@jimmyvasser: "I had the honor of presenting my dear friend @lxznr into the Hall of Fame"

jimmy vasser and alex zanardi

subset of patients with CFS improve within the first 3 months of valganciclovir use

@ pubmed

J Med Virol. 2013 Aug 19. doi: 10.1002/jmv.23713. [Epub ahead of print]

Randomized clinical trial to evaluate the efficacy and safety of valganciclovir in a subset of patients with chronic fatigue syndrome.

Montoya JG, Kogelnik AM, Bhangoo M, Lunn MR, Flamand L, Merrihew LE, Watt T, Kubo JT, Paik J, Desai M.

Source

Department of Medicine, Stanford University School of Medicine, Stanford, California; Division of Infectious Diseases and Geographic Medicine, Stanford University School of Medicine, Stanford, California.

Abstract

There is no known treatment for chronic fatigue syndrome (CFS). Little is known about its pathogenesis. Human herpesvirus 6 (HHV-6) and Epstein-Barr virus (EBV) have been proposed as infectious triggers. Thirty CFS patients with elevated IgG antibody titers against HHV-6 and EBV were randomized 2:1 to receive valganciclovir (VGCV) or placebo for 6 months in a double-blind, placebo-controlled trial. Clinical endpoints aimed at measuring physical and mental fatigue included the Multidimensional Fatigue Inventory (MFI-20) and Fatigue Severity Scale (FSS) scores, self-reported cognitive function, and physician-determined responder status. Biological endpoints included monocyte and neutrophil counts and cytokine levels. VGCV patients experienced a greater improvement by MFI-20 at 9 months from baseline compared to placebo patients but this difference was not statistically significant. However, statistically significant differences in trajectories between groups were observed in MFI-20 mental fatigue subscore (P = 0.039), FSS score (P = 0.006), and cognitive function (P = 0.025). VGCV patients experienced these improvements within the first 3 months and maintained that benefit over the remaining 9 months. Patients in the VGCV arm were 7.4 times more likely to be classified as responders (P = 0.029). In the VGCV arm, monocyte counts decreased (P < 0.001), neutrophil counts increased (P = 0.037) and cytokines were more likely to evolve towards a Th1-profile (P < 0.001). Viral IgG antibody titers did not differ between arms. VGCV may have clinical benefit in a subset of CFS patients independent of placebo effect, possibly mediated by immunomodulation and/or antiviral effect. Further investigation with longer treatment duration and a larger sample size is warranted. J. Med. Virol. 9999:1-9, 2013. © 2013 Wiley Periodicals, Inc.

© 2013 Wiley Periodicals, Inc.

KEYWORDS:

Epstein-Barr virus, chronic fatigue syndrome, human herpesvirus 6, randomized clinical trial, valganciclovir

PMID:

 

23959519

 

[PubMed - as supplied by publisher]

Professor Jonathan Edwards (B lymphocytes drive autoimmune disease) and The UK ME Rituximab Trial

AUGUST 12, 2013 by Sasha:

On June 6, the Norwegian Medical Research Council agreed to give a large enough grant to the Haukeland Rituximab trial for the study to begin. Later that day, the charity Invest in ME announced that they were initiating a UK Rituximab trial. It seemed to come out of nowhere. There were no details – cost, size, location, research team – but there didn’t need to be. The ME community started throwing money at the trial and trusted Invest in ME when it said it could be done.

This trust was surely based on the reputation that Invest in ME has established for itself in its few short years of existence. The newest UK ME charity, run entirely by volunteers, it set up in 2006 aninternational annual conference on biomedical research into ME – not CFS, but WHO-defined ME – that is now attended by most of the major research groups from all over the world and is a focus for information-sharing and collaboration-building among ME researchers.

At the most recent conference, Drs Fluge and Mella presented their follow-up study of a new Rituximab dosing schedule on the control patients from their Norwegian pilot study. The results are still embargoed until publication but apparently positive. Drs Kogelnik and Scheibenbogen, who are planning US and German Rituximab studies, respectively, were also there. No-one could doubt Invest in ME’s sources of expertise and support in setting up a trial.

The community’s trust quickly paid off as the charity was able to make public a major coup. Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), had agreed to advise Invest in ME on all aspects of running a Rituximab trial (read his statement on the trial here). It was Professor Edwards who proposed in 1999 that self-perpetuating B lymphocytes drive autoimmune disease. He went on in 2004 to conduct the trials of Rituximab for rheumatoid arthritis that established the role of B cell depletion in treating autoimmune disorders, the same mechanism that Drs Fluge and Mella believe is operating in the treatment of ME with Rituximab.

Fresh from that victory, Invest in ME went on to announce their plans to have the trial conducted by an expert team led by Dr Jo Cambridge at UCL, with the intention of including other London sites and other collaborating researchers such as Dr Amalok Bansal, an immunologist with a research interest in B-cell abnormalities in ME.

Read more>>

Professor Leonard A. Jason to Receive Award for Excellence in Research

Leonard Jason to Receive DePaul University's 2013 College of Science and Health Award for Excellence in Research

Professor Leonard A. Jason, a most prolific innovator in the study of new topics in community psychology, is the recipient of the 2013 College of Science and Health (CSH) Research Award at DePaul University. Dr Jason is a Professor of Psychology at DePaul University and the Director of the Center for Community Research who is completing his 38th year as a DePaul faculty member.

Dr. Roger Weissberg, Novo Foundation Endowed Chair in Social and Emotional Learning and Distinguished Professor at the University of Illinois at Chicago, says, “There is broad consensus that Dr. Jason is among the pre-eminent community behavioral health psychologists in the United States.” Dr. Jason led scientific study in three relatively unexplored areas of community psychology. He has developed and empirically verified the value of new ways of reducing underage youth’s access to tobacco. These approaches have been implemented in communities across the nation.

Second, he has played a major role in establishing the scientific basis of chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) and thereby obtaining National Institute of Health support for studying this disease.

Third, Dr. Jason’s work has demonstrated the effectiveness of recovery homes run by people recovering from alcoholism, known as Oxford Houses, in preventing residents from relapsing. With about 1500 homes, Oxford Houses are the largest privately organized system of recovery homes in the U.S. In sum, Dr. Jason has edited or written 23 books, and he has published over 600 articles and 75 book chapters in community psychology. Consequently, his work has been widely cited and he has served on the editorial boards of ten psychological journals. He was ranked as the fourth most productive clinical psychologist in over 40 leading programs nationally in 2000-2004, and is likely the most prolific community psychologist in history. Dr. Jason has received over $26,000,000 in federal research grants. The American Psychological Association has honored him with three media awards. He is frequently asked to comment on policy issues for numerous media outlets.

Dr. Anne Bogat, Professor of Psychology and former Director of Clinical Psychology Training at Michigan State University, noted that, “Although exemplary in every way, Lenny’s research shines because it has had such a major influence on the field and people’s lives.” Dr. Jason’s many awards are a testimony to the scientific and social impact of his research and related activities. He received the 1997 Distinguished Contributions to Theory and Research Award in Community Psychology from Division 27 of the American Psychological Association. He was presented the 1997 CSN ACTION Champion Award by the Chronic Fatigue Immune Dysfunction Syndrome Association of America in appreciation of research and educational efforts on behalf of persons with CFS. He was also given the Dutch ME-Foundation International ME-Award for 2003 for outstanding work in the field of CFS. Moreover, he was presented in 2007 with a Special Contribution to Public Policy Award by the Society for Community Research and Action. Dr. Jason was awarded the 2011 Perpich Award for distinguished service to the IACFS/ME and the CFS/ME community, the first person who was not a physician to receive this honor. In 2011, he was also presented with the Tom Fellows Award by the Oxford House Organization for his 20 years of research documenting the process of long term recovery from addiction, the first person who was not a recovering addict to receive this honor. Finally Dr. Jason is an invited keynote speaker at the Biennial Convention of the Society for Community Research and Action this summer in Miami.

CSH is delighted to recognize Leonard Jason’s career of exemplary research in community psychology with the 2013 Award for Excellence in Research.

remember what should have been Sophia's 40th birthday

today should have been Sophia's 40th birthday

email a short message to Sophia's Mother Criona 

and Sophia's sister Roisin @

:

sophiaandme@hotmail.co.uk

 

Uploaded on Jan 14, 2009

Sophia's mum Criona tells how her daughter Sophia unnecessarily suffered and died from the very much misunderstood diesease of ME. Sophia died because of the greed of some doctors and the ignorance of many doctors. ME is a PHYSICAL illness, yet it profits medical insurance companies and the mental health camp to fudge the physical/mental disease line in order for profit. ME/CFS is not a grey area, it is a physical disease not a mental one.

dysfunctional: Recovery in PACE, the 6 minute walking test and other issues

"The exclusion of physiological measures has resulted in PACE, in effect, targeting a phantom condition – a condition constructed on the assumption that dysfunctional beliefs and behaviours are responsible for an assumed deconditioning.

This phantom condition has been assumed to be amenable to the predetermined CBT and GET treatments.

Meanwhile, a real physiological condition has been ignored."

  ‘Recovery’ in PACE, the 6 Minute Walking Test and Other Issues: 
 How Well Can ‘Recovered’ Patients Walk? 
 Susanna Agardy (Australia)

  The Lancet will withdraw comment that claims that PACE participants had a 30% recovery rate with CBT and GET

  Made worse by CBT or GET? The PACE Trial calls that recovery