There's a lot of people with severe and very severe ME. Please consider them. Don't forget about them, about us. It's not just 10 people. It's millions of us. Missing. Here but not really here
We do exist. There's so many of us
the representation lacks a lot of the reality of the numbers, the %, the reality of severe and very severe people with #MECFS
Those who are bedridden. Almost paralysed. Who can't go protest. Who do not have carers. Can't express themselves. Are kept isolated.
Who can't draw on pillow cases.
We, you, need to include those in your fight. And realize that's they're not rare cases. We're millions.
Especially if you want to not repeat History on erasing their existences and experiences, and start from beginning every time. Too many people went through hell for the world to erase them. The knowledge needs to get gathered. The whole situation of gaslighting pwME needs to end
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What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS. #meawareness
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"
Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
My doctor dismissed me, my wordsw my symptoms, for 10 years (20 if you take the rest) then didn't see me for a few years.
Fast forward i'm very severe ME almost dying. He came because i've been almost dying for months. After YEARS.
few years.
Well I became housebound then completely bedridden, bedbound, because they didn't listen to me.
This was such an insult.
When I gave him (again) the list of symptoms I've been having and complaining about for 10 years, the reply was so insulting.
I was 100% bedridden. For weeks, months. At this point. In the dark. No energy. Difficulty breathing and speaking. Out of breath. Hurting like hell. Lost a lot of weight. Dehydrated.
He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,