[Dx Revision Watch]

Important statement from Imperial College, London (XMRV Detection Testing)

[This report may be reposted provided it is published in full, unedited and http://meagenda.wordpress.com is credited as the source.]

From Suzy Chapman

8 February 2010


(Please note that all the pages for the XMRV Testing have been taken down and were off line at 11.15am GMT)


Important statement from Imperial College, London (XMRV Detection Testing)

Shortlink to ME agenda posting: http://wp.me/p5foE-2Li

Imperial College webpage:

http://wwwfom.sk.med.ic.ac.uk/medic...ses/mdu/diagnosticservices/xmrv_notification/

Imperial College London XMRV Testing Notification

XMRV testing

We wish to apologise for any confusion concerning the availability of
this test and would like to clarify that it is only available as part of an
ethically approved research project. We emphasis that our laboratory does
not deal directly with patients and we are not advising people who are
concerned that they might have CFS, or who have been diagnosed with CFS, to
request this test.​

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

Related information:

Previous Co-Cure mailing:

ACT: The Prof Wessely XMRV Detection Test exchanges Sun, 7 Feb 2010

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1002a&L=co-cure&T=0&F=&S=&P=4787


Suzy Chapman

 

[thefreeprisoner]

Koan that protest video was great!
Videos are a very powerful tool.

One of the things I'd love to do would be to go round all of the people who are members of the 25% M.E. group and take their stories and their living situations on camera. Bring out into the open what is invisible to most people. Perhaps something like this has been attempted already?

Rachel xx

 

[natasa778]

http://tinyurl.com/XMRVuserinstructions

User instructions

First time users

For routine testing, the required sample is one 4.5ml EDTA Vacutainer of
whole blood.

Isn't this one of the things Judy was commenting on, saying you need at least (25ml?) of blood to be able to perform a proper test....

This sounds as if they are set on proving there is no xmrv in UK prostate cancer patients either. No xmrv in UK full stop.

 

[Gerwyn]

Isn't this one of the things Judy was commenting on, saying you need at least (25ml?) of blood to be able to perform a proper test....

This sounds as if they are set on proving there is no xmrv in UK prostate cancer patients either. No xmrv in UK full stop.

That is exactly what I think I also think they are going to classify normals as having ME retrospectively They are also hoping to pick up about 4% in normal "controls" as a bonus to validate their tests presumably using higher volume samples

 

[ukxmrv]

Tina,

The comment you made about looking well is spot on.

At a demo outside a hospital I was able to stand for short periods and give out leaflets. A member of the public that I gave one to and spoke to about ME said "well I am glad that you are well now". I'm a wreck compared to how I used to look. Hadn't brushed my hair or even bathed before that event.

Valia,

I agree there are many families who will not help their members sick with ME as they do not believe in the disease. There are also families who cannot participate becasuse they need to provide 24 hours care.

The chap who used to organise the May demos in London (every May each year) tried to get interest in a "carers" event. He hoped to get family members to turn up instead (and there were the usual discussions about bringing photos of sufferers). He gave up when there was no interest

 

[Dx Revision Watch]

ME Association not prepared to confirm the source of the XMRV "prostate cancer" test

(Copy to Dr Judy Mikovits)

8 February 2010

The ME Association is not prepared to confirm the source of the XMRV
"prostate cancer" test information

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

On 6 February, the ME Association put out the following notice:

http://tinyurl.com/MEAonICLXMRVtest

"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."

Note no source for this information is given.

This morning, Imperial College, London, took down its XMRV Testing webpages and published this notice:

http://wwwfom.sk.med.ic.ac.uk/medici..._notification/

Imperial College London XMRV Testing Notification

XMRV testing

"We wish to apologise for any confusion concerning the availability of
this test and would like to clarify that it is only available as part of an
ethically approved research project. We emphasis that our laboratory does
not deal directly with patients and we are not advising people who are
concerned that they might have CFS, or who have been diagnosed with CFS,
to request this test."


Note no "full clarification" and no explanation of the specific purpose for
which this test is intended - only that it is "only available as part of
an ethically approved research project" and that Imperial College is "not
advising people who are concerned that they might have CFS, or who have
been diagnosed with CFS, to request this test."

So, a test for detection of XMRV in what, precisely, and for what research
project?

On Sunday, I emailed Tony Britton, ME Association Press and PR, with a
request that the ME Association clarifies the source of its information
that:

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

No response.

A few minutes ago, I telephoned Tony Britton for clarification. Mr Britton
says he is not prepared to "reveal his sources".

I asked Mr Britton if he would confirm or deny whether the information came
directly from Imperial College. He will not.

I asked Mr Britton if he would confirm or deny whether the information came
directly from Professor Simon Wessley.

Again, Mr Britton is not prepared to confirm or deny and terminated the
exchange.

Given the paucity of information contained within the notification issued
by Imperial College, this morning, speculation if rife.

The ME Association is evidently not prepared to be transparent.

How then, without knowing the source, can we decide whether this
information might be relied upon or not?

Perhaps in future, if the ME Association is unwilling to provide verifiable
sources for information such as this (which is in the public interest) it
should think very hard about whether it should be prepared to put that
information out in the first place.

So who was the ME Association acting as a spokesperson for?

And why is Imperial College not prepared to be transparent about the
purpose of this test?

Suzy Chapman
http://meagenda.wordpress.com

 

[Gerwyn]

they have their own agenda if it is ethically approved then we should be able to find out

 

[Dx Revision Watch]

"only available as part of an ethically approved research project"


But they were intending to charge referring doctors and hospitals 200 a pop for this test??????

The web pages had been up online since at least 27 January when the main information page was first cached by Google.

This gets murkier and murkier and the MEA is smoothing things over on behalf of an institution that appears to have seriously screwed up.

 

[Dx Revision Watch]

Someone needs to get an FOI in. I am up to my eyes at the moment and I cannot take this on.

All that is required is for the information requested to be set out clearly. You do not have to specify that you are requesting information "under the FOI Act" but you may as well request under FOI.

ICL will have an FOI page with the contact for the FOI office. You can do it via email. They will likely take 20 working days before a response is received.

Word it carefully in order to capture the data required.

 

[_Kim_]

"only available as part of an ethically approved research project"


But they were intending to charge referring doctors and hospitals 200 a pop for this test??????

The web pages had been up online since at least 27 January when the main information page was first cached by Google.

This gets murkier and murkier and the MEA is smoothing things over on behalf of an institution that appears to have seriously screwed up.

Since when does anyone have to pay to participate in ethically approved research projects? It's usually the other way around.

Is the research project a Wessely sociological study to see how ME patients react to the availability of a phony XMRV test?