Study finds brain abnormalities in chronic fatigue patients | News Center | Stanford Medicine
Q for neurologist ...normal white matter volume?
Wednesday, October 29, 2014
Sunday, October 26, 2014
USA social security criteria for people with M.E. and/or fibromyalgia.
Very interesting article by disability lawyers regarding USA social security criteria for people with M.E. and/or fibromyalgia.
"I. What is CFS?
In determining a case of CFS, the first portions of this section (A. and B1.) largely follow the 1994 CDC definition, the text of which can be found on page 3 of the Ruling. Following the CDC definition, the Ruling makes clear that a “physician should make a diagnosis of CFS ‘only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded.” Also, the Ruling makes an important addition to the CFS Case Definition by noting that post-exertional malaise lasting more than 24 hours “…may be the most common secondary symptom.” So it will be very important for patients and doctors to document this symptom/sign.
However, in section B2., “Other Symptoms”, the Ruling expands the list of CFS diagnostic symptoms as more recently outlined in the Canadian Criteria and the International Consensus Criteria:“Other Symptoms. Within these parameters, the CDC case definition, CCC, and ICC describe a wide range of other symptoms a person with CFS may exhibit:
•Muscle weakness;
•Disturbed sleep patterns (for example, insomnia, prolonged sleeping, frequent awakenings, or vivid dreams or nightmares);
•Visual difficulties (for example, trouble focusing, impaired depth perception, severe photosensitivity, or eye pain);
•Orthostatic intolerance (for example, lightheadedness, fainting, dizziness, or increased fatigue with prolonged standing);
•Respiratory difficulties (for example, labored breathing or sudden breathlessness);
•Cardiovascular abnormalities (for example, palpitations with or without cardiac arrhythmias);
•Gastrointestinal discomfort (for example, nausea, bloating, or abdominal pain); and
•Urinary or bladder problems (for example, urinary frequency, nocturia, dysuria, or pain in the bladder region).”
As will be seen later, the inclusion of these common elements of CFS allows for an increased ability to provide medical evidence of the illness in terms of the necessary documentation of medical signs and laboratory testing.
In the last subsection 3 is the following text:
“Co-occurring Conditions. People with CFS may have co-occurring conditions, such as fibromyalgia (FM), myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud's phenomenon, migraines, chronic lymphocytic thyroiditis, or Sjogren's syndrome. Co-occurring conditions may also include new allergies or sensitivities to foods, odors, chemicals, medications, noise, vibrations, or touch, or the loss of thermostatic stability (for example, chills, night sweats, or intolerance of extreme temperatures).”
Here, again, the new Ruling (based on the more recent CFS/ME and ME definitions) includes many more of the essential elements of the illness that increase the physician’s ability to provide medical documentation. Many of these “co-occuring conditions” are essential symptoms of CFS and their documentation add to diagnostic clarity. Notably, multiple sensitivities and loss of thermostatic stability have for years been known to patients and educated clinicians, but are now just being fully recognized.
Other conditions that may explain symptoms similar to CFS:
The Ruling reads: “Additionally, several other disorders (including, but not limited to FM, multiple chemical sensitivity, and Gulf War Syndrome, as well as various forms of depression, and some neurological and psychological disorders) may share characteristics similar to those of CFS. When there is evidence of the potential presence of another disorder that may adequately explain the person's symptoms, it may be necessary to pursue additional medical or other development. As mentioned, if we cannot find that the person has an MDI of CFS but there is evidence of another MDI, we will not evaluate the impairment under this SSR. Instead, we will evaluate it under the rules that apply for that impairment.”
Therefore, in documenting a diagnosed case of CFS, the treating physician(s) should not only document any co-occuring conditions, but also should be sure to, if possible, clearly differentiate CFS from other conditions that may share over-lapping symptoms."
Link
Wednesday, October 08, 2014
Tuesday, October 07, 2014
How it felt at first with chronic fatigue syndrome
How it started for me too "I had woken up barely able to walk. Fatigue hardly described what I felt. Paralysis was more like it. My legs seemed to have been amputated and replaced with tubes of liquid concrete, and just shifting them on the table made me grunt like an Olympic weightlifter. My bones hurt; my brain felt like a swollen mass. Speaking required tracking down and spearing each word individually as it scampered away from me."
What is chronic fatigue
Sunday, October 05, 2014
Tuesday, September 16, 2014
Migraines and me
Have had migraines for as long as I can remember, they are now the most disabling they have ever been.....too knackered to write any more right now :(
http://www.migrainetrust.org/my-migraine-journey
Monday, December 30, 2013
Fibromyalgia solved: Not in the mind, but a very real physical ailment | Washington Times Communities
I have long said that my thermostat is bust also the part about lactic acid - I used to work out at the gym a lot and now get the lactic acid burn after for eg peeling just three spuds then the fourth becomes impossible as strength in wrists and hands fades to be replaced by "burn"...very interesting research!
Fibromyalgia solved: Not in the mind, but a very real physical ailment | Washington Times Communities
Fibromyalgia solved: Not in the mind, but a very real physical ailment | Washington Times Communities
Sunday, December 29, 2013
One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome | Simmaron ResearchSimmaron Research
One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome | Simmaron ResearchSimmaron Research
very interesting theory but why. oh why do they throw in behavioral therapies towards the end?
very interesting theory but why. oh why do they throw in behavioral therapies towards the end?
Monday, December 16, 2013
Monday, November 11, 2013
Saturday, October 19, 2013
Fibromyalgia solved; A pathology, not in the mind | Washington Times Communities
Fibromyalgia solved; A pathology, not in the mind | Washington Times Communities
This seems very, very interesting, temperature regulation and effects therefrom are huge in fibro, even now, in mild October my hands are hurting from the cold...could this aso be the cause of the bruising I and others with FM get?
"
Dr. Frank Rice writes of findings at Integrated Tissue Dynamics that has made a major discovery of the cause of fibromyalgia, making diagnosis more certain and explaining the multitude of varied symptoms and effects.
Research has identified alterations in our core body temperature is a culprit, as our blood acts as a coolant in much the same fashion water does in the radiator of a car. Our major organs and active muscles require a constant temperature of about 98.6 degrees Fahrenheit.
If we lose too much heat (hypothermia) or gain too much heat (hyperthermia), our body’s primary thermostat, the hypothalamus, struggles to maintain balance. Our blood is also the means by which our body and brain get nutrients, oxygen and takes away waste.
When we use our muscles, particularly the hands and feet, the blood flow between the skin and muscles must be kept in balance. We have internal thermostats distant from the hypothalamus called aterio-venous shunts or AV shunts that act as valves between arterioles or veins that supply the good stuff and venules which carry away waste.
The smallest part of our blood supply system is the capillaries which are tiny vessels that act as temperature regulators (among many other functions) and either conserve or release heat. Capillaries run throughout or bodies and are highly concentrated in our hands and feet. When damaged, capillaries are a serious issue for diabetics and now it has been discovered when the AV shunt is defective in function and interferes with capillary function, muscle and skin tissue cannot get proper nutrition or waste drawn away. Additionally, temperature regulation becomes an issue affecting nerve fibers.
The result is a build-up of lactic acid in muscle and deeper tissue affecting the muscular system and causes pain that can seem to ‘travel’ from areas of the body one day to the next and cause fatigue.
The sympathetic nervous system which uses the spinal cord for communication and the sensory fibers or nerve fibers that carry signals to the central nervous system, can have their communication disrupted by the results of AV shunt disorder and hyposensitized nerves send pain signals that can ‘travel’ as well. This explains why some selective serotonin reuptake inhibitors such as Cymbalta seem to help.
The Journal of Pain Medicine featured this research on its front cover accompanied by a laudatory editorial from Robert Gerwin of the Johns Hopkins School of Medicine. To date, the research is confined to women since women seem to suffer from fibromyalgia in greater numbers than men.
According to this research, fibromyalgia has pathology and is not psychosomatic so those who suffer from this ‘syndrome’ can now rest assured it is not all in their minds."
Read more: http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/#ixzz2iAebvmsr
Follow us: @wtcommunities on Twitter
This seems very, very interesting, temperature regulation and effects therefrom are huge in fibro, even now, in mild October my hands are hurting from the cold...could this aso be the cause of the bruising I and others with FM get?
"
Dr. Frank Rice writes of findings at Integrated Tissue Dynamics that has made a major discovery of the cause of fibromyalgia, making diagnosis more certain and explaining the multitude of varied symptoms and effects.
Research has identified alterations in our core body temperature is a culprit, as our blood acts as a coolant in much the same fashion water does in the radiator of a car. Our major organs and active muscles require a constant temperature of about 98.6 degrees Fahrenheit.
If we lose too much heat (hypothermia) or gain too much heat (hyperthermia), our body’s primary thermostat, the hypothalamus, struggles to maintain balance. Our blood is also the means by which our body and brain get nutrients, oxygen and takes away waste.
When we use our muscles, particularly the hands and feet, the blood flow between the skin and muscles must be kept in balance. We have internal thermostats distant from the hypothalamus called aterio-venous shunts or AV shunts that act as valves between arterioles or veins that supply the good stuff and venules which carry away waste.
The smallest part of our blood supply system is the capillaries which are tiny vessels that act as temperature regulators (among many other functions) and either conserve or release heat. Capillaries run throughout or bodies and are highly concentrated in our hands and feet. When damaged, capillaries are a serious issue for diabetics and now it has been discovered when the AV shunt is defective in function and interferes with capillary function, muscle and skin tissue cannot get proper nutrition or waste drawn away. Additionally, temperature regulation becomes an issue affecting nerve fibers.
The result is a build-up of lactic acid in muscle and deeper tissue affecting the muscular system and causes pain that can seem to ‘travel’ from areas of the body one day to the next and cause fatigue.
The sympathetic nervous system which uses the spinal cord for communication and the sensory fibers or nerve fibers that carry signals to the central nervous system, can have their communication disrupted by the results of AV shunt disorder and hyposensitized nerves send pain signals that can ‘travel’ as well. This explains why some selective serotonin reuptake inhibitors such as Cymbalta seem to help.
The Journal of Pain Medicine featured this research on its front cover accompanied by a laudatory editorial from Robert Gerwin of the Johns Hopkins School of Medicine. To date, the research is confined to women since women seem to suffer from fibromyalgia in greater numbers than men.
According to this research, fibromyalgia has pathology and is not psychosomatic so those who suffer from this ‘syndrome’ can now rest assured it is not all in their minds."
Read more: http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/#ixzz2iAebvmsr
Follow us: @wtcommunities on Twitter
Saturday, December 08, 2012
Monday, December 03, 2012
Sick and tired: the coalition’s war on the disabled and destitute
All this to cope with on top of already feeling terribly sicck and tired....
Sick and tired: the coalition’s war on the disabled and destitute
"I’m sick and tired of the cruelty and the lies. But being sick and tired is no reason not to keep fighting. Karen Sherlock, who died in June after a suspected heart attack, not long after having her benefits cut and being told to seek work by the DWP, was sick, and she was tired. She was just 44 years old, and severely disabled. In one of her last blog posts, she wrote: “We need to be passionate about standing up for our rights. If we can make enough noise, and get enough people to listen then we can overturn the inhumane changes this parasitic government have made.” There is a growing phalanx of people in this country refusing, like Karen Sherlock, like Christos Palmer and Lucy Aldridge, to accept this new, cruel reality. Disabled people and their allies are refusing to lie down meekly and accept their new status as scapegoats and social parasites. They are angry, and desperate, and prepared to make the ultimate sacrifice to protect their right, and others’ rights, to live with dignity. If the rest of us aren’t standing with them, we ought to be. Laurie Penny is an NS contributing editor"
"I’m sick and tired of the cruelty and the lies. But being sick and tired is no reason not to keep fighting. Karen Sherlock, who died in June after a suspected heart attack, not long after having her benefits cut and being told to seek work by the DWP, was sick, and she was tired. She was just 44 years old, and severely disabled. In one of her last blog posts, she wrote: “We need to be passionate about standing up for our rights. If we can make enough noise, and get enough people to listen then we can overturn the inhumane changes this parasitic government have made.” There is a growing phalanx of people in this country refusing, like Karen Sherlock, like Christos Palmer and Lucy Aldridge, to accept this new, cruel reality. Disabled people and their allies are refusing to lie down meekly and accept their new status as scapegoats and social parasites. They are angry, and desperate, and prepared to make the ultimate sacrifice to protect their right, and others’ rights, to live with dignity. If the rest of us aren’t standing with them, we ought to be. Laurie Penny is an NS contributing editor"
Thursday, November 29, 2012
A fabulous description of the way we have to count energy, and the ways our senses over-react to all sorts of stimuli. Thank you. I’ve have not been quite as incapacitated but have been very very close and still have to count my 2spoons" very carefully.
http://nopostergirl.com/2012/11/27/a-thousand-things/
"If you’re a healthy person, how many things do you think you do per day?
Your to-do list at work might have a half-dozen things on it, but I’m talking about more than that. Maybe you run a few errands after work and do some housework when you get home, and you think that brings it up to an even dozen?
What if I told you you do a thousand things per day?
I say that to demonstrate my perspective as someone with ME/CFS. The difference between what you can manage and what I can manage is enormous, and it’s likely that you and I see our possible energy expenditures in an entirely different way. Those thousand things include actions you never think of, things you’re hardly aware of – things that you would never think of as taking energy, because to you they take such a negligible amount. But they would would be enormous against my tiny supply.
And in comparison, how many things would you guess I do? Well, I’d say I’m up to a hundred now, maybe more depending on the day, but at my sickest, I’ve gotten down to as few as a dozen......"
Sunday, July 01, 2012
Feeling Tired – Sluggish? Digestion may be the problem - Waupaca Naturals
Feeling Tired – Sluggish? Digestion may be the problem - Waupaca Naturals
The digestive system utilizes enzymes in the food for the digestive process. Enzyme activity in processed foods is nearly non-existent. There are several reasons for this (preservatives, high temperature cooking, etc.). The goal of food manufacturers is to reduce or eliminate enzyme activity, which increases shelf life. Our bodies are designed to use the food enzymes combined with the enzymes created in our pancreas to digest food. Without enzymes in the food, the pancreas overworks trying to produce enough enzymes to digest the food. Over time the pancreas begins to weaken and becomes ineffective. The body now does one of two things;
An even worse case is where your food only partially digests. In this case the partially digested fats, sugars, and carbohydrates enter the blood stream causing all sorts of problems. The partially digested proteins cause your red blood cells to become sticky. The sticky red blood cells clump together
The digestive system utilizes enzymes in the food for the digestive process. Enzyme activity in processed foods is nearly non-existent. There are several reasons for this (preservatives, high temperature cooking, etc.). The goal of food manufacturers is to reduce or eliminate enzyme activity, which increases shelf life. Our bodies are designed to use the food enzymes combined with the enzymes created in our pancreas to digest food. Without enzymes in the food, the pancreas overworks trying to produce enough enzymes to digest the food. Over time the pancreas begins to weaken and becomes ineffective. The body now does one of two things;
- The stomach will be filled with extra acid and the food will sit in the stomach three or four times longer than normal. If this happens you may feel uncomfortable several hours after you eat and may experience heartburn.
- The food will go right through you. In this case you will often feel the need to excuse yourself almost before your finished eating. If you are lucky enough to have your food digested after this you will get some nutritional value from your meal, but you will feel fatigued during the process.
An even worse case is where your food only partially digests. In this case the partially digested fats, sugars, and carbohydrates enter the blood stream causing all sorts of problems. The partially digested proteins cause your red blood cells to become sticky. The sticky red blood cells clump together
Protozoal Infection
Protozoal Infection v interesting...could this be the cause of my sticky red blood cells?
Friday, June 01, 2012
Research suggests that CFS is an autoimmune disease
Benefit from B-lymphocyte depletion using the anti-... [PLoS One. 2011] - PubMed - NCBI
CONCLUSION:
The delayed responses starting from 2-7 months after Rituximab treatment, in spite of rapid B-cell depletion, suggests that CFS is an autoimmune disease and may be consistent with the gradual elimination of autoantibodies preceding clinical responses. The present findings will impact future research efforts in CFS.
Friday, May 25, 2012
damning report, Ignorance, injustice and neglect about NHS specialist services for people with M.E
Time for Action on damning report
Our damning report, Ignorance, injustice and neglect about NHS specialist services for people with M.E. based on the results of Freedom of Information Act requests to all Primary Care Trusts (PCTs) in England, Health Boards in Scotland and Wales and Health and Social Care Trusts in Northern Ireland is now available to download in full via the above link or as an Executive summary.
The responses from your local PCT, board or care trust to our key questions are on pages 27 to 29 of the report. An overview of the results throughout the UK and our conclusion are on pages 16 to 26.
http://www.actionforme.org.uk/OneStopCMS/Core/CrawlerResourceServer.aspx?resource=f11e86c4-9ca3-4185-9934-e43f7e4b3bec
Saturday, May 19, 2012
Functional bowel symptoms, fibromyalgi... [Scand J Gastroenterol. 2012] - PubMed - NCBI
Functional bowel symptoms, fibromyalgi... [Scand J Gastroenterol. 2012] - PubMed - NCBI
Abstract
Abstract Objective. Patients with perceived food hypersensitivity typically present with multiple health complaints. We aimed to assess the severity of their intestinal and extra-intestinal symptoms. Materials and methods. In a prospective study, 84 patients referred to our outpatient clinic for investigation of perceived food hypersensitivity were enrolled consecutively. Irritable bowel syndrome (IBS) was diagnosed according to the Rome III criteria. Severity and impact of bowel symptoms, fatigue and musculoskeletal pain were evaluated by using the following questionnaires: The IBS Severity Scoring System (IBS-SSS), the Fatigue Impact Scale (FIS), the FibroFatigue Scale (FFS), and visual analogue scales (VAS) for scoring of musculoskeletal pain. Results. All but one patient were diagnosed with IBS, 58% with severe symptoms. Extra-intestinal symptoms suggestive of chronic fatigue and fibromyalgia were demonstrated in 85% and 71%, respectively. Neither IgE-mediated food allergy nor organic pathology could explain the patients' symptoms. Nevertheless, malabsorption of fat was demonstrated in 10 of 38 subjects. Conclusions. Perceived food hypersensitivity may be associated with severe, debilitating illness. The comorbid triad of IBS, chronic fatigue, and musculoskeletal pain is striking and may point to a common underlying cause.
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