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#1 akela

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Inviato 05 gennaio 2010 - 09:53:59

The CFIDS Association of America reports that the Health and Human Services Working Working Group on XMRV  will have oversight over the federal effort on XMRV.  Dr. Suzanne Vernon, the CFIDS Association's Scientific Director will be part of the group along with representatives from the NIH, CDC and FDA. It appears to be a large effort indeed.  With regards to ME/CFS the group is taking a three stage approach:

(1) First they will attempt to standardize and validate tests for XMRV. Then they'll test 1,200 healthy donors and 100 patients provided by the Whittemore Peterson Institute.

(2) Secondly they'll assess the prevalence of XMRV in the general populations, the blood supply and in other groups of people with CFS

(3) Lastly they'll dig into to how XMRV is transmitted, what effects it may have, and how it may affect other groups


The CDC's HIV division study will reportedly assess WPI samples, Wichita/Georgia samples and hopefully samples from other CFS groups. As of Oct 29th Dr. Miller reported that 100 'CFS' samples had been tested
Dr. Nancy Klimas - ME/CFS patients in her ongoing "Good Day: Bad Day" study - Miami, Florida
Dr. Nancy Klimas - Gulf War Syndrome patients in another ongoing study - Miami, Florida
Cornell University in cooperation with the Columbia University Center for Infection and Immunity and the Whittemore-Peterson Institute are embarking on a study assessing XMRV status in relation to functionality
 Cooperative Diagnostics Lab in South Carolina is reportedly using cutting edge technology to assess XMRV
Dr. Bell will be assessing patients from his pediatric Lyndonville cohort from the early 1980's using Dr. Ruscetti 's laboratory at the National Cancer Institute. 
Dr. Illa Singh and the retroviral lab at the University of Utah at Salt Lake City are developing a test for XMRV. Dr. Bateman is working with her.
 Dr. Joliceur at L'Institute de recherche attached to the University of Montreal in Montreal, is reportedly doing a 50 patient study.
Panorama Research Institute in Sunnyvale, Ca. is developing their own XMRV test for CFS. (They were advertising on Craigslist for patients!)


• a UK study involving Dr. Kerr and including samples from Dr. Enlander in the US - uses both Fukuda and Canadian criteria, assessing gene expression in NK cells and XMRV status - Target Date - Summer 2010
• another UK study from the University College London
• a Swedish study  - Target Date - Spring/Summer 2010 - this study is reportedly using new cutting edge technology
• Institute Ferran Spain - 100 patients with demonstrated abnormalities on repeat exercise tests/100 controls Study begins - January 2010
• Dr. Shepard of the MEA reports four 'very good' research groups are 'very keen' to do followup studies and that money is not a problem

• Dr. Lloyd in Australia is testing his Dubbo study patients. His may be the first study published.  Target Date - January 2010.
• A New Zealand study has been proposed.

#2 Zac

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Inviato 06 gennaio 2010 - 14:59:18

Fonte: Invest in ME


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.

Zac
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"In medicina tutto quello che è sconosciuto è malattia mentale" (...)
"Una delle malattie più diffuse è la diagnosi." (Karl Kraus)
NO_CFS.gif

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#3 akela

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Inviato 06 gennaio 2010 - 17:09:16

Fonte: Invest in ME


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

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.

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UN parere, che francamente non mi sembra nemmeno determinante. Che il campione non fosse omogeneo lo dice lui. Le malattie confondibili con la cfs sono molto più facilmente identificabili.
Inoltre data l'estensione delle ricerche la questione si chiarirà presto.

#4 Falco

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Inviato 07 gennaio 2010 - 00:17:06

io ho molta fiducia in questa ricerca . ;)

ma non si potrebbe dire qualcosa prima del 24 maggio :167:

#5 Zac

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Inviato 07 gennaio 2010 - 00:34:16

La traduzione dell'articolo è postata qui: http://www.cfsitalia.it/public/CFSForum/index.php?showtopic=4398

Zac
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"In medicina tutto quello che è sconosciuto è malattia mentale" (...)
"Una delle malattie più diffuse è la diagnosi." (Karl Kraus)
NO_CFS.gif

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#6 akela

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Inviato 07 gennaio 2010 - 10:18:32

io ho molta fiducia in questa ricerca . ;)

ma non si potrebbe dire qualcosa prima del 24 maggio  :167:

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Perchè 24 maggio?

#7 Falco

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Inviato 08 gennaio 2010 - 01:12:51

nell'articolo di Invest in ME quasi alla fine si fa riferimento
al 5° convegno internazionale sulla ME/cfs che si terrà a Londra
il prossimo 24 maggio in cui si pensa saranno annunciate delle novità
sulla ricerca dell'WPI

Messaggio modificato da epione, 08 gennaio 2010 - 01:13:51


#8 akela

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Inviato 08 gennaio 2010 - 11:51:37

Fonte: Invest in ME


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.

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La risposta del WPI

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.

Il WPI non consiglia l'uso di farmaci antiretrovirali la cui efficacia nel curare l'infezione da XMRV non è ancora stata dimostrata. Tuttavia molte case farmaceutiche hanno espresso interesse per lo sviluppo di farmaci antiretrovirali e immunomodulatori che possano essere efficaci nella terapia delle malattie associate al XMRV.
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.

Messaggio modificato da akela, 08 gennaio 2010 - 12:00:36





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