WPI UK XMRV testing/study

[VillageLife]

My own hopes are that we get a result, then we can have a follow up study which looks at all of the parameters

Yes but maybe you cant draw a line between bed bound and not bed bound. I havent been out of my house un assisted for 8 years, if my boyfriend or family member couldn't of helped me to Ashford I couldn't of gone alone.
Maybe I shouldn't carry on, maybe I should be in bed, all i'm trying to say is i'm very very poorly.
Life is not black and white, Just because we made it to Ashford Hospital means nothing. Everyone has a story and its not as clear cut as bed bound or not bed bound.

 

[cfsme23]

I made it to Ashford for the second blood draw date and was the last appointment, so pleased I got it done before all this volcanic ash business. I think it's fantastic for the 200/250 of us that are a part of it but now I find myself in the weird situation of praying that I have a retrovirus.

 

[joyscobby]

Yes but maybe you cant draw a line between bed bound and not bed bound. I havent been out of my house un assisted for 8 years, if my boyfriend or family member couldn't of helped me to Ashford I couldn't of gone alone.
Maybe I shouldn't carry on, maybe I should be in bed, all i'm trying to say is i'm very very poorly.
Life is not black and white, just because we made it to Ashford Hospital means nothing. Everyone has a story and its not as clear cut as bed bound or not bed bound.

I agree with the above I made it from Scotland to London in December for my blood draw (VIPdx) and was positive by culture. We can not assume because people made it to Ashford that they are not as sick and therefore more likely to be negative.

 

[fingers2022]

I agree with the above I made it from Scotland to London in December for my blood draw (VIPdx) and was positive by culture. We can not assume because people made it to Ashford that they are not as sick and therefore more likely to be negative.

Joy, great to hear from you.


I would like to summarise and reiterate what we have so far:

• WPI claim to have found a correlation between ME/CFS and XMRV
• It is not known whether this correlation is due to a causal realationship
• It is not known whether severity of symptoms correlates with XMRV infection - in fact the indication is the opposite, i.e. that someone can be XMRV positive and asymptomatic
• Travelling to Ashford does not necessarily correlate with low severity of illness
• The first 50 blood draws may not be representative, therefore no conclusion can be drawn based on these (if the incidence of XMRV in this 50 is high, then this statement may be challenged)
• The Lightning Process will sort it all out anyway, so we don't need to worry

Anyone disagree with the above?

 

[cfsme23]

Can I ask one of the more scientifically minded beings amongst us to reiterate and clarify why the first 50 bloods drawn may not be representative...thanks ever so much

 

[VillageLife]

Anyone disagree with the above?

Yes of course I still disagree

You just can't say because we got to the hospital, this might make a difference to the results. You cannot say that, it's not fair to say that at all.

every situation is different,

 

[fingers2022]

Can I ask one of the more scientifically minded beings amongst us to reiterate and clarify why the first 50 bloods drawn may not be representative...thanks ever so much

Hi scavo86

The reason is thatmost of the more severely affected may not have been able to travel to Ashford.

This discussion does not require science, it requires logic.

ATB
Steve

 

[fingers2022]

Yes of course I still disagree

You just can't say because we got to the hospital, this might make a difference to the results. You cannot say that, it's not fair to say that at all.

Every single person on this planet is different, every situation, every life is different.

Thanks VL (phew, I can'y type fast enough)

I really like that zebra.

The point about not being representative was made by bananaman. And I agree, it may not be representative, but also, it may be (re the zebra). Perhaps we meant reprezebrative?

ATB
Steve

 

[fingers2022]

Thanks VL (phew, I can'y type fast enough)

I really like that zebra.

The point about not being representative was made by bananaman. And I agree, it may not be representative, but also, it may be (re the zebra). Perhaps we meant reprezebrative?

ATB
Steve

...and I can't stand Groucho Marx

 

[VillageLife]

***HUGS*** Back Steve xxxxx

 

[Countrygirl]

[

QUOTE=fingers;71017]Hi scavo86

The reason is thatmost of the more severely affected may not have been able to travel to Ashford.

This discussion does not require science, it requires logic.

ATB
Steve

[/QUOTE]

I think the point Steve was making was that, as always, the very severely affected who are completely bed-bound have not been tested. They are invariably ignored in any research situation because they are too ill to travel at all under any circumstances. At last they have an opportunity to be included in a study after being disgracefully neglected for years.

 

[Hope123]

I wanted to comment on the numbers.

When scientists plan a study, if they are careful, they take into account factors like how many people they need to test to see a difference or a result, etc. These of course are often guesses but it helps them calculate the sample size needed. Depending on the factors and condition looked at, you can get great results with small numbers or big numbers of subjects. There is no arbitrary set number like 50, 500, 1000, etc. that is viewed as "large." For a common condition and a drug which shows dramatic effects for example, you might need say 100 subjects whereas for for a rare condition with a drug that doesn't have dramatic effects, 1000 might not be enough.

I think the WPI tried to take homebound folks into account by arranging for homedraws. If say 30% of people were homebound and 30 of 100 drawn were homebound, it would be pretty representative. If it turns out after all draws completed that only 10% were homebound, then it might not be representative.

All I'm saying is that we can't take a single number and say it's too small without taking into account multiple factors. The other point also is that the priority of initial studies is not always representativeness of the condition study; in this case, all WPI needs to do is prove XMRV positives in the UK first to encourage more studies.

 

[V99]

Looks like the volcano has picked up again. I'm just glad they got some samples out.

 

[fingers2022]

Phil at work in Iceland

http://apod.nasa.gov/apod/ap100419.html

The things he will do to stop Judy getting to that conference.

 

[jace]

Wow! What an image

Fingers' last point was

The Lightning Process will sort it all out anyway, so we don't need to worry

You are kidding me, aren't you?

 

[Adam]

Lightning Strikes

http://apod.nasa.gov/apod/ap100419.html

The things he will do to stop Judy getting to that conference.

:tear::tear::tear::tear::tear:

Nice one Fingers.

Let's the keep the faith in Judy M guys and look after each other.

 

[fred]

It seems that Dr M will be presenting by phone.

http://www.forums.aboutmecfs.org/sh...ng-in-Edinburgh-on-21-April&p=71271#post71271

 

[jace]

Originally Posted by fingers
That's a fair point banana. So you are saying first 50 may not be representative.
I take back what I said about not testing further if all 50 negative. Lets hope it's 100% or at least > 50, then we're quids in, as it were.

There is no way that the Ashford 50 will all test negative (sticks neck out, doesn't care). Was it about 50% in the December London draw? I went to Ashford. I'm not as sick as some, but it's a rare occasion that I get to the shops.

For your information folks, the gist of an email I have received is that the draw in the UK will have to wait until the airplanes get back to normal. That's understandable. That the lab will get on with the 50 samples they have in hand in the meantime, and that testees will get their individual results after the study is finished, and accepted for publication. Therefore there will be no difference if you have already tested, or if you are tested later, when the jets start flying again, as we will all get our results when the study is made public.

Sounds like there'll be a bit of the wait to be tested for the rest of the cohort. But for those still waiting, the draw is for the study, and that's what is important. And you will know your XMRV status at the same time as the Ashford 50. The WPI getting the science right is what will really help us. It's a shame about the volcano, but they are working so hard for us. Thank heavens. I think they know what they are doing.

Go WPI! :victory:Go WPI! :victory:Go WPI! :victory:Go WPI! :victory:Go WPI! :victory:Go WPI! :victory:Go WPI! :victory:Go WPI! :victory:Go WPI! :victory:Go WPI!​

 

[fred]

Ya hoo !

http://www.youtube.com/watch?v=3GwjfUFyY6M

 

[Rrrr]

I just got a call from the USA phlebotomy company WPI has hired for the USA study (I am in New England in the USA). They are starting to send the kits out this week and draw the blood samples next week! All very exciting. Can anyone tell me, for the UK portion of the study, did WPI tell you that they'd inform study participants of their XMRV status at any time???

Rrrr