WPI UK XMRV testing/study

[Knackered]

Just wondering if everyone got the email about blood draws in Middlesex??? Only it says it's near me but I'm in North Yorkshire so it certainly isn't!!!

At first I assumed they had sent it to everyone but then started wondering if they might a geography lesson lol!

Jan xx

I'm in west Yorkshire, this email's confused me, Ashford's ~250 miles away, I've no chance of being able to get there. Anyone know whether they'll be organising more locations?

 

[Cookie Monster]

Apologies Gerwyn i dont even know myself how to get there yet, ill be using public transport as i dont drive

Do keep an eye on the national rail strike situation...i believe the first strike is due to happen next week 6th April for 4 days!, and then another one is due the week after. Hoping it will get ressolved beforehand.

 

[valia]

Yep me to booked ashford on the 13th i live in essex
Neil

Hi free, I've booked the 13th too and live in Essex, but there is supposed to be a train strike on that day?

 

[ritzcarcker]

I'm in west Yorkshire, this email's confused me, Ashford's ~250 miles away, I've no chance of being able to get there. Anyone know whether they'll be organising more locations?

Knackered, there will be lots more locations announced with lots more dates. Everyone included in the study will get a chance to be tested. That is what my e-mail stated.

I got my e-mail through this morning and am being tested at Ashford hospital next wednesday 7th!

 

[JAS]

Great...good luck Ritzcarcker!!!

 

[thegodofpleasure]

I'm in west Yorkshire, this email's confused me, Ashford's ~250 miles away, I've no chance of being able to get there. Anyone know whether they'll be organising more locations?

I got the same Email and live in Derbyshire. Emailed Ed Cutler back, asking what their plans are for subsequent regional collections. I'm now waiting for his reply. I guess that being American, their perception of distance is a bit different to ours. My brother lives over there and thinks nothing of travelling 200+ miles for a fishing trip !

 

[bananaman]

It's bout a 50mile drive from where I am in Kent but I am biting the bullet and taking the pay back for travelling there.

I guess the Ed guys UK geography maybe a little out if has invited people from Yorkshire lol?!

 

[free at last]

Hi free, I've booked the 13th too and live in Essex, but there is supposed to be a train strike on that day?

Hi Vaiia
I hope this gets sorted, dont know what im going to do if it is not. just so badly want to know the truth, even though im kind of scared to be positive and scared to be negative, just for different reasons. i read somewhere there trying to avert the strike ill check more into this and post up if i find anything out concrete, Hey maybe us wessely loonies will bump into each other and not even know it, like at the dentist reading mags, Not knowing we have actually chatted

 

[ritzcarcker]

Great...good luck Ritzcarcker!!!

Thankyou Jas!

 

[valia]

Hi Vaiia
I hope this gets sorted, dont know what im going to do if it is not. just so badly want to know the truth, even though im kind of scared to be positive and scared to be negative, just for different reasons. i read somewhere there trying to avert the strike ill check more into this and post up if i find anything out concrete, Hey maybe us wessely loonies will bump into each other and not even know it, like at the dentist reading mags, Not knowing we have actually chatted

Good News! the strike is off

Hey free, that's weird, we would never know

cos I don't think it would be a good idea for me to ask strange men in a hospital "Are you free"?

(presuming you are a man)

 

[fingers2022]

Coordination & communication

Hi all,

I would like note that we are in contact with Ed Cutler at PSI, and hope to be able to post some information at xmrvweb.me.uk by early next week (sorry, Easter in the way) in order to clarify the situation regarding blood draws.

Please bear with us, and thank you for the support.

Have a restful Easter,

Steve (sorry, I started out as Satch....Joe Satriani?, then fingers....I'm just shy, and not used to forums)

 

[tricia]

I hope this gets sorted, dont know what im going to do if it is not. just so badly want to know the truth, even though im kind of scared to be positive and scared to be negative, just for different reasons. Hey maybe us wessely loonies will bump into each other and not even know it, like at the dentist reading mags, Not knowing we have actually chatted

Me too - scared but anxious to know one way or other. Had total blood transfusion 1982.
As for being at same venue and not knowing who is also testing XMRV - perhaps we should all wear the ME blue ribbon http://www.blueribboncampaignforme.org/ Cut out pic and use as badge!!
I am in N Oxfordshire so hoping for Oxford or Banbury testing. Anyone else near me?

 

[maryb]

For anyone else taking Valtrex, just heard from Dr Judy that its okay to take it whilst waiting to have blood taken for the study.

 

[VillageLife]

does anyone know if people should eat or drink before the blood test, as sometimes before a blood test your not suppose to eat ??

 

[omerbasket]

For anyone else taking Valtrex, just heard from Dr Judy that its okay to take it whilst waiting to have blood taken for the study.

If Valtrex is an antiviral drug, and not an anti-retroviral drug - Than Dr. mikovits said it would not effex XMRV. But, I know that VIPdx told people who wanted to get tested at their lab that it's recommended that they would not take antivirals (and not only anti-retrovirals) for a period of two weeks before getting tested.

I wonder if valtrex was tested in the last study, that found drugs such as raltegravir effective for inhibition of XMRV...

 

[maryb]

does anyone know if people should eat or drink before the blood test, as sometimes before a blood test your not suppose to eat ??

For this type of study eating and drinking won't have any effect on the results of the blood tests.

 

[Kati]

does anyone know if people should eat or drink before the blood test, as sometimes before a blood test your not suppose to eat ??

Drinking and eating will not affect your XMRV test. Fasting blood tests are when foods and drinks changes the value of what' s being tested: glucose, cholesterol for instance. The presence or absence of virus will not be affected by what you eat or drink, unless you have something really magic at hand.

P.S. The amount of CBT you get should not affect your XMRV test either!!! (this one is for you Wessley)

 

[ukxmrv]

Thanks Kati for reminding me of that!

It made no difference to my test. As a survivor of both CBT and GET I can confirm that having undergone these processes I still tested positive.....

 

[Dolphin]

P.S. The amount of CBT you get should not affect your XMRV test either!!! (this one is for you Wessley)

A bit more relevant to most people in the UK. Not sure if many if any UK doctors prescribe Valtrex for ME/CFS.

 

[ukxmrv]

This was posted to the WPI facebook today

PATIENT MEETUP AT ASHFORD HOSPITAL?

http://www.facebook.com/topic.php?uid=154801179671&topic=12864

The first blood draw is tomorrow (Wednesday 7th April) at Ashford Hospital. I've just checked and tomorrow is just about booked out for appointments. Still some though.

Anyone attending and fancy a patient meetup? I'm not going to be there but someone mentioned to me that patients would probably like the opportunity to chat to others before or after.

There are two cafes at Ashford. Here's a link with some photos of access and the cafes

http://www.disabledgo.com/en/access-guide/aspects-cafe/ashford-hospital

If you would like to meet up or "host a table" at one of the cafes please post here

At the hospital consider wearing a blue ribbon for identification

Good luck everyone testing tomorrow or next week!

Aspects Cafe is located on the ground floor of the Education Block.

http://www.ashfordstpeters.nhs.uk/for-visitors/maps