Alice Fricker💘
@FrickerAlice
Followers
838
Following
329
Media
12
Statuses
271
20, Bedridden for 9yrs with #VerySevereME #hEDS #SFPN #MCAS #PoTS Chronic Insomnia & Chronic Bladder condition. Mother helps run account.
Cornwall, England
Joined September 2019
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Pinned Tweet
Alice is home. And as relieved as we are. It was an appalling, inhumane experience.
@RCHTWeCare
Drs disregard the specialist because he is private, even tho he’s been working 40yrs. So what now? Alice is left to die at home?
#pwME
#VerySevereME
#MECFS
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Alice tested positive for COVID yesterday & family also have it.
It’s hit Mum (main carer) & Alice the hardest. Over the months Alice has declined with symptoms so extreme her doctors haven’t seen them before. We don’t need COVID on top. 😣
#verysevereME
#pwME
#MECFS
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Alice turned 20 today, this is her 9th Birthday bedridden with
#verysevereME
Alice finds it hard to fathom how she’s 20 when she still feels like she should be 11. Age 11 was the last time she was “living”
#pwME
#dontforgetME
#Meawarenessday
#ME
#MyalgicEncephalomyelitis
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448
I turn 19 on the 11th of May. I’m terrified. This will be my 7th birthday having
#VerySevereME
in a blacked out room. Not able to eat cake or open presents. No visitors.Turning an age that’s not 12 is sickening.The last time I got a chance at life was when I was 11
#pwME
#MECFS
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Change of plans, Alice was taken in via Ambulance this afternoon.We waited hrs to be able to be taken into hospital. A VERY traumatic Ambulance ride. Had to make an emergency stop as it was so intense. Alice is suffering extremely.A lot to update.
#PWme
#VerySevereME
#SevereME
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An update on me and M.E 🫠
Please take the time to read 🤍
#MyalgicEncephalomyelitis
#MECFS
#verysevereME
#severeme
#PwME
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So much damage done today, so little help!The paramedic crew reported us to safeguarding. Alice and I were quizzed separately. It's caused untold damage.Alice had a PTSD panic attack afterwards. It was all horrendous.
7yrs of
#VerySevereME
& this is what we get.
#pwME
#severeme
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7 doctors,96hrs. A screaming loud and hostile environment. Especially with
#VerySevereME
& all the other life-threatening illnesses on top. Our M.E consultant last night spoke to Dr No.7 and instructed what to do. Ofc, they did not listen.
#pwME
#SevereME
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Yesterday Alice was on a Stretcher for 8hrs before being transferred to a bed. She's been in “Same Day Assessment Care” it's incredibly loud, we can hear every conversation. Nurses were appalling. No understanding or care. Lazy and rough. Neither of us have slept.
#VerySevereME
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We have no words, yet so many. Will try to update soon. The NHS is a sh*t show. But we already know that when it comes to
#pwME
However, we just got told they are going to talk to my M.E consultant. Praying it goes well.
#VerySevereME
#severeme
#MyalgicEncephalomyelitis
#SFPN
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Repeatedly been told "we can't help you" “ I don't understand why Alice came in" "If your specialist is as amazing as you say...." Our M.E consultant is the best in the country. He can do very little when the Hospital Drs ignore him.
#pwME
#SevereME
#VerySevereME
#SFPN
#MECFS
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Alice has had a VERY SEVERE subset of M.E since she was 12. Developing other threatening conditions along the way. Neglected by the NHS as a child & at 18. Left behind in a pitch black room for 7yrs. Able to do nothing but suffer & deteriorate.
#DontLetMEDie
#pwME
#VerySevereME
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Any
#pwME
experience this?
Having people in the house that aren’t parents, even if they’re quiet is draining. I don’t even have to know they’re in the house and I seem to crash. It’s like my body is hypersensitive to one’s energy? 1/2
#pwME
#SevereME
#MEAwarenessHour
#MECFS
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Totally empathise. & maybe me saying this is rude. But bloody hell, i've been bedridden since Twas 12. In a pitch black room with a very severe subset of M.E. With so much abuse from medical professionals. Like most of us have. Then LC comes along & it now matters?
#SevereME
Teen left bedridden from Long Covid told to 'stop making it up' by doctors
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We have the CFS/ME services coming out tomorrow. (They don’t even call it M.E) We don’t want them out. Our GP has insisted as she wants to pass Alice on. The CFS services signed Alice off 4yrs ago as Alice was too severe for their help. 1/3
#pwME
#SevereMe
#verysevereME
#mecfs
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Safe Guarding rang up GP after Alice got out of hospital. Now the head of Safe Guarding wants an in person meeting with GP. 🫠 This is why we're the
#millionsmissing
& why it's such a danger to go into hospitals. Feeling sick
#PTSD
#verysevereme
#SevereME
#pwME
#MEAwarenessHour
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Alices mum here.
Any advice would be appreciated.
Alice always has trouble with breathing however, tonight her lungs feel like led. Her brain is not telling her lungs to move. Her whole body is in periodic paralysis. It is a huge fight to take each breath.
#VerySevereME
#pwme
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Lying flat, doing absolutely nothing. With a HR of 215. However, Alice has been awake for OVER 140hrs, could this be making it worse? 🤪😭
#VerySevereME
#PoTS
#vasculardysfunction
#pwME
#NEISvoid
#insomniac
#tachycardia
#hEDS
#severeME
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We pray it never gets to that. VERY thankful for WW (specialist/consultant) he supports us 100% and will back our fight all the way. GP is supportive but out of her depth & also appalled by Alices treatment.
#SevereME
#SFPN
@gmcuk
@DHSCgovuk
@NHSuk
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#verysevereME
#WorldMEDay
Carers are left to navigate M.E with no help or support. We are watched by Social Services, Safeguarding & the like. We are stuck as ‘piggy in the middle’ in a world of politics, ill education, non believers, corruption & cover ups that run deep.
#pwME
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The past few days Alice’s breathing has been stopping and starting whilst awake but resting. It’s over a period of time. She then realises and gasps for air.
Alice has no control over it in that time. Is this some sort of Central Sleep Apnea?
#pwME
#verysevereME
#SevereMe
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Thank you 💘
They were a lot nicer than we had imagined. They didn’t see Alice but will come back to visit another time🫣They were not full of knowledge, not inquisitive. They knew nothing about what goes on in this M.E world. They were shocked about how Alice is being treated.
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Alice went into very severe ME very quickly after being diagnosed. And over the past 9yrs has deteriorated further into a more severe very severe M.E. This is a photo that was taken on her 11th birthday before she was diagnosed. ♥️♥️♥️
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Some
#medicalprofessionals
abuse their power. And that's a well-known fact for
#pwME
Especially
#SevereME
Something that Alice wrote last year. It definitely shows how (Alice) feels. It felt like it was a good time to share. Swipe, as 3 images!
#verysevereME
#medicalneglect
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@LongCovidDuchy
I’ve been bedridden for 7yrs with very severe M.E. Since I was 12. I can’t have therapy because I’m not physically well enough. It sounds like awful advice, but honestly taking every day as it comes is the only way to get through it. Thankful to have my family, especially my Mum
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Also, if anyone is able to eat a cake or something nice today, eat it for Alice. She can’t eat any food unless it’s some dragon fruit, a specific type of potato or a specific type of cereal. 🥲♥️
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😡Just been on a FB group for M.E for our area. & a lady posted about being an OT that has helped many people with
#MECFS
in her career. The lady being someone that was pro Esther Crawley & caused Alice a HUGE amount of mental & physical damage. 1/3
#verysevereme
#SevereME
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The past few weeks we’ve been dealing with Social Services, Social Care and a Safe guarding referral. (This all happened because of our hospital trip in March) As well as Alice getting a lot worse. This has all caused more decline.
Feeling under pressure. 3/3
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Millie is continually in Alice and I’s (mother) thoughts.
It’s terrifying and utterly despicable knowing how much harm Doctors cause to us very severe M.E patients. A lot of us have been in similar positions, if only we could be treated as human beings.
#savemillie
@CareRoyal
Blown away that Millie's petition already has over 5,500 signatures. Please keep signing & sharing.
#VerySevereME
#TeamMillie
#NHSProtocol4SevereMENow
#DontLetMeDie
#MEKills
#EndMalnutritioninME
#SaveMillie
#pwLC
#pwME
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An advanced Occupational Therapist and a clinical psychologist are coming TOGETHER. They know nothing about how severe Alice is.
Alice is too unwell to have them in our house. Alice won’t be seeing them. However they think otherwise. They’ve completely ignored our calls. 2/3
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They want us home. So they've booked an ambulance & we have been waiting for 5hrs. Apparently they could come in the AM. Pleased to be going home, however NOT pleased as going home WORSE & without
the treatment we needed. (will explain more in-depth soon)
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Lying here feeling no Christmas spirit at all. Very severe M.E is no joke. The last healthy Xmas I had I was 11, and still not healthy, as a few weeks prior I had glandular fever. But how I wish I could go back to those days.
#severeME
#mecfs
#MyalgicEncephalomyelitis
#pwme
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It’s taken us 6yrs to get over her evil ways & all the horrific accusations she made against our family. 🫠 She wanted Alice to be taken into a mental institution because she couldn’t understand her very severe M.E. We had her taken off Alices case 6yrs ago.
#MEAwarenessHour
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“Trapped”. Sophia can barely speak now but chose this word to describe how she feels. Trapped in a declining, uncooperative, painful body that feels permanently on fire. Trapped in her mind, with so much to say, so many feelings & so much trauma - all suppressed
#verysevereME
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Alice has tested negative for COVID.
After a rough week, useless paramedics, useless pain medication and a pretty useless GP… we were able to get anti virals! 6 days late. PAXLOVID. We finished the course yesterday. Now to pick up the pieces. 😵💫
#pwme
#verysevereME
#NEISvoid
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Of course, we’re totally better together. And we should all support weather LC or M.E. But it can be frustrating when people don't recognise M.E patients who have been suffering like this for decades, centuries.
@StaceyPooleITV
@itvnews
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Help please. Alice is experiencing an extreme sore throat with COVID. She always has an intense sore throat from M.E & she’s had tonsillitis and then a throat infection recently, which we think is EBV reactivated. With COVID on top. 1/3
#verysevereME
#pwME
#MECFS
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My whole body is closing down. I can just about use my fingers to type this. I can’t move, I’m so hot, I’m in so much pain. My fingers feel like they aren’t a part of my body. And this was from me having an isolated Xmas. 😅🫣
#verysevereME
#severeme
#pwme
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Written last year by Alice.
This year has been a lot harder. After Alice being admitted into hospital at the end of March 2023 the decline has been very scary. Sending love to all ♥️
#pwME
#VerySevereME
It's hard to put into words, how the holidays always seem to hurt.
Recently posted on my Instagram.
#severeme
#pwME
#MyalgicEncephalomyelitis
#MECFS
#chronicillness
#verysevereme
#millionsmissing
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Example. I was 12 & I had been told I was making it up, Told that someone would come in the middle of the night & take me away to London & I wouldn't see my family for a very long time. Because I would be locked up. This has been happening FOR YEARS
#Pwme
#verysevereME
#longcovid
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On behalf of Alice, From her Mother. Please read. 🤍
M.E DEEMED UNWORTHY?
#MyalgicEncephalomyelitis
#pwME
#verysevereme
#severeme
#MECFS
#postviral
#nhs
#chronicillness
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I know this is a thing as
#VerysevereME
patients like Alice get this. & our consultant WW says it’s a definite thing with very severe M.E. But it’s absolutely horrendous & the
#PEM
is detrimental. But it’s hard for people to understand as it seems so far-fetched? 2/2
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Alice has bad PTSD with this woman. She was horrific. If you all knew what she said & caused you’d be disgusted. As I’m sure many of you will understand. I will no longer be posting on that group about Alice. Feeling sick. She’s even gone under a different name. 😡😤🫣
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Alice
#VerySevereME
has had a chronic bladder condition for 6yrs. Told it’s either
#SFPN
#MCAS
or IC.We are looking into
#TetheredCord
for this. Also looking into CranioCervical Instability &
#Chiari
bc of other symptoms. Any advice out there?Please. Esp with Tethered Cord?
#CCI
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We think Alice has central apnea. Whilst awake she noticed she’s held her breath over 40 times today. & that’s just when Alice notices. It’s scary when all of a sudden you realise you’re not breathing even when telling yourself to breathe.
#verysevereME
#pwme
#severeME
#hEDS
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My Mum, my full time carer of 8years had to stop working as a Bridal designer & maker when I fell ill. She now has a little business. If you’re looking to gift someone a special heirloom gift this Christmas. You may be interested in FloriAlice Fairies.
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Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm - Sign the Petition! via
@UKChange
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WTF. I went into
@RCHTWeCare
recently. It was an appalling experience. I haven’t been vaccinated. & a lot of the nurses weren’t wearing masks properly. I was terrified. & now I’m reading this.😤
1/2
#severeME
#pwME
#meawarenesshour
#MECFS
#LongCovid
@thisischerilyn
#neisvoid
Just heard 🦻🏻
@willquince
@SteveBarclay
@DHSCgovuk
@NHSuk
staff are being told to work if they test positive for covid but have no symptoms.
Absolutely shocking. 😳
What about immunocompromised patients, who have no choice but to attend hospital appointments.
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Last night rang 111, spoke to a lovely Doctor at around 12:30am. They wanted the paramedics to come and see me. Then got a phone call at around 2am saying the Paramedics wouldn’t be with me for at least 8hrs. So cancelled that and thought I’d get GP to come see me.
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Any help please? 7yrs ago under Alice's armpit she felt this agonising ripping pain, ever since then she's had these marks under her arm. Via Google it seems to sound & look like Cigarette-Paper Scars.We have been looking into Ehlers-Danlos.
#pwME
#EDS
#SevereME
@TheEDSociety
?
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6
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@tessfalor
I’m a v severe pwME & I have majority of symptoms for CCI & Occult Tethered Cord. I’m in the U.K no hope here & impossible for me to get scans that aren’t just the basic MRI. I have no idea how to go forward.I’m so pleased to see that you have answers.Good luck on this journey 🤍
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It's hard to put into words, how the holidays always seem to hurt.
Recently posted on my Instagram.
#severeme
#pwME
#MyalgicEncephalomyelitis
#MECFS
#chronicillness
#verysevereme
#millionsmissing
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She can’t swallow at all as it makes it extremely worse. So not eating, even if it’s something as smooth as soup. She can’t move her head as it causes more pain to the tonsils. Even breathing hurts them. What do we do? Alice is so distressed. 3/3
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My Mums been spoon feeding me as I can’t do it myself. It’s as if my brain won’t send signals to my hands. My hands want to close into a ball and never be used. Not just my hands, my whole body. This isn’t new, but it’s on a whole new level.
#pwME
#severeme
#verysevereme
#MECFS
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@inadarkroom247
Yes, Alice has been in continual decline for 8yrs now. Always been very severe but over the years symptoms have exacerbated and M.E worsening. Every week she feels as if everything has worsened and just keeps worsening.
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So it’s extreme. She’s been given Co-Codamol which is an Opiot. She's taken 9.We are gargling Aspirin. Taken Ibuprofen, Paracetamol, throat sprays & lozenges. NOTHING is taking even a percentage of the pain away. Alice has lost her voice completely from the excruciating pain. 2/3
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@LongCovidDuchy
Also, it might be false hope. But I have to believe that one day I won’t be in this position. I won’t accept that my life ended at 12. I’ll accept that a lot of my life has been taken away & I won’t ever get that back. But for me, I have to believe that one day I’ll live again.
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Anyone who has Severe small fibre polyneuropathy or any kind of severe neuropathy, have you had a PICC line and could you manage it?
Alice is hypersensitive to touch. She can’t wear underwear or clothes apart from a t-shirt, she can’t be hugged. (1/2)
#pwME
#VerySevereME
#SFPN
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@swastrosarah
I’m absolutely terrified as I have to go into hospital tonight. My M.E consultant/specialist wants me there.
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My resting heart rate went up into the 200's earlier. I'm bedridden and I wasn't doing anything other than lying down flat.
Thankfully it's calmed down and now its around 111 bpm but it is constantly changing, I never know what to expect
#POTS
#tachycardia
#pwme
#severeME
#mecfs
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@mrburnsfanclub
I have very severe M.E and for me even trying to pace is too much. Drinking water and opening my hands is a huge task. I am functioning at 3% and lower, 100% being healthy.
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This is so needed. Thank you to Jo &
@JennyWi04810918
and all the others that have helped to bring this together. 🩵
47 psychologists, academics & psychiatrists have signed an open response to
@BPSOfficial
re the DHSC Interim Delivery Plan for
#MyalgicEncephalomyelitis
, stating that
#ME
is a 'serious, chronic, systemic, potentially life-threatening biomedical disease’.
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@MarkMooch
It will cause repercussions with our GP.
We’re already black listed with social services and safe guarding. And being refused treatments by the GP surgery that WW consultant wants Alice to have. We’re walking on a tightrope.
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Has anyone ever been offered an NHS Continuing Healthcare Needs Check?
Alice’s G.P would like Alice to have one. We are unsure & a bit uncomfortable with the idea. We’re not sure what it involves.
#VerysevereME
#pwME
#severeme
#PoTS
#SFPN
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It really does blow my mind how our government
@Conservatives
and
@NHSuk
are so bloody ignorant. It shouldn't be a shock because look at how
#pwME
and other chronic illnesses have been treated. But stil, it's shameful and this has me seeing red. 😡
2/2
@DHSCgovuk
@gmcuk
0
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@Naomi_D_Harvey
@Paula_JKnight
The whole reason I went into hospital was for IV saline to help with my M.E and severe SFPN. Didn’t work out 😅🫠 it’s a huge battle in the U.K to get saline at home. Even in hospital they don’t understand the need.
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Very severe M.E & a local hospital that treated you in the past in inhumane ways. So you just have to deal with your breathing stopping. Could this be to do with
#MESPINE
or suspected CCI? Alice says this is the least of her worrying symptoms.
#apnea
#centralapnea
#sleepapnea
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@sublimepilgrim
So sorry for your daughter, I’ve found my oximeter has helped a lot as I can now see how fast my pulse is instead of just feeling it race all the time. ♥️
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@SarahLizzyLou
The weird thing with Alice is within the same hour her heart rate was also 110 and O2 sats 95. It seems to always be changing. 😅
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@OzzyisanOtaku
Thank you, Alice has an amazing M.E consultant but sadly the things he’s asking and wants to be done the GP has to agree too. 🫠🫠🫠🫠🫠🫠
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Hi! Alice had a test for Ankylosing Spondylitis. This is the result, we have no idea what it means. Anybody have any idea? 😅 We have to wait 3 weeks to wait to be told what the result means.
#AnkylosingSpondylitis
#pwME
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Karmas a relaxing thought…
#acuseeds
Acuseeds have a 2 star rating on trustpilot from 39 reviews. Seems a lot of people aren't happy with the product or service with the inability to cancel an order, only getting part of it or seeds falling off and into the ear canal, aside from not working.
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@DafoeWhitney
I really, really needed to hear this today. Of course I absolutely hate that others are going through the same. But sometimes it’s good to know you’re not alone, especially on holidays 🤍
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@TheChronicColab
has given Alice and I hope these last few weeks, they deserve this.
One final try with this idea.
@mrjamesob
could you RT this please.
We are looking for nominations via RTs for an organisation to receive £300 raised from the sales 6 of these.
The organisation with most mentions will get the donation
RTs really help
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Alice has an oxygen concentrator but hasn’t been able to use it as it’s so loud and the vibration causes too much distress. But what’s interesting is air flowing air can be too much for her to cope with and adds to her breathing stopping.
How are you supposed to cope?
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You can follow Alice on Instagram
@aliceandthemillions
&
@alicefricker
to see past and future updates. 🤍🤍🤍
#chronicillness
#neisvoid
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A new post I just shared on my Instagram
@aliceandthemillions
Please read, if you can spare your energy. 🤍🦋
#pwme
#severeme
#MyalgicEncephalomyelitis
#verysevereme
#chronicillness
#mecfs
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@AngelaMHoward
Penryn. Wishing we didn’t live here. Royal Cornwall Hospital, Treliske is absolutely despicable. They don’t want to help a Very Severe M.E patient. We have had a terrible experience and after 3 days of hell they are turning Alice away! Said they “Don’t know why we’re here.”
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@TomKindlon
We believe I have SFPN in my bladder for 6yrs. I can get up to wee 60x a day. I’m now too poorly I just have to hold it for hrs. The intense urge to wee is always there. Last week I went into hospital for the first time in 5yrs with
#VerySevereME
to try & help SFPN. 😅🥴🤬😭
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@Silas33
M.E sufferers have been suffering longer than Long Covid sufferers with little or no help, hardly ever in the press & certainly not on a Dr's radar. Covid comes along & all of a sudden LC takes precedence. LC is equally as important. But whoever has said this is ignorant in M.E
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When Alice was in hospital last year, they could see she was struggling to breathe. But all their responses as well as GPs is that this is normal for Alice. So they ignore it. However, at the time she wasn’t dealing with Central Apnea. Just air hunger.
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ANY touch causes extreme distress and deterioration. However, having a PICC line would most likely help Alice’s symptoms. Alice desperately needs one. But the thought of having a 50cm+ tube in her arm is horrifying when her SFPN is so severe. Any advice, please? (2/2)
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@TimofejM77894
Alice has MCAS and very often reacts to the medication. It ends up causing severe PEM and doesn’t recover from the crash. And because her symptoms are so severe they won’t let her sleep even if drugs make her drowsy 😅
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@TraceyABurgess
@CareRoyal
Same here! Alice was admitted at 12 being told she had an ED when in fact she was just hyper hypertensive to taste. 8yrs on and it’s worse than ever before. So traumatic😅
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@AngelaMHoward
Yes! Alice met her, told Alice some pretty horrific things. Tried to turn Alice against family.
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Any help please?
I’m a
#verysevereme
sufferer with
#Mastcell
I react to all drugs even ones that treat
#MCAS
So my Dr has decided to try much simpler drugs. They’ve given me Cetrizine 4 times a day, I’ve taken one already and I’m reacting very badly.
#mastcellactivation
#mecfs
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