“Just Be Positive!” Toxic Positivity, ME/CFS and Fibromyalgia – Health Rising by Lori Madeira and Cort Johnson | May 2019
In the face of a chronic illness, our friends and family can resort to simple solutions:just try and be positive they might advise. Look on the bright side. Focus on what you can do.
It’s not bad advice, but it often comes across as out of place and hurtful for someone with a chronic illness.
The truth is that you can’t experience real joy or peace on top of misery.
I’m so glad to see this truth we live with stated so plainly. Continue reading
Bad Engine? Is a Wimpy Motor Cortex Causing the Pain in Fibromyalgia (and ME/CFS)? – Health Rising – by Cort Johnson | Apr 2019
Studies suggest it’s possible that every [problematic] aspect of muscle activity – from oxygen uptake by the muscles, to mitochondrial functioning, to lactate build up, to the ability of the muscles to relax, to problems with the microcirculation – are present to some degree in fibromyalgia.
Every time you pick up a pen, hit a key on a keyboard, or turn on your smartphone, the premotor and supplementary motor areas of your motor cortex plan the movement first.
Then your primary motor cortex sends a message to the muscles to act. Continue reading
Correcting the Missing Piece in Chronic Fatigue Syndrome – Part 1: Discovery – by Diana Driscoll, OD, President of Genetic Disease Investigators – Jan 2016
This article explains the “Driscoll Theory”, which posits that “extremely low levels of the neurotransmitter, acetylcholine” is causing the symptoms of Chronic Fatigue Syndrome. She makes a convincing argument:
Symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) can involve
- the central nervous system (cognition, executive function, short- term memory),
- the peripheral nervous system (muscle weakness, fatigue with exertion), and
- the autonomic nervous system (heart rate, blood pressure, breathing, digestion).
Through the Looking Glass: Cerebral Spinal Fluid Leaks & Ehlers Danlos Syndrome – an Alternate Reality to ME/CFS? – Health Rising by Caroline Christian | Dec 1, 2017
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
Blood test: Scientists crack code of chronic fatigue syndrome’s inflammatory underpinnings | Scope Blog – Bruce Goldman on July 31, 2017
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
CDC Removes Reference to Disputed Chronic Fatigue Therapies From Website – 07.26.2017 / By David Tuller
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
Study Suggests “Bad Energy” is Core Problem in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) – Health Rising – by Cort Johnson | May 31, 2017
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