A 😎 Long Covid + MECFS Billboards
@AaronCa11
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Hey guys, I've created a GoFundMe for UK billboards.
I've just chosen an arbitary target of £5,000 but as stated on the GFM, ALL decisions will be made with Twitter polls and the target can be amended at any time and I won't make any profits from this.
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Damn I just told my friends in the group chat I can’t hang out because I’m sick with LC (first time I spoke to them in months) and they just changed the subject and moved on like I was invisible 😂 god damn that was cold
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How can anyone say lockdowns wrecked our immune systems? We could still go for walks, to the supermarket, to work, to school etc. We never had a proper lockdown so blaming a few months of not being able to go to a gym or nightclub in 2020 on you being ill now is ridiculous.
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‘People are sick because we were locked up at home for almost two years and didn’t see anyone!!’
This was May 2020.
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First UK billboard promoting
@Not_Recovered
and raising awareness for
#LongCovid
and
#MECFS
.
This billboard is located at the following location in Bournemouth and will be up 24/7 for two weeks.
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#LongCovidAwarenessDay
I was a good person in life and I deserve better than to be left behind by society because I made the mistake of inhaling the air at the wrong time and contracting Covid. I want my health back! Life is passing by and I’m rotting on a couch.
HELP US !
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@guardiannews
‘Work from home’ isn’t just laying around with a laptop doing data entry. Most work from home jobs are still intense customer service type call centre roles that require you to be sitting at a desk 8 hours (or longer), using various complicated systems across multiple monitors.
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Didn’t call the doctor for months because I knew it would be pointless and sure enough after me explaining how my increasing sleepiness and lethargy since Covid is ruining my life, I was told to exercise and improve my fitness.
Knew it was coming and I’m still pissed off.
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There’s a Reddit post asking when we’ll see treatments for LC and so many people are responding saying that it will take a decade at least.
I want to remind people there’s a drug that has existed since the 1970’s that helped severe bedbound MECFS patients back to full time work.
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All these young guys on social media saying Covid is just a cold and totally minimizing it should be aware of the hair loss symptom that comes along with it, maybe then they’ll STFU and put a mask on.
This was taken on August 27th last year. Six weeks after I tested positive
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Swapped a few voice messages with a friend I haven’t spoken to in a while and the subject of Covid came up. I told them all about the research going on and described how bad Long Covid was to her and she replied saying ‘if you really worry about being sick then your mind will
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Ugh man, i just called my GP for Paxlovid and got refused because ‘it should pass within a few days’.
The acute stage for my first infection was 2.5 weeks of intense vomiting and nausea. I’m only on Day 2 of this infection and it’s almost identical so far.
Ffs
.
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@TSnozzle
Yes because going to a concert for 3 hours as a one-off is the same as working 40 hours a week on a permanent basis.
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@SeanRossSapp
Covid is still killing and disabling people every single day. Long Covid has no treatments and is pushing people to suicide. Anyone reading this comment please advocate for further research and please wear masks in public !
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@timspector
Didn’t you literally co-found ZOE????
How can you be so involved in a project monitoring Covid-19 and then attribute long term sickness to diet????
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Thanks to Simon Wesseley this poor guy with M.E at 12 years old (paralyzed and mute) was taken from his parents and then dropped into a deep swimming pool to 'test' if he was faking his illness.
This was filmed 30 years ago! And it's still happening!
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Nothing to say other than I just want my Long Covid fixed. Now. I sound like a bratty kid but this is just miserable. It was my birthday yesterday and it was the worst birthday of my life. I’ve aged about 10 years in the last five months. I have so many bald patches.
#LongCovid
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Are there any Twitter pages I can follow that post updates about
@LongCovid
research, trials etc? My mental health is in the gutter and need some hope and encouragement. I'm also crap at Twitter so have no idea how to find anything for myself. Lol.
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These billboards are for everyone with
#LongCovid
and
#MECFS
who have been abandoned by healthcare, society and the government.
There is absolutely no justifiable explanation for this to continue happening in 2023 when there are now hundreds of scientific research papers
Hello everyone, we are excited to announce that the first four billboards have gone up, with the final board from this batch due to go up tomorrow.
5 Billboards for 2 weeks
Second 5 billboards go up from 18th
Please RT, share.
#longcovid
#MECFS
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Yet another patient with Long Covid and ME/CFS posting a long winded, self congratulatory success story attributing their recovery to walking in nature, meditation, positive thinking, reducing stress, spending less time doom scrolling and eating healthy.
I normally scroll past
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Jonathan Toews speaking out about his Long Covid struggle has triggered some interesting posts on the hockey sub of Reddit. Lots of casual Reddit users having a serious discussion and learning all about LC for the first time.
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#LongCovid
and
#MECFS
patients are so ill they’re crowdfunding for their own billboards, BEGGING governments to invest in research.
Some patients are so unwell they’re taking their own lives and applying for assisted suicide.
A f’ing disgrace.
Where are the journalists?
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On Saturday i was hit with intrusive thoughts and a wave of depression out of nowhere which lasted 3 hours and took me over a day to ‘calm down’ from. I woke up at 4am with this again for an hour which was terrifying and now I’m almost throwing up with anxiety and whole body is -
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BBC News actually reporting Long Covid properly 😱
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@theBrianaMills
The phlebotomist here sat unmasked opposite me telling me about her husband who developed severe MECFS from a Covid infection and how her friend lost her job due to Long Covid symptoms.
The disconnect is wilddddd.
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When are the big players in mainstream media going to talk about a chronically sick community so desperate for their lives back they’re paying for their own public health billboards?
@BBCNews
@SkyNews
@Channel4News
@itvnews
@TheSun
@MailOnline
@DailyMirror
@ChrisCuomo
In the UK patients are so desperate they’re funding their own awareness campaigns.
@LCMEBillboards
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Someone is considering euthanesia because their insomnia is destroying their life. The only thing that has helped them sleep is seroquel but that comes with horrible side effects and is starting to lose efficiency.
If you know of anything else that can help a severe insomnia
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Hey, anyone got an idea why my legs have randomly started to ache like crazy? I've had
#LongCovid
since July 2022 but never had this symptom. It doesn't seem related to exertion as they hurt 24/7 whether I'm resting or not.
They feel kinda weak and tingly too...
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The fact it’s even a 6 month waiting list just to speak to one of the very few doctors working with Long Covid patients in the UK, when we’re 4 years into this and have 2M people with symptoms, is just another reminder of how dire the situation is. 😓
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If you want to see more coverage on the lack of research, trials and treatments for both
#LongCovid
and
#MECFS
please spread the word around the work
@LCMEBillboards
are doing.
We only started in November and have had 12 of these boards up, been featured on ITV and half (1/4)
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Has anyone with
#LongCovid
had the symptom of feeling sick to their stomach with anxiety/fear? It’s been a new one for me the past few months but is becoming more consistant. It’s like sheer terror and last days at a time. Can feel myself trembling too.
It’s really scary
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Sitting here in my new flat imagining how in a non-Covid world, I’d be having so many friends and family over. I’d be excitedly decorating. I’d finally be happy after 7 years with a hellish neighbour before. Instead, I move in and develop
#LongCovid
and sit here alone and ill.
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I’m feeling pretty ill today so don’t think i’m going to be as active as I wanted to be so make sure to follow
@LCMEBillboards
@AlexSprackland
@TheChronicColab
@long_covid
@LongCovidAdvoc
for pictures of today !
Here are some of them so far
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I feel fucking hopeless today. It’s been a few days since I’ve read anything encouraging about LC studies and trials and it’s definitely affected my mental health. I obviously understand it’s not as easy as just finding a magic pill but everything just seems so….slow.
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The drug is called Ampligen and is currently being trialled for Long Covid.
This drug clearly is a massive game changer for some people (not everyone) and it’s frustrating seeing so many people talk about finding a treatment for LC/ME from scratch when there’s a drug -
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I feel horrified that I didn’t even know about this illness until I was struck with Long Covid last summer. Today I’m thinking of the
#pwME
who gave me so much advice in my early days and unfortunately are presumably too unwell to use Twitter anymore.
#MEAwarenessDay
We are putting the finishing touches on our
#MillionsMissing
art installation & press conference! Join us in person at the Washington Monument or online at 2 pm ET & throughout the day. Your pillowcases are the perfect final touch. Thank you!
#pwME
#pwLC
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@doctor_oxford
@LibDemPatrick
@PeterStefanovi2
@JoFroggatt
@ITV
‘forcing the population to mask’ is an interesting way of spinning the comments you got.
You just acknowledged Covid is still killing people and disabling people yet you rejected the chance to wear a mask at an indoor event that was promoting a show about the Covid pandemic?
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Does the hair loss with Long Covid ever stop? I’ve been taking biotin and am still having strands in my fingers everytime I ruffle my hair. I’m starting to look so old and ill 😩
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@BBCNews
@YoContextKev
Remote working benefits everyone except city centre landlords and neurotic middle managers.
We can save money, time and have less stress working from home instead of travelling miles to do the same job in an office.
also remote working opens opportunities for disabled people.
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Started developing intense agoraphobia in the last month (new
#LongCovid
bullshit) and tried to push myself to do a 10 minute train journey. Unfortunately i ran off the train before it departed and came home again.
I try every week and I just cant do it 😓😓
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I still feel like there’s very few people who actually expressing the sheer urgency of the
#LongCovid
situation.
There are members of the community literally applying for assisted suicide because they can’t endure the suffering any longer. It is completely
horrifying.
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I have to say that Tobias is genuinely one of the nicest people I’ve ever spoken to and the feeling of of sitting here knowing how much he (and everyone else) is suffering and there not being anything I can do is really distressing.
He is very severe with (pre-Covid) MECFS and
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@Channel4News
leaving a plug here for a patient led billboard campaign. Anyone reading this with
#ME
or knows a loved one/friend/neighbour suffering it, feel free to follow us.
@LCMEBillboards
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30 years ago children with ME were being seperated from their families and tortured by psychiatrists who believed they were merely suffering from ‘school phobia’.
Nothing has changed in 30 years.
#BringMillieHome
#DontLetMEDie
@RCPhysicians
Thanks to Simon Wesseley this poor guy with M.E at 12 years old (paralyzed and mute) was taken from his parents and then dropped into a deep swimming pool to 'test' if he was faking his illness.
This was filmed 30 years ago! And it's still happening!
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I commented on a post on Reddit of Lizzo’s gig cancellation and said it could be Covid and my post was removed because ‘we don’t allow Qanon content or unfounded conspiracy theories’’
This and the WHO announcement happening…..damn I’m pissed off today.
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@DrSyedHaider
That’s not how chronic illnesses work and as a supposed Long Covid ‘doctor’ you should know this.
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I just watched the BBC One Show segment of Long Covid and I have to say that while Dr Binita Kane was really good (and looks like they cut off some parts of what she was saying), I thought the whole tone of the segment was really bad and minimizing as I expected.
The narrator
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@DrFrancesRyan
We’re honestly such a petulant and spiteful country. It’s embarrassing.
The obsession with work and defining someones worth by how much they ‘contribute to society’ makes it such a toxic place to live.
We can’t stand the idea of people getting tiny comforts unless they put a
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My worst symptom I’ve had since catching
#Covid
in July is this ‘drunk’ sensation. It’s so overwhelming. It comes and goes but it’s so hard to focus on anything when it’s here. At this point I’m resigned to the fact this might be permanent.
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Naive/dumb optimism speaking but I really think this will be the last Xmas season anyone with LC will have to suffer alone and abandoned.
So many people are getting sick/long hauling that this time next year Long Covid will be getting the urgency and attention it needs.
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Fuck every single person minimizing this illness, attributing it to anxiety/ laziness or standing in the way of proper biomedical research and treatments for these people.
#MECFS
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@JimBethell
@RSylvesterTimes
@Smyth_Chris
Long Covid and ME/CFS patients are begging for urgent biomedical research to find treatments for their suffering.
We have a growing epidemic of extremely sick people and governments must take action!
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Anytime I see stuff like this I feel like I’m on a different planet. Thousands of people unmasked in stadiums even tho its year 4 of a pandemic. Life has went back to normal for so many people. They can do what they want. No masks. No Long Covid. Lucky them.
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We need some sorta viral ‘challenge’ to raise awareness and support for
#LongCovid
(and ME/CFS) similar to the ice bucket challenge for ALS. We had the biggest celebrities in the world dunking ice on their head for millions of people. With Tik Tok, this could be global in hours.
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@jessphillips
Patients with Long Covid and MECFS are so sick they’re funding their own billboards.
@LCMEBillboards
When will MPs acknowledge this?
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A disability assessor discussing CFS/ME on Reddit.
Pure evil.
Parent comment here -
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The contrast in efforts between
#LongCovid
and
#MECFS
patients so desperate they’re paying for their own billboards and preparing it for weeks so they can maximise awareness to the
@The_MRC
and them responding with a copy and paste job says it all. 😔
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I always get so anxious when I read someone saying they suddenly became severe/bound 6+ months into their Long Covid. The fact that any morning I might wake up and be a totally different category of illness just keeps me feeling so scared.
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This report about Simon Wesseley and his treatment of Ean Proctor (the kid he removed from his parents and thrown in a pool because he thought he was faking his ME) is wild. I’ve never read it in such detail before.
#MECFS
This is just one of many of his contradictions -
‘In
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Interesting that out of the 200+ symptoms associated with Long Covid that ‘fatigue’ always gets highlighted in these presentations, the only symptom they can push exercise for.
If they highlighted the neurological, gastro issues etc they’d be ridiculed for suggesting exercise.
A Long Thread 🧵…
Astounded to sit in a session at the
@ACSM
conference where high profile researchers/medical professionals are advocating for the role of GET and CBT in treating
#LongCOVID
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- right THERE that’s been on a shelf for decades.
Just study Ampligen. Why does it help some and not others? What is it doing to the body that other drugs aren’t? Can it be replicated and modified to potentially help everyone?
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We made the paper!! 💪💪
#MECFS
#LongCovid
@LCMEBillboards
Thank you
@helen_melon__
for finding out for us.
'Boards bid to highlight ‘abandoned’ patients'
“DESPERATE” campaigners have put up a billboard advert near a city research centre calling for more funding to help better understand long Covid and ME.'
H/T
@AaronCa11
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@NateB_Panic
do you know if shes saw any LC/ME doctors like Dr Clare Taylor or Dr Binita Kane?
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Ffs another day another minimizing morning TV segment in the UK reassuring the public that Covid isn’t ‘the same virus’ now and that hospital admissions are down and WHO isn’t considering it a variant of concern etc
Also that people are ‘terrified’ of facemasks coming back
COVID: SHOULD YOU BE WORRIED?
🩺
@xandvt
is here talking about the new COVID variants EG.5.1 and BA.2.86. The first cases have been recorded in the UK. He discusses if we should be concerned about it and if we could see a return of mask wearing...
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Honestly we need some sort of public awareness campaign for the FDA to approve Ampligen as a treatment for Long Covid and ME/CFS.
It’s existed since the 1970’s, has got people from severely bedbound back to working full time and is the quickest avenue for a drug approval that we
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Honestly I know not everyone is comfortable being visible on Twitter and nobody wants to spam, but if you’re part of the
#pwLC
community I’d encourage you to be as engaged as possible with everyone. Follow everyone you can, RT anything important, make us loud and visible.
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I’ve had an email from GoFundMe saying the Independent want to write about the billboard campaign.
#LongCovid
#MECFS
Any advice? Or anyone wanna be on hand to offer support incase I mess it up when they speak to me?
Hey guys, I've created a GoFundMe for UK billboards.
I've just chosen an arbitary target of £5,000 but as stated on the GFM, ALL decisions will be made with Twitter polls and the target can be amended at any time and I won't make any profits from this.
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@scotgovhealth
@jenni_minto
Scottish Long Covid patients are so ill and desperate they are funding their own public health billboards! THERE IS NO HELP!
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If we were judging the existence of chronic conditions based on our day to day interactions I’d be asking why I’ve never met anyone in my life claiming to have ‘cancer’ or ‘diabetes’.
But difference is I don’t suffer from main character syndrome.
Why is it that I have never in my life met a man claiming to have "chronic fatigue," "long covid," or "fibromyalgia"?
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@thephysicsgirl
Anyone reading this who is a supporter of Dianna please advocate for proper research into Long Covid and MECFS. Both are horrendous, life destroying illnesses. Please help.
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Alot of reading but nine patients were ‘almost’ fully recovered with this. Another potential treatment for Long Covid?
#pwlc
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Can I just say, I mentioned my birthday casually to him once months ago and he remembered all this time.
LC/MECFS can take away everything else but it will never take away friendship. 😎😎😎
🎉 HAPPY BIRTHDAY 🎉 Today’s
@AaronCa11
30th B-day! He’s the kindest person, caring for everyone in
#LongCovid
&
#MECFS
community.
Pls consider donating to his GFM campaign below and give him a follow.
Thank you for being such an amazing friend ❤️
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Thanks
@GarethEvans1977
for arranging this and providing the pic!
First billboard in Wales and was filmed for potential footage in an ITV documentary.
#LongCovid
#mecfs
Make sure to support his GoFundMe attached!
Hi everyone. The billboard in Cardiff for the Covid inquiry has gone up. This board was put up by an independent and not directly by us. If you would like to support him, here is his GFM. Thanks to
@GarethEvans1977
for the great work.
#LongCovid
#MECFS
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Another article of a CFS/ME recovery. Guess what helped her recover? Not Ampligen, BC007, stem cells or drug treatments...
Acupuncture, diet and having 'the right mindset'.
Wait and i'll tell my severely ill bedbound friends this great news...
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Leaflets have just arrived! Let’s get 10,000 handed out! We’re sending some to Cardiff and Yorkshire for volunteers to hand out too.
#LongCovidAwarenessDay
#LongCovid
#pwlc
#MECFS
#pwme
LONG COVID AWARENESS DAY DIGIVAN ROUTE AND VOLUNTEER LOCATIONS.
If you would like to help out with handing out leaflets to members of the public, see the Digivan, meet other volunteers, protest with signs or wear your own LC merchandise then these are the locations.
We’ve
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Target smashed and exceeded in 15 days so thanks everyone for donating and sharing. Special thanks to
@CarolineStroeck
for her generous donation today pushing us over the target.
Broke patients helped fund lab equipment for
#LongCovid
research. Now, we’re having to fund our own public health campaign. Sad but also exciting. £5K smashed. Congrats
@AaronCa11
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The new BC007 article has been translated here.
Summary - ‘if everything goes smoothly the drug could hit market in 2025’
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It should be the foundation to build Long Covid and MECFS research from. Stop all this doom mongering nonsense that nothing is ever going to help and that everyone is screwed.
If Ampligen has good results in the LC trial there needs to be a campaign to get it approved quicker!
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On
#SevereMEAwarenessDay
I’m thinking alot of the people I’ve interacted with on Twitter who are living with this horrible condition and have blown me away with how even with their immense suffering, they have still retained their love and kindness for others.
Even though these
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Ren has ME/CFS and Lyme and he just had a number 1 album in the UK which is pretty incredible. He’s released this for ME Awareness Month so be cool to have this be his biggest single yet!
Here’s the Spotify link to his song -
Troubles is out on all platforms now!
Always wanted to make a beat with this sample, special one for me for a number of reasons!
Click the link in my bio to buy/listen/watch!
Good chance we could chart with this one which would be the first time in history a song about ME/lyme
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ITV ran a documentary in Wales tonight focusing on research and clinical trials for
#LongCovid
and
#MECFS
tonight.
Gareth and the other patients really did a great job conveying the urgency of the situation, and our
@LCMEBillboards
@Not_Recovered
billboard was featured in the
On Wales This Week tonight, I talk about research and clinical trials for
#LongCovid
&
#MECFS
.
#LongCovidAwarenessDay
#MECFS
#MillionsMissing
@MarkDrakeford
@Eluned_Morgan
@lynne_neagle
@PeterFox61
@hef4caerphilly
@long_covid
@WAMESMECFS
@MESiGWales
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New
#LongCovid
trial ? (herpes antiviral)
‘We report a series of four cases depicting the successful use of acyclovir in the treatment of the virus SARS-CoV-2 in patients with long-haul symptoms, especially those in the realm of encephal..’
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WHY do these people never just advocate for BIOMEDICAL RESEARCH instead of recovering and using it as an opportunity to be some grifty motivational speaker? The people he’s speaking to will NOT magically get better, and it will NOT be ‘ok in the end’ without people advocating for
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Headache and ‘drunk’ sensations all day, then took my first car journey in 5 months with my Grandparents and had to ask to stop and bring me home because I felt ill and had a panic attack. ‘You need to explain this to the doctor’ they said. Sigh. No point explaining.
#LongCovid
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@anandkumarn
I really don’t understand how others can travel on flights, party every weekend and go to restaurants etc for years and avoid it and others can’t even take 1 risk with precautions. All of this is so frustrating and unfair.
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‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot | The Guardian 😱😱
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@linmeitalks
I’m assuming the job applications will be from businesses who are fine with candidates who may wake up and be too unwell to do any work on any given day? Since chronic illnesses can be unpredictable and it’s impossible to plan in advance. 😅
If you can find someone who’s going
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Also if anyone has contacts for Bournemouth newspapers/media sites and could reach out to get them covering this in a story that would be great 😃
First UK billboard promoting
@Not_Recovered
and raising awareness for
#LongCovid
and
#MECFS
.
This billboard is located at the following location in Bournemouth and will be up 24/7 for two weeks.
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I have a diary that I’ve updated daily since September 2012 and it hurts so much reading my old entries and how I used to talk about stuff like work, friends, dating etc and then from July 2022 it’s just writing Long Covid symptoms.
I’ve done nothing worth writing in months.
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Meine Rede zu Betroffenen
#ME
/CFS in Berlin. ME/CFS muss aus Tabuzone. Ärzte müssen Schwere der Erkrankung und Behandlung endlich kennen. Forschung schieben wir jetzt an, Industrie tut viel zu wenig. Politik will von COVID nichts mehr hören. Das ist falsch. Niemand bleibt zurück!
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van with audio
#LongCovidAwarenesDay
Here's what people will be hearing around Westminster today, thanks to
@LCMEBillboards
Digivan that is currently circling around DWP, parliament and SW1 generally!
#LongCovidAwarenessDay
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Thanks
@Raoul__Lucas
for bringing this to my attention.
@ardrossanherald
have covered the UK billboard campaign too! Thanks
@Murray_Grayston
for covering!
#LongCovid
#MECFS
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I mean, what do you even say when your very severe ME friends (desperate for any sense of hope to cling on to) reach out and ask you if there’s any good news or potential biomarkers/treatments stemming from the NIH report? What a fucking mess, sorry for swearing but 😓
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@GeorgiParvanov4
This breaks my heart man. It feels very wrong of me to post this and try change your mind but I’m gonna leave this here. I know you’re aware of all this stuff but damn, you’re fought so hard man and you deserve to be there if/when a treatment comes
I urge anybody with any post-viral illness contemplating suicide or euthanasia to hold off making a decision for at least a year or two, until the big trial results are out. It’d be a shame to suffer for three (or worse, 30 years) years, only to miss treatment by mere months
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