Simon McGrath se aseguró recientemente una entrevista con el mundialmente famoso doctor Ian Lipkin – un científico que sigue creyendo que EM / SFC tiene una causa física – para descubrir más sobre sus planes para un importante estudio del microbioma intestinal y para averiguar por qué está pidiendo el apoyo de la comunidad de pacientes…
Dr. W. Ian Lipkin ha demostrado un claro compromiso con la investigación en EM / SFC. Primero fue su estudio sobre el virus Borna en la década de 1990, y luego el estudio histórico que descartó el XMRV como causa, y más recientemente hemos oído hablar del enorme estudio en lo inmune y patógenos – una gran colaboración con muchos médicos e investigadores principales, entre ellos el Dr.… Read More
Simon McGrath recently secured an interview with the world famous Dr Ian Lipkin – a scientist who continues to believe that ME/CFS has a physical cause – to discover more about his plans for a major study of the gut microbiome and to find out why he’s asking the patient community for its support…
Dr W. Ian Lipkin has demonstrated a clear commitment to ME/CFS research. First came his study looking at Borna virus in the 1990′s, and then the landmark study that ruled out XMRV as a cause, and most recently we have heard about the huge pathogen and immune study – a vast collaboration with many key clinicians and researchers, including Dr Dan Peterson and Professor Jose Montoya.… Read More
Andrew Gladman takes a brief look at what cytokines are and how they might relate to our disease – exploring some of the research that is indicating their involvement in disease pathways…
Interferon Alpha By Nevit Dilmen
[GFDL or CC-BY-SA-3.0]
In recent years ME/CFS research has turned the spotlight on several areas, such as autoimmunity, the cardiovascular system and the autonomic nervous system.
While it is fair to say that much remains unknown about their function and behaviour, cytokines have a role to play in all these areas and they are being talked about with increasing regularity.
What are cytokines?… Read More
Bugs are not all bad, in fact many in our gut are essential to good health, but problems with these could help explain some diseases, possibly even ME/CFS. Simon McGrath takes an introductory look at the Microbiome – an area that is fast becoming a focus for several research teams looking at our own illness…
Home for gut microbes; few survive in the stomach but they flourish in the small intestine and dominate the colon – 60% of the dry weight of poop is bacteria.
The microbiome – the bugs that live in our gut and on our skin – has become a hot topic, not least because of the coverage of ‘faecal transplants’ that apparently cure life-threatening infections by restoring the microbiome with poop from healthy donors.… Read More
A concluding article for the ‘In Brief…’ Series, summing up the previous articles which attempted to explain the science behind fairly common topics and exploring how they relate to ME – by Andrew Gladman.
Over the past few weeks and months I’ve been busily researching, evaluating and writing the series of articles under the subheading of ‘In Brief…’. The original idea behind the articles came partly from frustration and partly from personal interest in the subject areas. From a personal standpoint I became sick just over a year ago and after roughly 6 months I landed a diagnosis of ME/CFS, forcing me to withdraw from university due to the plethora of symptoms I was and still am experiencing.… Read More
The fifth and final article in a series attempting to explain the science behind fairly common topics and exploring how they relate to ME/CFS. This time the topic is the nervous system – by Andrew Gladman.
The nervous system, specifically the autonomic nervous system, is frequently discussed in relation to ME/CFS, with quite a plethora of research being targeted in this area.
Many of the symptoms that ME/CFS patients suffer with, such as crushing fatigue, tremor sensations and headaches, could come as a direct consequence of abnormalities in the nervous system.
In this article, I aim to explore the organization and general function of the nervous system as well as considering the research, both historic and ongoing, as it relates to ME/CFS.… Read More
The fourth in a series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time the topic is the Cardiovascular System – by Andrew Gladman.
The cardiovascular system is not one that is commonly discussed in relation to ME, and yet it is an area that research has shown displays one of the more measurable abnormalities in patients.
Suffice it to say that many of the symptoms that ME patients suffer with, such as muscle fatigue, dysregulation of the nervous system and headaches, could come as a direct consequence of abnormalities in the vascular system.… Read More
The third in a series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time the topic is Mitochondria – by Andrew Gladman.
A single mitochondrion – hundreds of these organelles exist within each single cell of the body.
Over the years it is fairly safe to say that finding consistent physiological abnormalities in ME has proven difficult for researchers, and that this has likely reinforced the notion that ME is largely a psychological disease – an error which only in recent years is being shaken off.
One area that has shown consistent interest is the mitochondria, with many researchers acknowledging or suspecting mitochondrial dysfunction as a real physiological problem.… Read More
The second in series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time the topic is Autoimmunity – by Andrew Gladman.
Electron microscopic image of a human lymphocyte.
In the last few years it’s fairly safe to say that the topic of autoimmunity has moved from a fairly unknown entity in the ME field to perhaps the leading hypothesis in many peoples’ eyes. This surge in attention likely comes from the rituximab trials in Norway undertaken by Doctors Fluge and Mella. By chance they discovered that ME patients, who then went on to develop lymphoma, treated with rituximab for their cancer also experienced significant, albeit transient, relief from near all of their ME symptoms.… Read More
The first in a new series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time we delve into the complex and somewhat controversial world of viruses – by Andrew Gladman.
Computer generated image of Rhinovirus 3 capsid comprised of hundreds of copies of 3 proteins. Within this shell there is the viral genome and several functional enzymes to allow for replication of the genome and to aid the hijacking process.
I think it safe to say that no topic is quite as disputed as the role that viruses might play in the pathology of ME.… Read More
The CDC PCOCA telephone broadcast on 10 September 2013, featured a lengthy presentation from Dr Ian Lipkin who revealed some stunning initial results from the study that is primarily hunting for pathogens in ME/CFS. Simon McGrath and Russell Fleming (Firestormm) review this exciting and possibly game-changing news…
Dr Ian Lipkin
Chronic Fatigue Initiative (CFI)
Pathogen Discovery and Pathogenesis Study
Read the full Lipkin Transcript: Here.
Dr Ian Lipkin has been a human whirlwind in ME/CFS research since he became involved a few years back, and he’s just surprised us all by announcing the first results from the world’s largest ever biomedical ME/CFS study in a public broadcast!… Read More
Andrew Gladman explores the current research climate of ME/CFS, discussing how existing research ties into the emerging autoimmune hypothesis.
Link: ‘New data reveal first predictive biomarkers to tailor rheumatoid arthritis therapy’
Image: computer generated image of an antibody
Throughout the history of ME it is safe to say that understanding of the condition and the research itself has been somewhat fractured at best and lacking significance in many areas. In the last 30 years, following the Lake Tahoe outbreak which piqued the interest of doctors and media, little progress seems to have been made in terms of physiological understanding of the disease processes involved, perhaps due to the stigma of ME as a purely psychological entity which is only in recent years being shaken off.… Read More
The first in a new series of (mercifully) short pieces on recent research. By Simon McGrath
A new study used data from the large PACE Trial to see if CBT and Graded exercise (GET) improved ME/CFS pain. (The main trial itself found a moderate effect of CBT and GET on self-reported fatigue and function.) The study looked at muscle and joint pain frequency, and fibromyalgia status. And it compared CBT and GET to both specialised medical care (SMC) and APT (pseudo-pacing).
The questions are, did CBT or GET have any effect on these – and if so, how big was the effect?… Read More
Professor Jonathan Edwards
The charity Invest in ME’s plans for a UK Rituximab trial got a substantial boost at the end of July when Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), agreed to act as their advisor for the study.
‘No UK expert is better placed than Professor Edwards to advise us on setting up a Rituximab trial for ME patients’, stated the charity, and it’s hard to argue with that. Drs Fluge and Mella believe that the timing of ME patients’ response to Rituximab-induced B cell depletion indicates that ME may be an autoimmune disease, and it was none other than Professor Edwards who proposed, in a 1999 paper in Immunology, that self-perpetuating B lymphocytes drive human autoimmune disease.… Read More
Professor Stephen Holgate says ME/CFS is a spectrum of disorders that need to be understood through new approaches, and patients must be partners in research. Simon McGrath reports.
Houses of Parliament, site of Prof Holgate’s talk
ME/CFS probably isn’t one disease, or even a few different ones – but could be as many as fifteen. So said Professor Stephen Holgate, Chair of the UK Research Collaborative (CMRC), when he addressed the Forward ME Group in the House of Lords on 2nd July. He also argued that a radical New Science was needed to tackle ME/CFS and said patients must be partners in research.… Read More
London: site of the proposed UK Rituximab trial
Photo by fussy onion/Flickr
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.… Read More
Mark Berry invites readers to join 11 organizations and 31 advocates and write to the CDC, asking them to include appropriate medical tests in their multi-site study.
The historical approach of the US Centers for Disease Control and Prevention (CDC) to the study of ME/CFS has not been universally well-received – and that’s an understatement. The majority opinion of the ME/CFS community seems to be that the CDC has had its head stuck in the sand, as far as ME/CFS is concerned, ever since CDC epidemiologists finally rolled into Lake Tahoe to investigate the outbreak there in 1984. But in recent years there have been some promising signs that the CDC may at last be starting to take the disease more seriously.… Read More
Hooked up for a CPET
Simon McGrath reports on Dr Snell’s new study demonstrating that ME/CFS patients have a reduced capacity to exercise when they repeat a maximum exercise test one day on – unlike healthy controls.
One of the biggest problems of getting ME/CFS taken seriously is that often we ‘look’ normal, even though we feel lousy, and most lab tests produce ‘normal’ findings. How do we prove to the world that we are sick?
A defining feature of ME/CFS is Post-Exertional Malaise (PEM) and a couple of studies have clearly demonstrated PEM in patients [see box]. However, PEM is a subjective experience and one that can only be measured by patient self-report, which won’t satisfy everyone.… Read More
Mark Berry introduces Dr Neil Coulson and Anna Maddison from the University of Nottingham, and their new 2-part research project with Phoenix Rising
The most rewarding part of my work with Phoenix Rising is meeting people who tell me that treatment information they have found on our forums has dramatically changed their lives and their health, or that the forums provide them with valuable social and emotional support in their isolation and are a vital ‘lifeline’ for them. After all, the forums are a central part of Phoenix Rising’s work – they are the largest ME/CFS forums in the world, and how I found the organization in the first place – and the non-profit provides and manages these forums in the hope and belief that they are a valuable resource to the ME/CFS community.… Read More
Imagine that you’ve just been put in charge of the world’s ME/CFS research – yes, you – and you’ve got to decide what research you want. Come on, hurry up!
Erm, erm, erm… oh yes, well, of course, as a patient you want something that’s going to get practical benefit for you in the shortest time possible. You’ve been waiting decades for treatments: you want them fast. But you’re not some medical genius so how are you going to choose what research should be done? Well, you could get the best ME/CFS researchers in the world, shove them in a room together and not let them out until they’ve come up with a list of the best, fastest-payoff, top priority projects, and… hang on a minute, somebody’s just done that.… Read More