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[–] 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."