I saw Dr. Ian Carroll, an expert in cerebral spinal fluid (CSF) leaks from Stanford University, for the first time recently. He spent 1.5 hours with me and was very thorough, asking me a series of detailed questions he uses to assess patients for possible CSF leaks (see below).
I have ME/CFS and hypermobile Ehler-Danlos Syndrome (hEDS) and was referred to him by my autonomic specialist at Stanford because my orthostatic intolerance (OI) picture is a bit muddy and because hEDS, a connective tissue disease, is a risk factor and can cause aneurysms and spontaneous leaks from the dural sac (the tough outermost membrane of the spinal cord and brain). Continue reading
A new study led by Stanford chronic fatigue syndrome expert Jose Montoya, MD, and published in the Proceedings of the National Academy of Sciences has linked chronic fatigue syndrome to variations in 17 immune-system signaling proteins, or cytokines, whose concentrations in the blood correlate with the disease’s severity.
The findings strongly suggest that inflammation is a powerful driver of this mysterious condition, whose underpinnings have eluded researchers for 35 years. Continue reading
Exercise Tests Suggest Autoimmunity Causes the Exertion Problems in Chronic Fatigue Syndrome, Fibromyalgia and POTS – Health Rising – by Cort Johnson | Aug 16, 2017
Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom, a pulmonologist, it was all about demand.
He didn’t seek chronic fatigue syndrome patients out – quite the contrary. When Systrom was given control of a clinical cardiopulmonary lab, he started doing invasive cardiopulmonary exercise tests (iCPET’s) on people with exercise intolerance.
Invasive Cardiopulmonary Exercise Testing (iCPET) Continue reading
Forced Exercise With CBT Fails for CFS – Journal of Health Psychology – August 29, 2017 – free full-text Research Article
The results of this study showed what patients have known all along:
For sufferers of CFS/ME,
exercise is the problem, not the solution,
it’s in the body, not the mind.
Cognitive behavioural therapy and graded exercise theapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome.
This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. Continue reading
This is another case of the CDC promoting faulty therapies for chronic illness.
I used to think that the CDC, with its access to all global research, was the final authority on general health care. But now I’m disillusioned about this powerful government agency after finding nonsense therapies being promoted for other problems, like chronic fatigue, not just chronic pain.
For years, the U.S. Centers for Disease Control and Prevention recommended two controversial treatments for ME/CFS, the illness often known as chronic fatigue syndrome:
- a program of steadily increasing activity, and
- a specific form of cognitive behavior therapy. Continue reading
Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) is Inflammatory Disorder – Simmaron Research By Cort Johnson – August 11, 2017
The study examined the levels of a very large number of cytokines (n=51) in the blood of a very large number of patients and healthy controls (ME/CFS=186; healthy controls= 388). Age, sex, race and something called “nonspecific binding” were accounted for.
One of the biggest ME/CFS immune studies ever undertaken, done at a top University, this was a study that we dearly didn’t want to fail.
This is the kind of study likely to be labeled “definitive”. Continue reading
Lactate has become a big deal in both chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). A by-product of anaerobic energy metabolism, lactate ordinarily gets pumped out of our cells in large amounts during exertion.
The lactate findings suggest that the energy needs of ME/CFS/FM patients are largely being addressed by glycolysis or anaerobic energy production.
Anaerobic energy production plays an important role in energy production, but when aerobic energy production is not available and it becomes the major source of energy it produces metabolites that produce the burning muscles, fatigue and other symptoms we associate with over-exercise. Continue reading
New research has identified distinct immune changes in patients diagnosed with chronic fatigue syndrome, providing evidence that the disabling disorder is a biological illness as opposed to a psychological disorder.
According to researchers at the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health, the findings could help improve diagnosis of chronic fatigue syndrome, known medically as myalgic encephalomyelitis (ME/CFS) or systemic exertion intolerance disease. Continue reading
Just as crowdfunding has changed finance and citizen journalism has transformed the media, the internet is altering the face of medicine and healthcare.
A striking example of that is Mendus (http://www.mendus.org), a website where members can design their own research studies.
Joshua Grant’s journey, seeking answers to his own health issues, led him to develop the site. Continue reading
This overview article gives a good explanation of the functions of the vagus nerve and how it could affect chronic illness and pain.
Vagus nerve stimulation is one of the most promising chronic pain interventions under development today.
An earlier blog on Health Rising featured an astonishing story of a woman whose very severe fibromyalgia was largely ameliorated by a vagus nerve stimulator implant.
a recent three part review did an overview of our understanding of what the vagus nerve does, how vagus nerve stimulation works and how it effective it is. Continue reading