Imperial College now offering PCR XMRV testing

[valia]

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

 

[Lily]

We have some recent history which almost exactly parallels our current situation, which is the history of Multiple Sclerosis and how it became accepted as a condition with a physical cause.

Yes, and it would probably do us all some good to remember that even though MS has been accepted as a medical condition with a physical cause for many years now, the actual cause is still unknown. In addition, the current treatments although extremely costly are not very effective at all and have some nasty side-effects.

 

[George]

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

Hey Valia hit the PrtSc button up at the top of the keyboard usually, Then the control + the C key (at the same time and hold then let up at the same time) this will make a "copy". Then open up word or something and do a Control +V (yeah I know V for paste is just silly but there you have it) that will paste the copy to word or what have you. Then just save it!

 

[thefreeprisoner]

Yes, and it would probably do us all some good to remember that even though MS has been accepted as a medical condition with a physical cause for many years now, the actual cause is still unknown. In addition, the current treatments although extremely costly are not very effective at all and have some nasty side-effects.

The thing is... at least people with MS are treated sympathetically and can get disability without having to fight. They are further on than us.
But we need to focus on how they did it.
I don't think it was by shooing sociopaths towards the deniers.

Rachel xx

 

[Esther12]

Thanks for the discussion Rachel and everyone else,

When I look at history, I see rare occasions where calm, reasoned approaches have seen the weak and disenfranchised overcome the corrupt and powerful. But These are rare. In the vast majority of these type of situations, the meek do not inherit the earth. Rather, they are trampled underfoot. This is simply a fact of life as far as I see it.

To give you a little more direct answer to your question Rachel, no, I am not saying we should all write nasty letters to these people. But I don't think we should necessarily discourage any hotheads who want to do it.

I can't find the article where the author mentioned scientists not commenting out of fear. But, if Wessely even declined one interview out of a need for caution, then I see thaqt as a good thing.

I don't see civil disobedience working well with CFS patients. Anyone feel up for a riot? Bombing campaign? If not, I reckon reasonable calm discussion is the way foreward. I don't think our anger is scary - it's transparently impotent, and just something else that can be used against us. I understand why so many people are angry: I'm furious about the way CFS has been dealt with, but most of the expressions of rage I see from CFS patients seem entirely counter-productive. If people want to vent, that's up to them, but I think that doing so often brings with it a cost in terms of how others view CFS. Does it really look good having articles reporting that prominent CFS researchers feel unable to give interviews because they're receiving threats against their children from CFS patients raging about the implication that CFS may have a psychological component?

 

[_Kim_]

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

I have a screen shot saved valia.

 

[CBS]

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

And I just cached the site as well as their user instrucitons.

 

[Martlet]

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

Moderator note: That is completely out of order, Julius. We do not advocate or condone violence, nor do we encourage psychos. Please refrain from such comments in future.

 

[MEKoan]

The thing is... at least people with MS are treated sympathetically and can get disability without having to fight. They are further on than us.
But we need to focus on how they did it.
I don't think it was by shooing sociopaths towards the deniers.

Rachel xx

Hey Rachel,

As part of my journey I was diaguessed with with MS. During the weeks that transpired between being told I had MS to being told I probably didn't (I don't), I joined a couple of MS forums/message boards.

I was surprised to find out that people with MS are not necessarily treated sympathetically - not even by their neurologists. They reported being treated badly, having their experience dismissed, being told they could not really be as tired as they said, being told they were imagining symptoms and were not as disabled as they said.

The process of being diagnosed is long, difficult and often humiliating. Unless they lose their vision or the use of a limb, the process is long and hard. They worry about having their "diagnosis yanked" which happens more than you would expect especially if they do not meet the diagnostic criteria precisely. (The flip side of that is that there are people with ME who are diaguessed with MS because the criteria are not held to strictly.)

They have a lot of trouble getting disability unless their disability is obvious - blind, wheelchair bound, etc. They often find it very hard to get benefits when they are disabled by weakness, fatigue or cognitive issues.

And, many said that friends and family had totally checked out of their lives.

I was really surprised that they have so many of the same issues we do.

ETA I think it was the advent of imaging technology that turned things around for them - as much as it turned. A solid XMRV link would do the same for us but we would still have to deal with stuff if the experience of the MS community is anything to go by.

 

[ukxmrv]

George, yes I am XMRV+.

I've not made up my mind about declaring my status there but I'll wait and see. Over the past weeks I have written some letters to my local PCT (primary care trust) and await their reply. We are supposed to have PCT's and local hospitals that respond to local needs (ha ha ha).

IC is one of my local hospitals. It should fall under a SHA (Strategic Health Authority) that covers my area. Layers of pointless, expensive bureaucracy with the poor patient powerless underneath.

There may be a patients group at the hospital I can talk to as well or a patient rep who sits on what ever the management committee is. Not the PALS (useless). We used to have Community Health Councils but the Labour party abolished them. Now the patient reps tend to be stooges.

 

[Lily]

Hey Rachel,

As part of my journey I was diaguessed with with MS. During the weeks that transpired between being told I had MS to being told I probably didn't (I don't), I joined a couple of MS forums/message boards.

I was surprised to find out that people with MS are not necessarily treated sympathetically - not even by their neurologists. They reported being treated badly, having their experience dismissed, being told they could not really be as tired as they said, being told they were imagining symptoms and were not as disabled as they said.

The process of being diagnosed is long, difficult and often humiliating. Unless they lose their vision or the use of a limb, the process is long and hard. They worry about having their "diagnosis yanked" which happens more than you would expect especially if they do not meet the diagnostic criteria precisely. (The flip side of that is that there are people with ME who are diaguessed with MS because the criteria are not held to strictly.)

They have a lot of trouble getting disability unless their disability is obvious - blind, wheelchair bound, etc. They often find it very hard to get benefits when they are disabled by weakness, fatigue or cognitive issues.

And, many said that friends and family had totally checked out of their lives.

I was really surprised that they have so many of the same issues we do.

ETA I think it was the advent of imaging technology that turned things around for them - as much as it turned. A solid XMRV link would do the same for us but we would still have to deal with stuff if the experience of the MS community is anything to go by.

Precisely. The number of lesions noted on MRI does not necessarily correlate with the degree of disability. Also, in terms of the levels of fatigue, there is no correlation with the number of lesions.

 

[thefreeprisoner]

OK.... very interesting.
The grass always seems greener, doesn't it?

Rachel xx

 

[talkingfox]

Idiots or wankers? We better do a study.

I think it's likely that we'll find the conditions are co-morbid, given the current data

 

[thefreeprisoner]

LMAO!

 

[valia]

Hey Valia hit the PrtSc button up at the top of the keyboard usually, Then the control + the C key (at the same time and hold then let up at the same time) this will make a "copy". Then open up word or something and do a Control +V (yeah I know V for paste is just silly but there you have it) that will paste the copy to word or what have you. Then just save it!

Thanks George, but doesn't work like that on my Mac, there is an application for it, but too pea brained today to work it out, just glad someone has it
.

 

[Sasha]

From the ME Association website:

Saturday, 06 February 2010 08:11
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

 

[Funkster]

What a bunch of MORONS at IC...

Thats all I have to say... MORONS.

 

[Bob]

I've got the contact details for the top two people at Imperial College if anyone wants to write to complain:

Contact Details:

Lord Kerr of Kinlochard
Chairman of Imperial College London
Imperial College London,
South Kensington Campus,
London
SW7 2AZ

Sir Keith O'Nions
Rector of Imperial College London
Imperial College London,
South Kensington Campus,
London
SW7 2AZ

 

[Doogle]

From the ME Association website:

Saturday, 06 February 2010 08:11
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

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?.

 

[Doogle]

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

From the ME Association website:

Saturday, 06 February 2010 08:11
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

He is the puppetmaster isn't he.