XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7

XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7

WordPress Shortlink for this posting: http://wp.me/p5foE-2aa 

Media

NHS Choices

http://www.nhs.uk/news/2009/10October/Pages/Does-a-virus-cause-ME.aspx

The “Behind the Headlines” item – “Does a virus cause ME?” has now been shifted from the Category “Mental Health” to the Category “Neurology”.

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PULSE

http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4123887&c=1

Very brief report and comment section

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BMJ News

http://www.bmj.com/channels/news.dtl

No coverage whatsoever.

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Wikipedia

Wikipedia stub: Xmrv http://en.wikipedia.org/wiki/Xmrv

Wikipedia article: Retrovirus http://en.wikipedia.org/wiki/Retrovirus

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Whittemore Peterson Institute

Source: Lois Ventura www.name-us.org    13 October 2009

Lois writes, “Below is a response I received following a thank you note to WPI. Patients and others may find the info helpful. Angelina Gordon gave permission to repost unedited only.”

Thank you for your interest in the Whittemore Peterson Institute and our new research findings on XMRV. We have been overwhelmed with both your encouraging comments and the volume of email and traffic to our web site. We are working on answering many of the general questions posed in the last few days. Individual specific questions will be evaluated and responded to as appropriate.

– XMRV Testing: The number one request has been “how do I get tested for XMRV?” The WPI is negotiating an agreement with a clinical laboratory to allow for limited testing. These limited test services will be made available as soon as possible and we will provide information on this website as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back to our website for updates.

– Research Studies: If you are interested in possibly being selected to participate in ongoing or future WPI research studies, we are working on an interactive form for our website. It should be available in the next few days, and we encourage you to complete the form at Whittemore Peterson Institute for Neuro-Immune Disease. While every study has specific requirements and not all who volunteer will be accepted, your willingness to participate is both crucial and deeply appreciated.

– Becoming a Patient: WPI is currently constructing our new home on the campus of the University of Nevada School of Medicine. It will open in the summer of 2010. At this time we are not able to accept patients, but would be happy to add your name to our interest list. With the rapid pace of research discoveries, we hope that there will be new treatment and diagnostic options available when we celebrate the opening of the new building.

The discovery of XMRV in ME/CFS patients opens an entire new avenue of neuro-immune disease research and our discovery has brought to this field world-renown immunologists and retrovirologists. Our team of collaborators is working daily to translate our discoveries into new treatments as soon as possible.

The discovery also raises many new questions about the role of XMRV in these diseases, how it is spread, what new or existing treatments may help combat the virus, and how treating the virus might improve the health of patients. For access to what we know to date, please see our XMRV Q&A. We will update it regularly and keep you informed.

Whittemore Peterson Institute – XMRV Q & A

We know many of you have been waiting years for answers, accurate diagnoses and some kind of effective treatments. All of us are dedicated to finding these, and we will continue to work as hard and as quickly as possible. Please remain hopeful, and keep in contact with us via the website or email. Making sure we have all of your contact information will ensure we are able to contact you with further information as it becomes available to us.

Angelina Gordon, Whittemore Peterson Institute

Cort Johnson’s site and Blog

XMRV/XAND Info Center Now Up on Phoenix Rising

The discovery of the XMRV retrovirus in most chronic fatigue syndrome (ME/CFS) patients appears to be a demarcating point in the history of this illness. The publication of the study in Science, the most prestigious scientific journal in the world, by a stellar cast of researchers from the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute prompted a flood of stories across the major media outlets and scientific publications including Nature, Scientific American, the New York Times, (two articles), NPR, Fox News, LA Times, etc.

Amid concerns that the blood supply was contaminated the NIH officials announced they’d already held a conference on the issue. The Whittemore Peterson Institute rapidly conferred a new name for what it believes are a cadre of XMRV diseases – XAND (X Related Neuroimmune Disorder).

Questions were quickly raised concerning prevalence, transmission, testing, treatment, etc.

Check out the below sections for more information on this startling find. The first page – a very long – contains an overview of what I’ve learned thus far. Much of it, of course, is subject to change.

Immense congratulations and thanks, of course, go to the WPI.

Check out the below sections for more information on this startling find. The first page – a very long – contains an overview of what I’ve learned thus far. Much of it, of course, is subject to change.

Game Changer: the overview: what happened, prevalence, transmission, diagnosis, related research, etc. – http://aboutmecfs.org/Rsrch/XMRV.aspx

Treatment Options- potential treatment options – http://aboutmecfs.org/Rsrch/XMRVIntro.aspx

Resource Page- links to articles, blogs, websites – http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

Discussion Center- Discuss XMRV/XAND here – http://forums.aboutmecfs.org/forumdisplay.php?f=54

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Media Round ups for the XMRV story:

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa  (you are here)

Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: http://wp.me/p5foE-29L 

Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study: 
http://wp.me/p5foE-299

Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:
http://wp.me/p5foE-28F

Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media: http://wp.me/p5foE-280

Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09: http://wp.me/p5foE-27v

Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09: http://wp.me/p5foE-272

Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME

Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME

1 August 2009

In the past two days, various material has been published on the internet in relation to matters arising out of the Judicial Review of the NICE Guidelines on CFS/ME which was heard in the High Court in February, this year. 

This includes a statement issued on behalf of Professor Malcolm Hooper and Margaret Williams.

The statement discloses that in April 2009 a “substantial complaint” was served on the legal representatives for the Fraser/Short legal challenge – a complaint said to be currently before the Legal Complaints Service and the Bar Council Standards Board and the subject of on-going action.

The Statement from Professor Malcolm Hooper has been published by Stephen Ralph, on Professor Hooper’s behalf, on Co-Cure and on ME Action UK site and is dated 29 July 2009.  A second statement issued by Professor Hooper was published on 5 August.

On 30 July, Jane Bryant, Director of the ONE CLICK Group and the Interested Party’s Litigant Friend in the Judicial Review, published a report and commentary on the ONE CLICK Group site. Selected court documents were also placed in the public domain on 30 July which form an integral part of the report and which need to be read in conjunction with this report.

The report reveals that following the Judicial Review hearing, Beachcroft LLP, the solicitors acting for NICE, submitted a Wasted Costs Application which was granted by the High Court and that in June 2009, Leigh Day & Co were served with a Wasted Costs Order of £50,000, payable to the Defendants, NICE.

As some of the issues set out and discussed within the statements, the report and associated court documents relate to the “substantial complaint” and “on-going action” against the legal representatives who had acted for the Claimants, Mr Douglas Fraser and Mr Kevin Short, I am not intending to publish the statements from Professor Malcolm Hooper of 29 July and 5 August, nor the report and commentary by Jane Bryant of 30 July.

I refer readers, instead, to the respective websites of those who have published this material.

The statement appended has been published elsewhere, today, by two individuals who were not involved in either the case for the Defendants or that of the Claimants and the Interested Party, but who wish to clarify their respective positions, in the light of recent events. 

Previous postings around the NICE CFS/ME Judicial Review are archived under Category tag NICE Judicial Review 

COURT JUDGMENT Document for hearing 11 and 12 February 2009 in PDF format here:   Approved NICE Judgment  [1.3MB]

NICE PRESS STATEMENT ISSUED: 13 MARCH 2009

NICE statement on CFS/ME judicial review outcome

http://www.nice.org.uk/media/001/6F/CFSMEJRJudgementStatement130309.pdf

or open PDF here:   cfsmejrjudgementstatement130309

The Expected Review Date for NICE G53 is currently given as August 2010.

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For BMJ Rapid Responses to NICE related articles and Letters

See: http://www.bmj.com/cgi/eletters/338/jun04_3/b1805#217952

for Rapid Responses to:

PRACTICE:
Pauline Savigny, Paul Watson, Martin Underwood on behalf of the Guideline Development Group
Early management of persistent non-specific low back pain: summary of NICE guidance

(Tom Kindlon, Information Officer, Irish ME/CFS Association)

and http://www.bmj.com/cgi/eletters/339/jul28_3/b3028

for Rapid Responses to:

LETTERS:
Michael Rawlins and Peter Littlejohns
NICE outraged by ousting of pain society president

(Tom Kindlon, Information Officer, Irish ME/CFS Association; Dr Ellen Goudsmit)

 

Permission to repost 

CLARIFICATION BY ANGELA AND STEPHANIE KENNEDY

In light of recent events and suggestions made elsewhere about both of us, we would like to clarify, collectively, the following:

In 2005, Stephanie, after receiving a ‘CFS/ME’ diagnosis in 2001/2002, was subsequently given a ‘borreliosis’ diagnosis, following test results. As anyone with any knowledge of the problems facing people diagnosed with ‘CFS/ME’, or ‘Lyme’, or ‘borreliosis’ will understand, the political situation is not as simple as being diagnosed with one or another. A useful account, for the layperson, of the rank confusion and contestation surrounding ‘Lyme’, ‘borreliosis’ and ‘CFS’ diagnoses is given in Pamela Weintraub’s book “Cure Unknown: Inside the Lyme Epidemic”, with a foreword by Hilary Johnson, author of “Osler`s Web”. It should be noted that many people, initially diagnosed with ‘CFS/ME’, have subsequently received a diagnosis of ‘borreliosis’ or ‘Lyme’, or other condition or disease.

Stephanie remains severely physiologically impaired by her condition, though there have been small improvements due to certain treatments and a proper diagnosis of a cardiac/neurological condition. We would both like to go on record and say, specifically, that none of this improvement has been as a result of NHS policy or ‘care’. Our collective position remains that the NICE guidelines are inappropriate and dangerous.

In 2007, Stephanie attempted to bring, independently from any other party, a Judicial Review against NICE in respect of their Guidelines for ‘CFS/ME’. Because of the other, apparently partially funded, cases being brought at the same time, Stephanie could not secure Legal Aid and therefore unfortunately could not proceed. Situations such as these are apparently quite common and neither of us hold anyone ‘responsible’ for Stephanie’s failure to secure Legal Aid.

Another clarification we need to make is that we had no knowledge of the Short/Fraser case until it was first announced publicly, although it is clear they had knowledge of Stephanie’s case as her solicitors were mentioned by Professor Malcolm Hooper in his statement. Although we kept the One Click group informed of Stephanie’s intention to bring a JR action, we were not given any information by them, and therefore had no knowledge of the One Click JR case apart from that made public by them.

We are both keen to see accuracy prevail, because we believe there are important advocacy lessons that might be learned from a careful analysis of what has happened. For this reason we may have cause to clarify any further issues raise by public comments made by supporters of the Short/Fraser or the One Click JR action.

Due to family problems at the time, Angela was unable to continue campaigning with the One Click Group. Since April 2006, the trajectory of campaigning that One Click has subsequently taken is therefore not that of Angela’s own, although Angela is aware that some of her work was used by One Click in the response to the NICE guidelines (for example, her “Summary of the Psychiatric Paradigm of ME/CFS” document), subsequent to her having discontinued her association with them. Angela has no problem with her previous work on either NICE or the psychiatric paradigm being used by other advocates, and is happy that this work has been of use to people.

Since leaving One Click in 2006, Angela continues to work in advocacy for people suffering because of ‘psychogenic’ explanations for their illness. For example, she co-initiated a campaign to ensure the APPG on ME were made fully aware of the objections many in the ME/CFS community have to the ‘psycho-social’ approach adopted by most of the ‘CFS/ME’ clinics. This was done in support of other advocates who had been highlighting this problem. In 2008 she, with another advocate, tackled the ongoing misrepresentation of the ME/CFS community that was taking place on Wikipedia, an unfortunate result of unsubstantiated allegations, made in the Gibson Report, about members of the ‘CFS/ME’ community ‘harassing’ a Professor. As a result of their attempts to protect the ME/CFS community from such unsubstantiated allegations being incorporated into the Wikipedia article on Simon Wessely, Angela was herself defamed on Wikipedia, and, falsely implicated as being involved in “personally harassing” Professor Wessely. More information on this subject can be found here in the public-archived dedicated Yahoo Group APK-Papers.

Angela continues to advocate for people adversely affected by the scientific and logical flaws in ‘psychogenic’ explanations for illness. She is currently working on an academic project which she hopes will benefit the ME/CFS, Lyme and other patient communities, a project supported by Stephanie. Both continue to support the work of other patient advocates whenever possible.

We both hope that the above clarifies our respective positions.

ANGELA KENNEDY
STEPHANIE KENNEDY

1 August 2009

Professor Malcolm Hooper, Journal of Clinical Pathology and Wikipedia

Update: As of 5 August 08, the reference to this paper by Prof Malcolm Hooper, published by the BMJ/JCP, has been reinstated to the Wikipedia article page and it has been recorded in the page History that the paper has not been retracted; the edit History tag also includes the URL to the clarification and apology to Prof Hooper published by the BMJ/JCP on its website. This reversion has been carried out by an editor other than “Jfdwolff” or “DGG” who had been requested to give this matter due attention.  Prof Hooper has been updated.

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May be reposted

Professor Malcolm Hooper, Journal of Clinical Pathology and Wikipedia

By Suzy Chapman
2 August 2008

On 2 July 2008, it was published by Dr Marc-Alexander Fluks, via the Co-Cure mailing list, that Professor Malcolm Hooper’s paper: Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research. J Clin Pathol 2007;60:466-471 had been retracted. The source of this information was given as the Journal of Clinical Pathology website. The Co-Cure mailing can be accessed here:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0807a&L=co-cure&T=0&F=&S=&P=903

Since this was news to Professor Hooper, himself, the Journal of Clinical Pathology was approached for a clarification.  In the interim, on 5 July, Professor Hooper issued the following statement via the Co-Cure mailing list and website, via Stephen Ralph of MEActionUK:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0807a&L=co-cure&T=0&F=&S=&P=5362

PROF HOOPER HAS NOT RETRACTED JCP PAPER.

Please note. The title of Dr. Marc-Alexander Fluks’ Co-Cure posting of 2 July 2008 “Hooper retracts CFS paper” is misleading as Professor Hooper has NOT in fact retracted his paper entitled: Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research. J Clin Pathol 2007;60:466-471.. There is presently some confusion as to exactly what is going on at the JCP regarding this matter but Professor Hooper categorically states:

“I wish it to be known that I have NOT retracted my Journal of Clinical Pathology paper on biomedical ME research, I have no intention of doing so, I have had no official communication from the JCP on this matter and am currently seeking clarification.” [Professor Malcolm Hooper; 5 July 2008].

 

The BMJ Group subsequently issued a clarification and an apology to Professor Malcolm Hooper which can be read here on The Journal of Clinical Pathology’s website:

http://jcp.bmj.com/misc/hooper.dtl

On 15 July 2008, the clarification of the status of this paper and the apology from the BMJ Group was published via the Co-Cure mailing list and on the Co-Cure website, by Stephen Ralph, on behalf of Professor Hooper, and can be read here: 

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0807c&L=co-cure&T=0&F=&S=&P=58

I also append a copy.

The JCP reinstalled access to the paper and the abstract and full version of the original paper in PDF format can now be found back on the JCP website at:

Abstract: http://tinyurl.com/5gj4zs

PDF Full paper:  http://tinyurl.com/6k7pze

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Statement of clarification from Prof Malcolm Hooper

[Published 15 July 2008 by Stephen Ralph]

A message from Professor Malcolm Hooper

“Attention is drawn to the recently-released apology from the Journal of Clinical Pathology regarding the alleged retraction of the Review ‘Myalgic Encephalomyelitis: a review with emphasis on key findings in biomedical research’ by Professor Malcolm Hooper. Professor Hooper notes that the immoderate and malicious comments which were posted on the internet regarding his paper have been shown to be false. He is saddened that such comments from those who profess to have the best interests of the ME community at heart have caused distress, dismay and confusion within the wider ME community”.

Statement of clarification and apology from Journal of Clinical Pathology

http://jcp.bmj.com

http://jcp.bmj.com/misc/hooper.dtl

The BMJ Group wishes to inform readers that a series of technical errors resulted in the unjustified retraction of the article “Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research”. The article’s citation details remain as originally published (J Clin Pathol 2007; 60: 466 – 471; doi:10.1136/jcp.2006.042408).

The Journal of Clinical Pathology offers an unreserved apology to the author of the article, Professor Malcolm Hooper, and regrets any confusion or distress that may have been caused.

Note: The Original Paper can now be found back on the JCP website

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www.meactionuk.org.uk

 

Wikipedia

In April 2008, a new Wikipedia article page was created titled:

ME/CFS controversies at: http://en.wikipedia.org/wiki/ME/CFS_controversies

The History Page for this article at: http://en.wikipedia.org/w/index.phptitle=ME/CFS_controversies&action=history 

records that on 11 July 2008, Wikipedia Admin, “Jfdwolff”, removed a reference to Professor Hooper’s paper Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research. J Clin Pathol, Hooper M from the Diagnostic controversies section of the ME/CFS controversies article as it stood at that date.

The reason for this edit is given by Admin “Jfdwolff”, in the edit tag, as “Hooper review has been retracted and therefore ceases to be a reliable source.”

On 1 August, I contacted two Wiki Admins who have been working on this article and advised them that the Hooper paper had not been retracted. I provided them with copies of Prof Hooper’s own statement of clarification and the clarification and apology issued by the Journal of Clinical Pathology in July, the link for the JCP’s website where the clarification and apology can be read and the link on the JCP’s website where the full copy of the paper can be accessed.

The response so far, from one of the Wiki Admins approached, has been to tell me that as for the retraction, he considers it would be good to be able to quote some source outside BMJ/JCP for the status.

Since the BMJ’s Journal of Clinical Pathology has already published a clarification on its website that the reporting of Professor Hooper’s paper as having been retracted was the result of a series of technical errors on its part, since the paper is now reinstalled on the BMJ’s website and since the web pages which erroneously reported the paper as having been retracted have since been removed by the Journal, one has to question the rationale behind this Wikipedia Admin’s desire to be able to quote a source outside the BMJ/JCP for “the status”!

Professor Malcolm Hooper, University of Sunderland has been advised of the situation and that a request has been made for this issue to be addressed by Wikipedia Admins.

I will keep you updated on the progress of this issue. In the meantime, until this issue has been resolved and until the status of this paper has been updated at http://en.wikipedia.org/wiki/ME/CFS_controversies (and on any other Wikipedia pages where references to this paper might have been made), readers of Wikipedia and editors and Admins working on articles associated with CFS/ME, that is,

http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome
http://en.wikipedia.org/wiki/Simon_Wessely
http://en.wikipedia.org/wiki/ME/CFS_controversies

should rely on the clarification on The Journal of Clinical Pathology website for their information.