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The Fight is on...Imperial College XMRV Study

Alice Band

PWME - ME by Ramsay
Messages
175
Location
UK
Sadly, the BBC are very fond of Wessely. When the USA Senate did the report on Gulf War Syndrome, the BBC had Wessely on straight away to tell us that they were wrong - and he was still right. There was no serious attempt by the news program to debate the issues, just pure PR for him.
 

alice1

Senior Member
Messages
457
Location
Toronto
And we've weathered this how? I can be slow ok.
Never mind I just read the above posts..by the time I wrote and sent this there were already 6 messages.
Geez you are fast! Great responce from Suzanne Vernon.
 
G

George

Guest
Hang in there Alice. Check out Nuts and Bolts for help and PM me any time for more info on how to do something. I'll be glad to help if I can.

If you can highlight the text on the CFIDS web site then go up to the top of your browser and choose "edit" and then choose "copy" come back here, click reply to thread and click in the box once it comes up. When you see the curser blinking in the box then go up to the top of your browser to "edit" and choose "paste". Then click the Post Quick Reply button. Give it a try if you are feeling adventurous.
 

hvs

Senior Member
Messages
292
1.If you are excluding detectable organic illness then how are you working with CFS patients? Most of us have some detectable organic illness, POTs, cardiac damage, brain lesions, thyroid problems, low cortisol, etc. While it's true that they ruled out the Fukuda specified exclusionary psychiatric disorders, no one was schizophrenic, or paranoid delusional you notice that they do not specify that they used the Fukuda criteria to choose patients.

I read this as you do, and if we're correct, then this study is completely, immediately dismissible.
 

Dr. Yes

Shame on You
Messages
868
The CFS/ME Community (including the wonderful CAA) has weathered our first negative psydo-replication study (grin) Hat's off to us.

Not yet!! We still need to see that this paper is properly critiqued on both sides of the Atlantic... Relevant doctors (like Dr. Vernon, not to mention Klimas et al) should write in to the publishing journal and raise the same questions we did (plus any of their own) about the selection criteria, protocols, and hyperbolic claims in this study.. And yes, again, Dr. Vernon's statement really has to be conveyed to the BBC and the Associated Press, at the very least.. with an eye being kept open for major newspapers where this story might find itself in the coming days..

Jenny S. ( I just... I just can't bring myself to call you "J-spot"), if you're still reading this... Is the CAA already planning this, and if not, could you please raise this idea with them? As garcia noted, we have accomplished nothing if we are just "preaching to the choir".
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Geez Parvo

Some interesting stuff! Thanks for digging it up.


And geez, if this is an example of what you can do when you are sick, I would be scared to see what you could do if you were well!!

:Retro tongue:

Maxine

P.S. remind me never to make you my enemy.
 

Advocate

Senior Member
Messages
529
Location
U.S.A.
It was edited by someone from UCSF...It is clearly a biased hit job on the WPI. "Blinded PCR operator", indeed!
Hi Levi,

Does the article say it was edited by someone from UCSF or do you know this from another source? I couldn't find it. (I'm only up to post #81. Maybe you elaborated in a later post.)
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Wessely on Neuroendocrine Dysfunction

I'm really confused by this. Surely he can't be excluding patients with abnormal cortisol levels from his definition of CFS... but I don't know why he'd mention cortisol levels otherwise. I've not been reading any of his recent papers, so have no idea about his own beliefs as to how CFS and cortisol could be related.

Here is a quote from a currently being sold medical online textbook. I don't know if this helps or not.

ENCYCLOPEDIA OF STRESS

Author: George Fink
Publisher: Elsevier
Publication Date: 2007

Chronic Fatigue Syndrome
A. J. Cleare and S. Wessely
King's College London, Institute of Psychiatry, London, UK

This article is a revision of the previous edition article by A J Cleare and S Wessely, volume 1, pp 460466, 2000, Elsevier Inc.

Neuroendocrine Dysfunction

Abnormal function of the hypothalamic-pituitary-adrenocortical (HPA) axis (Figure 2) has been demonstrated in several centers. Most, but not all, of the better-quality studies using serial samples of blood or saliva, or 24-h urinary collections, have found reduced basal cortisol output, again the reverse of that seen in major depression. Studies of the circadian rhythm suggest a blunted early morning rise of corticotropin (ACTH). This is paralleled by the findings of an impaired ACTH or cortisol response to a variety of challenges to the HPA axis, including CRH, arginine vasopressin (AVP), Synacthen (124 adrenocorticotropin), insulin, naloxone, exercise, social stress, and awakening. There is also evidence of heightened negative feedback and glucocorticoid receptor function. However, there is no evidence for a unique or uniform dysfunction of the HPA axis. Given the many factors that may impinge on the HPA axis in CFS, such as inactivity, sleep disturbance, psychiatric comorbidity, medication, and ongoing stress, it seems likely that HPA axis disturbance in CFS is heterogeneous and of multifactorial etiology.

One issue with all of the above studies is that they were largely undertaken on samples of patients that had been ill for several years, and the relevance of these HPA axis changes to the onset of illness is unknown. Prospective studies of groups at high risk of developing chronic fatigue (post-EBV infection and postsurgery) have found that the development of fatigue 6 months later was not associated with any HPA axis changes.
Thus, at present it appears that HPA axis changes are not important during the early stages of the genesis of fatiguing illnesses. However, the low cortisol levels that may develop at a later stage of the illness do appear to be of clinical relevance, since their reversal using supplementation with a low dose of hydrocortisone can improve fatigue in some patients. Also, there is now evidence that HPA axis changes can be reversed by modifying behavioral features of the illness such as inactivity, deconditioning, and sleep disturbance, using cognitive behavioral therapy.

Consistent evidence for other disruption of other neuroendocrine systems is lacking.
 

Cort

Phoenix Rising Founder
I think that Dr. Vernon's just impeccably objective. That got her in trouble when the study was first published but it worked out well here. Basically I feel like I can trust her - which is very good - because we don't really have anybody else out there who's either able or willing to publicly comment on the technical details. We're basically at sea here.

The CAA doesn't have a dog in this fight; its not their research or their finding; they can take a nice objective stance. They went through the first retroviral discovery and all the controversy that that caused - and I'm sure they have no desire at all to go through another process like that. They want this to be done right and it sounds like that DHHS Study will be done right.

"The U.S. Department of Health and Human Services*Blood XMRV Scientific Research Working Group*is conducting a rigorous study to detect XMRV.*Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients.*We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur."

I hope the CAA is in touch with other media outlets to give the other view on the study. We'll see if they include the 'buts' in the study.
 
K

_Kim_

Guest
Hi Levi,

Does the article say it was edited by someone from UCSF or do you know this from another source? I couldn't find it. (I'm only up to post #81. Maybe you elaborated in a later post.)

This is between the Abstract and the Body of the Article

YY69d.jpg
 

Orla

Senior Member
Messages
708
Location
Ireland
On thing from the CAA statement (otherwise a useful statement):

Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide.

Simon Wessely and Anthon Cleare do not recognise ME/CFS as an organic condition. They accept there can be a viral trigger (mostly probably because it cannot be denied!) but they think that it is abnormal beliefs and behaviours that keep us unwell.

Orla
 

hvs

Senior Member
Messages
292
Hey hvs!!!

Looks like the CAA heard you. At least their timing was right on.

Agreed. Their timing was great. Thumbs up. Nice.
Dr. Vernon is qualified to criticize their practices, and I'm not, so it's great that she did that.
It's too bad that she didn't draw attention to the poor subject pool, which appears to be Reeves Disease/Oxford people who aren't necessarily sick.
 
G

George

Guest
Laughing and waggin, laughin and waggin

Some interesting stuff! Thanks for digging it up.


And geez, if this is an example of what you can do when you are sick, I would be scared to see what you could do if you were well!!

:Retro tongue:

Maxine

P.S. remind me never to make you my enemy.

I love you Parvo (big sloppy lick) your awesome.

We weathered it because we caught it 12 minutes after it hit the web (the BBC article) No one could have got to the information faster (except Dr. Vernon (grins)) We got the paper with in minutes of it's publication. We read it, we dissected it (correctly), we knew it was not a credible replication work, The CAA via Dr. Susan Vernon refuted the valid points of the paper in a clear and polite manner. (unlike the discussion portion of the paper which took swipes at the science paper) We are aware that the work needs to be refuted in all major papers and journals. We will over the coming weeks do our part to e-mail, comment, and otherwise let any media persons know the truth. I believe that the CAA will do the same.

That's advocacy in action!!!!

I ain't worried 'bout nothin' (cept the next study (grins))
 

alice1

Senior Member
Messages
457
Location
Toronto
You lost me at 'if'..I will try later(promise) as I need to use the last bit of energy for a wee workout or I'll never do one again.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Wait a second.. none of the people here at PR that are from the UK have been tested for XMRV right? I need to see what your tests come out as and you need to be tested by the WPI itself.
 
K

_Kim_

Guest
What are the editorial responsibilities in something like this?

Maxine

Who is Douglas F. Nixon M.D., Ph.D.?

Associate Investigator
Gladstone Institute of Virology and Immunology
Associate Professor of Medicine
University of California, San Francisco
Email: dnixon@gladstone.ucsf.edu
Telephone: 415-734-4815
Fax: 415-553-6299

Areas of investigation
The work of this laboratory is focused on cellular immune responses to HIV, including the impact of highly active antiretroviral therapy on immune responses, HIV transmission across mucosal barriers, and the prevention of transmission through vaccination.
 

valia

Senior Member
Messages
207
Location
UK
Guardian uk

This just in from Google Alert

http://www.guardian.co.uk/lifeandstyle/2010/jan/06/chronic-fatigue-syndrome-xmrv-virus



Research casts doubt over US chronic fatigue virus claim


UK study fails to find proof of headline-grabbing American study into test for ME/CFS



* Sarah Boseley
* The Guardian, Wednesday 6 January 2010
* Article history


Serious doubt has been cast on the theory that made headlines around the world last October that chronic fatigue syndrome, or ME, is caused by a new retrovirus.

Scientists at Imperial and King's universities in London have attempted to replicate work carried out in the US and published in the journal Science last autumn. But they found not one of the 186 patients they studied had a trace of the novel virus, called XMRV, in their blood samples.

The theory, which made headlines around the world last October, gave hope to many. About three in every 1,000 people, possibly more, suffer from chronic fatigue syndrome (CFS), formerly known as myalgic encephalomyelitis (ME), which is a condition described one of the authors of the paper, Dr Anthony Cleare, reader in psychiatric neuroendocrinology at King's, as serious and debilitating and extremely frustrating for sufferers who do not know its cause.

The study in Science, by Vincent Lombardi and colleagues at a small private pathology laboratory in Reno, Nevada, sent many patients hurrying to doctors for tests and antiretroviral drugs.

Lombardi and his team reported that they had found the virus XMRV in 67% of the CFS patients they tested. Later they said they had found it in 95% of patients. Lombardi has devised and sells a test for the virus in north America.

Scientists around the world embarked on their own tests, and Dr Cleare and his colleagues are the first to publish results. "If this research is replicated, it is potentially a huge breakthrough in understanding this condition," he said.

King's College hospital runs a specialised CFS/ME clinic. The researchers selected blood samples from 186 patients who were, they said, typical of those who attend. They had suffered for years, were very disabled by the disease and more than 90% said their illness definitely or probably started after a viral infection.

They sent the samples to a team at Imperial's retrovirology labs. Professor Myra McClure, from the division of medicine at Imperial College London and one of the authors of the study published today by PloS One (Public Library of Science), said: "Our research was carried out under rigorous conditions. We used very sensitive testing methods to look for the virus. If it had been there, we would have found it.

"The lab in which we carried out the analysis had never housed any of the murine leukaemia viruses related to XMRV, and we took great care to ensure there was no contamination. We are confident our results show there is no link between XMRV and CFS, at least in the UK." The authors say there is no evidence to justify testing people with CFS for the virus or putting them on drug treatment.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
I agree with Orla that I can't find support for this bit of Vernon's (very good) statement in the paper:

Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide.

Anybody?

Also I have to agree with Dr Yes that our work is far from done - WE know this study is crap :Retro smile:, but the rest of the world does not know that yet.