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http://www.thebody.com/content/81016/people-with-chronic-fatigue-millionsmissing.html?comments=on
Using Lessons From HIV Activism, People With 'Chronic Fatigue Syndrome' Fight for the #MillionsMissing
By Olivia G. Ford From TheBody
May 9, 2018
Scott Simpson was once a triathlete competing in events around the world. Nowadays, it's a triumph for him to climb two flights of stairs without landing in bed for days.
"With triathlon training, I'm always feeling tired, so I'm very familiar with what tired feels like; this was qualitatively a different experience," Simpson recalled recently. Avid TheBody readers might remember Simpson's inspiring, often hilarious blog documenting his passion for triathlons, and his travails as a "former party boy" turned dedicated athlete living with HIV. The blog was active from 2009 to 2011. One day in 2012, in the midst of preparing for a big triathlon event, Simpson woke up more ill than he had ever been before.
"At the time, I thought, this is like a cellular thing ... I am not just tired, I am without energy." It didn't take Simpson long to figure out that he got sicker after exercising -- and that the more he exercised, the sicker he became. Now, only the slightest amount of exercise is possible for him. If he pushes past his limit, he said, "I will have to spend a lot of time horizontal, so that I am not doing more exertion by sitting up."
Simpson was describing post-exertional neuroimmune exhaustion (reduced functioning and greater illness after even minor physical or mental activity). This is the symptom that people living with myalgic encephalomyelitis or ME -- sometimes (controversially) known as chronic fatigue syndrome (CFS) -- have in common. Because of this, Simpson figured out that he probably had ME within weeks of his first bout with the condition, but he didn't receive an official diagnosis for five more years. He went to doctors, bringing with him the International Consensus Criteria for ME, which he had found in his research; the document was ignored.
More at the link.
(Kudos to "Simpson" for being so generous with this journalist. I can only imagine the Simpson in question is @ScottTriGuy !!)
Using Lessons From HIV Activism, People With 'Chronic Fatigue Syndrome' Fight for the #MillionsMissing
By Olivia G. Ford From TheBody
May 9, 2018
Scott Simpson was once a triathlete competing in events around the world. Nowadays, it's a triumph for him to climb two flights of stairs without landing in bed for days.
"With triathlon training, I'm always feeling tired, so I'm very familiar with what tired feels like; this was qualitatively a different experience," Simpson recalled recently. Avid TheBody readers might remember Simpson's inspiring, often hilarious blog documenting his passion for triathlons, and his travails as a "former party boy" turned dedicated athlete living with HIV. The blog was active from 2009 to 2011. One day in 2012, in the midst of preparing for a big triathlon event, Simpson woke up more ill than he had ever been before.
"At the time, I thought, this is like a cellular thing ... I am not just tired, I am without energy." It didn't take Simpson long to figure out that he got sicker after exercising -- and that the more he exercised, the sicker he became. Now, only the slightest amount of exercise is possible for him. If he pushes past his limit, he said, "I will have to spend a lot of time horizontal, so that I am not doing more exertion by sitting up."
Simpson was describing post-exertional neuroimmune exhaustion (reduced functioning and greater illness after even minor physical or mental activity). This is the symptom that people living with myalgic encephalomyelitis or ME -- sometimes (controversially) known as chronic fatigue syndrome (CFS) -- have in common. Because of this, Simpson figured out that he probably had ME within weeks of his first bout with the condition, but he didn't receive an official diagnosis for five more years. He went to doctors, bringing with him the International Consensus Criteria for ME, which he had found in his research; the document was ignored.
More at the link.
(Kudos to "Simpson" for being so generous with this journalist. I can only imagine the Simpson in question is @ScottTriGuy !!)
