POTS & MECFS Billboards
@Perospumpeh
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23 years old, POTS & 20+ symptoms from Covid since January 2021. Not vaccinated.
Joined August 2022
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Until now, 18 billboards (or more) have been set up worldwide
(UK, Canada, USA).
(In about 10 days, there will be 5 more billboards in the UK)
The more billboards around the world, the greater the chance of finding a cure.
Together towards a cure!
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This is often what the hand of someone with autonomic nervous system dysfunction looks like. It's purple with white spots. The purple color indicates too much blood in one place that doesn't return to the heart properly. The white spots represent a lack of blood in the tissues.
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Here is a list of things that my brother, six people I've been in contact with over these three years, and I, have found to offer ZERO improvement, and in some cases, have even worsened the situation.
(some things had temporary improvement)
#POTS
#MECFS
#LongCovid
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I will say this again, and I will repeat it 100 times.
If the BC007 phase 2 trial is successful, we must submit a mass request for emergency approval.
Every month, every year we wait, we lose more and more young lives to suicide/euthanasia.
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The first results of the drug BC007 will be out this year
Waiting for 3, 4, or more years for the drug to come out when it already exists is absurd
What are your suggestions to push for the release of the drug next year if it's successful? Billboards?
#LONGCOVID
#BC007
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Three distinct groups of passionate football fans have rallied to support their friends affected by CFS/ME
Let's join hands to spread awareness about Long Covid (CFS/ME and POTS)
and to exert great pressure on the world to find a cure for us ASAP!
#MECFS
#POTS
#LONGCOVID
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I hate false positivity like "people recover from CFS", "it just takes time".
Time? How much? 30? 50 years?
To be precise, for me, it's only getting worse over time. In the first year, I had 5-6 symptoms, now over 20.
Only thing that can help is future treatment!
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Supplements for Long Covid are an excellent source of vitamins to take money out of your wallet.
Unfortunately, this is a picture of desperate attempts in 2021 and 2022 when I thought could get cured.
Now i know that everything is a scam and only future can bring cure.
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Scientists and doctors should pay attention to every symptom of long COVID, and based on that, piece together the puzzle to conduct further research.
For example, like these visible veins on the palm of the hand. This is far from normal.
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Can someone explain to me why it's better to send young people to euthanasia than to give them a treatment that already exists and has shown excellent results?
I'm very angry at this completely dysfunctional world.
#BC007
#MECFS
#LONGCOVID
#POTS
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12 billboards and a moving advertisement (van) have caught the attention of Channel 4 News, BBC, and ITV, who made a report about Long Covid. So far, £10,500 has been raised. Please DONATE if you can, RT, and LIKE to attract as much attention as possible.
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Over 600£ in donations in the past few days, thank you to everyone who has donated, shared, and supported our campaign. 5 new billboards are going up in 7-8 days, as you know.
The next goal is the main streets of London.
Please RT, Like! Thanks!
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Who wants to support or share the billboard campaign for the UK, where 6 billboards have already been set up and in 10 days, there will be 5 more? After this, we plan to target the main streets of London!
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Every day, for 4 years now, this has been happening.
No one just decides one night to lock themselves in a room for years, trying every possible treatment unsuccessfully.
I and many others are on the edge.
The only way to escape from suffering is SUICIDE.
WE NEED TREATMENTS
I was approved for assisted suicide a few days ago...3rd times a charm I guess.. if only I could get people to actually listen to me and doctors to help.. taking these days to think deeply and self-reflect.
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@luckytran
Who wants to support or share the billboard campaign for the UK, where 6 billboards have already been set up and in 10 days, there will be 5 more? After this, we plan to target the main streets of London!
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Nearly 3 months ago, we started this campaign and, with your help through sharing, liking, and donations, we managed to set up 11 billboards. (United Kingdom)
I hope we can continue at the same pace, and our next goal is the main streets of London.
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I want to publicly wish a happy birthday to my friend
@AaronCa11
. He is definitely a man of his word and always ready to help, and he has done a great thing for the long COVID community.
Let's support his campaign, his effort, we are close to the goal!
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Another suicide occurred due to Long Covid conditions (POTS & ME/CFS).
People who claim to have Long Covid had give him advice on how they cured themselves using vitamins, time, etc.
FUCKING STOP.
THERE IS NO CURE NO MATTER WHAT YOU DO. No one has ever recovered from POTS&ME.
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We will lose thousands of young lives to suicide if we wait for the medicine for 5 years or more.
I don't know what more we need to do to prove that we need a serious approach and funding to find a cure.
We need cure NOW. Not in 5/10/15 years, NOW!
#MECFS
#POTS
#LONGCOVID
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Whoever can, start a billboard campaign, start a GoFundMe, and we'll all support it. Every contribution is crucial to get out of this hell as soon as possible. Unfortunately, nothing will happen on its own, so we must exert pressure on the world.
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One of the best ways to seek the cure is through billboards. In the UK, 6 have been set up so far, and in 3-4 days, 5 more will be installed. After that, our goal is the main street of London. To achieve that goal, we need your help. Please, retweet, like.
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There is no viral persistence in Long Covid, it is autoimmune disease.
POTS, ME/CFS can arise after a virus, vaccine, SFN, surgery, SNRI, car accident, trauma, Sjogren's, giving birth etc.
From the conclusion, we can see that it's about a trigger, due to genetic predisposition.
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I personally would skip every trial and try the drug directly.
For example, BC007.
There should be an option to try this drug with a signed agreement that everything is at your own risk, and of course, to pay a full price. I believe 99% of people would agree to this, right?
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No cure, no treatment, no relief.
Add gaslighting, hatred, and mockery.
And world wonder why people resort to suicide or opt for euthanasia.
#mecfs
#pots
#longcovid
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@AlexSprackland
I've tried all possible workout methods, and I thought I'd have a heart attack every time. Of course, these attempts weren't serious training, just some light activities
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@Emma40025133
Because that is not cure, far from it. Also it can make things worse permanently.
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When you're healthy, you think doctors are amazing, with vast knowledge.
When you face a serious health issue, you realize the majority of doctors are arrogant psychopaths without knowledge.
You spend 30 years learning just for the patient to know better than you.
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I got COVID again. My family transmitted the virus to me three times, despite wearing masks each time.
The conclusion is, instead of advocating for masks, focus on finding a cure, whether you wear masks or not, you will still get the virus multiple times
#POTS
#MECFS
#LongCovid
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🚨 VERY IMPORTANT🚨
Check out more on my friend's Twitter; he is the initiator of this:
@AaronCa11
GOFUNDME link: 👇
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If, for instance, Phase 2 BC007 is successful, why can't we, at our own risk, purchase the medication?
There are so many different, much more dangerous treatments available for much higher prices that are completely ineffective, such as HELP apheresis.
#MECFS
#LONGCOVID
#POTS
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I don't want to offend anyone or diminish their efforts, but this is by far the best billboard yet.
When people see "mask up, Long Covid", nobody cares, in fact, they'll make fun of it.
The billboard needs a purpose, and the purpose is finding cure, not wearing masks.
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When people say they've been cured of ME/CFS and POTS, I believe them as much as if they said they'd been cured of HIV, multiple sclerosis, Alzheimer's, Parkinson's, ALS, etc.
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To anyone who doesn't believe I'm sick, I can see in their faces that they think I'm a spoiled, incapable man living off my parents. I don't understand the logic behind that thinking, as if I would suddenly give up my active life overnight to lock myself in the house for years.
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Unfortunately, there are many people on Instagram (influencers) who fake having Long COVID. They record TikTok dances, travel,go out, all while claiming to be suffering from Long COVID, AKA CFS/ME and POTS. Such individuals create a false image and trivialize this serious illness
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For all those who think Long Covid is made up, let me prove to you that it exists, and there are many tests
In 2022, I received diagnosis from the doctor, neurocadriologist, that I suffer from dysfunction of the autonomic nervous system after seven different specific tests
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There's the misconception that LC affects 1 in 5 when it's actually 1 in 500. So when someone says they've recovered from LC, people think it's a joke illness, not realizing they didn't have MECFS and POTS but rather post-viral fatigue or some mild symptom that resolves over time
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@Kimsill8
To have a few beers, read a book, go to church on Sundays, and get married, all answers that i got from doctors
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We are fighting against people who don't believe in Long Covid, those who believe they have LC when they don't and claim it's easy to cure.
Despite all this, we are bedridden/housebound with many symptoms, witnessing injustice before our eyes.
If anyone is a hero, then it's us.
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I always emphasize that people should avoid SSRIs because of these issues, but I often get belittled.
But what's even worse is that people, even after seeing this, will start using SSRIs with the excuse "it won't happen to me," "every medication has side effects.
@AbudBakri
PSSD has completely shattered my life into pieces and I don’t think I’m going to survive if I e don’t get some serious research and medical help soon. (See my story):
Thanks so much for helping us raise awareness. It means a lot for me and everyone struggling with this hell. 🙏
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If you can, consider donating, RT, like.
Also you can start GoFundMe for billbaords in any country and we will support it!
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If someone mentions a protocol to you, that means it's a scam 100%
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Before trying any medication or supplement, research everything. A simple supplement called LIONS MANE, can ruin your life, just one capsule is enough to create chaos and cause irreparable harm. Similarly, with SSRIs.
Is it worth risking? My opinion is NO.
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I'm not saying Long Covid anymore, but rather dysautonomia, POTS, ME/CFS. The main reason is that nowadays, everyone talks about having Long Covid, thinking it's just about losing smell and taste, some mild fatigue after the virus, or minor symptoms that go away over time.
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I see that a lot of people don't know what mild, moderate, and severe mean.
Mild LC:
You can't work, exercise, you are mostly at home.
Moderate LC:
You're having a hard time functioning at home; you need home care.
Severe LC:
Completely bedbound, full time home care
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Autoimmunity is the root cause. Scientists should focus on that. On autoantibodies. Not on things we've already tried a thousand times, like antivirals and other nonsense.
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@GeorgiParvanov4
I understand you, I've been in this for 3 years, and there are moments nearly every day when I think about it... I don't know what to say, but hang in there a little longer to see what the future holds for us.
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Any study or research that doesn't mention dysfunction of the autonomic nervous system is, in my opinion, doomed from the start.
And from what I see, 95% of studies don't mention it, which is why we're still where we are. People still don't know what long COVID is.
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CAR-T therapy treats/puts in remission Lupus, myositis, Sjogren's syndrome, scleroderma, myasthenia gravis. Therefore, I would like to see if it can do the same for long COVID (ME/CFS & POTS).
#MECFS
#POTS
#LONGCOVID
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Why is money being spent on trials that thousands of people have already tried and it didn't work? About 95% of current trials are a big miss, waste of money and time.
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If someone is in contact with a patients from the BC007 study, please share their experience.
BC007 is our last hope.
#POTS
#MECFS
#LONGCOVID
#BC007
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Why can't we all mass-submit requests to try BC007, of course, paying for it and trying it at our own risk?
Would we achieve anything with such a request?
I don't see what benefit we have waiting 3-4 years if the drug already exists and potentially is a cure.
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@robotnix76
Beta blockers may help with POTS, but it's all minimal. Because POTS isn't just an elevated pulse; it's dysfunction of the entire nervous system, resulting in reduced blood flow to cells and the brain, so pulse is just one of many symptoms occurring in the body.
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You are absolutely right, Long Covid doesn't destroy lives; it's just that some opt for euthanasia, some commit suicide, most spend their best years in bed, and others can't leave their homes. But all in all, when you look at it, it doesn't destroy lives, no, no, it is all good
Also because it's on my brain, I don't like things that say Long COVID ruins lives. I get how upsetting it is to have huge life changes due to health. I have a disease that does some horrifying shit to my body. But my life is valuable as fuck, not ruined.
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I don't believe in improving quality of life. Why? Because you can't have a little dysfunction of the nervous system. Either you have it or you don't. The nervous system is the driver of all our symptoms, and until it's functioning properly, we won't leave the bed/house.
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This is one of the best things I've seen in years
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Everything except BC007 is too expensive and far from being a cure. Efgaritigimod at 250k, Ampligen at 50k.
Who has that much money for potentially a small improvement?
We need a cure at a reasonable price, not a potential improvement for a ton of money.
Phase 2 trials ongoing, planned, or concluded worth staying alive for, and when I think results are due (interim if planned):
- RSLV-132 (soon?)
- Temelimab (Q4 2023)
- Ampligen (Q1 2024)
- Efgartigimod (Q2 2024)
- Hope Bio stem cells (Q2 2024)
- BC007 (Q4 2024)
- AER002 mAb (?)
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@WillPSSD
@PSSDNetwork
I knew that long time ago but people are like "are you a doctor".
They prescribe them like candies, for the smallest issue, here's your SSRI, but no one talks about ruined lives, everyone acts oblivious
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Many times the other hand becomes completely opposite, completely pale. When the nervous system is absent, there is no control in the body, and every system suffers, including the blood that travels based on gravity.
#POTS
#MECFS
#LongCovid
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We need CAR-T trials for Long Covid (MECFS, POTS)
This just arrived in my mail today; online version should be available soon:
8 severe
#SLE
#lupus
patients
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#scleroderma
3 severe
#myositis
(anti-synthetase)
Long-term drug free remissions
Only one severe infection (pneumonia hospitalization)…
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No spike protein in Coxsackie B virus, echovirus, Epstein-Barr virus, cytomegalovirus, parvovirus B19, yet all these viruses appear just as capable of causing ME/CFS as SARS-CoV-2
Heard of a spike protein? Well it might be affecting every organ system in your body if you have long covid - that's what Dr. Robin Rose told us tonight. How do you get it out? Well, she has the answers to that too. Very interesting conversation that we have to stay on top of…
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Does anyone have mental issues as a symptom of MCAS? Anxiety?
I spent a bit longer in the sun hoping to get some vitamin D, and for the next few days, I experienced strong anxiety. Does anyone get a histamine reaction from the sun?
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The only effective treatment that will eliminate all symptoms is euthanasia.
Every day, more and more young people will commit suicide or opt for euthanasia.
Thanks to everyone who continues to make jokes about the illness
Thanks for the billions invested in CBT and exercise
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People think POTS is just a heart rate increase upon standing.
Incorrect.
The HR change even happens when we turn in bed.
It also affects brain, digestion, blood flow, mental health and many other systems in the body.
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@deborahbrian
We need a realistic, effective, official treatment, not for patients to spend tens of thousands of dollars for a potential 5 percent improvement, which, in fact, doesn't work for most people, and some even transition from moderate to severe.
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My lips tremble/twitch while I smile, every time. Also, my facial nerves often pulse, and my fingers twitch frequently. Does anyone know what this is with my lips?
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Imagine having children, living, and being in so much suffering that the only option is euthanasia.
And people continue to mock this serious illness.
The only thing worse than death is wishing death as relief.
Wake up world, wake the fuck up.
A young British woman, Kelly Smith-May, is trying to raise £10k to be euthanised in Switzerland after being infected with covid in Dec 2021, leaving her entirely bed bound and disabled. She has 4 children. The covid minimisers need bringing to justice
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I would love to see CAR-T study for long covid.
People with Sjogren's and dysfunction of the autonomic nervous system, POTS, MECFS, have achieved remission through CAR-T therapy.
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Without evidence, I don't believe in any recovery story from ME/CFS and POTS
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Long Covid has no connection to COVID anymore.
Long Covid is a post-viral syndrome manifested through dysautonomia (dysfunction of the autonomic nervous system), POTS, CFS/ME. Many people think that long COVID is associated with acute infection, which is completely inaccurate
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I don't know if scientists are retarded or what's going on?
Why do we keep testing drugs that people have already tested for thousand times?
I'm tired of this nonsense.
1. Icahn School of Medicine Mount Sinai: “A clinical trial of repurposed HIV antivirals in LongCOVID” 👉 Learn more here:
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I've had enough of people claiming they have long COVID and yet live completely normal lives, and I'm also tired of those saying they've been cured. It seems like a trendy thing for people to talk about having LC. Well, here's some news for you all: none of you have long COVID.
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My father has AFIB and takes beta-blockers, and he functions without any issues.
However, BB cannot manage POTS because it's not just about the pulse,it is the entire system. Blood doesn't flow properly through the body, completely uncontrolled, and BB can't influence that.
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Even in the popular TV series "The Good Doctor", Long Covid is mentioned, and in that series, doctors never once doubted that diagnosis, while in the real world, we still experience gaslighting and mocking of the condition by doctors and other people.
#Longcovid
#MECFS
#POTS
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Will there come a day when I'll log into Twitter and see some good news?
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This is a depiction of a person suffering from a severe illness for which there is no treatment and no hope. Instead of being happy about the gathering of family on Thanksgiving, he is dead inside, dead because the illness has taken his soul.
#LongCovid
#MECFS
#POTS
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Our biggest problem is that the loss of smell and taste is also considered Long Covid, along with other seemingly harmless symptoms. And then everyone thinks that Long Covid is a joke and that symptoms gradually go away over time.
I always say, long covid is only CFS/ME and POTS!
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I think long covid is the only thing where in one moment you can think, 'I want to live,' and in the next, 'I don't care if I die
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If the future brings hope, people wouldn't opt for euthanasia
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Everything that you can imagine, people have already tried when it comes to CFS/ME, POTS (Long Covid).
Currently, there is nothing in the world that can help patients return to a normal life.
Stop wasting time on things that we already tried, find the root cause and cure.
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They say there are 5 stages of grief, but with Long Covid, there are 4 stages.
Denial, anger, bargaining, depression, which we experience every day, all 4 of them, and we can never reach the last stage, acceptance, because it's impossible to accept endless suffering in bed
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Every time my uncle called or dropped by to visit me, he would try to convince me that I wasn't sick, despite having a doctor's diagnosis that I have POTS. Even once he yelled at me.
But lately, he hasn't been contacting me because he's angry.
Angry because im sick lol
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Whenever you think it can't get any worse, Long Covid gives you more symptoms
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When you have severe insomnia, this condition seems ten times harder. I guarantee that severe insomnia is one of the worst symptoms to endure.
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@Emma40025133
Don't know why can't we make it happen.
There is no trials and studies for HELP apheresis and you can do it if you have money, also it is very dangerous and it does not help long covid.
On the other side bc007, no side effects, can cure you, but you need to wait, no logic...
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We don't have any more time to waste, we've already lost a lot. Young people are committing suicide every day. We don't have time to wait for years and years. I can't understand why everything operates completely illogically.
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Please make any suggestion. We need to push for this.
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The vast majority of people who have Long Covid are women, and women are 2 to 10 times more prone to autoimmune diseases compared to men. There is a lot of evidence that this condition is autoimmune or neuroimmune.
#POTS
#MECFS
#LongCovid
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Can anyone tell me when we'll start serious research on the condition called CFS/ME and POTS?
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@luckytran
Thank you for supporting the billboard campaign and all of us suffering from Long Covid (CFS/ME and POTS, and other forms of dysautonomia).
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