WPI UK XMRV testing/study

[willow]

Hi ukxmrv,

Thank You!

 

[Gerwyn]

Hi all. Greetings from another Endlander - well right at the end of Endland as far west as possible. Thank you for the greetings in the thread from Countrygirl, and pm from fingers. I wrote this note last night and then went to send it and it was black hole time for a while as the forum was sorted out.

Anyway I dithered about the testing and assumed I was far too late - have numerous problems in getting tested as so far away from anyone, no car, no money, not well to travel, but what the heck, I emailed in the end last night and got accepted along with the rest. Will see what develops in the next few weeks .....

i thought exactly the same thing but I have been accepted as well

 

[sproggle]

Mermaid and Gerwyn that's great to hear you've both been accepted! :victory:

I'm also in the study &awaiting instructions, it's good to know we can all support each other here

I did email Judy the other day asking if I could have blood drawn at home after hearing others had been told they could &also asked if we would get a questionnaire to complete to specify the cohort. I know she's snowed under, if I get a reply I will post here immediately for all to see.

She's defintiely working extremely hard on our behalf!

Go Judy!

Jan xx

 

[JAS]

I agree with UKXMRV, please can we just hold fire sending any emails to Dr Mikovits for now, I do believe we will get to know any necessary details as they become available. Meanwhile, I think we should just give Dr Mikovits the time and the space to put this study together. Thank you x

 

[flybro]

Right, its official I'm sulking, I hav'nt heard .

Good job I'm having a pretty good run at the moment, otherwise I would be mega sulking.

Fingers crossed for everyone, and I hope this will finally put XMRV squarely in the UK population of ME/CFS, and make it impossable for the UK to ignore.

I'm so excited about this study.

 

[Esther12]

Right, its official I'm sulking, I hav'nt heard .

Good job I'm having a pretty good run at the moment, otherwise I would be mega sulking.

Fingers crossed for everyone, and I hope this will finally put XMRV squarely in the UK population of ME/CFS, and make it impossable for the UK to ignore.

I'm so excited about this study.

I've not heard back either. I only sent one e-mail though. I'm not desperate to be part of a study, unless it would be helpful. Knowing whether I have XMRV doesn't seem important at the moment, but I'm certainly interested in the study.

I hope they do it blinded and get results out soon. It shouldn't matter if patient selection was a bit odd so long as there's significantly more positives coming from the group of self-reported CFSers. I really want some more peer reviewed results from the WPI - they seem so confident in their data, and it would be good to know if that's really justified.

 

[ukxmrv]

Lots of people on different ME and CFS say that they have not heard. The message from Dr Mikovits was that it is going to take time for her to work through the list and reply.

She has replied to someone I know to ask for no more questions or repeat email messages as it just gets worse. She said that she is trying to accomodate everyone but it will take time to work out the dates, times and places.

Very sorry for everyone waiting to hear. The waiting was the worst part of the testing for me.

 

[flybro]

Lots of people on different ME and CFS say that they have not heard. The message from Dr Mikovits was that it is going to take time for her to work through the list and reply.

She has replied to someone I know to ask for no more questions or repeat email messages as it just gets worse. She said that she is trying to accomodate everyone but it will take time to work out the dates, times and places.

Very sorry for everyone waiting to hear. The waiting was the worst part of the testing for me.

It's OK ukxmrv I'm not going to e-mail again, I feel quite bad that I sent three emails already. It was like trying to construct a CV for CFS/ME in half a page.

Thanks for being here.

 

[MEKoan]

Oh Flybro, I was so hoping this would say something else. Ah well, let's pretend you don't actually want to get tested anyway.

Testing is for sissies!

 

[bullybeef]

It has been noted on Facebook that the WPI have now received enough names for the UK research study. However, there are many people she hasn't yet replied to, so you may still received a response in the next few days.

Good luck all.

 

[bullybeef]

Email advice from Dr. M

Hi guys,

I recieved the following email from Dr. M and I was given permission to repost:

Regarding the ramifications of being XMRV negative. First of all the current diagnostic testing will define with essentially 100% accuracy XMRV infected patients. The negatives are more difficult as there are additional tests that can only be done in the research lab at this time and not in a clinical setting such as VIPDx. The most important test is to check your blood for an antibody to the virus. If you are positive in the serology test and have an antibody to the virus, you have evidence of infection but at the time your blood was drawn the amount of virus in your blood was below the limit that could be detected by the most sensitive test currently available clinically, which is the the one done at VIPDx. that means while you tested XMRV negative..it could be a false negative.

We are testing the hypothesis that XMRV is to CFS as HIV is to AIDS. There are many people with HIV who don't have AIDS (because they are getting treatment). But by definition if you have ME you must have XMRV.
I make that analogy in presentations because CFS is such a waste basket diagnosis and testing the hypothesis that XMRV is a major player in ME/CFS like HIV in AIDS, will get treatment and research money into biomedical research for XMRV and end the psychiatric bias that has been the history of the disease. Do I think there is only one XMRV?? Absolutely NOT..there is an HTLV2 and an HIV2 both of which have much milder symptoms associated than the variants HIV-1 and HTLV1? What if the first XMRV to be associated with ME/CFS is not the most pathogenic variant. What if there is a much more pathogenic XMRV-2 out there?? In the UK in China??

Maybe the reason others don't find it is because they will not do the BIOLOGICAL VIROLOGY and ISOLATE THE VIRUS like the WPI and VIPDx have done. NO ONE else has even ATTEMPTED the experiments in the Science paper. Electron micrographs don't lie..and a budding virus or immune response cannot be a contaminant..

We do stand behind our hypothesis that somehow XMRV is hurting your immune system so that it cannot fight ordinary pathogens and after a long time of chronic expression of XMRV (or a short time if you have other genetic immune deficiencies) your immune system simply cannot function normally and you become permanently disabled...

Please feel free to discuss my response with your group..We will test everyone that tested negative to see if we can find antibodies in your blood and look for that variant that we describe..that is evidence of XMRV infection. There is so much that we don't know about the virus. Recall that the first isolation of HIV was from a single AIDS patient published in late 1982 and it was not until 2 years later that it was associated with AIDS with the kind of evidence that we put into that first paper. Only a few short years later there were effective therapies. We learned a lot then and we are using every bit of that knowledge from 30 years ago (we were there and have worked on nothing else for 30 years) to understand this human retrovirus. Please don't hesitate to email me directly if you or anyone in the group has questions/concerns. To be clear..I do think even if you tested negative now that you are likely still infected with XMRV or its closest cousin..

Kind regards,

Judy

The good news is if anyone has a questions or worries, she did say she would be happy to answer them.

 

[Lesley]

Bullybeef, I posted a reply that has disappeared. The most important thing was that I think this should be posted as a separate thread. A lot of people who aren't following the UK testing would be interested.

 

[bullybeef]

Good idea Lesley. I sort one out now.

 

[Advocate]

... I have been accepted as well

Gerwyn, with all of your hard work here on this forum, you so deserve this test.

 

[Knackered]

Just to let everyone know I'll be sharing my results on this forum along with details of my condition's history and symptoms when I get the results.

I only wish we knew more about when the testing would begin.

 

[SunnyGal]

I fit the Canadian criteria, but I can't pinpoint the start of my illness to a single viral event.

I have no idea where XMRV fits into my picture.

I also fit the Canadian criteria but can't pinpoint the start of my illness to a single viral event. I actually rarely got colds my entire life and only had a flu once when I was about 22 (it was very bad for 4-5 days and took me about a month to feel fully recovered, but no increase in CFS symptoms after that), and then once again last year after starting on treatment. I've had mild CFS symptoms off and on since I was 9 or 10, and then at 34 with my first pregnancy I developed definite symptoms that never left.

Sunny

 

[sproggle]

Email from Phlebotomy Services International INC. regarding study participation!!!!!

Dear Janet,
We are contacting you because you have requested to be included in a study for XMRV. Phlebotomy Services International is organizing the required specimen collections for WPI and other research organizations. We are in the process of organizing collection locations near you. We will send you a schedule of event locations and times available. You will have the opportunity to choose the location that best suites you and sign up on an interactive on-line schedule. Each of the collection events will be limited to a maximum of 20 participants, so there will be multiple days to choose from. If you are immobile or homebound and need a phlebotomist to come to you please contact me via e-mail at your convenience and we will make the appropriate arrangements.
Sincerely,
Ed Cutler
President
Phlebotomy Services International INC.

Off to bed nowit's 1am here &at hospital tomorrow....

Jan xx

 

[Kati]

Yay Jan!!! Thank you so much for sharing! The study is under way!!!

 

[Knackered]

Dear Janet,
We are contacting you because you have requested to be included in a study for XMRV. Phlebotomy Services International is organizing the required specimen collections for WPI and other research organizations. We are in the process of organizing collection locations near you. We will send you a schedule of event locations and times available. You will have the opportunity to choose the location that best suites you and sign up on an interactive on-line schedule. Each of the collection events will be limited to a maximum of 20 participants, so there will be multiple days to choose from. If you are immobile or homebound and need a phlebotomist to come to you please contact me via e-mail at your convenience and we will make the appropriate arrangements.
Sincerely,
Ed Cutler
President
Phlebotomy Services International INC.

Off to bed nowit's 1am here &at hospital tomorrow....

Jan xx

I received the exact same email, great isn't it!

 

[sproggle]

Phlebotomy Services International INC.​

55 South 5th Street Central Point, OR 97502​

00 + 1 + 541-664-4382 EXT 100

​

http://phlebotomyservices.com



Wonder where my nearset Patient Services Centre will be? Doubt will be close enough to travel to, but you never know.

Off to hosp......

Jan xx

@Knackered Yes it's pretty exciting stuff!!
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