Maria-louise Williams (@Mariararoo) / X

Maria-louise Williams

1,297 posts

Maria-louise Williams

@Mariararoo

Severe M.E warrior (One of the missing millions). Crohn's disease in remission.

South East, England

Joined September 2016

Maria-louise Williams
@Mariararoo
Jan 30, 2024
Replying to @ThePOTSPostman
I am currently on my 2nd week in hospital severe M.E only able to swallow tiny sips of water NG tube fed. Low platelets, high prothrombin I think I have Gastroparesis today doctor said I'm a mystery! And should try & eat ! It's so hard to get them to understand !
7.8K
Maria-louise Williams
@Mariararoo
Feb 1, 2024
Replying to @Naomi_D_Harvey and @ThePOTSPostman
I don't know but they also are doing a psych assessment! unfortunately I can see where this is heading ! Being left to starve to death like many others we have lost from our M.E community. I'm mentally strong but have my limits !Doctors tend to come and see me when I'm asleep!
25K
Maria-louise Williams
@Mariararoo
Feb 1, 2024
Replying to @Naomi_D_Harvey and @ThePOTSPostman
Thank you I do feel I need support but can only just about type brain is so bad I can't find the words .
4.1K
Maria-louise Williams
@Mariararoo
Feb 1, 2024
Replying to @JanetDafoe and @ThePOTSPostman
Thank you so much Janet . The doctors here have decided to remove my NG next week & get a psych assessment also a speech therapist to try and help me to eat ! I'm mentally strong but it's hard to deal with medical professionals that know nothing about severe M.E .💙
2.4K
Maria-louise Williams
@Mariararoo
Feb 1, 2024
Replying to @Naomi_D_Harvey and @ThePOTSPostman
Thank you 💙 They are going to remove my NG next week & get a speech therapist to Help me eat ! Also
1.4K
Maria-louise Williams
@Mariararoo
Jan 7, 2024
Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings. - Sign the Petition! chng.it/rTKCzGyR via @UKChange
Sign the Petition
From change.org
624
Maria-louise Williams
@Mariararoo
Feb 1, 2024
Replying to @DressFor_ME @ThePOTSPostman and @swastrosarah
Thank you I've not been able to contact any charities. I can't type much due to being on a 5 bed ward with bright lights on.
285
Maria-louise Williams
@Mariararoo
Dec 14, 2023
Replying to @NeurologistMom
Yes we need a new name .I have severe M.E mainly bedbound I find CFS insulting as its used as a label to prevent us from accessing treatments that could help & used to stigmatise us .It has to change ! I've been left in a dangerous state many times due to the CFS label .
435
Maria-louise Williams
@Mariararoo
Mar 17, 2023
Replying to @BhupeshPrusty
Thank you this means so much that you are all working so hard for us so we can live instead of fighting to survive .
235
Maria-louise Williams
@Mariararoo
Feb 1, 2024
Replying to @swastrosarah @ThePOTSPostman and @The_MRC
Thank you 💙 I've not been tested for Gastroparesis recently but 12 years ago capsule camera test showed I had slow gastric emptying. Tried to tell doctor this yesterday he said If anyone is tested due to stress they will get a diagnosis of Gastroparesis even himself!
263
Maria-louise Williams
@Mariararoo
Dec 31, 2022
Replying to @BhupeshPrusty
Thank you so much for all you hard work it means so much. Happy New year.
281
Maria-louise Williams
@Mariararoo
Nov 9, 2021
Replying to @DafoeWhitney
Sorry Whitney I'm in the UK.Hope you get people to help 💙
Maria-louise Williams
@Mariararoo
May 12, 2023
Thank you Stephen I crashed out during the lunch break woke up 6hrs later gutted I missed @BhupeshPrusty talk.I guess it's pretty ironic crashing out during an M.E conference🙄
189
Maria-louise Williams
@Mariararoo
May 12, 2023
Replying to @madeleinedaisyr
💙🫂
882