WPI UK XMRV testing/study

mermaid

Senior Member
Messages
709
Likes
1,342
Location
UK
At least one third of the SW Endland population has been contacted.
Hi fingers - do you mean by this that YOU have been contacted? If you have then that's 3 of us from the South West (oops sorry I mean Endland) as Countrygirl and I have posted earlier in the thread that we heard today from the lab.
 

fingers

Senior Member
Messages
398
Likes
280
Location
SW Endland
Hi fingers - do you mean by this that YOU have been contacted? If you have then that's 3 of us from the South West (oops sorry I mean Endland) as Countrygirl and I have posted earlier in the thread that we heard today from the lab.
Hi Mer

Thanks for that. I think CG said it before, we might be the first nation where the whole population is infected. Hmmmmm......a dubious claim.

F
 
K

Knackered

Guest
now I have a theory that it reduces my inflamation and acts as a painkiller...... I do suffer the side effects the next day though. I'm talking good old English real ale here (they have some good ones up your way,
There's a middle aged woman who suffers from our condition who consumes cannabis to get rid of her pains, I tried it, unfortunately it doesn't work with me, neither does alcohol. I'm nauseated pretty much all the time so they make me feel even worse.

Hi Knack

referring to Tomk's post about the PACE stuff.

F
Which, can you link me to it please?
 

fingers

Senior Member
Messages
398
Likes
280
Location
SW Endland
There's a middle aged woman who suffers from our condition who consumes cannabis to get rid of her pains, I tried it, unfortunately it doesn't work with me, neither does alcohol. I'm nauseated pretty much all the time so they make me feel even worse.
Sorry to hear that, Knack. Yes, I guess I'm lucky that I'm not too severe - maybe I don't have XMRV.


Which, can you link me to it please?
It's the first thead currently showing at the top of the forum list, under news.

F
 
K

Knackered

Guest
Yes, I guess I'm lucky that I'm not too severe - maybe I don't have XMRV.
Hopefully we'll all see in the coming months.

Anyone got any idea as to how long it takes for results to come back after the blood's been drawn?
 

Adam

Senior Member
Messages
495
Likes
2
Location
Sheffield UK
Magnet Ale and Greasy Chip Butty

I'm glad you mentioned the alcohol. This is my favourite med too, and I also restrict it to evening, otherwise I'm all over the place. A lot of people say they can't tolerate it. In the first year or so, I couln't even face it, but got to tolerate it gradually, and now I have a theory that it reduces my inflamation and acts as a painkiller...... I do suffer the side effects the next day though. I'm talking good old English real ale here (they have some good ones up your way, Ad)
Good man. Alcohol (in the right quantities and taken over the right period of time) can be taken like medicine I guess?

It is also a muscle relaxant (I walk better after a couple or three) as well pain supressor and probably does some other sciency stuff no doubt, and certainly aids my mental wellbeing.

Ahhhh the BEER.

Don't get to pubs these days sadly.

Stones is a good Sheffield beer - a bit light for me.

Tetley's - dark and strong flavoured - top brew - irritatingly made in Leeds.

Wards - Sheffield beer. Fine if you like yeasty taste. I do not. Makes you fart summet chronic.

Last, but certainly not least of the major northern bitters - John Smiths. The ordinary everyday pint is OK. But does not travel well.

The prince of all beers John Smiths Magnet.

Much beloved ale. Revered so much so it makes into the Sheffield United FC club anthem known as the Greasy Chip Butty Song.

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

http://www.independent.co.uk/sport/...e-hymn-sheets-fill-up-the-senses-1291807.html

The song is to the tune of Annie's Song by John Denver.

You fill up my senses
Like a gallon of Magnet
Like a packet of Woodbines
Like a good pinch of snuff
Like a night out in Sheffield
Like a greasy chip butty
Like Sheffield United
Come fill me again....
Na Na Na Naa Naa Naaaaa, ooo!


Meaning

To a native of Sheffield the words are probably self explanatory; the words celebrate the many pleasures that can be had in Sheffield, culminating in the target of the fan's adoration, Sheffield United.

Magnet refers to John Smith's Magnet, a beer once widely available in Sheffield. Some people claim that the second line is really Like a gallon of maggots. Maggots are obtained from fishing tackle outlets in denominations of imperial pints and hence this version would not be unreasonable, as fishing is popular in the region and hence a gallon of maggots would mean a good day out fishing.

Woodbines refers nostalgically to a once popular brand of strong cigarette.
Snuff is ground tobacco for sniffing up the nose.

A Greasy chip butty can be purchased in any of the many local fish and chip shops. Butty is a slang word for a sandwich, and a chip butty is simply a sandwich where the filling is chips, ideally greasy and sometimes sprinkled with salt and vinegar. Generally, a white sandwich bap will be used for the bread. In Sheffield, these are simply known as Breadcakes.

Original incidence.

The song itself is a plaintive rally-cry by the fans of Sheffield United. It is usually heard on commencement of the home games played at 'Beautiful Downtown Bramall Lane' (as it is often called by the announcer on match days), the home of the club, and sporadically throughout away matches.


Of course there are dozens of videos of the song on Youtube. And mugs sold in the Bramall Lane shop.

Apparently, amongst many others, Toronto FC have a version of this song - any Toronto FC fans on forum?

Their song goes:

You fill up my senses,
Like a gallon of Fifty,
Like a Tim's double-double,
And a big WALNUT CRUNCH!
Like a night out at Beeee-MO,
Like a greasy chip butty...
Like Tor-on-to F-C,
Come fill me again!
Na na na na naa Ooo!

Not quite as catchy as The Blades original and no John Smiths of course (wonder what Fifty is like) but not bad.

Orate den me old, wots tha' sup int tha neck o' woods?
 

valia

Senior Member
Messages
207
Likes
1
Location
UK
I'm in Sheffield. Thanks all those who have posted.

I feel a bit sick not knowing if I am in, not knowing if I will be positive by PCR, by serlogy, if I want to be positive, how I feel if I am if am not...all been said a thousand times before I know. But it's all so damn strange - 14 years on from all those damn blood tests, MRI's, two lumbar punctures, nerve condutivity tests, ECG's this scan that scan - promised steroids - never happened -promised muscle biopsy - never happenned - and now XMRV. A virus. Could have told them it was a virus 14 years ago. Geez it pisses you off when you think about it - which is why I don't. Or haven't until now.

Oh hell.

Let us know about Neuro visit if you are up to it SuperSprog.

Head spinning. In need of caffeine/nicotine - alcohol (my fav med will just have to wait till nearer bed time) going quietly nuts - must check in on chat and talk nonsense there instead of here -wish I was a mediterranean island drinking wine and reading a book, wishing I could do a Sam Tyler and go back to 1995 and figure it all out and not be where I was wherever that was when I got this damn thing and be somewhere else know instead - except for all the kind folks on here I have met and who are so kind - and are the only friends I got.

Adam in Sheffield in bits. Had a rant - feeling 5% better than before the rant

OH ADAM! Please don't let it drive you nuts, I can't see any harm in you emailing Ed Cutler from the Phlebotomy Services and asking if he has you on the list, don't know if I can post his email address here, but will pm you if you need it.


I'm with you on the alcohol, I couldn't tolerate it at all in the beginning but I have persisted with it, I don't care how bad I feel the following day, I feel bad every day anyway. :D



Sorry forgot to say I'm in Essex
 

fingers

Senior Member
Messages
398
Likes
280
Location
SW Endland
Orate den me old, wots tha' sup int tha neck o' woods?
PMS (pissed myself?) people say it all the time, but that's the first time I've actually LOL on this forum.

THANK YOU ADAM :hug: (I've siad it before, not gay, just affectionate).

I didn't need most of the explanation, as I'm from St.Helens, where the language (& mentality) is similar. I even had a night out in Sheffield in my younger days.

Anyway, I digress, I'm sure that those of us who pissed off in a boat from SW Endland a few centuries ago will appreciate the explanations (OR NOT!!).

(CG, Help, I'm in trouble)

I can't possibly list all the ales I like. The best Devon one is possibly Otter. My Cornwall favourite is Skinners (and they do). The locals here are great (if you're local).

Stop digging fingers.

Bye folks, probably my last post:tear:

F
 

pollycbr125

Senior Member
Messages
353
Likes
186
Location
yorkshire
hi all this is my first post could have sworn id joined before but if i did i couldnt remember my username or password lmao dont you just love having a useless brain so ive joined again . anyway im mainly on facebook i post a lot on wpi page . just to let you know im in the study and was one of the first to be accepted as i just happened to be on the comp at the time . i recieved an email like some others today from the phlebotomy company . im in a village in west yorkshire by the way . so it may well be that they are contacting certain areas first.
i do read this forum quite a bit but i find it difficult to follow too many pages /forums at the mo so ill probably just post on here occasionally .i have a facebook account just fro me/cfs friends now as i have so many . i do post a lot of links etc so if anyone wants to pm me if they are on facebook feel free. i do know one or two of you already . anymore yorkshire tykes especially welcome lol as i dont know anyone personally with this bloody illness .and being in a village is lovely for the peace and quiet but a bit of a pain when you cant get out and about too much .
think ive waffled enough and prob not made much sense apologies for any spelling mistake s i seem to get intermittent dyslexia now when typing . ;-)
 

mermaid

Senior Member
Messages
709
Likes
1,342
Location
UK
"I think CG said it before, we might be the first nation where the whole population is infected. Hmmmmm......a dubious claim."
Funny you should say that Fingers as I have had several people indicating that there is a kind of cluster at this end of Cornwall - not very scientific though - I think it's either to do with having Prof P here diagnosing efficiently, or that people who are feeling exhausted by the 24/7 culture in the cities running as far west as possible in hope of sanctuary ......

Now what's that about medicinal use of alcohol? Give me good quality chocolate every time!
 

coxy

Senior Member
Messages
174
Likes
2
Where is the XMRV poll that was set up on this forum gone, the one the XMRV positives could fill in all their symptoms etc after getting a diagnosis of XMRV, I'm probably being really thick as usual these days, but i would like to read through the symptoms that are common amongst the XMRV positives on the forum.
 
Messages
27
Likes
3
Location
UK
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.
 

fingers

Senior Member
Messages
398
Likes
280
Location
SW Endland
Where is the XMRV poll that was set up on this forum gone, the one the XMRV positives could fill in all their symptoms etc after getting a diagnosis of XMRV, I'm probably being really thick as usual these days, but i would like to read through the symptoms that are common amongst the XMRV positives on the forum.
(just a quick post before the ban reaches me)
If I remeber, Coxy, it is quite superficial, i.e. only asks for severity of symptoms, not the actual symptoms. Did you mean this one (and other similar ones for different lab/tests)?

http://www.forums.aboutmecfs.org/poll.php?do=showresults&pollid=15


I have in mind to do something a bit more sophisticated. Hope to post soon about this.
F
 

Adam

Senior Member
Messages
495
Likes
2
Location
Sheffield UK
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.