FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

[Cort]

I don't want to suddenly prompt a flurry of e-mails, but has anyone contacted the lead researcher (guy with his own wikipedia page)?

Even if he couldn't confirm anything, or provide more details, having him directly avoid rubbishing the report would be good. I'm still kind of worried this is all compeletly wrong, and we're just getting carried away in it.

Did Cort contact him for the article? Or are all the quotes from him just from that initial press release?

Alter hasn't said anything but an NIH official did confirm that the slide was valid - so we must assume that the information on the slide is valid.

 

[Cort]

I don't think they can be blamed for not knowing the cause, but I think they can be blamed for:

- Not researching the cause
- Not believing patients who keep telling them that they are sick
- For denying benefits to patients, thus forcing them to work until they get even sicker.

Personally, I would like to see some lawsuits. I would like to see those who have been reduced to poverty by this disease compensated for the lack of care they have been given over the years and those who have suffered emotionally from the stigma of being told (and having their families and friends believe) that it is all in their minds at least be able to afford some things that make their lives more pleasant. And I would like every single one of us to have a T-shirt that reads:

I TOLD YOU IT WAS REAL

That is a great idea for a T-shirt

 

[jeffrez]

I don't think they can be blamed for not knowing the cause, but I think they can be blamed for:

- Not researching the cause
- Not believing patients who keep telling them that they are sick
- For denying benefits to patients, thus forcing them to work until they get even sicker.

Personally, I would like to see some lawsuits. I would like to see those who have been reduced to poverty by this disease compensated for the lack of care they have been given over the years and those who have suffered emotionally from the stigma of being told (and having their families and friends believe) that it is all in their minds at least be able to afford some things that make their lives more pleasant. And I would like every single one of us to have a T-shirt that reads:

I TOLD YOU IT WAS REAL

Haha - that would be a great thing to wear to doctor appointments.

 

[judderwocky]

lol, i think i pissed off erv... my comments are getting blocked. and so what if i can't spell. what science lab doesn't have a good third of its researcher's not even native speakers to begin with. you don't need to spell to be a scientist.

 

[bullybeef]

I took the press release to my doctor today. As you know XMRV is a dirty word in the UK. She asked me if my consultant could test me for XMRV! My GP has been very positive in regards to XMRV, but this is the first time she recommended, or implied I should be tested. I think we're getting through them.

Funnily enough though, she said you don't look very well today, I just laughed and shrugged my shoulders!!!

 

[judderwocky]

LOL i love it... now that there is a reason for us to look sick, we magically do... imagine that

You know, my lymph glands are still swollen, i still get ulcers in my throat, i still have nausea ...etc etc... but now somebody is going so "see" it

im just waiting for them to publish a study showing that "cfs is worse now than it used to be"... "before we couldn't detect it because the symptoms weren't as bad, but now people really are much sicker"... sigh... im just waiting for the mental gymnastics to catch up.... not that i think it will be taken seriously...but for entertainment value, you have to admit, the more desperate people get the more crazy their explanations do... im just waiting to see what Deniers et all have to say now... im sure it will be entertaining

 

[Sasha]

"The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."​

Sorry if I've missed this (400 posts in this thread!) but the wording of this seems to me ambiguous about whether the strong CFS/XMRV association is part of what Dr Alter has confirmed or just the prevalence of 4-ish % XMRV in the general population. Of course, even the latter would be good news for getting more research done but the former is the $64,000 question.

Is there any info to clarify? Apologies if this question has already done the rounds - if so I'd be grateful for just a link to whichever post answered it. I can't take it all in!

 

[Martlet]

Haha - that would be a great thing to wear to doctor appointments.

Wouldn't it?

Anyone up to designing it???

 

[judderwocky]

i dont think they would have said that causaility is likely but not proven if they hadn't verified both parts.... one seems to imply the other

 

[Martlet]

I took the press release to my doctor today. As you know XMRV is a dirty word in the UK. She asked me if my consultant could test me for XMRV! My GP has been very positive in regards to XMRV, but this is the first time she recommended, or implied I should be tested. I think we're getting through them.

Funnily enough though, she said you don't look very well today, I just laughed and shrugged my shoulders!!!

YAY!!!
:victory:


When I mentioned it to my doctor in February, he said he had heard of XMRV but didn't recommend testing because (a) not replicated (b) don't know if it's causative and (c) wouldn't know what to do if I was positive. He is a cautious (but good) doctor and I am wondering if this will change his mind. In any case, since we have our house on the market and will move to Germany the instant - the very instant - it sells, it would be good to have something concrete before registering with yet another doctor.

 

[Martlet]

I'm going to call an artist friend in New York. I think she could do a very nice design.

 

[Jemal]

Good news!!
WPI post NIH & FDA finding on there website!!! http://www.wpinstitute.org/news/news_current.html

wohooo!!

And the announcement on the WPI website is now gone...
Guess there is still an embargo. Not sure if the WPI is making friends... but they have been unorthodox before.

 

[pollycbr125]

I took the press release to my doctor today. As you know XMRV is a dirty word in the UK. She asked me if my consultant could test me for XMRV! My GP has been very positive in regards to XMRV, but this is the first time she recommended, or implied I should be tested. I think we're getting through them.

Funnily enough though, she said you don't look very well today, I just laughed and shrugged my shoulders!!!

pmsl bully you dont look very well today has she only just noticed now that theres a real chance your carrying a retrovirus . maybe she is a bit worried about catching it .

 

[bullybeef]

Just be reading (anther) blog in regards to causation. Hypothetically, if it took until this time next year for XMRV not to be proven to cause ME, there could be so many people XMRV positive by then, how could they possibly go backwards, and continue to ignore it? Or could they say we never had ME in the first place, and that our XMRV symptoms are very similar to ME?

Just playing with ways they could still discredit everything.

 

[pollycbr125]

think ill have a T-shirt made up with a picture of a weasel on the front and on the back ' the weasel is dead ' :victory:

 

[judderwocky]

it shouldn't be difficult to prove causation. find antiretrovirals that work on XMRV in vitro. Test said drugs on people with CFS/ XMRV, if they're symptoms improve... that at least establishes that it contributes...obviously the greater their improvement the more likely it is causitive.... or depending on outcomes, the key to the disease....

after listening to the reports by peope going on anti retrovirals, i have to say, it sounds promising.

 

[Martlet]

My friend just said she would be glad to make up a t-shirt design for us all to use. But then a storm hit and her phone went dead, so I'll email her.

 

[Sasha]

i dont think they would have said that causaility is likely but not proven if they hadn't verified both parts.... one seems to imply the other

My question was really whose finding about the strong association and causality likely but not proven Dr Alter was talking about - the WPI's original finding (of a strong association that nevertheless didn't prove causality but made it look likely) or new research by Alter's group. The wording (from Dr Alter's slide) seems ambiguous to me in that respect - of course, to anyone in the audience it would have been clear! The new figures about prevalence in the blood supply seem to make it clear that that research at least is Alter's. But the CFS/XMRV link? Anybody?

 

[Mark]

Nice ideas pinging around...

Front: Told You I Was Sick (or tolduiwuzsic)
Back: Now Listen To M.E. !

Work in progress...

 

[Wonko]

that wording also with
front - picture of a staggering weasel
back - picture of a weasel with an exploded head (or some other method of demise lol)