CHRONIC FATIGUE SYNDROME
M.E. - Myalgic Encephalomyelitis
**My = muscle
Algic = pain
Encephalo = brain
Mye = spinal cord
Iitis = inflammation**
ME/CFS are the same spectrum of disease.
MEpedia WIKI for ME/CFS
Question and Discussion Posts Welcome!
**Header: fMRI Brain Scans -
Top: Control Patient - Bottom: ME/CFS Patient
Image Courtesy Of: Stanford ME/CFS Initiative, Dr. Montoya** NY Times Article w/ Brain Scans (Image download from NY Times - Michael Zeineh)
ME/CFS - Estimations as of 2015 - Worldwide 20 Million Sufferers
I also Mod /v/MyalgicE /v/SEID /v/Fibromyalgia /v/MedicalResearch /v/ForgottenPlagueDoc /v/UnrestDoc
Discuss, Post Articles, Blogs & Latest Research
DISCLAIMER I am not a Medical Doctor nor do I work in the Health Field. None of the information I or others in this subverse post or link should be taken as medical advice. Always consult your healthcare professional when making health, medical and medication decisions. - LemonCookie24
Trolling in this subverse will get you an immediate ban without warning. There is enough room on the internet to troll without coming here to bother patients, caregivers and others concerned and interested about a very serious illness.
ANYONE promoting alternative therapies that have AMAZINGLY worked for you; think twice about posting here. I will NOT tolerate this subverse being used for your being able to come up with the answers when the absolute best of the best are working to research and resolve this illness yet have not come up with your treatment/cure. I will ban you for misleading and your possibly injuring very sick people.
view the rest of the comments →
[–] 3312705? [S] ago
Transcribed by: Firestormmer on Twitter
Q "One of the most common questions patients have when they come to my office is can I be cured?"
A "This is a difficult question because right now with our state of diagnosis, maybe late in the disease, most studies show that patients who come to a specialist office have a very low likelihood of cure from their illness."
"This may change when we are better at diagnosing this illness early or when we develop other tools for treatment. But as it stands now the focus is not on cure but I want to say that management, adaptation, gaining stability and trying to improve, can be accomplished with good supportive care. So, patients should ask not, can I be cured, but, am I doing everything possible to adapt, to treat my symptoms and to achieve stability, and maybe small increments of improvement."
Q "Are there treatments for ME/CFS?"
"Right now we don't have any direct curative treatments for ME/CFS. But don't underestimate the benefit of skillful management. I can tell you and I think my patients would tell you, at least where I practice medicine we have many tools. So we focus on some of the more manageable aspects of illness. We talk about deconditioning, that's one of them. Pain, we have very good tools for manipulating and modulating pain, particularly new tools for modulating pain that is hyperalgesia or pain similar to ? or other kinds of neuropathies. We have tools for sleep, it's challenging, but we can improve the quality of sleep and add some quality of life. And we have tools for cognitive impairment and for dysautonomias, for the autonomic aspect of illness. So we grasp on to as many aspects of illness as possible and try to modulate the severity of those symptoms to improve quality of life while we are waiting for the direct treatments that go straight to the pathophysiology."
Q "Is ME/CFS progressive? Can this be fatal?"
"Sometimes. Sometimes this illness can be progressive in spite of everything we do. And certainly there are cases of fatalities surrounding this illness. But many times those may be patients who did not have access to good supportive care. I have come to feel that the secondary problems that develop around this illness are very severe and important, and they create immense morbidity and a higher chance of mortality. Some which we might be able to prevent and some maybe not - that includes what happens with deconditioning, with weight gain - and all the illnesses related to weight-gain like diabetes, end-stage problems related to sleep apnea and diabetes etc. I have patients whose main problem is now those overwhelming illnesses relating to their deconditioning and obesity even young people. We have issues around malnutrition and of course the depression and despair that comes partly from situational stressors but also from the severity of this illness and lack of good care and immediate treatment; adds severe morbidity to this illness. That is something we can do a lot more about."
Q "Is ME/CFS contagious?"
"So far there have been really no studies or I don't think there's any evidence to suggest this illness is contagious. We often see it occurring sometimes in the familial setting and there may be an infectious agent at some stage in this illness that could make someone sick but in a simpler form. But right now in its' severe form it does not appear to be contagious at least not in the way we think of contagion."