Jessica Taylor-Bearman
@jayletay
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Author of A Girl Behind Dark Glasses and A Girl in One Room. and A Girl Beyond Closed Doors Winner of Best Non-Fiction at The People’s Book Prize She/her
UK
Joined May 2010
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What you should know (A THREAD)
I became ill with M.E. at 15, due to a virus. I disappeared from my life.
Since 2006, I have spent 1825 days in hospital.
I was bed bound for 12 YEARS and housebound for longer.
I've had 4745 blood thinning injections. (1)
#PwME
#MedTwitter
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So I was in a restaurant when some random stranger came up to me, put her hand on my wheelchair and then said “go on then, tell me why you’re in the wheelchair.”
Like why oh why would you expect me to tell someone my PRIVATE medical history because I’m in a wheelchair? (1/2)
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To make matters worse, I was with my children and this stranger then said in a matter of fact way “so what’s your children’s names? I’ve been watching them.” She then went to speak to my four year old daughter and ask her her name.
What. The. Actual. F***
(2/2)
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My lockdown has lasted over a decade. I've spent most of that time unable to leave my bed... My entire world revolved around four walls.I know it's hard to imagine... I'm not really asking you to try... I'm just asking for some understanding. Love from a chronic illness sufferer
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It's a very scary time to be disabled in the UK.
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IDK what to say re
@NICEComms
"pausing" tomorrow's new guidelines on M.E. Let me remind medics that I nearly died due to GET...I'm traumatised beyond believe& i can still hear the physio sitring me up further despite my sobs. I remember saying no and I remember being ignored. 🥺
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#ThankYou
#Baby
#ThankYouNHS
My consultant looked after me so incredibly well. He was so caring and really tried to understand the M.E. He fought the other doctors who had no idea about what our plan was and he made sure that he was the one to see me being discharged.
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Our beautiful baby Felicity 🥰. We are both doing ok, born by c section, weighing 4lbs12. She is currently in the special baby unit but is doing well.
I’d like to introduce you to our beautiful daughter Felicity
Taylor-Bearman. Born 19/07/19
#Family
#CircleOfLife
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My simple message is the world needs to wake up to Myalgic Encephalomyelitis.
I was hospitalised in 2006 it was horrendous. Lot of the treatment questionable. I live with the trauma now.
How is the treatment still like this 18yrs later?
#BringMillieHome
#DontLetMEDie
@gmcuk
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Suffering with M.E. is not a choice
Suffering with M.E. Is not a choice
Suffering with M.E. is not a choice
Suffering with M.E. is not a choice
Suffering with M.E. is not a choice
Suffering with M.E. is not a choice
How many times does this need to be written for people to grasp?
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I’m just so overwhelmed to say that I won the
@PeoplesBkPrize
for non-fiction! Thank you everyone who voted and a massive congratulations to
@hashtag_press
for winning best publisher!
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18 yrs ago, when I was first admitted, the dr had never seen someone who was bed bound with M.E.. This was the M.E. consultant at the hospital. So they went down the psych line, trying to put me in a locked ward. How has treatment still not improved?
#SaveCarlasLife
#ExposeMENow
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This was me in 2012. It is when my second book A Girl in On Room is set. I was suffering with very severe M.E. and I was starving to death in hosp. I was malnourished and weighing just 35kg. Doctors didn’t know what to do then. They still don’t know what to do now.
#MaeveInquest
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This is EXACTLY what happened to me. Diagnosed with ME but when a certain Boss Man, decided I wasn't getting better quickly enough and I was affecting his statistics of people getting better under his care, he changed the diagnosis to Pervasive Refusal Syndrome.
#SaveCarlasLife
This is common for because doctors either don’t believe in ME or that it can be so severe. Dr. Nigel Speight an expert on ME has dealt with lots of similar cases. This is a clip about a psychiatrist changed the diagnosis of a girl with ME
#SaveCarlasLife
#ExposeMENow
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I just have to share this moment with you... as you can tell.... I was a little shocked 😮
#PeoplesBookPrize
@hashtag_press
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I am writing a blog post on writing w/ a chronic illness. So far, I've had to stop to take meds, stop to eat something for nausea, stop&move to get a heat pad for pain. So this is a friendly reminder to support ill writers, read/share our blogs&books. It takes so much to do them.
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Today is Severe M.E. Day & I just wanted to do a shout out to those suffering with horrendous illness. I suffered with v.severe M.E. and have written two books about the experience:A Girl Behind Dark Glasses and A Girl in One Room. It's really important that severe M.E. is seen.
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It's been confirmed today via an inquest that my darling friend Merryn passed away from ME. Why did such a beautiful friend have to die for people to believe in
#ME
. My dearest Merryn, up in the sky, know that you did not die in vain. 💖
#pwme
#legacy
#NeverForget
@MEAssociation
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Had an important housing meeting with a social worker and an OT. Was so impressed when the social worker came in and said "I've read your books and I'm getting all my team to read them too. It's important that we understand this disease because we are seeing so much more of it"
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So please support Myalgic Encephalomyelitis suffers. Let us tell our stories. Let there be change. Let the media speak to us. Because at least 12 years ago was the first time I personally asked on YouTube for the world to wake up to this disease. Why does no one listen? (7)
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When you collapse and your one year old daughter walks over to you and starts stroking your face and cuddling you.. She melts me but I wish she didn't have to see it.
#MEAwarenessHour
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Felicity wanted to walk me back to the car from the opticians 😍. Look at her! Isn’t she the cutest?! How has she grown up so much 😩😍❤️
#meawarenesshour
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Today we need to stand (or sit or lay down in my case) in solidarity with Millie, who is in hospital with very severe M.E.. She is being kept against her will, her M.E. deteriorating every day. Hospitals aren't equipped to deal with severe M.E.
#BringMillieHome
#DontLetMEDie
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It has been proven that Graded Exercise Therapy is not a successful "treatment". It's been proven that M.E. is a neurological condition. So why is Millie being treated like her condition is psychiatric?
@gmcuk
@rcpsych
@RCPhysicians
#BringMillieHome
#DonntLetMEDie
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I just want to say a massive thank you for all of your support. Your comments comforted me so much. Felicity is home. She’s just been asleep for over 3hrs. She is on monitoring&we’re making a seizure diary. I’m just holding her closely. Thanks for being the light in my dark.
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On Friday I decided to give the Dr another go..I was suffering with so much pain& couldn't manage anymore..& this dr listened to me for 20 mins&worked out a plan..she tried to understand, which made me cry with relief at being taken seriously..& that's the reality of having M.E.
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It's 18 years since my diagnosis and there have been more people dying of this condition than I ever remember before.
NICE guidelines have changed but there are more sufferers starving in hospital than I ever remember.
It can't continue like this. Our lives matter too. (6)
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If you do one thing tonight, please take a look at this article on very severe M.E. Merryn suffered so greatly, you would be shocked at what she went through. This is M.E.
@MEAssociation
@METrustUK
@karatointon
@jenbrea
#myhero
#pwme
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My fifteenth
#MEAwarenessDay
that I have been a M.E. sufferer... My fifteenth year of being one of the
#MillionsMissing
@MEActNet
#AGirlinOneRoom
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I keep retyping this to find the right words, but it's impossible...
It's devastating.
Maeve shouldn't have died.
There were fundamental failures by medics, and they should've been held to account.
Now medics have a duty to prevent this ever happening again.
#MaeveInquest
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My books are:
A Girl Behind Dark Glasses
A Girl in One Room
A Girl Beyond Closed Doors
These are my two YouTube videos:
The World of One Room
Seven Years in the Making
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I get that self isolating is not fun. Believe me, the chronically ill are WELL aware of this. But I don’t get why folks were piling into pubs last night&beaches today. You know the facts! No one is invincible from this. We’re both counting on you to stay at home for us.
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I am SO excited to share that I won the BEST ACHIEVEMENT award at The People's Book Prize!
"The Best Achievement award is given each year to the author whose book advances the human condition, benefitting their community, or the world at large in some way."
@hashtag_press
#pwME
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An estimated 1.3 million M.E. sufferers. Finally an updated statistic. A bit different from 250k stat that has been used for decades isn't it??
We need biomedical research. Now.
“There are an estimated 1.3 million people in the UK with ME”
Finally an up to date figure.
1.3 MILLION people.
@UKLabour
@Keir_Starmer
@wesstreeting
@10DowningStreet
We need urgent biomedical research, to find testing biomarkers, and treatments.
#pwME
#MECFS
#LC
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I actually feel that this
#MEAwarenessDay
is more poignant than ever. For the past year people have had a dip into the ocean of the isolation
#PwME
suffer with everyday due to
#covid
... But whilst we ease out of lockdown, the reality is that
#PwME
will continue to be restricted
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I was tube fed for 2 years.
I was mute for 2 years.
I couldn't move for 4 years.
I've been shouted at for not getting better quickly enough and "ruining recovery statistics"
I've suffered with severe post exertional malaise with anything I do.
(2)
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Your support has been incredible, but my adrenaline has run out. My body is crashing. I’m in agony, an exhaustion that makes me feel sick. The M.E. Monster is still there, it still has control. We must must fight for a cure because I don’t want anyone to feel this ill. Night 💙
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It is World M.E. Day today and I don't know how to put into words, how much Myalgic Encephalomyelitis has affected my life for the past 18 years. So here's my poem...please share this far and wide.
#WorldMEDay
#pwME
#MEAwarenessDay
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I’m just popping on here to share a story. Gigi is incredibly ill with very severe ME and the hospital she is at is trying to send her to a mental institute. Please share this link And donate if you can
#ForGigi
#CanYouSeeMeNow
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It is
#MEAwarenessWeek
and it marks 14 years since I first came down with ME. I did not die but I have not recovered
#MillionsMissing
. After the
#coronavirus
pandemic has passed, there will be a surge of post viral conditions. Listen to your body. Do NOT push your body through.
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Today is M.E. Awareness day.a day where we ask everyone to take a mo to learn more about our suffering... Even if it is RT a tweet, watching a vid, reading a book to learn more. We need VISIBILITY... We need to be HEARD...because being this ill for so long is hard
#MEAwarenessDay
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I have mentioned the story of a girl called Gigi, a few months ago. Her treatment in the UK has been APPALLING. They are trying to forcibly remove her to a psychiatric hospital even though she has very severe M.E. Our community needs to stand together and
#standupforGigi
#PwME
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Even though health is a bit tricky at the moment, I can't tell you the joy of being able to sit outside and listen to the birds. It never gets old, especially after having spent a decade without going outside at all.
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I don’t normally ask but please send me positive thoughts and prayers. ❤️
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Often I can't hold my head up. The fatigue makes me feel like my head is too heavy for my neck to carry.
I get cramp in my neck that makes it hard to breathe.
Although I have made a lot of improvements, I'm still pretty darn unwell.
I can't get anyone to help. (4)
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I made a video called The World of One Room back in 2012 about the reality of very severe M.E..
I've written three books on my story to try and give visibility to those missing from their lives.
I've painted an art collection which also explains my suffering.
(3)
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M.E. sufferers, I know that today is incredibly triggering. But Carla needs us. It's criminal that she's being treated so badly, it's criminal that it is taken those who are v.unwell to use their energy to protest because no one is helping. But we stand together.
#SaveCarlasLife
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The bravery of Maeve's parents and Maeve herself...
What's so hard to fathom is that this is STILL happening. The severe M.E. Community are TERRIFIED of going to hospital because they KNOW there is no treatment and no understanding.
#MaeveInquest
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I just found out that when you write a
#Hashtag
that has more than one word, you should start each word with a capital letter so that
#VisuallyImpaired
people can get it read out to them via an app that dictates. I thought I would share for future reference!
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My hope has always been that I can use my creativity to create understanding. I want people to feel less alone. I want the world to be different for severe M.E. sufferers now...
BUT... (5)
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Severe and very severe M.E. sufferers shouldn't have to fear going into hospital, they shouldn't have to fear not being believed... but this IS the reality.
#SaveCarlasLife
#ExposeMENow
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That quote is just everything. I did not rest at the beginning because I wasn’t told how to manage my illness. Six months later, I was 15, bed bound, hospital bound, tube fed, unable to speak etc. Nobody knew this would be the case for the next 12 yrs. Who would?
"Nobody ever warned us that ME is progressive if patients do not rest. By the time we discovered this for ourselves, it was too late." ☹️
Individual is "24 now, she lives like a recluse with severe ME/CFS"
From latest
@MEAssociation
magazine.
#MEcfs
#CFS
#MyalgicE
#SevereME
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So I've been thinking more about this positive mantra lark of 'thinking yourself better' that has been circulating. It reminded me that when in hospital long-term, I was seen by a lot of the psych team bc they couldn't understand why I was so positive in my situation.. (1/2)
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@hopefullizzy
@Keir_Starmer
If he really thinks that the reason we're unable to work is "fear" then he's completely and utterly deluded. We'd love to be able to work, but we are all far too ill to work. There's a big difference. 🙄😤
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My one hood bit of news is, my social worker just contacted me to ask me to speak about M.E. with one of their groups, as my books had provided "invaluable information" as to how we need to understand this disease, particularly with the increase in post viral conditions.
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I've been sent to A&E in 10/10 pain that they are concerned is something else and I'm shocked at the state of it. Queuing out of the door, lady behind me who has had a suspected stroke left having to try and stand in a queue, whilst nearly collapsing. Feel helpless.
#SavetheNHS
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We maybe the Millions Missing from society, we may not be represented in the media but we will not be silent when it comes to the treatment of one of our own.
#BringMillieHome
#DontLetMEDie
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I have to say that the past year and a bit has really been the most devastating for M.E. sufferers. The number of severe M.E. sufferers dying from the condition and also down to complete neglect. The amount of cases of neglect within hospitals where sufferers are starving.
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How many more severe M.E. sufferers are going to have to die for the world to WAKE UP to severe M.E.?
I know how isolating it is in hospital when you are so very ill.
We need to show Millie she is not alone. We need to
#BringMillieHome
#DontLetMEDie
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"... Imagine not having the energy to say the next word"
Time to take on the world again (even if it is my own world of one room)...i featured in The Sun today about
#PWME
and
#AGirlInOneRoom
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In other news... My pain f*****g hurts... I don't know what to do with myself... I'm not going to even apologise for the swearing... My whole body is on fire... Tingling from head to toe with nerve pain... Muscular pain...exhaustion and I can't rest...but I can't move... Torture.
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Well isn’t it fabulous that
@unrestfilm
is now an Oscar shortlisted film? No matter what your take on the film is, it shows you categorically that
#pwme
are now being heard. That can only be good news!
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A family friend used to call M.E. 'More Excuses'... This was about 20yrs ago... They saw how ill I got... They visited me in hospital when I was bed bound...yet STILL they insinuated that they didn't see why I was getting the vaccine "early"... 🙄 (1/3)
#AGirlInOneRoom
#PWME
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This is the reason we must continue to fight for better care. It is incomprehensible the suffering that poor Millie is being subjected to. We must be her voice.
#pwME
#MedTwitter
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It gives me a very bad feeling about Dr Charles Shepherd being "stood down" from the NICE guidelines commitee. But I find it even more ironic that this has happened in
#SevereMEWeek
when GET was the main factors as to why I was so severely affected for many many years.
#PwME
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If you've read my books, A Girl Behind Dark Glasses and A Girl in One Room, you will know how instrumental my lil sis has been. At 10, she became my young carer rushing in &out of hosp with me. It pains me so much to say that she's now suffering with long covid. (1/2)
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It is the last day of
#MEAwareness
Month and I have finally finished recording and adding captions to my spoken word poem... Please do give it a listen ❤️
#PwME
#AGirlInOneRoom
#meawarenesshour
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Samuel is 32 years old. He has never smoked in his life. He has been diagnosed with COPD from chronic bronchitis. It's not something that'll go away and I'm struggling to make sense of it. Our house has damp issues and they also think he's been aspirating into his lungs. (1/3)
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It is M.E. awareness week. M.E. is such a misunderstood disease. It's such a challenging disease to live with but even more so, its so damn hard to have lived with a disease for 18 years, over half my life and STILL have no treatment/cure.
#MEAwarenessWeek
#PWME
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That he could see that I was not making up my new symptom, believed in M.E. AND didn’t try to tell me that I was depressed! Instead, I’ve been put on different medication for my tremors. I felt elated to not have to fight to be believed.
#pwme
#millionsmissing
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We need to keep fighting for Karen too. Karen has been in hospital for over four months and she is still being treated horrendously. Please sign this petition and let's share Karen's story
#MedTwitter
#pwME
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I’m officially a published author. Words can’t describe what this means to a girl in a world of One Room.
#wow
#pwme
#millionsmissing
#agirlbehinddarkglasses
#BehindDarkGlasses
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This is heartbreaking. Maeve deserved so much better than what Medicine could and should have been able to provide for her. Thinking so much of Sean and Sarah.
#pwME
#MaeveInquest
"She didn't want to die. She had hopes and dreams and wanted to live."
Channel 4 News spoke to Sarah Boothby and Sean O'Neill, the parents to Maeve, who died in 2021 at the age of 27 after suffering with ME since her early teens.
Maeve's inquest began today in Exeter.
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Today is
#SevereMEDay
and I can't think of a better day for me to unveil my new painting 'The World of One Room'. I spent years confined to my bed in one room...to sick to leave it. My room became my world...so years later I painted what I'd imagined it to be. Please share.
#PwME
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This level of pain is not manageable. I've at least 7 diff types of pain that I suffer with due to the M.E. Monster. Right now there's 5 types pulsing around me. I've been brought to tears. I can't move w/out agony. I can't think w/out pain. I asked for help&was dismissed.
#pwME
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Holy Moly! How incredible has
#TeaPartyForME2021
been?!
@theslowlane_ME
you legend! I have been scouring the pictures of all your cakes! My tea party was with Felicity... We wore blue, we had her blue dolly, we had blue pretend tea and wooden cakes which I had to "eat"😂💙
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It also meant that it was an excuse to get dressed up!
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It is M.E. Awareness week and I was trying to think of a way to express what M.E. has done to my life... So I decided to do it creatively through a spoken word poem...it is in 2 parts because well... It was too long...But I would be grateful for you to watch
#PwME
#AGirlInOneRoom
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I just want to reiterate that no I don’t agree with Graded Exercise (in fact GET nearly killed me) and I haven’t got 'miraculously' better. in fact, I have been slowly improving over many years. I haven’t just willed myself better or just got better because of Samuel .
#PwME
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At long last. Millie should never have had to go through all she has in this past six months, but I’m so relieved she has finally gone home
#BringMillieHome
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It always amazes me how triggering one bad trip to hospital can be for my medical PTSD. Back to having anxiety waking me in the early hours of the morning, back to feeling constantly scared about things I have no control over... It's the reason I wrote my books (1)t
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After an absolute roller-coaster of a 9 days, I'd like to introduce you to my little man born on the 2nd February 2023 at 11:38am, weighing 7lb 14. My planned c section didn't go quite to plan due to the undiagnosed 2 litres of fluid I had making Rupert struggle to breathe. (1/2)
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I have been celebrating turning 33 today. I cannot begin to tell you how grateful I am to have reached this age, because I spent years in and out of very serious medical emergencies due to very severe M.E.
[SPOILER ALERT, I'M NOT BY ANY MEANS BMAGICALLY HEALED]
#PwME
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Whilst at
@florencemachine
yesterday, I met another M.E. sufferer and her daughter, who also has M.E. She told me her story and you know what even now, I am shocked. This poor lady had nearly had her daughter taken away from her for no other reason than her daughter being ill TBC
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Desperately sad that another ME sufferer has passed away today. We need more biomedical research done. NOW.
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Imagine being so v. unwell that it feels like your body is torturing you...every single min of the day. Now imagine on top of this, medics disbelieve you, force you to stay in hosp which is causing more harm. This is what you are doing
@gmcuk
#BringMillieHome
#DontLetMEDie
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#RememberingMaeve
#MaeveInquest
I am thinking of Maeve tonight.
She may not be here now, but her presence is felt, her legacy and the change she’s still making to the world of M.E. with her diaries, is going to help so many sufferers.
So many of us wish we could’ve known her.
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So I can’t believe we are coming to an end of a decade... my life has completely changed. Last decade, my future looked pretty bleak, with doctors telling me I would never walk again...BUT safe to say I’ve smashed mine&their expectations!
#HoldOntoHope
#EndOfTheDecade
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Just caught up with
#MaeveInquest
and I want to thank
@swastrosarah
and
@TimesONeill
making this inquest happen. No-one should suffer like Maeve had to. It's beyond cruel. There must be a change in the system cos there'll be more deaths from this horrendous disease.
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Can’t thank
@CMonaghanSNP
enough for all she achieved with the
#MEdebate
...now we need action for
#PwME
. A year waiting for the NICE guidelines to finally stamp out dangerous GET will be too long for many. It only took 6mnths for me to be hospitalised after GET.
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I’m laying here and my mind is racing..since having Felicity, I want so much for her. I want to provide for her. I want to show her good work ethic. I want to be able to do stuff together.I find it frustrating that I’ve no choice for M.E. dictates my life.
#AGirlBehindDarkGlasses
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It shouldn't be a postcode lottery to whether you receive appropriate treatment, as to whether a NG tube can be inserted, which is literally a matter or life and death.
#BringMillieHome
#DontLetMEDie
Postcode lottery to be able to be fed via an NG tube in your own home? As someone who was fed via an NG tube from home due to severe ME I find it shocking and sickening they won’t allow Millie to be fed at home because of her postcode
#BringMillieHome
#DontLetMEDie
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Such an important report. My dearest friend Merryn, the world is a darker place without you 💔
Myalgic encephalomyelitis: Lives devastated - and sufferers told it's made up
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I honestly cannot believe that this is happening. Please please, let’s amplify Karen’s voice and hold the trust to account.
Video of Karen Gordon filmed on 15 Aug at Conquest Hospital Hastings UK. Please share with as many people as you can. Karen has very severe ME. Please sign our petition to try to save Karen. Scroll down the petition page for latest update.
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A THREAD
I really think that there is a sort of privilege of being able to go to the doctors when you are sick. Heat me out...
I really need to go to the doctors but I'm not well enough to get there. I can't support my head and I'm too exhausted to get there. (1)
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