Hysterical Woman
Senior Member
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- 857
- Location
- East Coast
shannah
Senior Member
- Messages
- 1,429
Just received this email:
Invest in ME Statement on
BBC NEWS
Article "Research finds no proof that a virus is the cause of ME"
6th January 2010
The perennial problem of trials such as this from ICL and those funded by the Medical Research Council is that they do not use well defined patient cohorts which can negate the research results.
To replicate a research study the patient samples used and the methodology have to be the same and in this case it appears that there are differences in both compared to the study published online 8 October, 2009 by the Science magazine.
The organisations in USA who discovered the XMRV retrovirus used the Canadian Guidelines to select patients for their research and Invest in ME feel the Canadian Guidelines should be used for all research.
Those who portray ME as a somatoform illness are fully aware that using patients who do not fit strict selection criteria will obviously skew results. We therefore have serious doubts about the the results of the ICL research.
If the correct patient cohorts are not participating in the trials or different methods are used then this will affect the results.
The result of finding no sign of XMRV would point to a different methodology to that used in the research published by the Science magazine 3.7% of controls tested positive.
The work performed by the Whittemore-Peterson Institute (WPI) and the National Cancer Institute and the Cleveland Clinic is of the highest quality and has been validated by Science magazine.
Much more research is underway and the results from the first XMRV replication trials such as these from ICL prove little.
People with ME and their families should expect these "false" results to be publicised early, especially as ME has been ignored by the government and research organisations for generations. However, the new XMRV research has changed the landscape for good and patients and carers can look forward to a new era of ME/CFS research based on the biomedical basis for the illness.
Proper science is now finally being performed.
Those who have delayed or stopped high quality biomedical research into ME from being performed in the past, and those who continue to downplay the significance of the new research from WPI, will not be in a position to continue this denial for much longer.
The WPI have promised more exciting news which we can expect to hear at the forthcoming 5th Invest in ME International ME/CFS Conference on 24th May in London.
Invest in ME remain convinced that the WPI research is of monumental importance to the future of research into ME and we look forward to the future and the momentum in biomedical research into ME which the XMRV research has generated.
Invest in ME
Registered UK Charity Nr. 1114035
www.investinme.org
PO BOX 561, Eastleigh SO50 0GQ
Invest in ME Statement on
BBC NEWS
Article "Research finds no proof that a virus is the cause of ME"
6th January 2010
The perennial problem of trials such as this from ICL and those funded by the Medical Research Council is that they do not use well defined patient cohorts which can negate the research results.
To replicate a research study the patient samples used and the methodology have to be the same and in this case it appears that there are differences in both compared to the study published online 8 October, 2009 by the Science magazine.
The organisations in USA who discovered the XMRV retrovirus used the Canadian Guidelines to select patients for their research and Invest in ME feel the Canadian Guidelines should be used for all research.
Those who portray ME as a somatoform illness are fully aware that using patients who do not fit strict selection criteria will obviously skew results. We therefore have serious doubts about the the results of the ICL research.
If the correct patient cohorts are not participating in the trials or different methods are used then this will affect the results.
The result of finding no sign of XMRV would point to a different methodology to that used in the research published by the Science magazine 3.7% of controls tested positive.
The work performed by the Whittemore-Peterson Institute (WPI) and the National Cancer Institute and the Cleveland Clinic is of the highest quality and has been validated by Science magazine.
Much more research is underway and the results from the first XMRV replication trials such as these from ICL prove little.
People with ME and their families should expect these "false" results to be publicised early, especially as ME has been ignored by the government and research organisations for generations. However, the new XMRV research has changed the landscape for good and patients and carers can look forward to a new era of ME/CFS research based on the biomedical basis for the illness.
Proper science is now finally being performed.
Those who have delayed or stopped high quality biomedical research into ME from being performed in the past, and those who continue to downplay the significance of the new research from WPI, will not be in a position to continue this denial for much longer.
The WPI have promised more exciting news which we can expect to hear at the forthcoming 5th Invest in ME International ME/CFS Conference on 24th May in London.
Invest in ME remain convinced that the WPI research is of monumental importance to the future of research into ME and we look forward to the future and the momentum in biomedical research into ME which the XMRV research has generated.
Invest in ME
Registered UK Charity Nr. 1114035
www.investinme.org
PO BOX 561, Eastleigh SO50 0GQ
Dr. Yes
Shame on You
- Messages
- 868
from Cort's statement:
At least, if you could point out that these issues remain to be clarified by those researchers, enough people will be aware of the study's possible shortcomings and someone will get to the bottom of all this...
Cort, could you make sure to include (and ask the CAA to include) the issue of cohort selection (or EXCLUSIONS) mentioned earlier in this thread? From the UK paper, it is not clear (it's very poorly written) whether they excluded patients on the basis of positive labs, etc (they don't even LIST all the exclusionary tests!). It's also rather unclear whether they used the Fukuda criteria exclusively or only for its psychiatric exclusionary criteria.
At least, if you could point out that these issues remain to be clarified by those researchers, enough people will be aware of the study's possible shortcomings and someone will get to the bottom of all this...
CJB
Senior Member
- Messages
- 877
The same thing occurred to me. It would explain a lot. But wouldn't it be monumentally stupid and wouldn't it require willfulness that I can't even contemplate. :worried: And why?
Would it help googlers if this thread were ended and a new one started with a new title such as "Glaring, obvious flaws in such-and-such study on XMRV and ME/CFS"? Or something better?
Kati
Patient in training
- Messages
- 5,497
LOL@ George, pissed off we are. We won't let anything wrong go by us again. Dr De Freitas can rest quietly.Calling for a group hug!!!Thank you for being there
Hey Advocate,
This is a real bugaboo for me.
How do we avoid disseminating misinformation? People looking for news items which are completely misleading regarding ME/CFS can easily find them compiled here for ease of reading. I think we may assume that they will get context here but I'm pretty sure they don't. Not that we don't provide it but people come, read what they are interested in, and leave.
I have been led by Google to all manner of sites when searching and I take note of how many hits it's getting, check out how many sites are carrying it, but don't usually read anything else on the site where I find it unless I'm concerned about veracity. Most people who would believe the bull are not all that concerned about veracity.
How do we avoid becoming the people who most avidly spread the bullcrap around?!
Do you know? :worried:
Kati
Patient in training
- Messages
- 5,497
How do we avoid becoming the people who most avidly spread the bullcrap around?!
Do you know? :worried:
How about sending a press release from the Phoenix Rising community and say that a gazillion members here will crash really soon from having to deal with a very very badly designed and executed reserarch by Wessley?:innocent1:
R
Robin
Guest
It was unblinded. Cort mentioned it and recalled how the DeFreitas study fell apart when samples were blinded.
Maybe this is all part of his dastardly plan.
I'm joking... I think
I put nothing past him, I really don't.
I once got "romantically" involved with a lawyer. He introduced me to many interesting things including the concept of: deny, deny, deny. This was revelatory to me. There must be some kind of fancy ass concept which explains this but, basically, you just keep repeating what you want everyone to believe, or deny what you don't want them to believe - brook no conversation, debate or dialogue - and, as if my magic, people begin to believe it.
This is what they do. Anybody know what that's called in psychological parlance? Dr Wessely, you must know. :worried:
LOL I had the same experience with a soldier. MMmm
Dr. Yes
Shame on You
- Messages
- 868
(Psst - Hey Koan - clear your PM folder!)
Cort
Phoenix Rising Founder
- Messages
- 7,392
The Power of the Forums.
I started a thread on Media Responses to the Imperial College XMRVStudy.
If you put in Imperial and XMRV in Google you get that thread at the top of the page.
Since I have the CAA's Response first what you see below the URL is
I started a thread on Media Responses to the Imperial College XMRVStudy.
If you put in Imperial and XMRV in Google you get that thread at the top of the page.
Since I have the CAA's Response first what you see below the URL is
The Power of the Forums.
I started a thread on Media Responses to the Imperial College XMRVStudy.
If you put in Imperial and XMRV in Google you get that thread at the top of the page.
Since I have the CAA's Response first what you see below the URL is
Nice :victory:
The Phantom
Member
- Messages
- 70
- Location
- near Philadelphia
Some other possibly relevant pieces of information
Sorry to add a long post to what is a very long thread, but I share several people's concerns about who did the review on this article. I did just a quick read of pLoS One's review policies, and it looks like the author may be able to choose his own editor--"Authors can recommend specific Academic Editors". Also, "Around 10%* of articles are peer reviewed by the Academic Editors themselves " It may not be possible, but it would be interesting to find out who, if anyone, beside Dr. Nixon (unfortunate name ...) reviewed the data.
Here's the link: http://www.plosone.org/static/review.action
It's odd they chose PLoS One to publish this, rather than PLoS Medicine or PLoS Biology, unless they didn't want it to be read by someone who actually knows something about the field. Makes you think they might have kind of liked the editorial policies. And this post by Tom Kindlon on Co-Cure a few days ago may shed some light on why they may have chosen an editor who works at UCSF:
It looks like Kings Health Partners want to influence medicine outside
their catchment area (see appendix 1).
People may recall that Kings College is where Simon Wessely and Trudie
Chalder amongst others have been based and Prof. Matthew Hotopf has
followed in their views.
Kings Health Partners recently announced:
--------
Strategic Partnership with UCSF
November 12th, 2009 Kings Health Partners has agreed to a pursue a
strategic partnership with the University of California, San Francisco
(UCSF) to explore opportunities for scholarly interaction, cooperative
research, faculty and student exchange and other forms of academic
collaboration
(more at:
http://www.kingshealthpartners.org/khp/2009/11/12/strategic-partnership-wit
h-ucsf/#more-681)
--------
So some people might be interested in:
Innovation Expo 2009
18 - 19 June 2009
Kings Health Partners presented a seminar at the Innovation Expo on 18 -19
June 2009 at the Excel Centre, London Docklands, which saw over 5,000
visitors over the two day event.
Our seminar was led with presentations examining three aspects of Academic
Health Science Centres from;
[..]
Professor Matthew Hotopf, Head of General Hospital Psychiatry,
Institute of Psychiatry, Kings College London
The whole person: mental and physical health
Slides are at:
http://tinyurl.com/ykzu3c6
i.e.
http://www.kingshealthpartners.org/khp/wp-content/uploads/2009/06/innovatio
n-expo-presentation-for-kings-health-partners-final.pdf
CFS is first mentioned on page 28.
Then the CBT School/Wessely school model is presented in slides pages
33-36.
Tom Kindlon
Sorry to add a long post to what is a very long thread, but I share several people's concerns about who did the review on this article. I did just a quick read of pLoS One's review policies, and it looks like the author may be able to choose his own editor--"Authors can recommend specific Academic Editors". Also, "Around 10%* of articles are peer reviewed by the Academic Editors themselves " It may not be possible, but it would be interesting to find out who, if anyone, beside Dr. Nixon (unfortunate name ...) reviewed the data.
Here's the link: http://www.plosone.org/static/review.action
It's odd they chose PLoS One to publish this, rather than PLoS Medicine or PLoS Biology, unless they didn't want it to be read by someone who actually knows something about the field
. Makes you think they might have kind of liked the editorial policies. And this post by Tom Kindlon on Co-Cure a few days ago may shed some light on why they may have chosen an editor who works at UCSF:It looks like Kings Health Partners want to influence medicine outside
their catchment area (see appendix 1).
People may recall that Kings College is where Simon Wessely and Trudie
Chalder amongst others have been based and Prof. Matthew Hotopf has
followed in their views.
Kings Health Partners recently announced:
--------
Strategic Partnership with UCSF
November 12th, 2009 Kings Health Partners has agreed to a pursue a
strategic partnership with the University of California, San Francisco
(UCSF) to explore opportunities for scholarly interaction, cooperative
research, faculty and student exchange and other forms of academic
collaboration
(more at:
http://www.kingshealthpartners.org/khp/2009/11/12/strategic-partnership-wit
h-ucsf/#more-681)
--------
So some people might be interested in:
Innovation Expo 2009
18 - 19 June 2009
Kings Health Partners presented a seminar at the Innovation Expo on 18 -19
June 2009 at the Excel Centre, London Docklands, which saw over 5,000
visitors over the two day event.
Our seminar was led with presentations examining three aspects of Academic
Health Science Centres from;
[..]
Professor Matthew Hotopf, Head of General Hospital Psychiatry,
Institute of Psychiatry, Kings College London
The whole person: mental and physical health
Slides are at:
http://tinyurl.com/ykzu3c6
i.e.
http://www.kingshealthpartners.org/khp/wp-content/uploads/2009/06/innovatio
n-expo-presentation-for-kings-health-partners-final.pdf
CFS is first mentioned on page 28.
Then the CBT School/Wessely school model is presented in slides pages
33-36.
Tom Kindlon
Pay to publish and "peer review" by just an editor would immediately discredit the paper if it were my field.
K
_Kim_
Guest
Nixon is an HIV researcher. I posted some info about him here and here
This about their peer-review process tells me that as long as the paper looks like it has followed scientific protocol, then it is published. Let the readers decide, they say. And we will.
Nope, you don't have to pay to get published in Science. You just need to have a stunning discovery and the data to support your findings. WPI did.
It is becoming more common to see journals that have a page charge. Nothing against PLos, but their peer review standards are a mere formality compared to the rigor that Science employs.