The PACE trial found that cognitive behavioral therapy and graded exercise therapy were effective treatments for chronic fatigue syndrome and could produce recovery in 22% of patients. It seems they g

A Christian blog about how to manage stress with Bible principles and medical relaxation techniques

Thyroid Healing: read about Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomyelitis (ME), Systemic Exertion Intolerance Disease (SEID now at www.medicalmedium.com

For a challenge at The Lilypad. Elements from Sissy Sparrows, Quirky Heart, Just Jaimee, Nancy Rowe Janitz, Little Butterfly Wings, Lynne-Marie, and Tangie Baxter. The font is MasanaScript 4Silueta.

The Institute of Medicine has proposed replacing the terms chronic fatigue syndrome and myalgic encephalomyelitis with systemic exertion intolerance disease (SEID).

An isolated complex V inefficiency and dysregulated mitochondrial function in immortalized lymphocytes from ME/CFS patients, by Daniel Missailidis, Sarah J Annesley, Claire Y Allan, Oana Sanislav, …

It's now called systemic-exertion-intolerance disease (SEID), and your doctor is wrong about it not being genuine

Report recommends calling illness systemic exertion intolerance disease to reflect severity of physical symptoms

A systematic review of metabolomic dysregulation in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Systemic Exertion Intolerance Disease (CFS/ME/SEID), by Teilah Kathryn Huth, Natalie Eaton-Fit…

"Systemic exertion intolerance disease" might not fall trippingly off the tongue, but an Institute of Medicine panel says it better matches the symptoms. The disease, it says, is real.

Many researchers consider chronic fatigue syndrome (CFS) to be a synonym of Myalgic Encephalomyelitis (ME). However, the case criteria of ME and CFS define two distinct clinical entities. Although some patients will meet both case criteria, other patients can meet the diagnosis of ME and not fulfil the case criteria for CFS, while the diagnosis of CFS is largely insufficient to be qualified as a ME patient. ME is a neuromuscular disease with distinctive muscular symptoms, including prolonged muscle weakness after exertion, and neurological signs implicating cerebral dysfunction, including cognitive impairment and sensory symptoms. The only mandatory symptom of CFS is chronic fatigue. Chronic fatigue must be accompanied by at least four out of eight nonspecific symptoms: substantial impairment in short-term memory or concentration, a sore throat, tender lymph nodes, muscle pain, multijoint pain, a new type of headaches, unrefreshing sleep, and postexertional “malaise” lasting more than 24 h. So, regardless whether the name ME is appropriate or not, ME is not synonymous to CFS. That is not a matter of opinion, but a matter of definition. Due to the definitions of ME and CFS, “ME/CFS” does not exist and cannot be replaced by a new clinical entity (SEID: Systemic Exertion Intolerance Disease), as recently suggested.

The comments came from the Institute of Medicine, a prestigious US government advisory group. Yesterday it announced five main symptoms as simple criteria for doctors to use in making a diagnosis.

Oxford research claiming exercise and positive thinking can treat ME may help some people, but the rest of us are still waiting to be taken seriously

Just about everyone knows the feeling of fatigue—and knows it all too well. But for some people (and four times as many women as men), extreme exhaustion stems from a much larger medical issue. A poorly understood condition, chronic fatigue syndrome (CFS) is a complicated disorder characterized by persistent, debilitating exhaustion that gets in the way of day-to-day events. The condition is also known as systemic exertion intolerance disease (SEID) or myalgic encephalomyelitis (ME). Chronic fatigue syndrome is often abbreviated as ME/CFS. Daily life becomes difficult, if not impossible. Patients can become sensitive to simple activities like going to work or even walking up the stairs, and it can take days to recover from these small amounts of exertion. Estimates of the number of people in the United States burdened range from less than one million to 2.5 million. For around 25 percent of cases, symptoms are so severe that victims remain bedridden or house-bound, and suicide risk is elevated. For a long time, physicians dismissed symptoms as being psychological, but the scientific community’s understanding of the condition has greatly advanced. The cause of ME/CFS is unknown, but there are many theories—ranging from viral infections to psychological stress. If you’ve […]

According to one expert, the term 'chronic fatigue syndrome' adequately describes our current understanding of this illness for which effective treatments are available.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—commonly referred to as ME/CFS—is a legitimate, serious, and complex systemic disease that frequently and dramatically limits the activities of affected individuals, says a new report from the Institute of Medicine. The committee that wrote the report developed new diagnostic criteria for the disorder that includes five main symptoms. In addition, it recommended that the disorder be renamed "Systemic Exertion Intolerance Disease" and be assigned a new code in the International Classification of Diseases, Tenth Edition.

The Institute of Medicine (IOM) recently released their report regarding a new name (i.e., systemic exertion intolerance disease) and case definition for chronic fatigue syndrome (CFS). In brief, the IOM proposed that at least four symptoms needed to be present to be included in this new case definition

New research demonstrates numerous biological abnormalities accompanying and after even minimal exertion among patients with chronic fatigue syndrome, also known as myalgic encephalomyelitis.

Chronic fatigue syndrome has been renamed: systemic exertion intolerance disease. We’ll look at a new name and new diagnosis.

Chronic fatigue syndrome is a disorder characterized by extreme tiredness that can’t be explained by an underlying condition. This means it can be difficult to diagnose.

The latest news and information on Chronic Fatigue Syndrome. Learn about what causes Chronic Fatigue Syndrome, the symptoms, treatment, drugs, triggers, and tests for Chronic Fatigue Syndrome.

So when I first saw the name "Systemic Exertion Intolerance Disease" I was relieved: At least the word "fatigue" was gone! No more "Chronic Fatigue Syndrome" slurs for us, I thought. Acknowledgement at last? The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness. The word "disease" in there pleased me in those first moments too, and the fact that the disease is recognised as "systemic" - that's got to be good too? Right? Finally add in the fact that the name describes patients' intolerance of exertion, and you'd think I'd be totally won over by the name.... But I'm not! SEID - Systemic Exertion Intolerance Disease - still sounds a clumsy, descriptive and not a really serious name. It doesn't portray any of the seriousness of the very severe end of the spectrum, and implies that if we just avoid exertion then we will all be fine and dandy. Would folk with Diabetes be delighted with "Systemic Sugar Intolerance Disease"? I doubt it. Nice name or not, the IOM report on redefining ME/CFS was released yesterday 10th February 2015. This 304 page report could have far reaching implications for ME patients world wide. A Key Facts document and a Power Point presentation summarise the main findings of the committee. The first thing I wanted to see was how the IOM proposed to diagnose the disease. And again, at first glance this makes a lot of sense. Click on any image to make larger Yet, for me, I was a little uncertain about the "unrefreshing sleep" compulsory criterion. At the time I was diagnosed my sleep was okay. It is less good now, because I tend to wake much earlier than I want. So am I refreshed? Well I'm better than if I'd stayed up all night, but I'm still "ill".... does that count as "unrefreshing sleep"? Then the question of what is meant by "Post Exertional Malaise". If I exert myself I my body has two responses: one at the time, when my heart races, and I quickly run out of steam; and the other two days later when I feel like I am drunk, have flu and a migraine all at once! This descriptor doesn't seem to insist that the patient has a delayed response, similar to the type revealed by the 2 day CPET test. So could a patient, with symptom exacerbation just at the time of exertion or in the few hours directly after exertion, qualify as having PEM for the purposes of this diagnosis? And if so, is that description true to what many experts feel is the central issue of Myalgic Encephalomyelitis? And why again was the perfectly adequate name of Myalgic Encephalomyelitis, recognised by WHO since 1969, dropped? Much debate has been stirred up within the ME community, and already Dr Enlander has spoken up to state his concerns: And the media? Well they just think, new name for old condition.... so they look up all the old CFS material and tell the populance that Cognitive Behaviour and Graded Exercise Therapies are known to help. I sure hope that some-one in authority will consider putting the press right on that issue fairly quickly. Sadly, when a question about GET was asked at the presentation of this report, the committee evaded answering and said that treatment recommendations were outside of their remit. Ho hum! So, looking on the bright side, what might be good about this report? Well one good thing I can see, is if this report brings in its wake a huge dose of funding for real biomedical research! As for the new name? Well, now that I've thought about it overnight, I realise that it is not a name I will ever voluntarily use to describe the disease that afflicts me. I have Myalgic Encephalomyelitis!

Following an Institute of Medicine (IOM) committee report, challenging aspects of ME/CFS could change for Canadians who suffer from it.

What we do and don’t know about dietary science.

Patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) showed clinical improvement after extended treatment with the anti-B-cell monoclon ...

So when I first saw the name "Systemic Exertion Intolerance Disease" I was relieved: At least the word "fatigue" was gone! No more "Chronic Fatigue Syndrome" slurs for us, I thought. Acknowledgement at last? The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness. The word "disease" in there pleased me in those first moments too, and the fact that the disease is recognised as "systemic" - that's got to be good too? Right? Finally add in the fact that the name describes patients' intolerance of exertion, and you'd think I'd be totally won over by the name.... But I'm not! SEID - Systemic Exertion Intolerance Disease - still sounds a clumsy, descriptive and not a really serious name. It doesn't portray any of the seriousness of the very severe end of the spectrum, and implies that if we just avoid exertion then we will all be fine and dandy. Would folk with Diabetes be delighted with "Systemic Sugar Intolerance Disease"? I doubt it. Nice name or not, the IOM report on redefining ME/CFS was released yesterday 10th February 2015. This 304 page report could have far reaching implications for ME patients world wide. A Key Facts document and a Power Point presentation summarise the main findings of the committee. The first thing I wanted to see was how the IOM proposed to diagnose the disease. And again, at first glance this makes a lot of sense. Click on any image to make larger Yet, for me, I was a little uncertain about the "unrefreshing sleep" compulsory criterion. At the time I was diagnosed my sleep was okay. It is less good now, because I tend to wake much earlier than I want. So am I refreshed? Well I'm better than if I'd stayed up all night, but I'm still "ill".... does that count as "unrefreshing sleep"? Then the question of what is meant by "Post Exertional Malaise". If I exert myself I my body has two responses: one at the time, when my heart races, and I quickly run out of steam; and the other two days later when I feel like I am drunk, have flu and a migraine all at once! This descriptor doesn't seem to insist that the patient has a delayed response, similar to the type revealed by the 2 day CPET test. So could a patient, with symptom exacerbation just at the time of exertion or in the few hours directly after exertion, qualify as having PEM for the purposes of this diagnosis? And if so, is that description true to what many experts feel is the central issue of Myalgic Encephalomyelitis? And why again was the perfectly adequate name of Myalgic Encephalomyelitis, recognised by WHO since 1969, dropped? Much debate has been stirred up within the ME community, and already Dr Enlander has spoken up to state his concerns: And the media? Well they just think, new name for old condition.... so they look up all the old CFS material and tell the populance that Cognitive Behaviour and Graded Exercise Therapies are known to help. I sure hope that some-one in authority will consider putting the press right on that issue fairly quickly. Sadly, when a question about GET was asked at the presentation of this report, the committee evaded answering and said that treatment recommendations were outside of their remit. Ho hum! So, looking on the bright side, what might be good about this report? Well one good thing I can see, is if this report brings in its wake a huge dose of funding for real biomedical research! As for the new name? Well, now that I've thought about it overnight, I realise that it is not a name I will ever voluntarily use to describe the disease that afflicts me. I have Myalgic Encephalomyelitis!

Chronic disease is pervasive. Environmentally and medically induced mitochondrial damage may be responsible. It's time for a paradigm shift in medicine.

The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.

Disorders associated with dysfunction of autonomic nervous system are quite common yet frequently unrecognized.

ME/CFS Illness Management Survey Results “No Decisions about me without me” The ME Association just released the results of a patient survey taken in 2012 that covered management and self-management courses commonly offered to patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Post-viral Fatigue Syndrome. The report (available in full on the ME Association website) … Takeaways from The ME Association's CBT, GET, and Pacing Report Read More »