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WPI UK XMRV testing/study

Dolphin

Senior Member
Messages
17,567
As Dr Mikovits is presenting an abstract of the UK study on Wednesday at the workshop, would any body care to speculate on the total % of XMRV MLVs positives from the UK study?
One big factor is how many non-ME/CFS people took part. I'm afraid I don't think people who don't have ME/CFS should have taken part.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
One big factor is how many non-ME/CFS people took part. I'm afraid I don't think people who don't have ME/CFS should have taken part.

Dolphin, I expect the WPI will have asked the participants whether they are ME patients or not... So they will separate the figures between ME patients and the normal population, or family members.
 

Dolphin

Senior Member
Messages
17,567
Dolphin, I expect the WPI will have asked the participants whether they are ME patients or not... So they will separate the figures between ME patients and the normal population, or family members.
They didn't get ethical permission to ask for the full UK study (200). Not sure about the 50 - I think they were trying to gather information post hoc. It would have been better if people who didn't have ME/CFS hadn't looked for a freebie in my opinion.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
They didn't get ethical permission to ask for the full UK study (200). Not sure about the 50 - I think they were trying to gather information post hoc. It would have been better if people who didn't have ME/CFS hadn't looked for a freebie in my opinion.

Oh, I forgot about the ethical permission thing...
With hindsight, I suppose it would have been better if it was only for ME patients...
but it's done now, and I think we get the results later today anyway, don't we?
Maybe Judy will devise a way to separate ME patients from family members etc.
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
Dr. Mikovits offered to include my wife and children in the study.

Not only does she wish to prove XMRV prevalence in the UK, she also wished to prove infection rates, how many family members without ME are also XMRV+?

This would then urge the UK government to issue a health warning because just having a percentage of a nation positive for a virus is one thing, but if that percentage is infectious, well they would have to move on these findings.
 

Dolphin

Senior Member
Messages
17,567
I don't think there's any need for sarcasm.
I think you're being misleading. I'm trying to get at the truth.

Obviously I was asked whether I had immediate family members.
So you wrote to her and said, "can I take part?" and she said, "have you any family members as we are looking for family members to take part?" She didn't ask me that. I don't think that's what happened.
 

Dolphin

Senior Member
Messages
17,567
Yeah, that’s pretty much what she said.
Earlier in the thread, you wrote:
http://www.forums.aboutmecfs.org/sh...RV-testing-study&p=54436&viewfull=1#post54436
I actually mentioned in my email to Judy some specific family issues why I would like to be selected for the test. She replied by agreeing to test both myself and my wife, who doesn’t have ME as far as we know. It maybe worth saying something specific.
and
http://www.forums.aboutmecfs.org/sh...RV-testing-study&p=53867&viewfull=1#post53867
But Judy says they can test my wife!!! She doesn’t have ME as far as we know. I mentioned my children, and Judy suggested testing me and my wife so if we are both carriers, than if would be certain that our children are. Like many, I am worried for my children, but they will be too young to be tested based on research restrictions.
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK

I think you have got some very scary issues if you go digging through a person posts.

Personally speaking, why I agreed for my family to be tested is none of you business. You don't know me, and I certainly don't wish to know you. Remember envy is a sin.

Your argument is now with yourself, or please take it up with Dr. Mikovits. I would prefer to remain happy, rather than right.

Goodbye.
 

Dolphin

Senior Member
Messages
17,567
Dolphin, all of bullybeef's posts are consistent, and so what if they weren't anyway? Bullybeef obviously had a two-way conversation with Judy Mikovits, and mentions his family, and Judy offered to get them tested. Judy Mikovits is interested in testing family members because it strengthens the case for XMRV being infectioous.

If you don't like Judy M's choice to test family members then that's your opinion, and that's fine, but I believe tath there's no need to bring what I percieve to be an 'attitdue' to the forum just becamse you don't agree with something.
My "attitude" was partly because I don't think Bullybeef really expressed the full facts. If he hadn't claimed what he did, I wouldn't have challenged him.

We have had plenty of problems over the years with watered-down ME/CFS cohorts. I've listened to people moan about them for over a decade and a half. It is disappointing that it will again happen in this study which also costs money.
 
Messages
13,774
It's not like people were pretending they had CFS in order to get a free test!

Maybe the data provided from families will be useful to them too.
 
Messages
5,238
Location
Sofa, UK
I take a hint that there's some frustration lying behind this dolphin but it seems very unfair - if I'm missing something let me know. There's a wider issue emerges from this for me that we're going to have to face sooner or later. What happens to those who are XMRV- ? Just to be clear: that's the people who remain chronically ill with something they thought was ME and don't have the right retrovirus, maybe have some other cause, maybe another HGRV, maybe something else, who knows? Still Medically Unexplained - I think we all know what that entails. It's worrying if everyone who tests negative is going to acquire a new army of born-again healthy people to add to their tormentors. I would hope for a little more solidarity. I'm not saying that's what this particular argument was about, I think much more highly of Dolphin than that. But it will be an issue in general. Personally I didn't get tested because it was clearly important that the most clear-cut cases be tested, and I've never said I'm one of those. I have WTF. So I get the point, but it still seems harsh. This argument's over, so we can let it lie, but the wider issue will come up again and again. Maybe worth figuring out the ethics of this ahead of time?