Tag Archives: CFIDS

CFIDS: 20011-oppdatert oversikt over publiserte studier av biologiske avvik hos ME-pasienter

Hentet fra CFIDS:

     Klikk på bildene for å komme til orginaldokumentet, det er hentet fra CFIDS Association Of America.

Eller klikk HER

Dr. Susan Vernons (CFDIS) oppsummering av presentasjoner av XMRV fra "18th Conference on Retroviruses and Opportunistic Infections(CROI)"

Hentet fra cfids.org:

“I’ve spent the past few days watching some of the sessions webcast from the 18th Conference on Retroviruses and Opportunistic Infections(CROI), hoping for new insights into the role(s) that human gammaretroviruses, including XMRV and polytropic murine leukemia virus-related viruses (MLVs) play in CFS and other diseases.”

Les mer HER

Les på norsk med Google Translater HER

Update of Blood XMRV Working Group Activities

Hentet fra CFIDS nyhetsbrev:

Update of Blood XMRV Working Group Activities

Friday, December 17, 2010 at 1:00 PM (Eastern)



srwgThe Department of Health and Human Services Blood XMRV Scientific Research Working Group (SRWG) was established in late 2009 to design and coordinate research studies to evaluate whether XMRV poses a threat to blood safety. It is presently overseeing a four-phase study with the following objectives:

  • Phase I:  Evaluating the analytical sensitivity of multiple XMRV nucleic acid assays
  • Phase II: Pilot clinical studies to evaluate optimal processing time and sample preparation
  • Phase III: Evaluating clinical sensitivity and specificity of XMRV nucleic acid and antibody assays
  • Phase IV: Initial estimation of the proportion of blood donors who are positive for XMRV nucleic acids and/or antibodies.
Results of the Phase I (analytical panels) were presented on July 27, 2010 at a meeting of the FDA’s Blood Products Advisory Committee (BPAC). Results of Phase II (pilot clinical studies) will be presented on Dec. 14, 2010 to the BPAC. An agenda for the BPAC meeting can be found at http://bit.ly/ho5Aw4. BPAC meetings are open to the public, but are not available by webcast.

In this webinar, Graham Simmons, PhD, and Michael Busch, MD, PhD, of Blood Systems Research Institute and University of California-San Francisco will provide an update on the Blood XMRV Scientific Research Working Group studies, including results from Phase II, as well as future retrospective repository and prospective screening studies of XMRV in US blood donors and recipients. Steven H. Kleinman, BSc, MD, of University of British Columbia, and a member of the SRWG, will serve as moderator for the discussion.

Litt fra CFIDS desember nyhetsbrev

14-15 desember skal Food and Drug Administration (FDA) arrangere en konferanse for Blood Products Advisory Committee slik at de kan vurdere om ME og prostatakreft pasienter bør forbys å gi blod. American Red Cross (den største blodbanken i Amerika) har allerede inngått forbud (det kan du lese om HER og HER) og det blir spennende å se om FDA tar eksempelet til etterfølgelse.

CFIDS gir følgende informasjon i sitt nyhetsbrev:

“The Food and Drug Administration (FDA) regulates the collection of blood and blood components used for transfusion or for the manufacture of pharmaceuticals derived from blood and blood components. FDA has sought the advice of its Blood Products Advisory Committee on the deferral of donors based on a diagnosis of CFS or prostate cancer and testing for the newly identified MLV-related retroviruses (that include XMRV) associated with CFS and prostate cancer that may pose a concern for blood safety. The committee will consider the evidence at its Dec. 14-15 meeting (see “Research Matters” above). The AABB and several other organizations involved in blood collection and transfusion will give statements at the meeting. Last week, the American Red Cross clarified a policy to indefinitely defer individuals reporting a past or present diagnosis of CFS. The policy was fully implemented by Oct. 11, 2010 and data on deferrals (from the American Red Cross and other centers) will be available to the committee. CFIDS Association CEO Kim McCleary will attend the meeting and present a statement that supports the indefinite deferral of individuals with CFS from donating blood, based on the body of evidence of possible risks to recipient and donor amassed over the past 25 years.”

“There will be nine invited presentations on MLVs at the Dec. 14-15, 2010 meeting of the Food and Drug Administration’s Blood Products Advisory Committee, including an update on the blood safety study being coordinated by the National Heart, Lung and Blood Institute. Labs participating in this study experienced delays in testing samples, which held up a progress report expected in November”

Webinar 18.11: Pacing yourself through the holidays

CFIDS har holdt et nytt webinar i kveld med tema “Pacing yourself through the holiday” med Dr. Bruce Campbell og Dr. Dane B. Cook


Slidsene finner du HER

Video opptaket er ikke tilgjengelig foreløpig, men jeg legger det ut så snart det er ute.

Video: "Managing Orthostatic intolerance" med Dr. Peter Rowe


Fra 1 november får ME-pasienter permanent forbud mot å gi blod i UK

Hentet fra CFIDS.org:

“In correspondence from the U.K. Director of Health Protection dated August 27, 2010, a new policy will soon be implemented: “As of Nov. 1, 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the U.K. This change is being made on the grounds of donor safety as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions of neurological conditions of unknown origin.”"

Les mer HER

Webinar om ME, XMRV og blodsikkerhet

Hentet fra CFIDS:

“In this webinar, Louis M. Katz, MD, a specialist in infectious diseases and a prominent figure in national blood banking organizations, will provide background about blood safety issues related to xenotropic murine leukemia virus-related virus (XMRV) – a retrovirus that has been linked to chronic fatigue syndrome (CFS). Public health officials are investigating the potential threat to the nation’s blood supply posed by XMRV due to the possibility that it might be transmitted through transfusions, as are other retroviruses such as HIV and HTLV. Dr. Katz will review current XMRV research initiatives and will discuss investigations of the retrovirus by those working in transfusion medicine.”

TORSDAG 12.08.10 KL. 20.00 – 21.00

Les mer og meld deg på HER

Oppdatering på den nyeste forskningen av XMRV og ME

Hentet fra CFIDS.org:

Thursday, July 15, 2010 12:00 PM – 1:30 PM EDT

During this program you’ll hear from two experts about the latest research into the association between XMRV, a newly discovered human retrovirus, and CFS.

Vincent Racaniello, PhD, a virology professor at Columbia University and host of the popular “This Week in Virology” podcast and Virology Blog, will update us on what is known about XMRV, its association with human disease (including CFS) and how research should move forward to understand its role in CFS.

Lucinda Bateman, MD, an expert CFS physician, will provide an update on the latest studies of XMRV and CFS. Dr. Bateman is a clinical collaborator on a study at University of Utah led by Dr. Ila Signh, one of the co-discoverers of XMRV. She will outline seven ways in which the research on XMRV has positively impacted the field of CFS research and what we’re likely to learn as studies progress.”

Vil du delta på webinaret? Les mer og registrer deg HER

Gi din støtte til viktig underskriftskampanje!!

Denne kampanjen er ekstra viktig med tanke på CDCs nylig publiserte negative XMRV-studie. Dr. Susan Vernon (Scientific Director, CFIDS) uttaler følgende:

“So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set.

Detecting XMRV is hard. Replication of the Science paper will be hard because of the exacting methods required and because of the heterogeneity and complexity of CFS. Regardless of the outcome of any single study, it is critical that a valid replication study be designed and implemented by multiple laboratories, using standard and optimized techniques and testing split samples collected appropriately from adequate numbers of well-characterized cases and controls.”

Gi din støtte ved å signere underskriftskampanjen ” CDC CFS reasearch should not involve the empirical definition (2005)”:

“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.”

Signer underskriftskampanjen HER (nederst)

Switch to our mobile site