Coming to America for XMRV

[Katie]

I'm just putting some feelers out but my husband and I have been discussing the possibility of flying to America to take the XMRV done my VIPdx. They are the only ones licencing the test from the WPI so they are the only people I trust right now to give us the most accurate result currently possible.


We would need a doctor in the US willing to see us as British citizens, does anyone know if this is possible? Or even have a recommendation of someone to contact? We have the money to pay privately, who needs a house deposit anyway?


This is the only question for now. It'll have to be in the spring next year as both of our health levels dip during the winter and I'm currently in a relapse and not doing too well with big activities. Also by next spring we'll know more about whether this XMRV theory really is a goer or not.

 

[MEKoan]

I would suggest you ask WPI directly for the name of a doctor. If you would be coming stateside anyway, they may be interested in a couple with ME or need more UK blood, or just be the helpful people they are.

Since you have lots of lead time, why not email them and see what they suggest? If it turns out not to be a goer, you can cancel.

Best of luck to you.

 

[Katie]

Good idea. Is it weird that I feel nervous about emailing them, it's like writing a letter to the Queen when you're in primary school, they seem so important and special.

I'll wake up a bit more and draft an email. It may be almost 3pm here but I've not been up long. Oh the life of an ME'er Thanks for the advice Koan, been a fan of your post around here.

 

[MEKoan]

Katie,

Are you on Facebook? If you are, you must join the WPI group. Their posts and updates are very human. It will help you feel comfortable emailing them.

They are important and special but they do what they do because they think you are important and special, too. 'bout time, huh?!



Peace to you!

 

[Andrew]

I hope that by spring WPI will have a licensed test for the UK.

 

[Alice Band]

Have a think about seeing Dr Enlander. He is in New York but also visits London and Ireland (I think Dublin).

Dr Enlander may be in London in early December 2009. I have been trying to get an appointment to see him for months and emailed his office.

I think that Dr Enlander is involved with the XMRV research with Dr Kerr (UK) and certainly someone to ask about XMRV testing.


http://www.enlander.com/


Good luck

 

[Alice Band]

Just as an extra note, I have phoned and emailed the WPI to ask them to make a statment about XMRV testing for Europe.

There are lots of rumours and behind the scenes negotiations and it would be nice to have it publically stated what they are planning (if anything).

I've personally spoken to labs in Europe and there are things going on but the delay is being caused by licensing.

We need to know.

 

[srmny]

Annettee Whittemore

Hi Katie,

I got to meet Annette Whittemore at the CFSAC meeting in DC. She is very approachable. When she looks at you she "looks" at you - we exchanged an unspoken connection before we even spoke. It was so clear to me that she is one of us. The only thing that comforts me in having this illness is that I am the one who is stricken and my son has been spared. The depth of both her despair and her hope is right there for the world to see. Before we even spoke her eyes reflected my pain, her daughter's pain, a mother's pain and that of all of us who suffer. I am years older than she and I could feel her "mothering" me.

And you are right, she is right up there with the Queen!

srmny

 

[Katie]

Just as an extra note, I have phoned and emailed the WPI to ask them to make a statment about XMRV testing for Europe.

There are lots of rumours and behind the scenes negotiations and it would be nice to have it publically stated what they are planning (if anything).

I've personally spoken to labs in Europe and there are things going on but the delay is being caused by licensing.

We need to know.

Thanks Alice, that's a very sensible thing to do. I'll hold off sending any emails to see if something comes of your efforts. My brain is struggling today anyway. Weirdly, getting a diagnosis has always been more important to me than treatment or a cure, probably because that always seemed like a more realistic achievement.

 

[condra]

I emailed Dr Enlander, asking about the possibility of XMRV testing in UK/Ireland. If I get a response, I'll be sure to post it here.

Alternatively, I would also be interested in traveling to USA for testing, so I'll keep an eye on this thread.

 

[Recovery Soon]

Dr. Enlander is doing a 500 patient study with Dr. Kerr from the UK, so you don't need to come to the US- Just contact Kerr's office- you can probably participate there.

I participated at Dr. Enlander's office a couple days ago in NY.

Still plenty of room.

Also- Enlander himself told me not to take the $650 test that is available- there's no therapies yet- and within 6 months better tests will be more available, reliable and cost efficient.

 

[joyscobby]

I have also thought about coming State side from the UK and would be interested in knowing what it would intail. For example do you need a doctor to sign off on it if so could a UK Doc do it before you leave or does it have to be a US one or non at all.
If no doctor needed then where would you get a blood draw.

Also an issue is where do you get the test kit sent to if WPI not willing to mail it to the UK.

Also if WPI want more UK samples if so they can have mine.

Lots of question and issuers to consider? I am holding back at the moment and reassing in the New Year in the hope that something happens in Europe.

But would be interested in hearing if anyone finds out about theese issues and all it entails.

 

[Katie]

Thanks all for your replies.

Condra, I hope you here back soon, me and my good man can get to any part of the country if needs be, it's worth the payback. Maybe we can book up a aeroplane and fly a whole bunch of us out!


Hello Recovery Soon, from what I've read on this board although Dr Kerr is doing XMRV testing he will not be releasing his results. Whilst I'd be happy to participate, I'd also like to find out for myself. I also understand calls to wait, but there are more reasons to take the test than for treatment, especially in the UK.


Joyscobby, I'm hoping that if we get a doctor in the US that a test could be sent to his office. If not I have a friend who I'm sure would be willing to be an address to send it to. Heck, I'm sure us Brits and other Europeans could find a US buddy on here to be our delivery address if needs be, but I would expect a doctors surgery would accept it. Hopefully Alice Band's efforts will come through and we'll at least know where we stand. I really should bite the bullet and go see my GP and give him the XMRV info and see what he makes of it.


Susan, to have sought all of this money and research for us, she is like all of our mothers. Words cannot express how grateful both me and my husband are. She's welcome to come be our Queen any day, though I am pro abolishing the monarchy

 

[Alice Band]

I have emailed Kerr and there has been no reply. In his previous research he used patients from one of my doctors (and others). I participated in an earlier study of his.

If he does do a study it is unlikely that we will know the results. Another of Dr Enlanders patients (in the study) was told that?

Dr Kerr did not release the results of his earlier gene work to individual patients (I asked).

People in the USA and Canada at least have a choice right now. It is the decision of the WPI and VIP to restrict testing.

I would like to hear some facts from the WPI and VIP and I have asked them to make a statement. They are incredible and I am very grateful so please don't hear the wrong thing in this email.

If the situation was reversed (i.e. testing restricted to the UK only) then I am sure people in the USA would have something to say.

 

[Katie]

Things happen as they happen, the WPI have done more in the last two years than anything government funded over here. If it's US only then that's fine because a lab is only so big and it's not obligated to test the world. I'll make the situation work and get myself and my husband over there if we feel that is the right thing to do and they are happy to test a non-citizen. Considering Canadians can have the test that shouldn't be a problem.

Hopefully we'll have a test in Europe not before long, but the NHS doesn't exactly have its fingers on the pulse and I'm just not willing to wait years not knowing when I could do something. I also trust the VIPdx lab more than anywhere else.

It's ironic really, I was due to spend five months in America next year studying, unfortunately ME had the final say but it's strange that I might find myself there for a completely different reason than I could have imagined.

 

[Aftermath]

Wait Six Months

Dr. Enlander is doing a 500 patient study with Dr. Kerr from the UK, so you don't need to come to the US- Just contact Kerr's office- you can probably participate there.

I participated at Dr. Enlander's office a couple days ago in NY.

Still plenty of room.

Also- Enlander himself told me not to take the $650 test that is available- there's no therapies yet- and within 6 months better tests will be more available, reliable and cost efficient.

Recovery Soon's post is a winner and includes the answer you are looking for.

If you want to participate in the Enlander/Kerr study, that would be great for the cause. Still, keep in mind that they will never tell you your results.

It is absolutely crazy to waste money on an XRMV test right now when a positive result is evidence of absolutely nothing.

I just don't see the motivations here...

Are you looking for evidence that you are really sick and it's all not just "in your head?" You know this to be true already--without any test.

Are you looking for treatment? That's not going to come within six months (with the possible exception of clinical trials for those who live near WPI).

I know that it's difficult after having been sick so long. I've been sick for 15 years and thrown good money after bad on every treatment under the sun. I've undergone a hell of a lot of testing, including two spinal taps.

But as close as were are right now, we need to wait another six months so that the research can be replicated and more reliable tests can be developed.

This also goes for attacking Wessley and White. People need to hold off and save up what energy they have as we don't have the proof yet. We need to wait for the study to be replicated, then stomp these people out of existence!

 

[Katie]

Any decision to go to America for testing will not be made for six months anyway, for now I'm just seeing what exactly I would have to do to make it happen. I think I mentioned in my first post that we would not go until the Spring. I wouldn't do it now as I am waiting for some follow up studies, hopefully confirmation by the CDC if we're on a lucky streak and I can better see exactly how Britain will handle this.


I'm just putting some feelers out there, I'm not saying I am going to do this, but I feel better for feeling like I'm doing something to react to this news. I've done crazier and stupider things in my life, we'll see in six-seven months where the land lies.

 

[Alice Band]

Aftermath,

I've got a strategy that I would like to use in the UK which is based around testing. It is simply impossible to describe what it is like here in the UK. Some people are insulated by money / family etc but others are in a very bad way.

My test result may help me in a matter and it's one that I don't feel comfortable to discuss as yet. You'll just have to understand that we are all in different circumstances and will make different decisions.

Appreciate all your comments and input though - please don't get me wrong

 

[Katie]

I just reread my post back and I was worried it came off as a bit defensive which I didn't intend.

Like Alice, I don't feel comfortable explaining why this is so important, especially on a board I'm new to. I hope you understand, or if not understand, can empathise with the need for assurance, explanation, validation and knowledge about something which has effected us all so greatly.

Getting a test would make a positive impact on my life, that's the best way I can put it.

 

[Hysterical Woman]

Katie,

Please don't worry, you are among friends. Please keep us updated as to what your plans are.

Take care,

Maxine