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The Fight is on...Imperial College XMRV Study

MEKoan

Senior Member
Messages
2,630
We had the highest number of people online today at around 1:48 Something like 290 visitors. We be important in this little game.

This is a critical piece of the puzzle. We are communicating in public. What we post is quoted in news pieces.

We are a part of this dialogue. I am proud to be a member of this community of intelligent people who will not be bamboozled.

We will continue to push the truth front and centre.
 

anne_likes_red

Senior Member
Messages
1,103
The side swipes are making me nervous too.

I have nothing political or scientific to add to this great thread, but I do have to say George - I'm really liking your signature :)
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Anne I think the polls are a great idea. They are just informal polls on a message board but I believe they show us a lot of data that's important.

What does track pick-ups mean?

Koan wrote: Hi Tee,

I think it means the service can track how many news agencies pick it up.

Oh...thanks.

~~~~~~~~~~~~~~~~~~~~

Thank you for posting the statement by the WPI, fds66.
Yes! The WPI comes through in shining colors. :victory:
 

Esther12

Senior Member
Messages
13,774
The side swipes are making me nervous too.

I have nothing political or scientific to add to this great thread, but I do have to say George - I'm really liking your signature :)

I'd be worried if people started seeing this as the big psychiatric vs medical showdown.

I don't have such faith in the WPI (or anyone else), and it seems that the psychiatric model wins by default when there's no compelling evidence of a physical cause, rather than needing to provide their own evidence.

We'll have to wait and see...
 

Cort

Phoenix Rising Founder
many think that there willGood point Holmesly,

Even if they'd had normal controls they should have found something but the fact that they didn't find anything even in the CFS patients, whatever kind of patients they were, suggests that it's all about the science; the different ways the two groups did the tests.

(I am getting quite bleary)

I will say that there is controversy over just how important it was to exactly reproduce Dr DeFreitas efforts in the first retroviral finding. The CDC after trying for almost two years I think gave up after what they considered a good effort. They felt that they should be able to use their standard tools to find that retrovirus.

They also felt Dr. DeFreitas kept pointing to alterations in their protocols - none of which they found convincing - as to why they couldn't find a virus. Ultimately they incorporated some of her alterations into their protocols and some of them they did not. (One included a machine that they didn't even own).

Based on their experiences as retrovirologists they came away very confident that there was no retrovirus; others however pointed out that they never actually followed Dr. DeFreitas exact protocols. She certainly felt it made a difference. Did it? No one really knows. They both had their points

Another thing - as someone mentioned these are very expensive tests. The leader of the retrovirology tests at the CDC wanted to find the original retrovirus and stated the CDC spent about $500,000 (18 years ago) trying to find it. Eventually with no results the CDC brass pulled the plug on the project - they were spending alot of money on it and couldn't get results. Basically with other bugs on their agenda they simply decided not to spend any more money on it. Money can play a role here.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Both groups, the Imperial College and the WPI, are getting a bit too aggressive in their comments for me. Of course there's alot at stake....

Cort, for me it feels like the first time in like forever that finally someone is fighting for us. I couldn't be more proud of the WPI and their efforts on our behalf.
 

Dr. Yes

Shame on You
Messages
868
Hey Cort,

Thanks for the Q & A with McClure. Too burned out to discuss at any length... just wanted to mention a couple things. She seemed almost snarky in her answers to you, as well... Sounds like a winning personality! :D But I noticed that she back-pedaled a lot when you asked her about her direct criticisms of the WPI.

The important statement is her last one:
"Our data simply says that we cannot find this virus in a UK cohort."
Or rather, could not find it. That would be more scientifically accurate. But look how different this (appropriately modest) interpretation of her results is from the statements she made to the press, such as:

"We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK."
That is a huge, and hugely different, statement... They don't seem like they are based on the same set of data, do they? Her later statement, the one she emailed you, is far more accurate. Compare it to the technicolor statement she made publicly and you can see the degrees of hype and hyperbole that went into their PR effort.

Very, very unprofessional and un-scientific.

p.s. - Yay WPI!! :Sign Good Job:

Nice response. What's a little bile between fr.. bitter enemies?
 

MEKoan

Senior Member
Messages
2,630
Good point Holmesly,

Even if they'd had normal controls they should have found something but the fact that they didn't find anything even in the CFS patients, whatever kind of patients they were, suggests that it's all about the science; the different ways the two groups did the tests.

(I am getting quite bleary)

Not so bleary that you're not making sense, big guy :Sign Good Job:
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
Don't forget that we can all make public comments on the websites of some newspapers that have reported on the Imperial College study. Cort (and Summer?) have kindly listed a few online newspaper articles in one thread.
 

MEKoan

Senior Member
Messages
2,630
DrYes,

If I had a brain left I would thank you in a very clever way for your fantastic contribution over the last 24 regarding the tenor of the writing in McClure's paper. I would tell you how consistently impressed I am with your marvelous posts which are always both intelligent and amusing. I would tell you that it is remarkable to me that you always make me think while you're making me laugh. That you accomplish all of this from a nursing home is beyond the beyond. You are the sexiest Gibbon ever there was.

Anyway, I don't have a brain so I can't but I will!
 

froufox

Senior Member
Messages
440
Cort, for me it feels like the first time in like forever that finally someone is fighting for us. I couldn't be more proud of the WPI and their efforts on our behalf.

I feel exactly the same as you and others Garcia. I dont feel that WPI are being aggressive, I think that they are just being assertive, standing their ground and stating the facts and I say good on them for that. Regardless of what happens with other studies I think it is so important for morale to know that they, at least, are passionate about our cause and rightly urging much more serious enquiry from other researchers. That is how I feel anyway, because so many other institutions have let us down and havent stood up enough on our behalf.
 

MEKoan

Senior Member
Messages
2,630
I feel exactly the same as you and others Garcia. I dont feel that WPI are being aggressive, I think that they are just being assertive, standing their ground and stating the facts and I say good on them for that.

Absolutely!
 
W

WPI Representative

Guest
FOR IMMEDIATE RELEASE

Frankie Vigil
R&R Partners for
Whittemore Peterson Institute
775-336-4555
frankie.vigil@rrpartners.com


Official Statement from the Whittemore Peterson Institute Regarding UK Study

The Whittemore Peterson Institute (WPI) has reviewed the paper entitled Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. This study did not duplicate the rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland Clinic, therefore it cannot be considered a replication study nor can the results claim to be anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.

The scientific methods used by WPI are very exact and require specific techniques to ensure accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences include, but are not limited to the following:

1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which were not validated by a clinical control.

The WPI study was published after six months of rigorous review and three independent lab confirmations, proving that contamination had not taken place and that infectious XMRV was present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria. In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated CFS patients to psychiatric care and not traditional medical practices.

Little is known about the prevalence of XMRV world-wide, much less the incidence of XMRV in ME/CFS or prostate cancer emphasizes Dr. Judy Mikovits. WPI and its NCI collaborators are actively engaged with international research teams to investigate these important questions.

WPI does not recommend the use of anti-retroviral drugs that have yet to be proven to be effective in treating XMRV infection. However, several large pharmaceutical companies have expressed interest in developing anti-retroviral and immune modulating drugs that will effectively treat XMRV associated diseases.

WPI looks forward to the results of other scientific groups around the world, serious about replicating its scientific results, by using the same techniques as WPI and its collaborators. The fact that XMRV was detected in 67 percent of the CFS samples in the U.S. study determined a significant association between XMRV and CFS, demanding a much more serious inquiry by responsible health agencies around the world as to the cause of this debilitating disease.

-###-


Whittemore Peterson Institute
The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of the immune system and the nervous system, often results in lifelong disease and disability. The WPI is the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X associated diseases, integrating patient treatment, basic and clinical research and medical education.
 

spit

Senior Member
Messages
129
Honestly, I think the WPI response is fine. It's somewhat aggressive, but it'd be surprising given some of the statements they're responding to for them to not seem a bit PO'ed. I know I would be -- several of the quotes seen back in this thread are pretty much scientific fightin' words.
 

Orla

Senior Member
Messages
708
Location
Ireland
Question re McClure

Dr. yes mentioned to Cort: Thanks for the Q & A with McClure

Where is this? Is this on this website somewhere?

Orla
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
FOR IMMEDIATE RELEASE

Frankie Vigil
R&R Partners for
Whittemore Peterson Institute
775-336-4555
frankie.vigil@rrpartners.com


Official Statement from the Whittemore Peterson Institute Regarding UK Study

.................

Whittemore Peterson Institute
The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of the immune system and the nervous system, often results in lifelong disease and disability. The WPI is the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X associated diseases, integrating patient treatment, basic and clinical research and medical education.

WPI Rep,

Will you be able to join us for continued discussions or just for posting news releases?

Thanks,

Maxine