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
Simon McGrath examines the latest research publication from Professor Baraniuk and Dr Rayhan
Exercise challenge is fast the becoming THE key method when studying illnesses characterised by Post Exertional Malaise, such as Gulf War Illness (GWI) and ME/CFS. A paper just published looks at how exercise affects pain, cognitive performance, heart rate and brain functioning in patients with GWI. These patients also happened to meet the criteria for CFS, albeit only based on questionnaire diagnosis, making this study particularly interesting from an ME/CFS perspective.… Read More
Dr Maria Gjerpe, founder of MEandYou
On 9 March, ME/CFS patient Dr Maria Gjerpe started a 90-day campaign to raise $1.2 million (£780,000, €920,000) to fund a confirmatory trial of the effects of immune drug Rituximab on the disease at Haukeland Hospital in Norway. Ninety days because that’s all she could confidently commit: she herself had gone from bedridden to completely well on Rituximab in a pilot study at the hospital but she knew that 80% of patients relapsed after several months.
As Maria worked 12-hour days without a break, the campaign rapidly went international and patients and supporters from all over the world piled on to make it happen.… Read More
by Simon McGrath
Prof Stephen Holgate
The new UK CFS/ME Research Collaborative has had its first meeting and it very much looks like it means business. They have plans to rev up the research agenda and raise funds – and they have key players on board too.
The CMRC is chaired by Stephen Holgate, MRC professor of Immunopharmacology at Southampton, with Dr Esther Crawley as vice chair. There are then five charities and five further researchers to complete the Executive Board.
So far Professors Julia Newton (Autonomic system & fatigue), Hugh Perry (Neuropathology), Paul Little (Primary Care Research), and Peter White (Psychiatry) have been appointed, with one more to follow.… Read More
Mark Berry reports from London on the 8th Invest in ME International ME Conference.
This was only my second year at the Invest in ME conference, but already I feel right at home! The presentations you’re about to read about are only half the story; the opportunity to mingle and network with a family (yes it really does feel like a family!) of top researchers, physicians, campaigners and patients from all over the world, is absolutely priceless. And this year, the new spirit of hope and togetherness in the air was a joy to behold.
The title this year was “Mainstreaming ME Research: Infections, Immunity and Myalgic Encephalomyelitis”, and the twin themes – an emerging consensus around a ‘paradigm shift’ to thinking about ME as an autoimmune disorder, and a focus on strategies for effective research and a breakthrough into the scientific mainstream – fit together perfectly.… Read More
Joel (snowathlete) continues his series on zoonotic pathogens with an introduction to Bartonelliosis
Photo by girlstyle
Bartonella is a zoonotic that frequently infects humans causing diseases termed Bartonelliosis. Probably the most commonly known is cat scratch disease (CSD) which, you guessed it, you catch from cats (especially cute kittens). Cat scratch disease is caused by two species of Bartonella: B. henselae and B. clarridgeiae. But more than a dozen species of Bartonella can cause diseases in humans including B. bacilliformis which causes Carrion’s disease, and B. quintana which causes trench fever. It is not uncommon for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to test positive for Bartonella.… Read More
This is an extended version of an article originally published on ProHealth as “An Interview With Julia Newton, Founding Member of Newly Launched CFS/ME Research Collaborative.”
By Clark Ellis
Dr. Julia Newton is one of the founding members of the recently launched UK CFS/ME Research Collaborative (UK CMRC), a new initiative aimed at expanding medical studies into ME/CFS by bringing together experts in the field and several of the ME/CFS charities in the UK.
Dr. Newton is Dean for Clinical Medicine at Newcastle University in the United Kingdom. She is also Clinical Professor of Ageing and Medicine at Newcastle University and a Consultant at the Royal Victoria Infirmary within the Newcastle Hospitals NHS Foundation Trust.… Read More
Maria gets 300,000 krone from the Kavli Foundation
(Photo: Skjalg Ekeland/BA)
I call Dr Maria Gjerpe’s 90-day campaign to raise money for a crucial confirmatory Rituximab trial a ‘fundraising marathon’ but that hardly covers it. It’s more like a triathlon a day for three months. Maria, previously bedridden for years with ME/CFS, has been working 12-hour days non-stop to fund the Phase III trial on the drug that has, for now, restored her to health.
As she explained in her article in March, Maria doesn’t expect to stay well. She was a patient in Drs Fluge and Mella’s ME/CFS pilot study on Rituximab and received her last infusion of the drug earlier that month.… Read More
by Simon McGrath
Prof Stephen Holgate
Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK’s main research funders (MRC, Wellcome Trust and NIHR) it aims “to create a step change in the amount and quality of research into chronic fatigue and ME”. The launch featured some eye-catching provisional results that got good media coverage, particularly the study from Newcastle showing differences in lab-cultured muscle from CFS patients versus healthy controls. And an fMRI study found that patients had to use more brain regions to accomplish the same mental tasks as controls, confirming earlier work in this field.… Read More
Simon McGrath on some important recent research into cognitive deficits in ME/CFS.
Brain fog is a major issue for ME/CFS patients, with 80-95% reporting memory or concentration problems. And while researchers have often found evidence of ‘cognitive deficits’ in laboratory testing, a surprising number of studies have failed to find deficits, leaving some to even speculate that patients’ cognitive problems are more perceived than real.
Clearing away the smoke
Such inconsistent findings are almost the norm for CFS research, with similarly mixed results in many areas including biomarkers. How do you make sense of it all?… Read More
Joel (snowathlete) reviews the research on ME/CFS and Parvovirus B19.
Parvovirus B19. Image courtesy of Dr Jean-Yves Sgro, Virusworld [*]
Parvovirus B19 (B19) is a small virus with an icosahedral shell (a polyhedron having 20 faces)  and has been linked with the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). B19 was discovered fortuitously in 1975. There are several other parvoviruses, but most don’t infect humans.
You may have heard of the parvovirus which infects dogs and often causes fatality, but B19 is not the same virus, or even in the same genus, so B19 is not a zoonotic. In humans, B19 is often caught in infancy and causes “slapped cheek”, also referred to as “fifth disease”, and is considered to be mild and self-limiting.… Read More
Joel (Snowathlete) talks with Dr Blanco, from IrsiCaixa, about the Spanish AIDS Research Institute‘s latest research on ME/CFS
Back in 2009 when XMRV hit the headlines a number of groups around the world took an interest in ME/CFS for the first time. One of these groups was the AIDS Research Institute IrsiCaixa, in Spain. Then XMRV tripped itself up and ME/CFS became invisible again…Except, it didn’t…
IrsiCaixa were still interested. Dr Blanco and his colleagues had taken a look at ME/CFS in 2010 and spotted a bunch of problems in the immune system. These guys really know their stuff when it comes to immunology and they knew that they were on to something.… Read More
Dr. Maria Gjerpe, an ME patient for 30 years, explains how and why MEandYou are going to crowdfund a Rituximab study.
Within 90 days we are going to raise 7 million Norwegian krone ($1.2 million) to fund a study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway.
Will we – the patients, relatives, friends – be the first in the world to crowdfund a clinical trial?
And can we engage both sides of the Atlantic to make it happen?
In 2012, a study at Haukeland Hospital on the use of the immunosuppressive medication Rituximab against ME attracted international attention.… Read More
Joel (Snowathlete) continues his series on zoonotic pathogens with a thorough examination of Borellia and Lyme disease – and their possible relevance for ME/CFS patients.
by Tina Carvalho, University of Hawaii at Manoa
Borrelia is the bacterium that causes borreliosis. It is a microscopic spiral-shaped parasite. There are many different species of Borrelia, some of which cause Lyme borreliosis, otherwise known as Lyme disease.
Borrelia is a zoonotic pathogen transmitted via a vector, usually a tick. There is evidence that other arthropods such as fleas, biting flies, mites and spiders also carry it, but so far there is only limited – mainly anecdotal – evidence of transmission to humans by non-tick arthropods.… Read More
Simon McGrath explains how Mady Hornig is applying tools used to understand other complex illnesses in an effort to unlock the secrets of ME/CFS.
In a recent article I looked at the huge studies Professor Mady Hornig has underway looking for pathogens or signs of immune abnormalities in ME/CFS. While these are immensely impressive, I thought they were eclipsed by the main theme of her presentation: her jaw-dropping work in other illnesses. It took me a few attempts to fully grasp some of the more complex material, but I was left in a state of stunned admiration. And that doesn’t happen very often, as anyone who’s seen my posts will know.… Read More
by Simon McGrath
For me, the star attraction of Nancy Klimas’ recent CFS/GWI conference was always going to be Professor Mady Hornig and her talk.
Hornig might not be well known by ME/CFS patients – yet – but her boss is: Ian Lipkin, who so skillfully handled the XMRV ‘dediscovery’ study (which she worked on too). Despite disproving a link with XMRV, Professor Lipkin made clear his belief that ME/CFS was a serious disease that had not received the serious attention it deserved. Even more important – given his stellar record as a scientist – was his commitment to playing a serious role in trying to solve the illness.… Read More