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LR's avatar

Thank you for this article Hillary. It continues to anger me that it's been 40+ years and there's been no concrete support or major breakthroughs for this terrible disease. What a disgrace.

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Catherine Clapton's avatar

What a frustrating phenomenon Myalgic Encephalomyelitis and politics worldwide is! I fear this is the way humanity will die, stealthily through the back door whilst everyone's looking after no one 💔 😔

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Allison Haynes May's avatar

Thank-you Hillary. This topic is so important. The willful neglect of studying it demonstrates yet again how unethically we have been treated (not treated) for decades. Infuriating.

Keep on writing! Too many people are unaware of these issues.

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Hillary Johnson's avatar

Sometime in the future, medical historians and medical ethicists will struggle to understand how and why this happened. The injustice is so brazen.

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Travis Christian Lau's avatar

I adore you and think about you every day of my life.

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Pepper1252's avatar

Blows my mind that RBC abnormality is not being pushed again in the research community now

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Eleni's avatar

My very first ME symptom was an inability to stand for more than a few minutes before feeling I was about to faint. I’d have to lie down immediately. Along with that came the classic ME symptom not much mentioned anymore of feeling I was not in fact fainting but actually dying…

I have another classic symptom which is an inability to tolerate most drugs. They are ok for a day or two then I feel like I’m being poisoned. I imagine that could be a result of having less blood? Would that not magnify the level of drug in the system to a whole new level? Which after a day or two would presumably be quite toxic if your system doesn’t clear it quickly enough?

I also have chronic odema in my legs and ankles which is not of the usual type. Doctors can’t figure out why. Could that be due to the fluid leak mentioned here?

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RisewithME's avatar

Blown away. Diagnosed just a few months ago but realizing I’ve been dealing with this for years. Thank you for the work you did in this article.

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Julia Lindsey's avatar

Great article. Where is Part I?

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Regina's avatar

Thank you! I believe I have ME/CFS and I have had some issues with MCV values in blood tests, which has to do with the uniformity of sizes in red blood cells. They haven’t been too far off, but I am going to use this information to see if my hematologist can look into it further.

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