Katie @katie_andME Twitter profile | Pikagi

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Katie

@katie_andME

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19 year old bedridden for over 3 years with severe M.E. ill since 2017 #ME #MECFS #severeME #verysevereME

United Kingdom

Joined July 2020

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@katie_andME

Katie

1 year

#VerySevereME since 15, now 18 and in that time I have spent over 8 months of my life in hosptial and only been made worse by it. Pushed to unconscious told it’s all psychological. Scared and forced into GET and left terrified of medical professionals. #DontLetMEDie

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@katie_andME

Katie

2 years

It’s #SevereMEday today. Next month marks two years of me being fully bed bound, of having to do all toileting in bed, of being unable to sit upright, stand or walk, of being reliant on a hoist for any very occasional transfers. Two years beyond words. #SevereME

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Katie

2 years

I’m really struggling after covid. Managing a lot more time on my phone with dark glasses but no bed baths, crashing multiple times a day (eating, noise, light, raising the bed). My symptoms are so overwhelming. Not coping well & hate is not a strong enough word for this illness.

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Katie

4 months

Just over 3 years ago I was discharged from a 7 month hospital stay where I was repeatedly and deliberately pushed to unconsciousness, made to faint on a tilt table several times a week, had the lights switched on and blinds opened when it caused pain #ExposeMENow #SaveCarlasLife

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@katie_andME

Katie

2 years

Still in hosptial. I’m really struggling. Getting weaker and ME more severe. Less than an hour sleep a night for a week. Still not keeping things down so IV fluids and IV/IM meds (the ones they can). Today they have mentioned tubes. Scary situation.

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@katie_andME

Katie

2 years

Covid and severe ME is a very rough combination

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@katie_andME

Katie

11 months

So, tomorrow (23rd) is my 19th birthday, my last year as a teenager. I got ill just after turning 13 so every year of my teens. Birthdays are so hard because they really make me reflect on what I’m missing and how different my life is. But I’m grateful for this community.

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@katie_andME

Katie

2 years

Two years since I lost the ability to walk due to #SevereME Two years of being bed bound reliant on full time care. Since I entered my bedroom, had a shower. I’m thinking of everyone who’s had severe/very severe ME for years and decades longer. Of everyone no longer here 💙

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@katie_andME

Katie

4 months

Dealing with the death of a family member as someone with severe ME, who is completely bedbound and unable to leave the house, I’d extremely hard. I saw my grandma once in the last 4 years. Wasn’t able to say goodbye and won’t be able to attend the funeral. And PEM from grieving

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@katie_andME

Katie

1 year

The specialists who wrote this paper are ignored time and time again when they try to step in to save lives and I’ve seen it myself. #DontLetMEDie @NHSEngland @DHSCgovuk this is what you allow to happen. We need inquires. We need help.

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Life-Threatening Malnutrition in Very Severe ME/CFS

Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointe...

www.ncbi.nlm.nih.gov

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@katie_andME

Katie

2 years

And I am not remotely the worst. It’s been shorter for me than for so many others. I’m able to use my phone, the most severely ill are not online and are unable to communicate or share. So please don’t let remembering those with severe and very severe ME be confined to today.

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@katie_andME

Katie

2 years

My PEM from Christmas is severe, but for the first time in over 2 years I made it to the dinning room table thanks for my powerchair. We actually felt like a family for a bit. Something #severeME took away. I hope next year we can all celebrate more ❤️

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@katie_andME

Katie

4 months

I would beg them to stop and they wouldn’t, until I would loose the ability to speak, at which point they would say how I wasn’t telling them not to. I hoped the NICE guideline would stop this. But I know from my own experience it hasn’t. And from Millie’s, Karen’s, Carla’s

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@katie_andME

Katie

1 year

Going to hosptial again in November had been the stuff of my nightmares and rightfully so. Left without nutrition for nearly 20 days, noisy, bright environments when I needed a dark room and silence. Getting weaker and desperately needing help. #DontLetMEDie So many in worse

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@katie_andME

Katie

2 years

@DrFrancesRyan The person “interviewed” @medicalmarybeth has shared on Instagram the quotes from her are falsified and she didn’t even have an interview!

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@katie_andME

Katie

2 years

Todays #MillionsMissing protests. This month marks 5 years of my ME. Picture on the left is me at 13, days before, already with shingles and beginning to disappear from the outside world. Picture on the right is me at 18 bedridden and forgotten. Fund research and treatments!

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@katie_andME

Katie

2 years

Had a positive appointment with my ME specialist earlier. I’m starting new medication and he’s also going to write something stronger this time discounting the previous working FND diagnosis since they were always ME symptoms - which I knew but they ignored

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@katie_andME

Katie

2 years

This why funding and research is so desperately needed for #MyalgicEncephalomyelitis #MyalgicE #MillionsMissing

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@katie_andME

Katie

2 years

Not much of an update, things are the same, still no nutrition, no answers and hospital rapidly making me worse (although they are keen to learn about ME). Having an EGD tomorrow and hopefully maybe answers. It’s scary but my mum is here and your support all means so much ❤️

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@katie_andME

Katie

2 years

@doctorasadkhan Not a long covid child but an ME child for over 4 years. Now fully bed bound and it’s been over 2 years since I could attend school anyway. I wasn’t aware a virus could do that. It’s public knowledge now and with a virus so prevalent among children it should be taken seriously.

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@katie_andME

Katie

1 year

A video and poem I’ve made for this #MEAwarenessDay #MillionsMissing featuring many ME sufferers from around the world and an audio of a poem I’ve written entirely from bed over many (many) months (minus one or two lines inspired by chatGPT). #PwME

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Katie

2 years

It angers me so much that Drs like Knoop, Per Fink, Sharp, Crawley and so many more have all gone completely unpunished for the awful harms against ME patients. Yet someone like Dr Speight, a literal hero among children with ME, was temporarily banned despite saving nor harming

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@katie_andME

Katie

1 year

I had similar happen in hosptial. They would sit me up and do things where I would beg them to stop. Hoist me out of bed into an upright chair, I would pass out and be unconscious for an hour after being put back flat. In the end it was the psychiatrist who told them to stop.

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@katie_andME

Katie

2 years

Will do an update at some point but I’m finally going home. Unfortunately still with many unresolved issues and worse quality of life then I had but a bit of a plan and a follow up to come. So grateful to be going home though back to my bed and peace and quiet. Thank you all 🤍

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@katie_andME

Katie

11 months

Today I have been bedbound for 3 years. I’ve written a blog post with some reflections

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Katie

4 months

@chrisms150 @NeleHelena It wasn’t as a test. I was actually never tested for POTS since they said I was just fainting cause I was used to laying down. It was my phsyio. They would hoist me onto a tilt table, strap me to it and leave me stood up on it until I fainted or passed out.

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Katie

2 years

Needing to put my phone down after having been active on social media today but thank you to everyone talking about Severe ME and raising awareness. This was a post I managed to write. And I also shared some more of the less talked about (undignified) reality of it on my story.

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@katie_andME

Katie

2 years

@banannaomi The very same people who dismiss post viral fatigue of conditions like ME as just being tired. I can’t believe mask fatigue has apparently become a term. Luckily haven’t seen it used it I might lose it

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Katie

2 years

Merry Christmas Eve everyone, I hope people are able to have some joy. I’m thinking of those with very severe ME and those unable to tolerate the presence of family. Or alone/struggling regardless. I’m hoping for some special plans after a difficult week. I appreciate you all ❤️

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@katie_andME

Katie

8 months

I recently launched a website for my handmade greetings cards It would be great if you could check it out. As a bedbound #pwME I’m extremely grateful I have the care and support to be able to do this and my health has improved enough to allow me to do it.

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@katie_andME

Katie

1 year

@PutrinoLab Thank you. So few medical professionals see very severe ME and it truly isn’t possible to imagine it. It’s so important for them to be aware.

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@katie_andME

Katie

1 year

I’ve set up a website blog, for my writing about #severeME #verysevereME Here’s the link for anyone interested, you can sign up for email notifications for posts. #MEcfs #pwME #MECFS

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@katie_andME

Katie

2 years

Been in A&E over 24 hours waiting for a bed. Nothing left to give!

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@katie_andME

Katie

2 years

Was blue lighted to hosptial but my mum is here with me 💙

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@katie_andME

Katie

1 year

I’ve written a poem for #SevereMEawarenessday #SevereMEWeek2023 Next month I’ll have been bedbound for 3 years with #severeME #VerySevereME Here’s the link to the post on my blog. If you have capacity (although not all of us do) please give it a read

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Katie

1 year

I have very much crashed from spending time on Twitter during the #DontLetMEDie protests. This is very severe ME, for those of us still just about well enough to use our phones even that comes with worsened symptoms. But grateful to have joined and for @TheChronicColab work.

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@katie_andME

Katie

1 year

One of my closest friends, Alice, is suffering so much. The second paragraph is really important. We should be able to turn to hospitals but can’t knowing our current health be dismissed, they will worsen us at the same time. Love to Alice and all with very severe ME 💗

@FrickerAlice

Alice Fricker💘

1 year

An update on me and M.E 🫠 Please take the time to read 🤍 #MyalgicEncephalomyelitis #MECFS #verysevereME #severeme #PwME

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Katie

2 years

I’ve had a carer start 9-6pm 5 days a week, my physical health is struggling with it particularly straight after hosptial and that’s making my mental health struggle. I feel so hopeless and helpless, I don’t want to be needing this help (or in general needing 24/7 care) at 18.

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Katie

2 years

Thank you for the birthday wishes on Friday. 99% of my day was laying alone flat in dark room with an awful migraine. But I feel privileged for the birthday I had. I actually sat (very reclined) out of bed for an hour! (normally bedridden 24/7 months at a time) so it was special.

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Katie

6 months

I have Covid again. I had been able to avoid catching any viruses since I had Covid in 2022. I think it’s a huge reason I was able to have the improvement I have had. I can only hope I don’t loose it. Currently feeling dreadful, but I’m still testing positive, I still have hope.

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Katie

3 years

Well I finally sent the email to my maths teacher that I can’t continue. Given I’m fully bed bound he was doing short prerecorded videos explaining the work that I could use at any time. Haven’t managed any work since October but it was only 10 mins a week then

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@katie_andME

Katie

5 months

Currently in hosptial with an infection needing iv antibiotics. We think a cyst became infected but it has turned into cellulitis. Thankfully they’ve been amazing and I’m on a ward in a side room after arriving in A&E yesterday. Will be having a procedure under general to drain.

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@katie_andME

Katie

2 years

@bennessb Or both. Although the fact I can’t leave my bed is quite an obvious reminder. I still get told I look “healthy”. I did an Ig post recently showing a photo of what I may look like on those days. The dark circles and the pallor etc that it’s not invisible, just not looked for.

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@katie_andME

Katie

1 year

It’s #InternationalWheelchairDay and my message is please give #pwME #severeME the wheelchairs they need early enough they can use them and not get worse. I finally have a good wheelchair, I can’t stand or walk but I’m not well enough to use the wheelchair I waited years for.

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@katie_andME

Katie

1 year

I’ve just done an update on my Instagram but thought I would here as well. I’ve been doing a little better energy wise recently. The other symptoms still remain at the same severity or worse and I don’t tolerate time out of bed BUT from my bed in managing more! Very grateful.

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@katie_andME

Katie

2 years

@thane_black I often think about those who had severe ME before social media and texting. It’s lonely enough now even with this community

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@katie_andME

Katie

1 year

I haven’t done an update on here in a while. Some stuff has been worse, some a little better. I’m maybe managing more activity but with more symptoms. Still 100% bedbound, not left bed yet this year but I have managed to start selling a few cards on Instagram which is amazing.

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@katie_andME

Katie

2 years

Sept and Oct have far to many anniversaries that never should have happened. 3 years since 1st lot of GET just gone, 9th sept is 2 years since start of 7 month hosptial stay + GET and since I walked. 5 years of ME in Oct. And my 18th birthday in the middle swallowed by #severeME

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@katie_andME

Katie

2 years

I watched unrest for the first time. And I’m ashamed to say I’m slightly disappointed. I think I just expected a miracle that could help explain it to those who don’t understand. It was great from the view of a patient though. The millions missing protest was emotional!

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@katie_andME

Katie

2 years

I’m incredibly lucky to have found a good doctor now. And I’m starting to trust I don’t need to be scared for these appointments with him and that he won’t gaslight me.

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@katie_andME

Katie

2 years

@DisabledEliza [CW talk of medical abuse] I’ve had multiple rheumatologists proudly share that if someone came into an appointment with a wheelchair or other they would be made to walk out independently no matter how much they screamed/cried/fainted/passed out. Explains how I was treated

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@katie_andME

Katie

1 year

Well I thought Wednesday with the PA went really well and I was so happy but she’s resigned with immediate effect. I’m devastated and feeling so defeated. I don’t want to need care let alone be messed around. I thought she was the right fit. Just so sick of it all.

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@katie_andME

Katie

1 year

They would deliberately make me pass out so it would stop happening in future. It never did and I just got worse and worse. Ironically they called the psychiatrist in to watch it happen and tell me I was wrong, that it was psychological, he apparently was fuming with them.

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@katie_andME

Katie

2 years

With two stronger antiemetics I’m just about holding nutritional drinks and some food down. Still a lot of symptoms, pain and unpleasantness and at the other end. MCAS has been playing a big part but they are doing more tests, a colonoscopy due to finding inflammation on my MRI.

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@katie_andME

Katie

4 months

@smettbonia Thankfully, although I remain completely bedbound, I’m doing so much better than I was at that point. I was treated the same way by phsyio at home and safeguarding threats meant I couldn’t refuse. Since it’s stopped I have improved. I just wrote this

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@katie_andME

Katie

3 years

@FrankSm42564539 @brianvastag @dgurdasani1 Yes that’s exactly what post exertional malaise is that it happens when you do go much. I apologise for unsolicited advice but it sounds like your experiencing a boom and bust situation. When your fatigue is at baseline you do a lot, which causes PEM and increases symptoms a lot

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@katie_andME

Katie

2 years

So waiting for a colonoscopy at some point this week. Hopefully soon as desperate to go home. The MRI showed inflammation of the small bowel along with narrowing and the colonoscopy will hopefully reveal more. They didn’t expect it to show anything and neither did I!

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@katie_andME

Katie

3 years

@SallyClareR One misconception is that it makes you feel worse though which is untrue. I like to that that resting doesn’t make you better but stops you being worse so keeps you better

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@katie_andME

Katie

2 years

So gastro have intervened and changed their mind on nutrition and feeding. They want to just continue waiting without nutrition as well as wanting to reduce the fluids. I’m really mentally struggling being here and just want to go home.

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@katie_andME

Katie

4 months

111 have advised I go back to A&E in-line with my discharge paper work, due to a worsening of the abscess. Swelling, turning black and leaking fluid. So a non emergent ambulance was arranged at 8pm. Think I’ll be waiting a while. I so don’t feel well enough but it’s needed.

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@katie_andME

Katie

1 year

Alice’s ‘care’ has been absolutely awful. Sadly not only do we see complete ignorance when it comes to #verysevereME we see the specialists who know, ignored, time and time again when they step in to stop the harm. Thats if the hosptial even agrees to talk to them! #DontLetMeDie

@FrickerAlice

Alice Fricker💘

1 year

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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@katie_andME

Katie

3 years

@NickGuthe People who say we should let it rip among children just don’t understand it. They say it’s rare in children so it’s fine (im not even sure if it’s rarer) but this is exactly why. I was 13 when I caught a virus and didn’t recover.

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@katie_andME

Katie

2 years

I have my first PA starting her first shift today. I’ve needed full time care for 2 years and it’s significantly impacted my mums health and our family. I’m excited, nervous, embarrassed, grieving loss of independence and so much else. It’s only 10 hours a week for now but wow.

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@katie_andME

Katie

2 years

@aspoonfulofpain Exactly, aside from my family and people going to school/work I have regular medical professionals coming into my home doing close contact. These people have children and are going out, they will be taking less precautions then my family, they are a huge risk to me

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@katie_andME

Katie

2 years

Already had some of one cake there’s another tonight! Although looking at a few presents (no wrapping) had me unable to talk I am stupidly having some family over tonight to celebrate but it should be lovely. Not what I thought 18 would look like but lovely and I’m grateful.

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@katie_andME

Katie

2 years

The colonoscopy is apparently booked for tomorrow so all the prep today and tonight! Gastro Drs came today and we talked through stuff, hoping it will result in help for the gastro symptoms that have been increasing over the past few months.

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@katie_andME

Katie

2 years

Thank you. I’m back home now already. They were lovely, concerned thinking it might have been cold sepsis, it was all rather terrifying! I did have some IV fluids and meds at the hospital and began to feel better for a bit but of course things are already not going to plan again.

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@katie_andME

Katie

1 year

I had a carer start a couple weeks ago and it’s been going really well. Whilst it’s hard physically and emotionally I’m really happy with it. After nearly 3 years of being a 24/7 caregiver my mum is finally getting a bit of a break. Many can’t get that though, thinking of carers

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@katie_andME

Katie

2 years

@DanaJ120 @DialoguesMECFS @me_awareness I can’t begin to explain the harm the FND misdiagnosis did to me mentally and physically. How much worse my illness got and the trauma caused. The guidelines are completely contradictory and an ME patient being treated for FND is detrimental. Research shows differences.

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@katie_andME

Katie

1 year

Lots of thoughts recently. #ME is not tiredness but I’m so so tired mentally if everything happening. The neglect, fighting, ignorance and lack of recognition of care. Thinking of @FrickerAlice @Lucy_x_Lou_ @Fighting4M_E and everyone else

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@katie_andME

Katie

1 year

Alice is suffering so much. For a #verysevereME patient to go to hosptial it really is serious. No one wants to be there but with #severeME it can make other issues so much worse. The environment itself aside from possible medical neglect. Please keep Alice in your thoughts ❤️‍🩹

@FrickerAlice

Alice Fricker💘

1 year

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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Katie

2 years

I think I’ve recovered from the hosptial stay and am now managing more activity than before I went in, including things that bring me joy! Gastro wise things have settled a bit, but I’m eating less than I was due to reduction of meds but managing with the drinks and it’s okay.

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@katie_andME

Katie

11 months

A new post about illness forcing me to take a different path in life. I’ve been really struggling mentally this week as people go off to uni and I’ve been bedbound for 3 years and sick nearly 6 years.

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@katie_andME

Katie

2 years

Late happy new year. This was my end of 2022 post on Instagram. Misleading pictures but I’m lucky to have managed that many trips out of my bed. Including me eating Christmas dinner at the table (on my tray).

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@katie_andME

Katie

5 months

They did the surgery on Saturday and the pain is a lot better. It was an abscess they think caused by a scratch or something getting infected. They took out all the infection stuff and necrotic tissue. They’ve left it open to heal from inside out. I’m feeling better since then

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@katie_andME

Katie

2 years

@BinitaKane I’m so sorry. It’s because the truth is scary. But thann you. I’m 17 and completely bed bound after getting a virus at 13.

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@katie_andME

Katie

2 years

I did have to back. It’s been one of my worst medical experiences. Lost for words, just want to get home.

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@katie_andME

Katie

2 years

My dad has another virus. I still haven’t recovered from covid which he passed onto me at the start of July. I’m so far from where I was then and terrified of getting even worse when the last months have already tested every bit of strength! So hoping I can avoid it.

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@katie_andME

Katie

5 months

Got home yesterday afternoon. Have basically been mostly just sleeping since. Now to continue antibiotics and recover from it all. Hopefully quickly. I’m truly amazed, the consultant has said she’ll do a home visit for my 6 week follow up! I didn’t even ask.

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@katie_andME

Katie

1 year

Alice, one of my best friends, suffers a huge amount with #VerySevereME and is constantly declining. No one ever deserves this, least of all Alice. I’m always thinking of Alice but that isn’t enough, she needs help and is instead neglected by @NHSEngland #DontLetMEDie

@FrickerAlice

Alice Fricker💘

1 year

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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Katie

1 year

My new PA starts today. I’m excited despite the little sleep from the nerves but when I spoke with her before she was lovely. And we are much better prepared with instructions and things this time.

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@katie_andME

Katie

2 years

@mikerosoft1 @KunstJonas Except time and time again LC research findings are reflecting past ME research. ME is a disease after a virus, LC is a disease after a virus. There are absolutely differences. But over 50% meet the ME diagnostic criteria. The fact ME has wrongful stigma is no reason to ignore it

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@katie_andME

Katie

2 years

I so want to apologise for my tweets having all been negative recently but I’m trying to share my reality without adding a toxic positivity spin on it!!

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@katie_andME

Katie

2 years

Just wanted to say thank you lovely people who replied and messaged me with recommendations. We will ring the gp surgery when they open to see if they will get one of their surgery paramedics or district nurses to do IV fluids at home. If not then 111 but I can’t go anywhere.

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@katie_andME

Katie

11 months

And for the things I’ve been taught in this last year that have allowed for some small improvements. I might not be living my teens like most do, but I am living. I hope this time next year I’m doing better.

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@katie_andME

Katie

1 year

This is absolutely horrific. Safeguarding procedures are traumatic and so physically demanding causing a huge amount of worsening. Often taken against people with ME. #VerySevereME #DontLetMEDie

@FrickerAlice

Alice Fricker💘

1 year

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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@katie_andME

Katie

2 years

I’m so grateful for when I can access this community and only wish I had done it earlier and found out about severe ME. Maybe I could have avoided an FND misdiagnosis.

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@katie_andME

Katie

2 years

@PutrinoLab They only looked at the fact I was articulate, not at changes in scores, or how hard it was to organise my thoughts to be articulate

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@katie_andME

Katie

2 years

Okay they first want try and see if an antiemetic could at least allow me to keep down liquid but I’m not sure I will get the medication down to be able to keep water down, although I hope so, time will tell and my mum is going to continue to prepare a bag in case.

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@katie_andME

Katie

2 years

@DanaJ120 @DialoguesMECFS @me_awareness It’s “upsetting” because it’s detrimental and dangerous. Because it lead them to disable me even further and ruin any last remaining shred of quality of life. Because of FND misdiagnosis they thought it was psychological and TW thought it was okay to push me till I broke.

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@katie_andME

Katie

2 years

Still not keeping anything down. Another night with 0 sleep. Partly because of how scared I am. After 7 months of time in hosptial the thought of them possibly only wanting to do fluids in hosptial is terrifying. I wish people understood severe and very severe ME.

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@katie_andME

Katie

2 years

They planned an NJ tube but since they didn’t fit it in on Friday it has to wait till Monday. Hospitals over the weekend are so frustrating.

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@katie_andME

Katie

2 years

@MountSinaiNYC @brianvastag @DrWinarick @MountSinaiPsych As a severe ME patient thank you. His comments got worse and worse, horrible to read. Scared for any patients who could come across him

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@katie_andME

Katie

2 years

And I will just clarify he is a consultant paediatrician who has faught and saved children with ME and their families from cruel safeguarding processes and was forbidden from any paid or unpaid involvement in ME patients but this was overturned.

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@katie_andME

Katie

1 year

This was an excellent post when Alice originally shared it. She’s gone through so much more in the last week. These words hold even more truth now. We’ve seen over the past 6 months and years the harm hosptial and doctors cause. Thank you for writing this Alice 💙

@FrickerAlice

Alice Fricker💘

1 year

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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Tweet media two

Tweet media three

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@katie_andME

Katie

2 years

I am at least back on the 24 hour fluids again now so that’s something!

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@katie_andME

Katie

2 years

@PutrinoLab Had so many medical write down there was no evidence of cognitive dysfunction, then had a full educational psychologist assessment with a 24 pg report listing the very low scores, noting how the longer she was here the worse it got, so I think those HCP just weren’t observant

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@katie_andME

Katie

2 years

Mum had a call with a GP who is very concerned. They are sending someone to do so observations but no they can’t do IV saline here, if the obs are still good enough they could attempt some here but likely want me at A&E. As terrified as I am I’m also thinking it’s maybe better 😭

@katie_andME

Katie

2 years

Still not keeping anything down. Another night with 0 sleep. Partly because of how scared I am. After 7 months of time in hosptial the thought of them possibly only wanting to do fluids in hosptial is terrifying. I wish people understood severe and very severe ME.

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@katie_andME

Katie

2 years

Ive been at home and am resting. There isn’t much of a plan. Dx on discharge included stricture of the terminal ileum. Plan is just continue with antiemetics (prokinetic ones) although afraid GP will stop them. ‘Treat’ oesophagitis with the same doses of medication I was on.

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@katie_andME

Katie

2 years

@spulliam No it doesn't look cosy and convenient. Maybe for others. But as a severely disabled individual something like this is my only option at being able to use a laptop for education or forothers work.

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