XMRV Retrovirus: Round up 19: XMRV Blood Safety and Availability from HHS (US), PhD study

XMRV Retrovirus Whittemore Peterson Institute Science Mikovits Chronic Fatigue Syndrome

XMRV Retrovirus: Round up 19: XMRV Blood Safety and Availability from HHS (US), PhD study

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

Click here to download Lombardi Science paper

Or Open PDF here: Lombardi Science study

Supporting materials for Lombardi paper here: Supporting materials from Science

Perspectives article here: Science Express Perspective

For initial Whittemore Peterson Press Release, NIH (National Institutes of Health) News Release, Science paper go here: http://wp.me/p5foE-272

Click here for all previous XMRV Round ups and postings in reverse date order:

http://meagenda.wordpress.com/category/xmrv/

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XMRV Blood Safety and Availability from HHS (US)

On the CFIDS Association site

http://www.facebook.com/CFIDSAssn#/CFIDSAssn?v=app_2347471856

Xenotropic Murine LeukemiaVirus-Related Virus (XMRV)
Blood Safety and Availability
Office of Public Health and Science
Department of Health and Human Services (HHS)Jerry A. Holmberg, PhD, SBB
October 30, 200930 October 2009

The Office of Public Health and Science’s Blood Safety and Availability is aware of the recent literature suggesting linkage of chronic fatigue syndrome to a possible contagious rodent retrovirus, XMRV. XMRV has also been associated with an aggressive form of prostate cancer. Antibodies against the virus have been detected in 3.7% of healthy controls in a study of a small number of individuals. Currently there is no commercially available test for infection with XMRV. While there is no known association of CFS or prostate cancer with history of transfusion, the finding that the virus is associated with white blood cells has led some to question whether XMRV could be transmitted by transfusion and might therefore pose a threat to the health of blood recipients and potentially also transplant recipients.

The HHS Blood Safety Committee works with all the PHS agencies (i.e., CDC, FDA, HRSA, and NIH) to ensure the safety and availability of blood products as well as transplantation safety. Under the leadership of that committee, steps are being taken to investigate the blood safety threat from XMRV and the potentially protective role of white cell removal, which is performed on approximately 70% of blood. An interagency Emerging Infectious Diseases working group that reports to the Blood Safety Committee is currently assessing the literature on XMRV, conducting meetings with experts on this retrovirus, and interacting with groups that could study the question of blood safety. A report is expected within several weeks. In particular, the National Heart Lung and Blood Institute Retrovirus Epidemiology Donor Study-II (REDS-II) investigators are aware of the report in Science and are assessing the prevalence of XMRV in blood donors to determine whether studies aimed at evaluating transfusion-transmission rate are warranted using NHLBI’s repositories of donor and recipient blood samples.

HHS will remain vigilant in assessing the safety of the blood supply and developing interventions as appropriate.

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Links to Other Federal Guidelines

National Cancer Institute Interim Guidelines on XMRV:
http://www.cfids.org/temp/xmrv-guidelines-nci.asp 

NIH Fact Sheet on Transfusion Safety (general): http://www.nih.gov/about/researchresultsforthepublic/Transfusion.pdf

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PhD Project, University College London

PDF here

http://www.findaphd.com/search/showproject.asp?projectid=18971  

Dept/SchoolDivision of Infection & Immunity, University College London
Project Supervisor(s) Prof G Towers Dr P Kellam

Funding Availability Competition Funded Project (European/UK Students Only)

Application Deadline 23 November 2009

A role for XMRV in human disease

Laboratory supervisor: Prof Greg Towers

Clinical supervisor: Prof Deenan Pillay

Xenotropic murine retrovirus (XMRV) has recently been associated with chronic fatigue syndrome as well as prostate carcinoma in humans (1-3). XMRV is a murine endogenous virus found in the genome of mice and until recently has been thought to be absent from the human population. It is now becoming clear that XMRV has transmitted to humans by a process of zoonosis, presumably from mice, and appears to be associated with a variety of diseases not previously associated with viral infection.

1. We will establish quantitative PCR assays and serology assays including enzyme linked immunosorbant assays (ELISA) to detect and quantify XMRV. Importantly, assays used to detect related murine leukaemia viruses in the lab are expected to be suitable.

2. We will use these assays to measure XMRV load in chronic fatigue patient samples as well as, well but XMRV infected control samples, with a view to establishing whether viral load relates to disease, episodes of illness and/or severity.

3. The receptor for XMRV has been identified. We will seek human polymorphism in the xenotropic receptor and assess which human cells express it. We will also establish which cells in vivo in blood express the receptor and which cells are infected with XMRV by quantitative PCR on sorted subsets of B and T cells from XMRV infected individuals.

This project proposes to address some of the most important questions surrounding the recently described XMRV infection of humans and to seek a therapeutic strategy for XMRV treatment. We expect it to be a competitive project and the experiments performed are likely to be influenced by ongoing studies published as we go. We expect that the candidate will be fully trained in modern techniques of molecular virology during the course of this project.

TO APPLY Send THREE COPIES of your CV (including full contact details of two academic referees) a personal statement and an indication of your top two preferences, on a separate page, from the list of projects below to:

Isabel Lubeiro, Division of Infection & Immunity, Windeyer Building, 46 Cleveland Street, London W1T 4JF.
CLOSING DATE: 23 NOVEMBER 2009

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Media

From Dr Marc-Alexander Fluks via Co-Cure

Source: Irish Medical Times
Date: October 29, 2009
Author: Garrett FitzGerald
URL: http://www.imt.ie/opinion/2009/10/retrovirus_may_shed_light_on_m.html

Retrovirus may shed light on mystery of chronic fatigue

Back in the news big-time is Chronic Fatigue Syndrome. A recent paper in Science reports infection with a gammaretrovirus (XMRV) in 67 per cent of cases. The virus has been detected from blood and saliva in long-term sufferers.

Is it time to apologise to all the patients who were diagnosed as being somewhat cracked? I recall one colleague referring to the condition as the Muirisheen Durkan syndrome: So, goodbye Muirisheen Durkan I’m sick and tired of workin’!

For some unknown reason, I was sent many patients with the syndrome from all over the country. I was almost always impressed by the genuine nature of the symptoms, having no doubt that there just had to be something other than psychological reasons underneath.

I could do nothing for them

I listened (often the consultation lasted more than an hour) and in most instances after investigation told the patients that they were probably suffering from CFS/ME. I told them I could do nothing for them in terms of cure or alleviation. The only contribution I made was to warn them about the quacks which they (understandably) were attending or about to attend.

One patient was attending a great man in London, who claimed he was a physician to the Queen (lucky ol’ Queen), who kept admitting the patient to private hospitals over there for infusions of vitamins and Lord knows what else.

There was no improvement, surprisingly, in a well-nourished, fruit- eating young female whose gums were not bleeding onto the tablecloth. He would tell her that she hadn’t had enough courses of the infusions just yet, to stick with them. The patient had sold her house and was in the process of selling her car to pay the fees for this Hippocratic artiste.

Money-mad mountebanks

My intervention did nothing for the symptoms, but the patient got to hold on to her car. Many fell into the clutches of money-mad mountebanks, chancers, crystal-ball gazers and three-card-trick merchants. Regrettably, most of these were practicing medical doctors.

Some patients who had previously been leading a fully active and productive life were reduced to being little better than bed-ridden. The Royal College of Psychiatrists classified the condition as (partly) a psychiatric illness about 20 years ago and recommended courses of psychotherapy.

In earlier papers, there was some response to the sessions, most patients saying that they were a little better.

Some of my patients were depressed. Their symptoms sometimes responded to SSRIs, but they were left with their original degree of fatigue unchanged. Some patients seemed to remit spontaneously after anything from two to 20 years after the onset of the condition.

Accepted the diagnoses

A rare patient improved substantially with psychiatrist-prescribed Prozac in doses exceeding 80mg/day. Most did not improve. In fairness, both the Departments of Health and Social Welfare accepted the diagnoses of ME/Post-viral Syndrome/CFS as grounds for awarding disability benefits.

Specialists in Internal Medicine generally recommended a program which included increasing amounts of physical exercise. My own experience was that almost none of the patients could walk more than the length of themselves without ‘paying’ for it – having to recover in bed for two or three days.

The ME patients’ support group lobbied well for their members, but were despondent about the future. Many patients felt ridiculed (by the attitude of some professionals) and concealed the diagnosis. Many had by then lost their livelihoods and their own self-respect and self-worth.

One swallow does not a summer make. Before deciding that the retrovirus is actually causative, we await the outcome of further studies. If these are confirmatory, we wait for the results of trials of anti-retroviral therapy. As always, the thinking doctor will be cautious.

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From Dr John Greensmith via Co-Cure

Letter link:

http://www.bexhillobserver.net/letters-to-the-editor/Your-letters–October-23.5761548.jp 

(Scroll down long way, 18 of 20 letters to “Beware Study”)

Title: Beware Study, Letters, Bexhill-on-Sea Observer, 23 October 2009

Text:

Further to the recent article about a research study carried out in America that suggests a link between a retrovirus and ME (Does a virus cause ME?, Bexhill Observer, 14 October 2009), after consulting with our medical advisers people with the illness should be aware that, while very interesting and encouraging, these findings do need to be replicated in other laboratories.

This is not the first time that a retrovirus has been suggested to play a major part in ME, and before it was sadly found to be a false dawn.

We also need to be aware that, even if an association is confirmed we don’t yet know if it is a cause or a consequence  of ME. It would be premature to think about tests and treatments until we know very much more.

On the other hand, this finding will encourage more biomedical research that will increase our understanding of ME. The message from our advisers is that although this is a very interesting advance, we should not get too excited about it until we know more.

There is much that can be done to help those with ME, as a survey run by our charity recently in the area shows.

For more information call 01273 674828 or see www.measussex.org.uk 

Colin Barton
Chairman
Sussex ME/CFS Society

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CFSAC meeting Days One and Two

Videocasts of the entire proceedings will be available shortly from the NIH wesbite. I will post the links for these once these are online (RealPlayer required): http://videocast.nih.gov/PastEvents.asp

Dr David Bell’s presentation PowerPoint Slides can be viewed here:

http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

 

YouTubes

Clips of Dr Dan Peterson’s presentation and Annette Whittemore: http://www.youtube.com/user/Khalyal

Also on this channel plus some patient testimonies: http://www.youtube.com/user/luminescentfeeling

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Whittemore Peterson Website Q & A

http://www.wpinstitute.org/xmrv/xmrv_qa.html

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CFIDS Association of America

Website: http://www.cfids.org/ 

On Facebook: http://www.facebook.com/CFIDSAssn

Facebook Notes page (includes notes on CFSAC meeting):

http://www.facebook.com/CFIDSAssn#/CFIDSAssn?v=app_2347471856

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Patient community websites, blogs and forums

Cort Johnson’s website: http://aboutmecfs.org/Conf/IACFSME09WPI.aspx

The IACFS/ME Conference II: the Hit of the Conference
The Whittemore-Peterson Neuro-Immune Institute

Reno, Nevada: March 12-16, 2009

Forums: http://forums.aboutmecfs.org/index.php

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The Definition Petition

Petition webpage: http://CFSdefinitionpetition.notlong.com
i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com

Action for M.E. and Facebook; CISSD Final Report finally published

Action for M.E. and Facebook; CISSD Final Report finally published

WordPress Shortlink: http://wp.me/p5foE-2gi

Action for M.E. maintains a Facebook site at: http://www.facebook.com/actionforme

Over the past few weeks, questions and criticism around Action for M.E.’s governance, the way in which it relates to its membership, its policies and operation and its relationship with government have been raised by various users on its Facebook “Wall”.

Action for M.E. has chosen not to respond to these questions individually, on the Wall, itself, but by issuing a set of responses in a PDF document. The first document was this one: Facebook responses 20.10.09

A second, updated, set of responses was issued yesterday. It’s not clear whether these responses have been compiled by Action for M.E.’s new Policy Manager or by another member of staff, as the document is unsigned, but it’s interesting to see how the organisation has fielded these questions and concerns.

[To clarify - none of the questions for which responses were provided had been raised by me. I prefer to liaise directly with organisations for information, documents or for policy and position statements or, where applicable, obtain information via the Freedom of Information Act.]

Action for M.E. is becoming rather discomforted that its Facebook site is being used by some as a vehicle for raising political issues but you cannot take the politics out of ME. Users are already asking how the organisation intends to define “political”.

Those of us who were members, in 2003, of the joint charities’ message board “MEssage-UK” will recall how rapidly first Action for M.E., then AYME pulled out of this venture when faced with too many awkward questions; how the message board was then set for pre-moderation by the ME Association; how the moderator, Tony Britton, vetoed posts of a “political nature” without ever setting out how he was going to define what came under the heading of “political” and what did not; how the archives were sifted through for “contentious” messages by senior ME Association staff and then quietly excised without the authors being informed; how the board was closed down suddenly just days before the critical December 03 AGM in which Dr Shepherd was standing as a candidate in the Trustee elections…

When will our patient organisations learn that if they are going to place themselves on public platforms they first need to develop policies for the fielding of questions?

This latest set of responses can be opened in PDF format here:

PDF file: ONGOING FB Q and A document. 29.10.09

Answers to questions raised on the Action for M.E. facebook page, October 2009. Updated

or from Action for M.E’s website, here: http://tinyurl.com/ongoingFB-responses291009

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One of the responses is for a question raised (note, not by me) around the CISSD Project, for which Action for M.E. had acted as principal administrators throughout the project’s life (2003 to 2007).

In response to this question, on Page 23:

Question: “What was your involvement in the CISSD project Conceptual Issues in Somatoform and Similar Disorders for which you received a grant of 67k and why was this project kept so secretive from your members? Only information about it was released when freedom of information act requests were made that pushed you in to a corner where you had to confirm you were involved in it. Was this CISSD project set up with the purpose as suggested by other sources with the intent to look at changing the ME/CFS ICD-10 coding* to that of a Somatoform disorder?”

Action for M.E prefaces its reply with, “As a charity, Action for M.E. is not obliged to answer questions under the Freedom of Information Act but provides information of its free will, as resources allow.”

I should like to clarify that the Freedom of Information requests submitted by me in relation to the CISSD Project had been submitted to the Institute of Psychiatry. Information resulting out of these requests under the FOIA is available here: http://meagenda.wordpress.com/dsm-v-directory/information-obtained-under-foi-act/

One of my requests to the Institute of Psychiatry had been for a copy of the December 2007 “CISSD Final Report” from Dr Richard Sykes to Action for M.E. I had suggested to the Institute of Psychiatry’s Legal Compliance Office that the report ought to be provided with a erratum note, by Dr Sykes, addressing a number of errors he had made in the document that had come to light in June 09, when an unauthorised copy of the text had been placed in the public domain.

Unfortunately, what the Institute of Psychiatry were provided with by Dr Sykes, in order to fulfil the request, is evidently an earlier draft of the December 2007 text. It is missing the Contents page, and there are other disparities between the text that I was provided with and the Final version. No erratum note had been attached, either.

However, as part of its response to the Facebook question, Action for M.E. has now elected to publish two files. The first is a copy of the December 2007 CISSD “Final Report” to Action for M.E., the second, a copy of the “Co-ordinator’s Report”, with a covering letter and summary.

Action for M.E. has finally put these documents in the public domain!

Open PDF files here:

CISSD project report 1

The CISSD Project and CFS/ME Report on the CISSD Project for Action for ME 

Conceptual Issues in Somatoform and Similar Disorders

Report to be read in conjunction with Co-ordinator’s Final Report

Richard Sykes December 2007

CISSD project report 2

Covering letter

The CISSD Project 2003-2007

(Conceptual Issues in Somatoform and Similar Disorders)

Summary

FINAL REPORT OF CO-ORDINATOR   Richard Sykes PhD, CQSW

or from Action for M.E’s website, here:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf
http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%202.pdf

 

In August, Action for M.E. had published an article titled “Classification conundrum” on pages 16 and 17 of Issue 69 of its membership magazine, InterAction.

You can read a copy of the article here, in an ME agenda posting dated 25 August 2009:

“Action for M.E. stuffs the elephant back into the cupboard”

Note that although the Project had been initiated by Dr Richard Sykes, Dr Sykes does not appear to have contributed to this article – basically an apologia piece authored by Dr Derek Pheby.

In fact, Dr Sykes and his role as instigator and co-ordinator of the Project is not mentioned in the article at all. Nor is the Project’s source of funding – the charitable Trust run by Dr Sykes’ brother, Sir Hugh Sykes, a non-executive director of A4e, the largest European provider of Welfare to Work programmes. 

The December 2007 “Final Report” document has historical significance.  It also contains material (including an entire Appendix) which was omitted from the “CISSD Summary Report” that the ME Association published in June, this year, having negotiated with Dr Sykes for an article. (But having trumped Action for M.E., the MEA has made no comment whatsoever on the implications of the CISSD Project nor provided its membership with an analysis of the various papers and documents that came out of it.  Nor has the MEA made any comment or published any information on the progress of the ICD-10 and DSM revision processes for which the CISSD Project was initiated and has fed into.)

The document sets out Dr Sykes’ views, opinions and perceptions (and misperceptions) that had not previously been publicly available. It would have been appropriate for Action for M.E. to have negotiated with Dr Sykes for this document to have been published in 2007.  Instead, it kept the lid on this project –  a project that had been chaired by Professors Michael Sharpe and Kurt Kroenke and had involved many influential, international researchers and clinicians from the field of liaison psychiatry and psychosomatics – several of whom are now directly involved in the revision of the American Psychiatric Association’s DSM-IV.

In August, I called publicly on Action for M.E. to publish a copy of the CISSD “Final Report” on its website and to preface it with an erratum note addressing both the errors of coding within “Appendix B” of the document and also Dr Sykes’ misconception that “Chronic fatigue syndrome” does not appear in ICD-10.

Chronic fatigue syndrome is listed in the International Statistical Classification of Diseases and Related Health Problems: 10th Revision Version for 2006, Volume 3, the Alphabetical Index (ICD-10 Volume 3).

For the entry in question, see page 528, top right hand column:

http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3

Since no erratum note has been published with these documents please be aware that where Dr Sykes has written “G33.3″ and “G33.4″ on Pages 12 and 13 of document:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf

this should read “G93.3″ and “G93.4″.

Why has Action for M.E. published these documents without negotiating with Dr Sykes for an Erratum?

Why did Action for M.E. not publish these documents in August to accompany the article in InterAction?

 

*There is no coding for “ME/CFS” in ICD-10. 
Postviral fatigue syndrome is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
(Benign) myalgic encephalomyelitis is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index under G93.3.

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Text version of December 2007 CISSD “Final Report” here: CISSD Final Report to AfME 2007

Text version of December 2007 CISSD “Co-ordinator’s Report” here: CISSD PROJECT Coordinators Final Report

June 2009 Summary Report on CISSD as published by the ME Association

The Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed was published in the June issue of the Journal of Psychosomatic Research:

Free access to both text and PDF versions of this Editorial at: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD-11 Revision Google site:

https://sites.google.com/site/icd11revision/
https://sites.google.com/site/icd11revision/home/documents

For information around the DSM and ICD revision processes see DSM-V and ICD-11 Directory page: http://meagenda.wordpress.com/dsm-v-directory/

XMRV Retrovirus: CFSAC meeting Day Two

XMRV   Retrovirus   Whittemore Peterson Institute   Science   Mikovits   Chronic Fatigue Syndrome

XMRV Media Round up 18    WordPress Shortlink: http://wp.me/p5foE-2fR

Click here for all previous XMRV Media Round ups: http://meagenda.wordpress.com/category/xmrv/

 

XMRV Retrovirus: CFSAC meeting Day Two

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

Wanda K. Jones, DrPH is the CFSAC Designated Federal Official Deputy Assistant Secretary for Health – Women’s Health. For more information, visit http://www.hhs.gov/advcomcfs

For those who won’t be attending Day Two of the CFSAC meeting, today, Friday 30th October, the meeting is being videocast. Time displayed on the NIH site is Eastern Time, Washington DC Local. UK is currently 4 hours ahead of Washington DC  – so 9:00 a.m. Washington DC is 13:00 hours UK time.

If you’re not able to catch all of today’s meeting or missed parts of yesterday’s, videocasts of the entire proceedings will be available shortly from the NIH wesbite ( http://videocast.nih.gov/PastEvents.asp ). I will post the links once these are online. 

The CFCAS meeting will begin to stream live from the meeting room a few minutes before 1.00 p.m. UK time, with the audio off.  Microphones are turned on just before the meeting is called to order – so don’t think you haven’t got sound. There are simultaneous subtitles.  Today’s meeting is scheduled to adjourn at 4.00 p.m. Washington time (8.00 p.m. UK time). To watch the full day’s proceedings go to this link and scroll down to:

http://videocast.nih.gov/    RealPlayer required

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) – Day 2

Day 2 Friday 30th October   9:00 a.m. to 4:00 p.m.

 

Agendas for Day One and Day Two are here:   AGENDA

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html  

Yesterday’s meeting included presentations by Dr Dan Peterson, Dr John Coffin (co-author of the Science “Perspective” article) and Dr David Bell, who spoke on MSpB (FII).

Dr Bell’s PowerPoint Slides can be viewed here:

http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt 

 

YouTube

Clips of Dr Dan Peterson and Annette Whittemore:  http://www.youtube.com/user/Khalyal

7 uploads so far

Also here with some patient testimonies:

http://www.youtube.com/user/luminescentfeeling#p/u/2/80yKflt0tcA

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Whittemore Peterson Website Q & A

http://www.wpinstitute.org/xmrv/xmrv_qa.html

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Kelly reports via Co-Cure  29 October 2009

“An investigative journalism site in Atlanta just posted the following article about the CDC and Reeves.”

Atlanta unfiltered

http://www.atlantaunfiltered.com/2009/10/28/advocates-where-was-cdc-for-milestone-in-chronic-fatigue-syndrome-research/

Advocates: Where was CDC for milestone in chronic fatigue syndrome research?

October 28, 2009 -

Looks like the CDC’s chronic fatigue syndrome research group, led by Dr. William C. Reeves, may have some ‘splaining to do today in Washington. A possible research breakthrough — the discovery of a correlation between CFS and a retrovirus related to the AIDS virus — has fired up the medical community in recent weeks. “This is going to create an avalanche of subsequent studies,” Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month. But will the Centers for Disease Control and Prevention play a role in that research? It hasn’t so far.

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Patient community websites, blogs, commentaries

Cort Johnson’s Phoenix Rising website

Resources, Blog and Forums

http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

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Hillary Johnson, author of Osler’s Web

http://www.oslersweb.com/blog.htm?post=641747

Inside the Labyrinth
BILL REEVES: THE DECIDER
October 24, 2009

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Peggy Munson

“First, Do No Pharma”

http://peggymunson.blogspot.com/

Peggy Munson
Saturday, October 17, 2009

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CFS Patient Advocate

http://cfspatientadvocate.blogspot.com/2009/10/xmrv.html

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Dr Marc-Alexander reports via Co-Cure 

Source: NCBI PubMed
Date: 27 oktober 2009
URL: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
Topic: XMRV
Ref: The list below illustrates that so far, just 16 papers have been published on the XMRV.

XMRV papers published up to october 27, 2009

Hohn O, Krause H, Barbarotto P, Niederstadt L, Beimforde N, Denner J, Miller K, Kurth R, Bannert N.
Lack of evidence for xenotropic murine leukemia virus-related virus (XMRV) in German prostate cancer patients.
Retrovirology. 2009 Oct 16;6(1):92.

Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA.
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.
Science. 2009 Oct 8.

Yan Y, Liu Q, Kozak CA.
Six host range variants of the xenotropic/polytropic gammaretroviruses define determinants for entry in the XPR1 cell surface receptor.
Retrovirology. 2009 Oct 7;6(1):87.

Schlaberg R, Choe DJ, Brown KR, Thaker HM, Singh IR.
XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors.
Natl Acad Sci U S A. 2009 Sep 22;106(38):16351-6.

Stang A, Petrasch-Parwez E, Brandt S, Dermietzel R, Meyer HE, Stuhler K, Liffers ST, Uberla K, Grunwald T.
Unintended spread of a biosafety level 2 recombinant retrovirus.
Retrovirology. 2009 Sep 22;6:86.

Hong S, Klein EA, Das Gupta J, Hanke K, Weight CJ, Nguyen C, Gaughan C, Kim KA, Bannert N, Kirchhoff F, Munch J, Silverman RH.
Fibrils of prostatic acid phosphatase fragments boost infections with XMRV (xenotropic murine leukemia virus related virus), a human retrovirus associated with prostate cancer.
J Virol. 2009 Jul;83(14):6995-7003.

Knouf EC, Metzger MJ, Mitchell PS, Arroyo JD, Chevillet JR, Tewari M,
Multiple integrated copies and high-level production of the human retrovirus XMRV (xenotropic murine leukemia virus-related virus) from 22Rv1 prostate carcinoma cells.
J Virol. 2009 Jul;83(14):7353-6.

Bisbal C, Salehzada T.
RNase L, a crucial mediator of innate immunity and other cell functions [French].
Med Sci (Paris). 2008 Oct;24(10):859-64.

Fischer N,  Hellwinkel O, Schulz C, Chun FK, Huland H, Aepfelbacher M, Schlomm T.
Prevalence of human gammaretrovirus XMRV in sporadic prostate cancer.
J Clin Virol. 2008 Nov;43(3):277-83.

Dong B, Silverman RH, Kandel ES.
A natural human retrovirus efficiently complements vectors based on murine leukemia virus.
PLoS One. 2008 Sep 4;3(9):e3144.

Kim S, Kim N, Dong B, Boren D, Lee SA, Das Gupta J, Gaughan C, Klein EA, Lee C, Silverman RH, Chow SA.
Integration site preference of xenotropic murine leukemia virus- related virus, a new human retrovirus associated with prostate cancer.
J Virol. 2008 Oct;82(20):9964-77.

Summers K, Crespi B.
Molecular evolution of the prostate cancer susceptibility locus RNASEL: evidence for positive selection.
Infect Genet Evol. 2008 May;8(3):297-301.

McCormick AL, Brown RH Jr, Cudkowicz ME, Al-Chalabi A, Garson JA.
Quantification of reverse transcriptase in ALS and elimination of a novel retroviral candidate.
Neurology. 2008 Jan 22;70(4):278-83.

Silverman RH.
A scientific journey through the 2-5A/RNase L system.
Cytokine Growth Factor Rev. 2007 Oct-Dec;18(5-6):381-8.

Dong B, Kim S, Hong S, Das Gupta J, Malathi K, Klein EA, Ganem D, Derisi JL, Chow SA, Silverman RH.
An infectious retrovirus susceptible to an IFN antiviral pathway from human prostate tumors.
 Natl Acad Sci U S A. 2007 Jan 30;104(5):1655-60.

Urisman A,  Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, Silverman RH, DeRisi JL.
Identification of a novel Gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant.
PLoS Pathog. 2006 Mar;2(3):e25. Epub 2006 Mar 31.

(c) 2009 NCBI PubMed

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The Definition Petition

Petition webpage: http://CFSdefinitionpetition.notlong.com
i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com

XMRV Retrovirus: What’s coming up?

 @ 3.07 pm  UK time  Dr. John Coffin about to start

(Published Online October 8, 2009, Science DOI: 10.1126/science.1181349, Science Express Index

Perspectives, Submitted on July 14, 2009, Accepted on August 31, 2009

A New Virus for Old Diseases? John M. Coffin 1* and Jonathan P. Stoye 2)

Update @  2.26 pm  UK time  Dan Peterson XMRV presentation about to start

Perspective on XMRV and Human Retroviruses  Dr. John Coffin Tufts University Boston, Massachusetts scheduled to follow on from Dan Peterson’s presentation.

Update @ 1.oo pm  UK time

CFCAS meeting about to start and is already live streaming from meeting room with simultaneous subtitles click here:

http://videocast.nih.gov/   RealPlayer required

 

Click here for   AGENDA

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html  

——————————————————————–

XMRV   Retrovirus   Whittemore Peterson Institute   Science   Mikovits   Chronic Fatigue Syndrome

XMRV Retrovirus: What’s coming up?

WordPress Shortlink: http://wp.me/p5foE-2fa

Media

News4

http://www.krnv.com/Global/story.asp?S=11402586

Reno scientists prepare to address federal health officials

Victoria Campbell  |  News 4  |  28 October 2008

Just weeks after a medical breakthrough that pinpointed a virus that may be linked to Chronic Fatigue Syndrome, the doctor who helped lead the medical team is preparing to present his findings to an advisory committee from the U.S. Department of Health and Human Services… Read full article here

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CFCAS meeting

For those who won’t be attending the CFSAC meeting, on Thursday 29th and Friday 30th October, the meeting is being videocast at the following links:

UK is currently 4 hours time difference with Washington DC  – so 9:00 a.m. Washington DC is 13:00 hours UK time.

Day 1 Thursday 29th October   9:00 a.m. to 5:00 p.m.

http://videocast.nih.gov/summary.asp?live=7908

Dr Daniel Peterson’s presentation is scheduled for 10:15 a.m.

Dr David Bell’s presentation is scheduled for 3:30 p.m.

Dr Bell’s PowerPoint Slides can be viewed here:

http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

 

Day 2 Friday 30th October   9:00 a.m. to 4:00 p.m.

http://videocast.nih.gov/summary.asp?live=7909

The number of computers logging on and watching are going to be counted by the NIH. For those who aren’t able to watch live, archived video will be available at:

http://videocast.nih.gov/PastEvents.asp

Click here for   AGENDA

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html  

CFSAC Agenda – October 29-30, 2009

U.S. Department of Health and Human Services

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Video of University of the Pacific Public Presentation on the XMRV/CFS discoveries

On 26 October, Dr Judy Mikovits gave a Public Presentation on the XMRV/CFS discoveries at the University of the Pacific. It’s understood that a videocast of the presentation (which is said to have included new material not yet reported on) will shortly be available.  I will update once the video has been released.

News Release here:

15 October 2008

http://web.pacific.edu/x31783.xml

Fatigue Syndrome Researchers to Speak on Campus

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The Definition Petition

Petition webpage: http://CFSdefinitionpetition.notlong.com
i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com

ME in Parliament: Written Answers: 26 June, 1 July, 7 July 09

ME in Parliament: Written Answers: 26 June, 1 July, 7 July 09

WordPress Shortlink: http://wp.me/p5foE-2eY

As circulated by Dr Marc-Alexander Fluks

Source: UK House of Commons
Date: June 26, 2009
URL: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090626/text/90626w0012.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Business, Innovation and Skills – Chronic Fatigue Syndrome

Lynne Jones

To ask the Minister of State, Department for Business, Innovation and Skills with reference to the answer to the right hon. Member for Horsham of 21 April 2008, Official Report, column 1785W, on chronic fatigue syndrome: research, when the Medical Research Council plans to set up a panel of experts from different disciplines to look at the subtypes and causes of myalgic encephalomyelitis/chronic fatigue syndrome. [281820]

Mr. Lammy

The Medical Research Council (MRC) set up in 2008 a panel of experts from different disciplines to look more closely at chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The group is reviewing the current research and will identify additional opportunities with the aim of stimulating further research into CFS/ME, in particular focusing on the causes of the condition. The MRC hopes that this will encourage new research towards understanding the aetiology and subtypes of CFS/ME and lead to an advancement of knowledge in this field and the development of new therapeutic approaches.

(c) 2009 Parliamentary copyright

——————

Source: UK House of Commons
Date: July 1, 2009
URL: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090701/text/90701w0021.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome

Mr. Greg Knight

To ask the Secretary of State for Health (1) what recent assessment he has made of his Department’s guidelines for the treatment of myalgic encephalopathy compared to international best practice; [283105] (2) what recent representations he has received on the revision of treatment guidelines for myalgic encephalopathy issued to trusts by his Department. [283106]

Ann Keen

The Department has not issued guidelines for the treatment of myalgic encephalopathy. Guidelines for the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis were published in 2007 by the National Institute for Health and Clinical Excellence. They would have responsibility for revising this guidance.

(c) 2009 Parliamentary copyright

——————

Source: UK House of Commons
Date: July 7, 2009
URL: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090707/text/90707w0031.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome

Lynne Jones

To ask the Minister of State, Department for Business, Innovation and Skills pursuant to the answer of 26 June 2009, Official Report, columns 1198-99W, on chronic fatigue syndrome, who the members of the panel of experts are; and how often it has (a) met and (b) reported on its findings. [283743]

Mr. Lammy

The membership of the expert group set up by the Medical Research Council is as follows:

Professor Jill Belch (Chair) – University of Dundee,
Professor Stephen Holgate – University of Southampton,
Dr. Esther Crawley – University of Bristol,
Professor Philip Cowen – University of Oxford,
Professor Malcolm Jackson – University of Liverpool,
Dr. Jonathan Kerr – St George’s University of London,
Professor Ian Kimber – University of Manchester,
Professor Hugh Perry – University of Southampton,
Dr. Derek Pheby – National CFS/ME Observatory,
Professor Anthony Pinching – Pennisula Medical School,
Dr. Charles Shepherd – ME Association,
Sir Peter Spencer – Action for ME,
Professor Peter White – Bart’s and the London School of Medicine and Dentistry.

The Expert Group has met twice, in December 2008 and March 2009. The notes of those meetings will be published  on the MRC website shortly, and will then be accessible to the public.

(c) 2009 Parliamentary copyright

————-

Notes:

1] For Minutes of the December 08 meeting of the MRC “CFS/ME Expert Group” see previous posting: MRC Two day Research Workshop 19 and 20 November 2009: http://wp.me/p5foE-2bS. 

Minutes for the March 09  meeting have not yet been published.

2] The MRC “CFS/ME Expert Group” is chaired by Professor Stephen Holgate.

3] No Agenda or list of partipants has been issued for the two day MRC “CFS/ME Expert Group” scheduled for 19 – 20 November. I have submitted a request to the MRC for information under the FOIA for a copy of the Agenda, the list of participants and for clarification of whether the MRC “CFS/ME Expert Group” anticipates holding further meetings beyond the November workshop.

4] The NICE Guideline for CFS/ME (CG 53) is currently scheduled for review in August 2010.

XMRV and ME/CFS: The MEA writes to the Chief Medical Officer

XMRV and ME/CFS: The MEA writes to the Chief Medical Officer calling for statement from National Blood Service in relation to blood donation

WordPress Shortlink: http://wp.me/p5foE-2eI

From the ME Association, 27 October 2009

A copy of our email to the Chief Medical Officer at the Department of Health, which was sent today, can be read in the news section of the MEA website:

http://www.meassociation.org.uk/content/view/1059/161

XMRV and ME/CFS: The MEA writes to the Chief Medical Officer

The ME Association has today written to Sir Liam Donaldson, Chief Medical Officer at the Department of Health, about various issues relating to XMRV research and ME/CFS.

Dear Sir Liam

Implications of research findings concerning XMRV and ME/CFS

I assume you are aware of the new research findings from America, published in Science on 8 October 2009, which relate to the retrovirus known as XMRV (xenotropic murine leukaemia virus) and ME/CFS.

The ME Association has produced some information which summarises the research findings and the practical implications they may have in relation to disease management. Our position statement acknowledges that many uncertainties remain and that further research studies are needed before anyone can conclude that this virus plays a significant role in either the cause, assessment or management of ME/CFS. We are in contact with several research groups (UK and overseas) who have experience in retroviral research and it is encouraging to note that there is a strong desire in the research community to take this forward as a matter of urgency. I can supply further information if necessary. The ME Association summary, which also contains a link to the XMRV research paper, can be found on our website at: www.meassociation.org.uk/content/view/1051/213

I would also like to draw your attention to two statements that have been issued by the National Cancer Institute in America in relation to XMRV. The first statement, which refers to the research findings, can be found at: http://www.cancer.gov/newscenter/pressreleases/CFSxmrv  

The second statement, which refers to transmission and blood donation, can be found at: http://www.cfids.org/temp/xmrv-guidelines-nci.asp  

The NCI interim guidelines relating to blood donation in the second statement (>> point 2) are very similar to those contained in the MEA summary, and the issue of XMRV transmission is something that obviously needs to be brought to the attention of the National Blood Service and Health Protection Agency if not already done so. A clear statement from the National Blood Service in relation to blood donation from people with ME/CFS would obviously be very helpful to people at this time.

If the Department of Health, or the National Blood Service, would like to add anything to the MEA information, which is being updated at regular intervals, we would be happy to include it.

Yours sincerely

Dr Charles Shepherd

Honorary Medical Adviser, The ME Association

7 Apollo Office Court
Radclive Road
Gawcott
Bucks MK18 4DF

Formerly a member of the CMO Working Group on ME/CFS

Copies:

Dr Des Turner MP – Chair of the All Party Parliamentary Group on ME

Countess of Mar – Chair of Forward ME Group

Dr Jonathan Stoye – National Institute for Medical Research

Professor Stephen Holgate – Chair of MRC Expert Group on ME/CFS Research

Professor Tony Pinching – Peninsular Medical School

Dr Nigel Speight resigns from children and young person’s organisation AYME

Dr Nigel Speight resigns from the children and young person’s organisation AYME

For many years, paediatric specialist, Dr Nigel Speight, has been a champion of families with a child or young person with ME or where ME is suspected. 

He has advocated for families facing wrongful accusation of MSpB (FII), where child protection orders have been instigated or threatened following disagreements between the family and the child’s medical professionals over the management of the condition, where medical professionals have been unwilling to make a diagnosis of ME and where social services have become involved in the case when a child or young person has been unable to regularly attend mainstream school due to ill health.

Dr Speight recently announced his resignation as a Patron to the children and young person’s patient organisation, AYME [Association of Young People with ME]  http://www.ayme.org.uk/.

AYME’s Medical Advisor is Dr Esther Crawley, Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust. Dr Crawley had been a member of the NICE CFS/ME Guideline Development Group. 

Dr Speight, who is now retired from the NHS, has become a Medical Advisor to the 25% M.E. Group.

The following announcement was published in a recent 25% M.E. Group newsletter:

I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron. Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged. In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable. This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET. This compromise seems to have helped the psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME [Action for M.E.] who appear to be taking a similar position). In this controversy I feel more in sympathy with the rest of you. I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one. It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

With Best Wishes

Nigel Speight

Future of DLA: Health Secretary Andy Burnham speech, Benefits and Work updates

Update: New update from Benefits and Work added since this post was published see: “DLA saved – for some” at end of post.

DLA: Health Secretary Andy Burnham speech, Benefits and Work updates

WordPress Shortlink: http://wp.me/p5foE-2et

Guardian  |  Rachel Williams  |  Thursday 22 October 2009

http://www.guardian.co.uk/society/2009/oct/22/social-care-nhs-disability-allowance

Health secretary Andy Burnham: ‘Nobody receiving disability benefits will lose out’.

The health secretary, Andy Burnham, will today rule out a controversial plan to scrap disability benefit paid to 2.5 million younger people.

In a major speech on the future of social care, he will say he has decided not to use disability living allowance (DLA) to fund the new national care service.

But the abandonment of the idea, which would have saved £6bn, raises further questions about how the government will meet the spiralling bill for social care. Last night the Tories claimed there was a £4.6bn “black hole” in Labour’s flagship health plans… Read full article here

—————–

Benefits and Work  www.benefitsandwork.co.uk

From Steve Donnison  |  22 October 2009

A champion emerges as minister admits DLA threat

The last two weeks have finally removed any uncertainty about whether DLA is under threat, but they have also brought real cause for optimism.

Lord McKenzie of Luton, the parliamentary under secretary of state for work and pensions, was asked last week in a House of Lords debate which disability benefits the government are ‘considering integrating into the wider social care budget in England’.

Lord McKenzie replied:

“At this stage, we do not want to rule out any options and so are considering all disability benefits.”

Even when care minister Phil Hope’s claim that DLA is ‘not under threat’ was referred to and Lord McKenzie was specifically asked to rule out the using DLA as a source of funding for social care, his response was “no particular benefit is ruled out of consideration.”

So, whilst we can’t say why Phil Hope made his ‘be very happy’ statement, we can now say with certainty that it does not reflect the government’s stated policy. For more, see:

Senior minister confirms DLA is under threat

http://www.benefitsandwork.co.uk/news/latest-news/1115-senior-minister-confirms-dla-is-under-threat

But that same Lord’s debate also brought a real ray of hope in the form of a champion prepared to fight for DLA and AA.

Lord Ashley of Stoke warned the minister that “any attempt by the Government to withdraw these benefits, or any benefits at all, will be very strongly resisted by disabled people, by their organisations and by many Members of both Houses of Parliament.”

Lords warn attack on DLA and AA will be “very strongly resisted”

http://www.benefitsandwork.co.uk/news/latest-news/1116-lords-warn-attack-on-dla-and-aa-will-be-very-strongly-resisted

Lord Ashley – former MP Jack Ashley – is a formidable campaigner, with victories dating right back to the thalidomide campaign of the 1970s. It will not have brought any joy to ministers’ hearts to see Jack Ashley, and a number of other noble Lords, lining up against them. And it’s a tribute to the efforts of Benefits and Work campaigners that this issue has gone from being almost entirely unacknowledged – or dismissed as scaremongering – to being debated in the House of Lords in less than three months.

Elsewhere, the No 10 petition has perked up again, now reaching over 17,000 signatures. As few as another 1,000 signatures should see it getting into the top 10 petitions before the care consultation ends on November 13th. Do you know people who haven’t signed yet? Try and encourage them along to:

http://petitions.number10.gov.uk/AttendanceA/

Meanwhile, the Big Care debate website continues to be swamped by people protesting about the threat to disability benefits. From a feeble 130 posts when we began this campaign, there are now 2,219 responses on the Executive Summary page and 606 on Having Your Say. The total is far higher than that achieved by any similar government consultation and the responses are overwhelmingly hostile.

If you haven’t yet sent a response, please do so by visiting this link:

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Or emailing: careandsupport@dh.gsi.gov.uk

We’d like to close this newsletter with an email from one of our campaigners which we think is an inspiring example of spontaneous campaigning:

“Today I was in the Blackburn Shopping Centre on my Shopmobility scooter when I saw Mr. Jack Straw doing his shopping. It was too good an opportunity not to speak with him, so after a few swift manoeuvres I asked for one minute of his time. I told him that I had worked for the past 32 years in the NHS and had now been diagnosed with RA [rheumatoid arthritis] hence the scooter and that I have just been awarded DLA and what a difference it has and will make to myself and indeed others and to please not take it away…. He said “he wouldn’t” and gave me his card to write to him and of course I will follow it up with a letter.”

We’re not suggesting that gangs of claimants on Shopmobility scooters should roam our town centres hunting for MPs spending their expenses – pleasing though that image is – but if you’re able to, why not make an appointment to see your MP at their regular surgery and put your views across in person?

With an election looming, the fact that people are prepared to actually visit them in their offices will make a real impression, particularly on MPs with slender majorities.

Good luck,

Steve Donnison

Please feel free to forward or publish this email.

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS

Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

—————–

Benefits and Work  www.benefitsandwork.co.uk

From Steve Donnison  |  14 October 2009

Your chances of getting ESA – the secret’s out

14.10.09

Dear Subscriber,

We finally have statistics which tell us what proportion of claimants get an award of ESA and what proportion who don’t get an award subsequently win on appeal. We also know how many people are getting into the support group.

Overall, the figures are not good – but they’re also not as bad as many in the media and the welfare to work industry had been claiming. They aren’t even as bad as the DWP is now trying to make them out to be, as they crow about “stopping more people getting trapped on long-term sickness benefit”.

Read more about the real figures – the ones not mentioned in the dwp press release – in our members area article.

On the subject of bad figures, how would you feel about a £35,000 tax bill? That’s what one disabled claimant has been landed with after changing the employment status of her personal carers. We asked our resident barrister Holiday Whitehead what, if anything, this claimant did wrong.

Her response got us thinking that if you employ personal carers you may well have all sorts of employment issues you’d like an answer to. So, why not drop us an email at info@benefitsandwork.co.uk and we’ll publish (anonymously) a selection of your queries along with Holiday’s answers.

And, just to lighten the mood a little, we have some very happy emails from people who – with a bit of help from Benefits and Work – have won awards of benefits for themselves, their children or other family members.

Finally, a gentle reminder: if you haven’t signed the DLA/AA petition on the number 10 website please do pop along and do so at:

http://petitions.number10.gov.uk/AttendanceA/

There are over 15,000 signatures on it now, but more are still needed if it’s to strike fear into the hearts of vote hungry MPs. For those of you who also subscribe to the No More Benefits Cuts newsletter, there’ll be another one out next Tuesday.

Good luck,

Steve Donnison

£35,000 tax bill – could it happen to you?

http://www.benefitsandwork.co.uk/news/latest-news/1112-p35000-tax-bill-for-disabled-claimant

Last month a disabled grandmother received a tax bill for £35,000 for unpaid employers’ tax and national insurance in respect of her full-time carers.

I haven’t stopped grinning since

http://www.benefitsandwork.co.uk/news/latest-news/1113-i-havent-stopped-grinning-since

Awards of DLA for themselves and for relatives, successful appeals . . . more good news from our members.

MEMBERS ONLY

Not yet a member?
Find out how to join Benefits and Work and get instant access to all our downloadable claims and appeals guides, DWP materials, members news items and more.

www.benefitsandwork.co.uk/join-us

Your chances of getting ESA – the secret’s out
http://www.benefitsandwork.co.uk/news/members-only-news/1111-your-chances-of-getting-esa–the-secrets-out

The DWP have released statistics showing how many people have successfully claimed ESA. However, the figures may not be as bad as the DWP are trying to make them appear.

(c) 2009 Steve Donnison. All rights reserved.

—————–

Benefits and Work  www.benefitsandwork.co.uk

From Steve Donnison  |  27 October 2009

DLA saved – for some

It’s a start, but nowhere near enough.

Health secretary Andy Burnham has said that he has ‘heard the concerns and worries about disability living allowance’. As a result, he has announced that:

“I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

Good news indeed . . . for some . . . for the moment.

But definitely not for the one and a half million people who depend on AA.

Nor for the for the three quarters of a million people aged 65 and over who receive DLA.

Not even for the 400,000 DLA claimants currently aged between 60 and 64, many of whom will have reached the age of 65 by the time labour’s proposed National Care Service is introduced.

Because, of course, DLA is not just paid to people under 65. You have to make your claim before you are 65, but you can then go on claiming indefinitely if your needs do not change.

Unfortunately, many organisations who should know better seem to have forgotten that – perhaps just as the government hoped.

Because Mr Burnham made no secret about why he made this announcement: he wants to shut people up. He said in his speech, given at a conference in Harrogate on 22nd October and also published on the Big Care Debate website:

“One avenue I do want to close down, however, is the debate and controversy over Disability Living Allowance.”

In that ambition, he seems to have succeeded, at least so far as some disability charities are concerned.

Immediately following Burnham’s speech, Disability Alliance sent out a press release stating that:

“. . . the Disability Living Allowance (DLA) benefit will not be affected by Government plans to merge some benefits with social care funding . . . Andy Burnham’s announcement will reassure disabled people that DLA is safe – for now at least.”

The Disability Charities Consortium told the media:

“This represents a real victory for disabled people who felt very strongly that the DLA should be retained and made their collective voice heard on this issue. “

Macmillan Cancer Support also issued a press release saying that:

“Whilst we are pleased the Government has said Disability Living Allowance (DLA) will not be used to meet the shortfall in social care funding, we remain deeply concerned that Attendance Allowance (AA) is still under threat.”

But that isn’t what Andy Burnham said at all. He said DLA for under 65’s is not being considered.

This was echoed by Yvette Cooper, the DWP secretary of state who told a meeting of the All Party Parliamentary Group on ME on 21st October that DLA for people of ‘working age’ is not under review.

It was also made clear by Burnham that there will be no transitional protection of existing awards for current claimants. Instead, ‘an equivalent level of support’ will be provided by your local authority.

Burnham’s announcement seems to have had the desired effect, however – the ‘debate and controversy’ over DLA appears to be over as far as some disability charities are concerned. Yet, in a little over two weeks time the deadline for submissions on the green paper ends.

It’s vital that the case for saving DLA for all claimants is still made. Only now there is a real worry that not only have the disability charities relaxed, but also that Burnham will claim that because 3,000 submissions to the Big Care Debate were made before his announcement that DLA for under 65s is safe, they should mostly be discounted.

If you don’t want the government to get away with closing down ‘the debate and controversy over Disability Living Allowance’ there are things you can do.

Contact disability groups you have a connection with and warn them that they still need to respond to the green paper in relation to both DLA and AA.

Respond to the Care Green paper yourself, again if necessary, making it clear that you are aware that DLA for under 65s is not under consideration and giving your views on axing AA and DLA for people aged 65 and over.

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Email: careandsupport@dh.gsi.gov.uk

Rouse people to sign the No 10 petition, which is gathering real momentum again: it now has over 19,000 signatures and is at number 8 out of over four and a half thousand petitions on the site. Not bad going for a petition that has been running for less than two months.

http://petitions.number10.gov.uk/AttendanceA/

Tell your MP what you think or, better still, go and visit them and tell them face-to-face.

One final thought. The revelation that the government is considering slashing the income of 2.5 million older disabled claimants was made by Andy Burnham in a keynote speech last week.

The subject of that speech?

Outlawing ageism in the NHS.

Good luck,

Steve Donnison

Please feel free to forward or publish this article, which is also available online at: http://www.benefitsandwork.co.uk/news/latest-news/1118-dla-saved–for-some

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS
Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

(c) 2009 Steve Donnison. All rights reserved.

Interim XMRV Guidelines National Cancer Institute, testing and CFSAC meeting

Interim XMRV Guidelines National Cancer Institute, testing and CFSAC meeting videocasts Media Round up: 17

WordPress Shortlink: http://wp.me/p5foE-2eh

Find all previous Media Round ups, including patient organisation statements, archived under the XMRV Category tab.

Patient representation organisation statements

CFIDS Association of America

http://www.cfids.org/temp/xmrv-guidelines-nci.asp

Interim XMRV Guidelines from National Cancer Institute

(Following the Oct. 8 publication by Lombardi et al in Science linking CFS and xenotropic murine-related retrovirus (XMRV) (see page 1), the CFIDS Association of America requested guidance from the National Cancer Institute about XMRV for persons diagnosed with CFS, their loved ones and the general public. The following are interim guidelines excerpted from a letter received from NCI director Dr. John E. Niederhuber.)

Interim XMRV Guidelines from National Cancer Institute

We at the National Cancer Institute (NCI) have great interest in these initial research findings. At present, we agree that a critical issue to be addressed is whether the exciting recent results obtained using samples from the Nevada cohort can be reproduced in additional cohorts of CFS-afflicted individuals. The NCI is striving to develop tools so that the general prevalence of XMRV in the population can be ascertained, and the association of XMRV with disease can be examined.

In the meantime, it is very important to reiterate what we do not know at this point, specifically:

We do not know whether XMRV is a causative agent for CFS, prostate cancer, or any other disease. Even if a causal association can be established, it may be only one of many causes, and there may be other factors, genetic or environmental, that determine the outcome of infection. At the moment, there is no evidence of CFS transmission between family members, even though XMRV appears to be an infectious agent. Thus, it is unclear whether XMRV alone underlies CFS.

We do not know how XMRV is transmitted from individual to individual. Recent suggestions of sexual or salivary transmission are not based on direct evidence, and conclusions regarding transmission are not credible at this point. Given the frequent isolation of virus from white blood cells, blood-borne transmission is a real possibility, and, while we are not in a position to establish firm guidelines, prudence would dictate that potentially infected individuals refrain from blood donation at this time.

We do not know how many apparently healthy individuals are infected, and what the distribution of infection is within the U.S. and in the worldwide population. The National Cancer Institute is involved in coordinating a global effort to study these issues.

It is very important to keep in mind that there is no evidence for a new increasing or spreading XMRV infection. Further, no credible evidence exists for direct transmission of either CFS or prostate cancer.

John E. Niederhuber, M.D.
Director, National Cancer Institute
U.S. National Institutes of Health
Department of Health and Human Services
October 23, 2009

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Prohealth

http://www.prohealth.com/library/showarticle.cfm?libid=14963

Cooperative Diagnostics Offers Test for XMRV Virus – By Mail, “No Lab Visit or Doctor Approval Necessary”

October 26, 2009

Cooperative Diagnostics, LLC has announced the availability to the general public of a new diagnostic assay for Xenotropic Murine Leukemia-Related Virus (XMRV). For details, go to http://www.codiagnostics.com/XMRV/index2.php

Those interested in obtaining a blood sample collection kit (price $399) may complete an online form at the Cooperative Diagnostics site. According to the instructions:

• A sample collection kit will be sent to the address you submit within 2 to 3 business days.

• You place a drop of your blood on a filter paper that is provided and return the envelope to the lab, where the test will be completed.

• Within 5 to 7 business days after the lab receives the sample you will be sent an e-mail with the test results.

• The test results may be printed to show your physician.

Positioning the test as intended “to assist physicians in the diagnosis of ME/CFS and other disorders potentially caused by the virus, Cooperative Diagnostics cautions that it “is not intended to indicate the presence of absence of CFS or other X-associated neuro-immune diseases. Consultation with your physician is necessary to interpret the results.”  Read full piece here

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CFSAC meeting

From: “RESCIND”  via Co-Cure
26 October 26 2009

Log on and be counted!

Please distribute far and wide!

For those who won’t be attending the CFSAC meeting, be sure to tune in to the videocast of the CFSAC meeting on October 29th and 30th at the following links:

Day 1

http://videocast.nih.gov/summary.asp?live=7908

Day 2

http://videocast.nih.gov/summary.asp?live=7909

The number of computers logging on and watching will be counted by the NIH. Let’s make those figures count for something!

For those who can’t watch live, archived video will be available at:

http://videocast.nih.gov/PastEvents.asp

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Click for   AGENDA

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html  

CFSAC Agenda – October 29-30, 2009

U.S. Department of Health and Human Services

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The Definition Petition

Petition webpage: http://CFSdefinitionpetition.notlong.com
i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

We call on the Centers for Disease Control and Prevention (CDC) to stop using the “empirical” definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the “empirical” definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com

Lecture by Nancy Klimas MD: The New XMRV Virus and What it Means to Chronic Fatigue Syndrome Patients

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com

WordPress Shortlink for Media Round up: 15: http://wp.me/p5foE-2dr

Lectures and presentations

From Marly C. Silverman via Co-Cure
24 October 2009

Lecture by Nancy Klimas, M.D.: The New XMRV Virus and What it Means to Chronic Fatigue Syndrome Patients Media Round up: 15

The New XMRV Virus and What it Means to Chronic Fatigue Syndrome Patients

Join us in a special lecture by Nancy Klimas, M.D. for a discussion on exciting new research advances in chronic fatigue syndrome (CFS). Dr. Klimas is a professor of medicine, psychology, and microbiology and immunology at the University of Miami Miller School of Medicine and the Miami Veterans Affairs (VA) Medical Center.

Dr. Klimas directs the UM/VAMC Gulf War and Chronic Fatigue Syndrome Research Center, initiated with a National Institutes of Health (NIH) Center Award, and supported by VA and NIH funds. The center has focused on better understanding of the neuro-immune-endocrine interactions in CFS and Gulf War Illness (GWI), and their role in the pathogenesis of these complex disorders. She is the immediate past president of the International Association for Chronic Fatigue Syndrome (IACFS-ME), the organization of researchers and clinicians dedicated to furthering our knowledge of this disabling illness. Currently, she is a member of the congressional HHS Advisory Committee , and is a distinguished member of the Medical Advisory Board of P.A.N.D.O.R.A.

Date/Time: Saturday, November 7, 2009, 2-4pm

Location: University of Miami Miller School of Medicine, Rosenstiel Medical Science Building, 1600 NW 10th Avenue, 3rd floor auditorium, Miami, Florida.

Sponsored: By P.A.N.D.O.R.A. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy Inc, a 501 c 3 patient advocacy organization headquartered in Coral Gables, Florida, in partnership with CFSKnowledgecenter.com  and the local empowerment/support groups in South Florida.

Cost: Free, space is limited

RSVP: The auditorium holds 150 and to ensure refreshments and a “goodies bag” is held for you, RSVP today to Elizabeth Goldberg at egoldberg@med.miami.edu or 305-243-3492.

Parking: Park Plaza West Garage

Direction to Parking Garage:

From I-95, points north
Exit I-95 at SR 836 West, exit number 3-A. Take the NW 14th Street exit. Continue straight on NW 14th Street. Turn right onto NW 12th Avenue. Take a right onto NW 16th Street. Yield at the sign and take a right into the parking lot.

From I-95, points south and east
Exit I-95 at SR 836 West, exit number 3-A (left exit). Exit SR 836 at NW 12th Avenue and turn right onto NW 12th Avenue. Turn right onto NW 16th Street and continue on NW 16th Street. Yield at the sign and take a right into the parking lot.

From SR 836, the Airport, and points west
Take SR 836 East and exit at NW 17th Avenue, North. Pay $1.25 toll and follow the Hospitals and Civic Center Exit. Follow the signs and curve to the left. Turn right towards North, NW 17th Avenue. Stay in the right lane and bear to the right. Yield at the sign and merge into the far left lane. Turn left onto NW 13th Terrace; continue straight onto NW 14th Street. Take left onto NW 12th Avenue. Turn right onto NW 16th Street and continue on NW 16th St. Yield at the sign and take a right into the parking lot.

Directions from Garage to Rosenstiel Medical Science Building: Exit the garage at the north end. Once on the ground floor, follow the sidewalk east on 16th Street (the same street at which you entered the garage). Rosenstiel Medical Science Building is approximately 50 yards on the right. Upon entering Rosenstiel Medical Science Building, inform the security guard that you are attending the CFS seminar. Take the elevator to the third floor and follow the signs to the auditorium.

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CFSAC (CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE) meeting October 29-30, 2009

10:15 a.m.   Presentation: XMRV Association with CFS   Dr. Daniel Peterson   Whittemore Peterson Institute

3:30 p.m.   CFS and FII/MBP   Dr. David Bell

In a post on 16 October

CFSAC Agenda Presentation: XMRV Association with CFS Dr D Peterson  WordPress Shortlink: http://wp.me/p5foE-2ba

I flagged up the forthcoming CFSAC (CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE) meeting.

For Supplementary Information see PDF:  http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf  or html:

http://edocket.access.gpo.gov/2009/E9-21334.htm

Click for   AGENDA

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html  

CFSAC Agenda – October 29-30, 2009

U.S. Department of Health and Human Services

 

Videocasts

Both days of this meeting will be videocast (Realplayer required)

Go to the NIH website at: http://videocast.nih.gov/FutureEvents.asp

Scroll down to October 29th Chronic Fatigue Syndrome link for: http://videocast.nih.gov/summary.asp?live=7908

Air date: Thursday, October 29, 2009, 9:00:00 AM
Time displayed is Eastern Time, Washington DC Local

October 30th Day 2: http://videocast.nih.gov/summary.asp?live=7909

You will be able to view the event at: http://videocast.nih.gov  when the event is live.

FAQ on video streaming at: http://videocast.nih.gov/faq/

The videocast will be archived for a few weeks after the meeting.  Mintutes of the meeting will be posted on the CFSAC website with archived copies of the testimonies provided for the meeting.

CFSAC webpage:  http://www.hhs.gov/advcomcfs/

 

Videocasts of Days One and Two of the previous meeting (27 – 28 May 09) can still be viewed at:

http://www.hhs.gov/advcomcfs/ 

Day One: Wed 27 May: http://videocast.nih.gov/Summary.asp?File=15130  (Realplayer required)

Day Two: Thurs 28 May: http://videocast.nih.gov/Summary.asp?File=15136  (Realplayer required)

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Commentary

From: RESCIND via

Help ME Circle 25 October 2009
Editorship : j.van.roijen@chello.nl  

***Please distribute far and wide!***

RESCIND rescindinc.org@gmail.com

Support the 500 Professionals of the IACFS/ME – Reeves Must Go

On May 27th and May 28th, 2009, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened in Washington, D.C. Among their recommendations to the Secretary of Health and Human Services was a call for new and progressive leadership at the CDC’s ME/CFS research division.

We, the public, need to back the IACFS/ME and the CFSAC. Under Bill Reeves’ regime, funding has routinely decreased and increasingly broad definitions which have ceased to have any clinical meaning or research value have been implemented.

Under Reeves’ direction the CFS program is being slowly strangled.

A couple of weeks ago, Dr. Judy Mikovits, who is a retrovirus expert at the Whittemore Peterson Institute, released the results of a study which provided overwhelming evidence that xenotropic murine leukemia virus-related virus, or XMRV, could very well be the third human retrovirus.

Mikovits found that in a study of 101 CFS patients, 67% were found to have XMRV in their cells, but this is really not new news. In 1991 Dr. Elaine Defreitas found retroviral DNA in 80% of her study’s 30 CFS patients. The CDC “replicated” her study, did not follow her exact procedure, and ended the study prematurely while ostracizing Defreitas.

What does Reeves say about Mikovits recent discovery? Without doing any study or due diligence Reeves dismisses  the findings by saying that they are “unexpected and surprising” and that it is “almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS.”

Deceit and incompetence have increasingly become the order of the day. The money that Bill Reeves has been receiving has been terribly mismanaged as he desperately strives to forestall the slow but inevitable pace of biomedical research.

Inappropriate management of funds prevents collaboration with biomedical experts, as well as collaboration with psychosocial experts who are not trying to build a career in psychosomatic medicine.

Bill Reeves must be held accountable.

Inaccurate stereotypes persist because Bill Reeves has not been accurately educating the public on the seriousness of this disease.

CFS is not a disease of “feeling a little tired,” no matter what you call it; this is a severe neuro-immune disease of among other things, debilitating exhaustion completely out of proportion to exertion. Patients may be too exhausted to even be able to chew their food, leave their beds and much less even work – and remain so year after year. Is that your neighbor’s experience of tired?

Perhaps you suffer from CFS, perhaps your patients do, or perhaps a loved one does; your best interests are not and have not been at the heart of the CDC’s program. What’s at the heart of the program is job security for Bill Reeves, his paycheck and collaboration with his pals – not finding ways to combat and track this horrible disease.

We need you now more than ever. Right now is the first real chance that we have had in nearly 30 years to fight Reeves in force; to fight for you, your loved ones, or your patients. Everyone from researchers to advocates are in agreement – Reeves must go. And we must make it happen. No one will do it for us.

Join members of the IACFS/ME at the CFSAC’s October 29-30th meeting in Washington, D.C. Do not let the hard work of other advocates and researchers over the years be for nothing. We need to show that we cannot be silenced and we will never give up.

If you cannot personally attend, find someone to attend in your place. Ask your parents, your children, your spouses or friends to attend in your place. Ask your elected officials to have aids attend.

The answer is always no if you don’t ask – we must make it happen – none of us can live with the alternative.

Reeves must go.

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Reeves CF Definition Petitition

From Tom Kindlon

“Please use whatever resources you have access to (e.g. blogs, Twitter, Facebook, other social networking sites, newsletters, E-mail lists/discussion forums, etc) to highlight the existence of the petition. The petition also links to some critiques of the definition. Many people have also written interesting comments.

Note: I have no intention of closing the petition site until the CDC stop using this flawed definition.”

I’m appending the text of the petition below with a link.

Petition webpage: http://CFSdefinitionpetition.notlong.com
i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

The petition

We call on the Centers for Disease Control and Prevention (CDC) to stop using the “empirical” definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the “empirical” definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com

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Scientific papers

The 1991 DeFreitas paper

Abstract and Full text here: http://www.pnas.org/content/88/7/2922.full.pdf+html

Proc. Natl. Acad. Sci. USA
Vol. 88, pp. 2922-2926, April 1991
Medical Sciences

Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome

(Epstein-Barr virus syndrome/infectious mononucleosis/myalgic encephalomyelitis/polymerase chain reaction/in situ hybridization)

The Wistar Institute, 3601 Spruce Street, Philadelphia, PA 19104

Contributed by Hilary Koprowski, November 13, 1990

ABSTRACT Chronic fatigue immune dysfunction

Chronic fatigue immune dysfunction syndrome (CFIDS) is a recently recognized illness characterized by debilitating fatigue as well as immunological and neurological abnormalities [Straus, S.E. (1988) J. Inf. Dis. 157, 405-412]. Once thought to be caused by Epstein-Barr virus, it is now thought to have a different but unknown etiology. We evaluated 30 adult and pediatric CFIDS patients from six eastern states for the presence of human T-lymphotropic virus (HTLV) types I and II by Western immunoblotting, polymearse chain reaction, and in situ hybridization of blood samples. The majority of patients were positive for HTLV antibodies by Western blotting and for HTLV-II gag sequences by polymerase chain reaction and in situ hybridization. Twenty nonexposure healthy controls were negative in all assays. These data support an association between an HTLV-II-like virus and CFIDS.

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Previous ME agenda Media Round-ups listed at the foot of this post: http://wp.me/p5foE-2cS