Ramy2.0
@Ramyisback
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I am back from the twitter grave, with memes, and other stuff about mecfs and long covid.
Joined June 2023
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My lawyer (she used to sit behind me in law school lol) told me that one of the reasons I got approved is because my doctor was very specific in her notes about my limitations. For example being bedbound 23 hours a day, being only able to shower once a week, not being able to 1)
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I couldn't do. So when you go to the doctor please ask them to write down your limitations. Disability is all about proving functionality, if you have terrible blood labs but no notes about how little you can function then they will deny you most likely
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To walk more than a couple of minutes. Unable to stand without my heart rate spiking. I also had proof that I wasn't able to continue my job and I was only able to be productive 1 hour a day. A sedentary job legally requires you at least 6 hours of sitting, which clearly 2)
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I developed long Covid after my infection in March of 2020, I was able to somehow work remotely to some extent for 2 years while having periods of months in between when I had to go off work completely. I managed to work a few hours here and there, from my laptop in bed, until 1)
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You know what is funny, when I couldn't walk straight in 2020 and I was sent to the mental ward by a team of neurologists, you know who got me out? A psychiatrist! I remember him telling me, dude, what are you doing here? Lol. You are free to go
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I have been accepted into the ampligen trial. Tomorrow I receive my first infusion (placebo or ampligen) I don't know
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One day I just collapsed. In fact I spent 6 months off duty because I could barely function. When I got back I was able to give a few more months before collapsing again. It totally screwed me up. To see plans for disabled people to "work from home" is an outrage and appalling
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It's been 2 months since the conclusion of the Ampligen trial. So how am I doing? I am better now than I was before the trial but not as strong as when I was on the trial. I crash less now, generally have more energy, my baseline has improved. 1)
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Last infusion, will miss this trial. Has been a privilege to participate
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Had I rested instead of work maybe I could have gotten better but no. To my friends in the UK, I am so sorry, this is like top evil shit, I hope something stops this
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Hmm I have hesitated to share this but here it comes, it is possible I will get into the ampligen trial starting next week. I went to the screening yesterday and they told me I will likely get in. If so, I start getting infusions (placebo or ampligen) as soon as next week 1)
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I feel like the entire world has gone crazy. Society has accepted living with a god awful disabling and killing virus and pretend it is ok. Well, I was always the weird kid but now I think I am perhaps one of the few sane ones left 1)
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Is that what you want to do with your life? Spend it in bed?-My dad
Me thinking-Yeah man I really want to spend my life in bed....🤦♂️
I am so tired of this
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I am 34 and live with my mom, so what? Normalize living with mom or dad, nothing wrong about it. Also I don't have a basement, but if I had one, what's the problem with it? Basements aren't inherently bad.
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I wished cardiologists would focus on Pots more, sinus tachycardia without atrial fibrillation doesn't necessarily mean the patient is nervous, please see if the heart rate spikes when the patient stands up and that spike is sustained. Thank you for coming to my cardiology talk
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In my wildest dreams did I think I was going to be able to walk this much again. I hope it continues, don't want to jinx it.
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Honestly a bit sad that I am nearing the completion of the Ampligen trial. It has been a great experience to be able to participate. I don't even mind the IV lol. I think Ampligen and BC007 are our best hope.
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I have been living with a debilitating chronic illness for 3 years which has literally tortured me! But some adults are throwing a fit over a possible return to masking? Such cry babies 👶
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The highlight of my day is going to the corner of the street, sitting down and contemplating the scenery. That's it, going to the corner of the street. But months ago I wasn't able to even do that. So cheers for this corner
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Appointment, everyone is maskless but me and another lady I saw earlier lol
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Because I improved to some extent, father wants me to return to work. Hmm no, I am still quite sick. Why can't I improve a bit without having a big fight? This is so dumb. I am so done with this disease.
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Whatever it was that I got, it made a good and positive difference and I am so glad
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I notice that many of us feel like crap in the morning and much better at night. Could this be due to cortisol?
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The benefits of the trial continue to last after it stopped. I stopped in early October but my steps so far this month are the most I have recorded. That's not to say I am not sick as hell, but I am better than before.
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My best friend who was going to come visit me, I haven't seen him in years, he got sick a few days ago and I asked him to do a covid test and he did and it was positive. I won't be able to see him now. I hate covid!!!
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I lost my former account and together with it most of my connections. Can someone retweet this. I am Ramy, I make memes and stuff.
#Longcovid
#mecfs
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While I cannot talk about symptoms or how I feel, I can post pictures of my arm lol. Had my second infusion today (placebo or ampligen)
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@weeklyshowpod
Please cover the history of MECFS and the medical neglect facing these patients.
#GreatestMEdicalScandal
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Damn, this is a bit disappointing for me, especially given the fact I was a responder. It took me about 12 weeks to notice an effect but as you can see here, in September and October while I was on the drug, it worked miracles, at least as illustrated in the number of steps
Ampligen phase 2 study results are out. The company saw hints of success, but the primary endpoint was not met. These do not look like results that will lead to any sort of expedited approval
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This month marks 3 years since I became severe. 3 years spent mostly in bed, 3 years unable to play soccer or go to the beach and swim. 3 years is a lot, it is 1/10 of my lifetime. I won't get that time back
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Healthcare should not be tied to employment. It is ridiculous. I haven't worked since March and have paid for everything with my savings out of pocket. I would have saved so much if there was a program which gave me some assistance for a while. But no, sighs. I hate this illness.
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I remember that while on Ampligen, one day I walked like 10 thousand freaking steps! Now I can only walk 1000 steps a day on a decent day. Baby come back! Lol 😂
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Happy
#MEAwarenessDay
. This person is long gone. Maybe one day I will recover, until then I just remember my old life
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Just wanted to share I managed to put up a billboard in Miami on this location with this design from longcovidmoonshot. It will be up for a few days
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The little things make the biggest difference, 10 minutes more on the piano, a little bit more of walking, a shower twice a week instead of once, I am grateful for the little things.
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The trials for Ampligen and BC007 should absolutely have their patients wear a device like Garmin or Fitbit to track steps. This wasn't part of the trial I was in. Luckily I wore one myself and went from 60,000 steps a month to 140,000 steps at its peak.
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It hits me that I don't go to family events anymore. I didn't go to Thanksgiving, not going for Christmas, or New Year's. I am doing it to protect myself but damn, it is a lonely ass experience.
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That's correct, Ampligen was a miracle for me, I once walked 10,000 steps in a single day while on it.
@cstroeckw
We know where to start. Ampligen. It works miracles for a subset and we need to figure out why.
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So it turns out they did say it is better not to share info about the ongoing process as it might affect the trial. Sorry about that guys. Try to be patient with me for the next 3 months. I promise when they let me share the info I will let you guys know how I feel
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Time flies, next week I am done with the Ampligen trial. It has been a good experience.
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This is more or less, my improvement visualized in terms of steps. In September something kicked in. I will just leave it at that. Still quite sick but what a difference.
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Why is Germany only investing 15 million dollars on MECFS? They are the richest country in Europe for God's sake. Who is making the decisions there? It makes me so angry! Gosh! Are governments around the world doing this on purpose or something? Wtf!
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It really worries me when the very existence of our disease is attacked by someone with nearly 3 million followers because these people have a big platform. We work hard enough to get our disease taken seriously, hopefully reason prevails.
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Gosh I miss the Ampligen walks...that's how I call the walking routine I used to do this summer when I felt better 🤣
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I really want to give a shot out to all the parents with long covid or mecfs. I don't know how you do it, it is hard enough to look after yourself with this illness, imagine caring for kids. I don't have kids but I might adopt a cat one day lol
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I can't stress enough how important it is to have your doctor write up your limitations for purposes of disability. This is a form I have, I will share it in pictures cause I can't upload the document. But doctors need to be thorough. Each visit you must share all the limits 1)
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Does anyone keep overexerting because they are bored as hell? It happens to me a lot lol
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This card took me 3 years of law school and two bar exams to earn, just for COVID to fuck everything up. 🤡
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Aside from an income, now with my disability approved I can finally have healthcare again! And food stamps! I might be able to finally get a CT scan for my kidneys. I am really thrilled
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To give you a sense of perspective, on how little they give a shit about us. It cost Hollywood 356 million dollars to make the movie Avengers: Endgame. Meanwhile, Germany, a freaking entire country, is only dedicating 15 million for MECFS....over 3 years 🤡🤡🤡
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If I get healthy from this trial and I don't know if that's gonna happen but if I do, I promise to devote my energy to this cause. Let's see. Even a small improvement, if I can go back to work I can donate to the OMF
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My mecfs doctor says my prognosis is poor. Well I knew that already, four years of illness. I did a standing test today. Went to 130 beats in 3 minutes. My blood pressure spiked. I have hyper adrenergic pots she says.
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Certainly a positive development, however I do remain on the moderate to severe spectrum. But the fact alone that my baseline remains higher is very encouraging. I feel that with proper rest I might be able to improve now, before the trial I didn't have any hope
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I can say the same thing for me. The drug led to an improvement, to be precise, I doubled my steps according to my Garmin. In one months I went from 61000 steps to more than 120,000. So while not a miracle, it was a blessing
Yesterday I completed the
#Ampligen
clinical trial for
#LongCovid
. An update thread:
#MyalgicE
#pwME
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Dear doctors, does your profession require you to continue learning after you graduate? I know we lawyers have to do CLE requirements. Do you guys have something similar? Because GET has already been discredited for people with PEM. See NICE guidelines, see also CDC guidance
So I met with a specialist today at the long Covid clinic and guess what they prescribed me after telling them I'm deteriorating so much I am 98% bedbound where I could walk and drive 7 months ago .... GRADED EXERCISE THERAPY AND CBT. I can't deal with this
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It is interesting, I have long COVID that is severe, it is hard to walk more than a block (although I recently improved a bit) Nonetheless I am very debilitated, however I can listen to music all the time. Am I the only one like this?
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Today in the blood lab:
People coughing unmasked, nobody cares. However, the minute people see me (a masked person) they all walk away, like avoiding me. Lol. So dumb. They would rather breathe the coughing from the unmasked person, society is really dumb
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In light of the new study about blood transfer from long haulers. Lol I know I wouldn't want to receive my blood if I was a mouse
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Does anyone else with long covid/mecfs have crappy ass cholesterol?
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Now that we have 200 million dollars, please let's fund the proper research this time
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This is really interesting and I figured out why my oxygen drops so low. It is not a lung issue. It is a position issue. If my oxygen was below 80 I would be in the hospital. Instead, what I think is happening is that oxygenated blood isn't getting to the finger at certain angles
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I was prescribed some microdose Ketamine for my mood but if I find it helps with mecfs symptoms I will update
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I just got a call from the ampligen trial, I am posting this with their permission. They are looking for two more subjects to enroll in the Davie location. If you are interested reach out to me
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So I have completed the 1st week of the trial. 11 more weeks to go. Gotta say it is quite exhausting to drive one hour there (on a lyft), stay there another hour and then come back another hour. Lol, pray for me 🫠
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Happy St. Valentine to everyone, from my cognitively impaired brain. Here is my favorite Chopin piece, with a few errors along the way courtesy of my brain fog 😂
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I had to go to Walgreens to buy my sleeping pills. Had to stand there in a line and it was awful, just felt awful. I hadn't left the house in days and yet standing there in a line felt like death. I have been sick almost 4 years already, I am so sick of this crap.
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I have been able to start taking little walks to the corner, maybe my cells remember some of the Ampligen I took around a year ago? Strange it seems because this sudden small improvement is taking place months after I stopped the trial 🤔
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You know what sucks? When family members get upset because you share things about your condition online. You know what that tells me? That they feel embarrassed by me, that's what. It sucks
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Knowing that Ampligen is out there and it worked on me and I could be living my life semi normally now but noooo....FDA never approved it so i just rot in here 🙂
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I have endured an unfathomable loss, the loss of my former self. I can barely get out of bed, I have about an hour a day where I can do so. Yes, my life is bad right now, quite bad, and no, I am not being ableist for lamenting this monumental loss, I am a shadow of my former self
But to say your life is bad because you are disabled is ableist. Disability isn't a bad thing. It is a neutral thing. Sure you have struggles abled people don't have, but everyone has certain struggles.
We can fix the struggles without erasing disability.
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I don't know how us humans will be able to tackle threats like climate change when our attention span isn't even enough to tackle an ongoing pandemic. I am sorry but I think we are fucked. One of the reasons I am not having kids, I don't want them to live in an apocalypse
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"You are the biggest punishment i have in my life!"
Well dad, maybe invent a time machine, go back to 1988 and don't have sex with mommy, that way I won't be born, anyways i dont want to be here
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The health organizations have become a bunch of psychos, saying it is ok to catch a life altering virus that gives you a 1 in 10 chance of becoming permanently disabled. I think society is now inherently psychopathic, and I am moving to the woods if I ever recover
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Aside from the extensive listing of my limitations there was another thing my lawyer told me helped my case. It was the resting metabolic ratio test which shows a depleted energy state for me. This test is a good alternative to a 2 day CPET when you are too severe to do a CPET
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Long Covid Awareness Day. 2019, full of health. 2024, sick as hell.
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I don't know how much I will be allowed to share, but wish me luck that I get in. If I do, and there is no prohibition against sharing information, I will update on how I feel. For now, I will just hope I get in, looks like I am, fingers crossed
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Today I turn 35 and my mom made me a reel and it has this picture from 2019 when two dogs climbed on me hahaha 🤣 🐶
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To the "long COVID is not ME" crowd, if Ampligen (a drug that we know of because of MECFS and which treats MECFS) is approved and successful in treating long COVID, I can only guess you will stick to your guns and righteously deny the drug right? After all your thing is different
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The response from Marco Rubio to my long COVID moonshot letter is so pathetic. Doesn't even address the subject, and all it talks about is vaccine mandates. Bro where did I mention vaccine mandates in my email? What a moron, but this is Florida so yeah
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It is interesting that I experienced a significant increase to my baseline for a few days and then it all crumbled back to the old baseline. This disease is so weird. At least I had a few good days
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Actually the real OGs are the people with MECFS from before 2020
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I miss walking around the neighborhood 🫠 I hate being in my room all day
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