CFIDS Association calls for input from experts into DSM-5 review process

CFIDS Association calls for input from experts into DSM-5 review process

Shortlink: http://wp.me/p5foE-2Pa

Image Source: Academy of Psychosomatic Medicine, Nevada, November ‘09 Annual Meeting slide presentation, Francis Creed, MD, FRCP: Can We Now Explain Medically Unexplained Symptoms? See this posting

The March issue of CFIDSLink-e-News reports that the CFIDS Association of America is seeking input from outside experts into the DSM-5 public review process:

Extract:

“Advocacy Counts

“The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association (APA). The proposed revision, DSM5, has drawn media coverage and close scrutiny since its release on Feb. 10. Creation of a new category called “Chronic Somatic Symptoms Disorder” is of particular concern to CFS patients and organizations. The Association is seeking input from outside experts and will submit a review of the biological abnormalities in CFS to APA. The APA will accept public comments until April 20.”

Note that the proposed new classification is “Complex Somatic Symptom Disorder (CSSD)” and not “Chronic Somatic Symptoms Disorder” as given above; CFIDS has been advised.

The DSM-5 Work Group for “Somatic Symptom Disorders” is proposing that Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC), and Factitious Disorders should be combined under a common rubric entitled “Somatic Symptom Disorders” and for a new classification “Complex Somatic Symptom Disorder (CSSD).”

The DSM-5 public review period runs from 10 February to 20 April, so there are just over six weeks during which stakeholders in DSM-5 – that’s members of the public, patient representation organisations, professionals and other end users can submit their responses.

Please take this opportunity to submit a response and to alert and encourage professionals and international patient organisations to participate. Key links are provided at the end of this posting.

The following UK organisations have so far been silent on the DSM-5 proposals:

All seven organisations have been contacted, today, for position statements on whether they intend to submit a response and if so, whether their responses will be published:

Action for M.E.
The ME Association:
AYME
The Young ME Sufferers Trust,
The 25% M.E. Group
Invest in ME: Intend to submit a response and to publish
ME Research UK

I would welcome copies of submissions from any patient organisations, professionals and advocates for publication on a dedicated page, here, on DSM-5 and ICD-11 Watch site:

Go here to read Mary M. Schweitzer’s Submission to the Work Group for Somatic Symptom Disorders.

To submit a comment online register here:

APA’s new DSM-5 Development site: http://www.dsm5.org/Pages/Default.aspx

You can also register via a link at the bottom of each proposal, for example, at the bottom of this key page:

Complex Somatic Symptom Disorder (CSSD)

Note that if you are viewing proposals from this page:

http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

you won’t see the page for:

“Psychological Factors Affecting Medical Condition”

This is one of the DSM-IV categories that the Work Group is proposing should be combined with several other current categories under “Somatic Symptom Disorders”.

In order to view this page, the Proposed Revision, Rationale and other Tabs, or if you wished to submit a comment specifically in relation to this proposal, this is the URL:

316 Psychological Factors Affecting Medical Condition

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=387

There are two key PDF documents associated with proposals for the DSM categories currently classified under “Somatoform Disorders”:

Key Document: Full Disorder Descriptions PDF: APA Somatic Symptom Disorders description January29 2010

Key Document: Full Rationale PDF: APA DSM Validity Propositions 1-29-2010

These provide an overview of the new proposals and revisions and a “Justification of Criteria” rationale document. I would recommend downloading these if intending to make a submission.

Related information:

[1] APA’s new DSM-5 Development webpages

[2] Somatoform Disorders:
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

[3] Complex Somatic Symptom Disorder (CSSD) [Ed: Proposed new category]
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368

[4] Psychological Factors Affecting Medical Condition [Ed: Proposed for revision]
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=387

[5] Key PDF documents:

PDF A] Somatic Symptom Disorders Introduction DRAFT 1/29/10
http://www.dsm5.org/Documents/Somatic/APA%20Somatic%20Symptom%20Disorders%20description%20January29%202010.pdf

PDF B] Justification of Criteria – Somatic Symptoms DRAFT 1/29/10
http://www.dsm5.org/Documents/Somatic/APA%20DSM%20Validity%20Propositions%201-29-2010.pdf

[6] For more information see my DSM-5 and ICD-11 Watch site, DSM-5 proposals page: http://wp.me/PKrrB-jZ

Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call

Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call

Shortlink: http://wp.me/p5foE-2OW

Our very best wishes to Ryan and his family.

Related material:

Baldwin Family website: http://www.bringingryanhome.com/ 

Media:

Mountain Express

Home for good?
Black Mountain couple regains custody of son
by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010

Statement from P.A.N.D.O.R.A., Inc.

FOR IMMEDIATE RELEASE

26 February 2010

By Marly Silverman, Founder & President

The case of Ryan Baldwin is an ominous wake-up call of the need for awareness of Pediatric Chronic Fatigue Syndrome

Nelda Holder’s article on young Ryan Baldwin and his family (“Home for good? Black Mountain couple regains custody of son” Mountain Express 2/24/2010) shines a long-anticipated and much needed spotlight on more research, proper diagnosis and treatment options for children and young adults under the age of 18 stricken with Chronic Fatigue Syndrome (CFS).

The sad case of Ryan Baldwin and his family underscores the dangerous lack of understanding as to the serious nature and special care of children with Chronic Fatigue Syndrome, as well as current objective medical research on the illness.

Clearly, as was the case of the Baldwins, government officials need better understanding and awareness of the complexities of this illness that strikes 1 to 4 million Americans including children, teenagers, young adults, adults, and the elderly, according to the Center for Disease Control and Prevention (CDC).”

CFS community advocates for Ryan

In 2009, Pat Fero, director of the Wisconsin CFS-ME association and Jerry Rice, the Baldwin family’s local advocate in their home in Buncombe County, North Carolina brought Ryan’s situation to our attention. County officials had removed Ryan from his family, alleging that his parents have not provided him with “mental health care and access to a pediatrician.”

Along with 23 other patient advocacy non-profit organizations, P.A.N.D.O.R.A. mobilized an awareness campaign that included letters and petitions to North Carolina Governor Bev Perdue, NC State Legislators and NC Federal legislators on behalf of then 16-year-old CFS patient Ryan and his family.

We were elated when Ryan was finally reunited with his family. We were even more excited when Lisa Baldwin, Ryan’s mother, joined P.A.N.D.O.R.A. early this year to help with creating awareness of the issues that surround families with children with Chronic Fatigue Syndrome so that no other family will have to go through “the hell” that the Baldwin family did.”

Pediatric Chronic Fatigue Syndrome Conference Committee Forming

To further address the need for better understanding and awareness of CFS in adolescents, P.A.N.D.O.R.A., a nationally recognized patient advocacy group which stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc., is creating its first patient and physician CME committee to help plan a conference explicitly dealing with pediatric Chronic Fatigue Syndrome.

The Pediatric Chronic Fatigue Conference aims to provide the medical community and government authorities with the proper training and resources to launch important educational initiatives that will ensure that children with CFS and other chronic pain illnesses and their families will be treated with the respect and care that they deserve.

For additional information about the P.A.N.D.O.R.A. Pediatric Chronic Fatigue Syndrome conference committee, contact Marly Silverman at: contact@pandoranet.info .

About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and persistent Lyme disease and advocate on quality of life issues.

In 2008, P.A.N.D.O.R.A in partnership with the Lanford Foundation-Lifelyme, Inc. , established the NeuroEndocrineImmune (NEI) CenterT, a community, patient-driven grass roots project to be based in New Jersey. The NEI CenterT will be the first research center dedicated to understanding and treating chronic neuroendocrineimmune illnesses.

Walson Communications

www.walsonpr.com

TEL: 714-970-2268

Cell: 714-865-4147

Medically Unexplained Psychologising of ME (MUPs) by Peter Kemp

An essay by Peter Kemp orginally published on Co-Cure

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

 

Medically Unexplained Psychologising of ME (MUPs)

Permission to repost

10 October 2009

In this essay I will explore some psychic phenomena that might be relevant to psychologising of illness.

Generalisations cannot practically be made, MUPs is not just heterogeneous from a psychic viewpoint – it is likely to be individual. So I can only explore my impressions and I hope you will read my theories as falling somewhere between the Origin of Speciousness and A Tale of Two Settees.

Use of some terminology has been unavoidable but I include a few definitions and illustrations as ‘Asides’ that I hope will help make the essay accessible to PWME.

Peter Kemp

Acronyms:

PWME = Person (or People) With ME

MUPs = Medically Unexplained Psychologising of ME

 

Medically Unexplained Psychologising of ME (MUPs)

Aside 1

AN ILLUSTRATION OF ‘PROJECTION’

Jack thinks that it would be very bad to be envious; this might be something his parents taught him. He notices envy in other people and condemns them for being envious. The envy that he so often notices might be real or not, it does not matter because it is HIS envy he is seeing. He is Projecting his envy onto other people to try and hide and control it within himself.

WITHDRAWAL OF PROJECTION

Projection is an unconscious process, people are not aware when they are doing it, but if they can become aware of the true source of a problem there may be an opportunity for growth.

One day Jack says to Jill, ‘I think you are envious of Mary’s little lamb’; and Jill says, ‘actually, I love Mary so much I gave her that lamb. I think you are envious because I get on so well with Mary.’ Jack’s theories fall apart and his projection is laid bare. If he is honest and humble enough he can then discover his own envy and stop projecting it. It may help if Jill points out ‘what’s wrong with being envious anyhow? It is part of how I know what I like and what I want’.

Through this uncomfortable experience Jack stops projecting envy and finds that natural feelings of envy can help him to make decisions about what he wants in life.

———————————————

Projected Fear

PWME represent ‘ideal’ subjects for the projection of all sorts of fears, Fear of losing control, Fear of weakness, Fear of illness, Fear of physical inadequacy, and perhaps worst of all, Fear of fear. For some MUPs I suspect that subtler projections and issues arise, such as Fear of being wrong and Fear of being misunderstood. All these fears have their roots in the psyche and are most troublesome when their origins are unconscious and when strongly denied. This may result in odd behaviour that may nevertheless be easily justified, but the justifications do not reveal the true motives behind the behaviour, instead they contribute to their concealment.

To confront fear it must be acknowledged but if it originates from an intense inner conflict it might be that the ego is not ready to withstand it. In these circumstances an internal struggle is maintained to repress some aspects of a complex in order to protect the ego. Enacting these conflicts in the world is a common way of reinforcing defences and avoids addressing the conflict directly. Unfortunately, this never resolves the issue at its source and means that substitute conflicts must constantly be found. As such projecting Fear may be predisposing and initiating; and because projection is an avoidance strategy, it is likely to be a maintaining factor in MUPs.

Withdrawal of Projection

For some people in whom contact with PWME arouses issues with fear, the psyche may seize this as an opportunity for growth. If someone projects fear onto another they may sometimes be able to compare their projection with the actual person. If discrepancies are found then the projection might start to weaken, then the projector has an opportunity to challenge and eventually withdraw the projection.

For example; a person fearful of losing control might project this onto a PWME; if they then realize that the PWME is actually coping well (with what for many people is a terrifying aspect of disability), the projector may think something like; ‘I thought he was weak, but I could not cope so well with such a loss of control’. This represents a stage of withdrawal of a projection as the projector has discovered that the source of the fear is within himself. Such situations might be considered MUPs based on transient / opportunistic factors; and is I suspect, a very common occurrence. Some MUPs might be able to relate to this if they find they vacillate between impatience and respect towards a PWME. This could be a sign that projections are weakening and the source of fear might be discoverable.

25% ME Group announces Byon Hyde MD as new Patron and Medical Advisor

The 25% ME Group has announced, today, that US Dr Byon Hyde, MD, is taking up the role of new Patron and Medical Advisor to this organisation for the severely affected.  The Countess of Mar had been a long time Patron to the 25% ME Group but was asked to stand down early this year following the NICE Guideline debacle.

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

25% ME Group  http://www.25megroup.org

PERMISSION TO REPOST

The 25% ME Group is pleased to report the appointment of their new Patron and Medical Advisor.

We are absolutely delighted to announce that Dr Byron Hyde will be taking up the role with immediate effect.

Dr Byron Hyde is leading physician and researcher specialising in Myalgic Encephalomyelitis (ME) and has worked exclusively with ME patients since 1985.

He is the founder and chairman of the Nightingale Research Foundation which is dedicated to explore, understand and treat patients disabled with ME and is at the forefront of the struggle to draw a clear distinction between ME and the current definitions of Chronic Fatigue Syndrome. In 1992 he published the medical reference book still used by researchers internationally “The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”.

Dr Byron Hyde is an outspoken critic of the role psychiatry has played in ME. His entreaty that “Psychiatrists should not ever be placed in charge of diagnosis and treatment of M.E. patients” is one we fully support.

Dr Byron Hyde has been instrumental in bringing about recognition of ME as a serious illness and we feel he fully represents the interests and aims of the 25% ME Group. We are proud to have him as our Patron.

We also take great pleasure in announcing our new additional Medical Advisor, Dr Nigel Speight, who, as you will read below, recently departed from AYME. We are extremely pleased to have Dr Speight on board as he is a highly respected medical professional within the ME field and a great advocate for the biomedical view of ME.

Below we have posted resignation letter from Dr Nigel Speight to AYME (Young Childrens’ ME Charity) for your information.

Dear all

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 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

We are especially delighted to announce the new Patron and Medical Advisor for our Group because as many of you will know, both stand for the true recognition and research of ME (as opposed to including it along with other Chronic Fatigue conditions). They also are firmly opposed to any psychological intervention within the area of ME.

We hope you will be delighted along with us regarding this news and please feel free to report or republish this information within your own publications etc.

With best wishes

Simon Lawrence

Chairperson

25% ME GROUP

21 Church Street
Troon
Ayrshire
KA10 6SQ

enquiry@25megroup.org

www.25megroup.org

XMRV Retrovirus Round up 22: WPI Press Release, ESME, 74 CFSAC meeting videos

XMRV Retrovirus   Whittemore Peterson   Institute Science   Mikovits   Peterson   Chronic Fatigue Syndrome

XMRV Retrovirus: Round up 22: WPI Press Release, ESME, 74 CFSAC meeting videos

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

Press Releases

PDF here: WPI Release Diagnostic Test

http://www.wpinstitute.org/WPI%20Release%20Diagnostic%20Test.pdf

FOR IMMEDIATE RELEASE

Frankie Vigil
R&R Partners
775-336-4555
frankie.vigil@rrpartners.com

Viral Immune Pathology Diagnostics Introduces New Test for XMRV Patients and Clinicians
-Net proceeds from test dedicated to further WPI research-

RENO, Nev. – The Whittemore Peterson Institute (WPI) has recently published a research study revealing the prevalence of XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS or what has most recently been called, X associated neuro-immune disease, (XAND). In response to an overwhelming request for a diagnostic test for XMRV, WPI has temporarily agreed to allow Viral Immune Pathology Diagnostics (VIP Dx) to begin offering the identical tests that have been extensively validated using the same technology developed by Drs. Lombardi and Mikovits and their colleagues as reported in Science.

VIP Dx is a small state certified laboratory in Reno, Nevada that was formed in response to the September 11, 2001 crisis which resulted in the cessation of blood sample shipments between the United States and Europe. Faced with the loss of important lab tests impacting patients with neuro-immune diseases, the Whittemore family made the decision to support the lab in Reno.

“Our family made it possible for the lab to not only continue delivering diagnostic tests to doctors, but also help the WPI bring cutting edge biomarkers of disease to this field of medicine, such as the tests for XMRV,” said Annette  Whittemore, Founder and President of WPI. “Tests conducted for XMRV, and other tests that support the diagnostic process in this field, will support the continuation of vital work at WPI through our donation of all of our net proceeds.”

XMRV test acceptance commenced at VIP Dx this month.

For more information about the XMRV test kit, visit www.vipdx.com

Whittemore Peterson Institute  http://www.wpinstitute.org/

The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses caused by acquired dysregulation of the immune system and the nervous system, often resulting in lifelong disease and disability. The WPI is the first institute in the world dedicated to neuro immune diseases, integrating patient treatment, basic and clinical research and medical education.

—————-

CFSAC Two Day meeting: NIH videocasts now available plus 74 Video segments

http://cfsknowledgecenter.ning.com/video

74 videos covering the CFSAC Two Day meeting (29 – 30 October) on Dan Moricoli’s Ning ME-CFS Community.

—————-

NIH will be counting viewing figures to assess interest in making videocasts for these meetings available worldwide – so please view the videocasts on the NIH site:

Videocasts of CFSAC meeting 29-30 October 2008

Around 12 hours of video of the two day CFSAC meeting is now available at:

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

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) – Day 1
Thursday, October 29, 2009
HHS Office on Women’s Health (OWH)
Total Running Time: 06:43:49

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

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) – Day 2
Friday, October 30, 2009
HHS Office on Women’s Health (OWH)
Total Running Time: 05:15:09

Presentation

Dr David Bell’s PowerPoint slides: http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

———-

Media

The Street   |  3 November 2009

http://www.thestreet.com/_yahoo/story/10620979/1/hemispherx-cops-to-ampligen-fda-delay.html

Ref: Hemispherx press release:

http://finance.yahoo.com/news/Hemispherx-Biopharma-Updates-pz-1535703186.html 

See also:

http://philadelphia.bizjournals.com/philadelphia/stories/2009/11/02/daily2.html

Hemispherx cops to Ampligen FDA delay

PHILADELPHIA, Pa. (TheStreet) – Hemispherx Biopharma(HEB Quote) issued an “update” to the regulatory status of its chronic fatigue syndrome drug Ampligen in which the company essentially admits that its prior public statements were false and misleading.

Monday’s statement was likely crafted by Hemispherx’s lawyers as a way to help CEO Bill Carter wiggle out of public statements he made in May and June claiming the Ampligen application to the U.S. Food and Drug Administration to be complete. Carter insisted regulators weren’t asking for any additional information on Ampligen.

Read full article here

—————-

Patient organisation statements

ESME www.esme-eu.com

Dear Whittemore Peterson Institute,

The Scientific Panel, the Board of Directors and the staff of ESME wish to congratulate the Whittemore Peterson Institute on the groundbreaking work they are performing in the area of neuro-immune diseases and especially their work with the XMRV virus. We applaud the thoroughness of your research and the openness with which you are sharing this research information with the world. We believe that by sharing scientific knowledge with this openness, you are starting a new era of scientific cooperation.

ESME would like to help the Whittemore Peterson Institute with information flow in Europe. We have the capacity to professionally translate information to Danish, Dutch, German, Norwegian, French and Spanish and we have a professional website where information can be posted in any of these languages: www.esme-eu.com  

ESME has also established a database of approximately 3000 e-mail addresses of European scientists, doctors, medical associations, national and regional ME associations, politicians, journalists and other people interested in ME/CFS. This database allows us to easily distribute information to professionals in many fields. We will gladly use our resources to assist the Whittemore Peterson Institute with the distribution of information in Europe.

In 2009, ESME held two conferences in Norway to educate healthcare personal (and patients) about the diagnostics, treatment, causes and consequences of ME/CFS. ESME will continue organizing these conferences in the coming years throughout Europe. We would like to invite a representative of the WPI to be a guest speaker at future European conferences to help us inform and train European MD’s and therapists better.

With Kind Regards,

ESME

—————-

Commentary

Cort Johnson’s Phoenix Rising website: http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

Cort Johnson’s Blog and comments: http://aboutmecfs.org/blog/

Cort Johnson’s Forums: http://forums.aboutmecfs.org/

—————-

About.com  Fibromyalgia  and CFS Blog  | 5 November 2009

XMRV & Updated Mechanism Theory of Chronic Fatigue Syndrome

The XMRV Discovery Series

Dr. Daniel Peterson, one of the researchers involved in the possibly groundbreaking XMRV findings, testified before the NIH’s Chronic Fatigue Syndrome Advisory Committee Oct. 29. Among the many things he presented was an updated theory of how chronic fatigue syndrome (CFS or ME/CFS) develops. (Thanks to Dr. David S. Bell and his newsletter, Lyndonville News for putting this into language that was easier to understand!)

Read full article here

—————-

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

For Science paper go here: http://wp.me/p5foE-2is

Click here for all previous XMRV Round ups and postings in reverse date order: https://meagenda.wordpress.com/category/xmrv/

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: Round up 21: CFSAC videocasts, Testing, Media, CDC Chatter Blog

XMRV Retrovirus   Whittemore Peterson   Institute Science   Mikovits   Peterson   Chronic Fatigue Syndrome

XMRV Retrovirus: Round up 21: CFSAC videocasts, Testing, Media and CDC Chatter Blog

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

Videocasts of CFSAC meeting 29-30 October 2008

Around 12 hours of video of the two day CFSAC meeting is now available at:

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

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) – Day 1
Thursday, October 29, 2009
HHS Office on Women’s Health (OWH)
Total Running Time: 06:43:49

———-

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

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) – Day 2
Friday, October 30, 2009
HHS Office on Women’s Health (OWH)
Total Running Time: 05:15:09

Presentation

Dr David Bell’s PowerPoint slides: http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

Public Testimony
Thursday, October 29, 2009

List of those given testimony plus some PDFs

Friday, October 30, 2009

List of those given testimony plus some PDFs

Written Testimony Received Prior to the Meeting Date

26 PDFs

—————

YouTubes of CFSAC meeting

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

Dr Dan Peterson presentation in 11 parts here: http://www.youtube.com/user/luminescentfeeling#p/u/11/80yKflt0tcA

—————

Media

Reno Gazette Journal  | 3 November 2009

http://www.rgj.com/article/20091103/NEWS/911030349/1321/news

Hundreds request test for retrovirus
BY LENITA POWERS • lpowers@rgj.com

Overwhelmed by requests from people seeking to have their blood tested for a new retrovirus discovered by researchers at the Whittemore-Peterson Institute for Neuro-Immune Disease in Reno, the institute has arranged for a local laboratory to do the testing.

The flood of requests for blood tests began after the Whittemore-Peterson Institute published a research study in the Oct. 8 online journal Science that showed the prevalence of the retrovirus XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Viral Immune Pathology Diagnostics (VIP Dx), a small state-certified laboratory in Reno, temporarily will provide testing for the retrovirus XMRV for physicians who request it for their patients at a cost ranging from $400 to $650.

Institute officials said the hope to enter an agreement with a larger laboratory that could handle the demand nationwide, Annette Whittemore, the institute’s founder and president, said Monday…

Read full article here

———————

ProHealth  |  3 November 2009

http://www.prohealth.com/library/showarticle.cfm?libid=14982

Dr. Bell’s November Newsletter – Lyndonville Research Group ‘Back in Business’ with Presentations Planned

Issued in the wee hours of November 3, 2009, Dr. David Bell’s latest free Lyndonville News e-newsletter (http://www.davidsbell.com/index.htm#Latest  announces that the revived Lyndonville ME/CFS Research Group has already initiated four projects, the first being a presentation Dr. Bell will give Sunday, Dec 6 in Batavia, New York “Between Rochester and Buffalo,” fee $10 to cover costs…

Read full article here

——————

University of Florida  College of Medicine  |  3 November 2009

http://news.medinfo.ufl.edu/articles/miscellaneous/event/chronic-fatigue-syndrome-cancer-linked-to-new-virus/

By Czerne Reid

A newly identified virus has been found to be linked to chronic fatigue syndrome and might also provide clues about how to prevent prostate cancer, according to a report this month in the journal Science. Called XMRV, the virus is transmitted in blood and body fluids and might be a significant public health threat.

Judy Mikovits, Ph.D., senior author of the paper, described the research during grand rounds at the University of Florida College of Medicine Thursday, Oct. 20. She was a guest of the division of hematology/oncology…

Read full article here

——————

Reuters Hemispherx Press Release

http://www.reuters.com/article/pressRelease/idUS124102+02-Nov-2009+GNW20091102

Hemispherx Biopharma Updates Chronic Fatigue Syndrome (CFS) Treatment and Commercial…

Mon Nov 2, 2009 8:46am EST

Hemispherx Biopharma Updates Chronic Fatigue Syndrome (CFS) Treatment and Commercial Application Programs

PHILADELPHIA, Nov. 2, 2009 (GLOBE NEWSWIRE) — Hemispherx Biopharma, Inc. (NYSE Amex:HEB) (the “Company”), announced a two-prong CFS clinical mission for November and December 2009.

The Company plans to widen its ongoing clinical programs in CFS by accelerating collaborations with a consortium of researchers who have just discovered a retroviral link to Chronic Fatigue Syndrome (please see October 8, 2009, online issue of Science). A clinically validated test to detect retrovirus antibodies in patients plasma is also currently under development (please see US National Institutes of Health at:
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv ).

With the consortium of researchers at the Whittemore Peterson Institute, the Company is also now evaluating the defect in immunosurveillance in specific subsets of CFS patients in a clinical study entitled “Therapeutic Activation of NK lymphocytes to Alleviate Chronic Fatigue Syndrome.” These immune defects may be due to the previously undetected retrovirus…

Read full Press Release here

—————-

About.com  Fibromyalgia  and CFS Blog  | November 3, 2009

http://chronicfatigue.about.com/b/2009/11/03/chronic-fatigue-syndrome-dr-lerner-on-ampligen-xmrv.htm

Chronic Fatigue Syndrome: Dr. Lerner on Ampligen, XMRV

By Adrienne Dellwo, About.com Guide to Fibromyalgia & CFS

Dr. A Martin Lerner: Thoughts on XMRV (Updated), Ampligen

In my recent conversation with Dr. A. Martin Lerner, a former chronic fatigue syndrome sufferer who says he used his specialty in infectious diseases to find treatments for himself and others, I asked him about both the XMRV discovery (which was just days old at the time) and also about Ampligen, the proposed chronic fatigue syndrome drug currently awaiting FDA approval…

Read full article here

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Commentary

From Hillary Johnson, author of “Osler’s Web”:

Website: http://oslersweb.com/

Blog: http://oslersweb.com/blog.htm

2 October 2009 via Co-Cure

“I’ve posted a new blog, “CDC MYOCARDIAL INFARCTION,” which reveals agency staff anxiety over the likelihood of reprisals against the CDC for Bill Reeves’ two-decades con job.

http://www.oslersweb.com/blog.htm?post=643435

“The material comes from an internal CDC web site where anonymous posters chat about what worries them. Over the weekend, several people have sent me comments captured from this site before it was shut down on October 29th.”*

Stephen Ralph, of MEActionUK, also presents a comprehensive link to this site, at: http://www.meactionuk.org.uk/CDC_Chatter_Blog_-_Updated_021109.htm

Ed: Note: The site has not been shut down but access to this particular thread is no longer set for public access.

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

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: 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: https://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  

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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

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

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