WPI UK XMRV testing/study

[Knackered]

The licence plate gaff by Wesselly will come back to haunt him. If we could only mobilise folks to Kings College one day...wearing licence plates round their necks with the legend XMRV POSITIVE.

What do you mean? Licence plate gaff?

 

[Adam]

Knackered. Wesselly said in BMJ podcast and I am paraphrasing here:

If someone gets knocked down by a car, we don't need to know the licence plate number to help rehabilitate him.

And then went on to say we won't be testing people to find out what virus they had way back when - because it doesn't matter. Or he said it before the licence plate nonsense.

The point being, he is intentionally ignoring the fact that the virus in question is a retrovirus, which does not hit and run, but as a retrovirolgist said, hits and hides.

The guy is priceless. I mean, the average GP wouldn't have a clue. To them a virus is a virus. With slightly different names. Effecting different bodily systems. With varying levels of success. The only retrovirus they know of is HIV. But doubtless they wouldn't actually know it is a retrovirus.

 

[darkrobot]

No problem Adam, fingers crossed you will make it into this round of testing and can get it done sooner rather than later. The Wessley stuff both depresses and enrages me no end.

I'm also in Sheffield, small world huh?

 

[fingers2022]

What do you mean? Licence plate gaff?

What Adam was referring to was the BMJ / Wessley podcast, when wanker Wes invited all ME sufferers to grab a car registration plate and wrap it around his neck.

(sorry folks, hit the buttons again).

Actually, Knack, his quote was something like "if ypu're run over by a car, we don't need to know the car reg. no. in order to treat your injuries" implying an analogy with ME and whatever infectious agent may have caused it.

Of course, this is why nobody ever bothered to investigate AIDS, and just whacked a load of antivirals at it to see what happened.

 

[fingers2022]

No problem Adam, fingers crossed

How did you know?

 

[bullybeef]

If someone gets knocked down by a car, we don't need to know the licence plate number to help rehabilitate him.QUOTE]

"Rehabilitate"??!!!! I a frickin' patient, not a prisoner!!

 

[darkrobot]

How did you know?

Know what?

By "fingers crossed you will make it", I meant "I hope you will make it", if that's what you're referring to...

Damn this fogbrain.

 

[fingers2022]

If someone gets knocked down by a car, we don't need to know the licence plate number to help rehabilitate him.QUOTE]

"Rehabilitate"??!!!! I a frickin' patient, not a prisoner!!

Wes wanted me to go to Rehab, I said No, No , No

....sorry, waiting for that test result is getting to me. Is it time for a pint yet, Adam?

 

[coxy]

no not that one. i thought a huge survey type poll was being set up for all XMRV positives? A few weeks ago there were threads running with ideas to add to the survey inc all types of symptoms etc, am i dreaming???????????

 

[oerganix]

Hi Darkrobot

I still don't know if I made it in, but thanks for this post. Knowing that a test could be available soon is a great comfort. Going down to London to redlabs is really not an option for me. If you could have blood drawn locally it would be on for me and I wouldn't mind paying so long as it wasn't in the big hundreds (don't have that sort of money spare).

This is really good news on a personal level, but perhaps more so in terms of smashing the Psyche lobbies stranglehold on our disease.

The licence plate gaff by Wesselly will come back to haunt him. If we could only mobilise folks to Kings College one day...wearing licence plates round their necks with the legend XMRV POSITIVE.

Now that would be a great photo-op, great publicity, wouldn't it? I'm wondering if it could be done on youtube, somehow, with various patients added in to make a great montage of folks with a license plate around the neck, saying XMRV POSITIVE. (Maybe "in UK" in small print beneath?)

I agree about the alcohol. I'm a cheap drunk now, as it takes about half as much to get my "attitude adjustment" going. We have a wonderful rum here called Flor de Cana (Flower of Cane, as in, sugar cane) and a couple of decent beers: Victoria and Tonya.

I'll pass, on the Greasy Chip Butty ....sounds horrid.

Hugs for Adam.

 

[fingers2022]

no not that one. i thought a huge survey type poll was being set up for all XMRV positives? A few weeks ago there were threads running with ideas to add to the survey inc all types of symptoms etc, am i dreaming???????????

Anyone point us to this poll or where this was discussed, please?

Thanks
F

 

[Advocate]

i thought a huge survey type poll was being set up for all XMRV positives? A few weeks ago there were threads running with ideas to add to the survey inc all types of symptoms etc, am i dreaming???????????

Hi coxy,

A committee of four are still working on it, and have it almost ready to go, with its own website and terrific new survey software. The survey is long and difficult to take, however, so we are still working on simplifying it.

Also, I am still trying to find a parent of an autistic child who is XMRV+, who will take a look at the survey and see if anything should be added. I have had one lead, but have not yet had a response. Do you know anyone--a parent of an autistic child who is XMRV positive?

Advocate

 

[Adam]

Great posts guys. Song lyrics can be realy on the money as they say.

This is by Joan Osborne (my favourite female solo artist of all time). The final verse goes:

If I die before you do
Believe me I'll be haunting you
I'll come across you while sleep
To drown you in a kiss so deep

From her second album Righteous Love - the track is called Poison Apples (Hallelujah). Not sure exactly what it's about, but could be about AIDS.

 

[Adam]

Now that would be a great photo-op, great publicity, wouldn't it? I'm wondering if it could be done on youtube, somehow, with various patients added in to make a great montage of folks with a license plate around the neck, saying XMRV POSITIVE. (Maybe "in UK" in small print beneath?)

I agree about the alcohol. I'm a cheap drunk now, as it takes about half as much to get my "attitude adjustment" going. We have a wonderful rum here called Flor de Cana (Flower of Cane, as in, sugar cane) and a couple of decent beers: Victoria and Tonya.

I'll pass, on the Greasy Chip Butty ....sounds horrid.

Hugs for Adam.

Adam

 

[Dolphin]

Which, can you link me to it please?

http://www.forums.aboutmecfs.org/sh...K)-Medical-Research-Council-to-the-PACE-Trial

 

[Greggory Blundell]

We here in the US are routing for you! We are all in this together.

To all those who didn't make it into this study (I was too late), I received this email from Dr Mikovits:



Dear (name)
We may very soon have a very high throughput sensitive test for XMRV where we could easily do 200 in a week! Thank you for your patience and kind regards
Judy


200 in a week! It doesn't sound like there will be long to wait.

Everything that happens in your country impacts those of us ill in the US and throughout North America. We share your excitement - and your trepidations. You are our brothers and sisters. Good luck with the testing!

 

[Greggory Blundell]

Of the top ten benefits of ME/CFS, cheap drunk ranks number four. I'd share the other nine, in sequence, but I cannot recall. But number four is dearest to my heart. Curiously, of the top ten drawbacks, cheap drunk stumbles in at number four.

 

[fds66]

OK still no email here despite Dr Mikovits telling me I was in the study. Is anyone else waiting or should I be worried now?

 

[Knackered]

OK still no email here despite Dr Mikovits telling me I was in the study. Is anyone else waiting or should I be worried now?

I think a few more people are waiting too, I wouldn't be worried.

 

[willow]

Yip, I'm waiting.