Maria-louise Williams @Mariararoo Twitter profile

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Maria-louise Williams

@Mariararoo

5 months

@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 !

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Maria-louise Williams

@Mariararoo

5 months

@Naomi_D_Harvey @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!

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Maria-louise Williams

@Mariararoo

5 months

@Naomi_D_Harvey @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 .

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Maria-louise Williams

@Mariararoo

5 months

@JanetDafoe @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 .💙

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Maria-louise Williams

@Mariararoo

5 months

@Naomi_D_Harvey @ThePOTSPostman Thank you 💙 They are going to remove my NG next week & get a speech therapist to Help me eat ! Also

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Maria-louise Williams

@Mariararoo

6 months

Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings. - Sign the Petition! via @UKChange

Sign the Petition

Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.

www.change.org

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Maria-louise Williams

@Mariararoo

5 months

@DressFor_ME @ThePOTSPostman @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.

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Maria-louise Williams

@Mariararoo

7 months

@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 .

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Maria-louise Williams

@Mariararoo

1 year

@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 .

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Maria-louise Williams

@Mariararoo

5 months

@swastrosarah @ThePOTSPostman @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!

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Maria-louise Williams

@Mariararoo

2 years

@BhupeshPrusty Thank you so much for all you hard work it means so much. Happy New year.

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Maria-louise Williams

@Mariararoo

3 years

@DafoeWhitney Sorry Whitney I'm in the UK.Hope you get people to help 💙

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Maria-louise Williams

@Mariararoo

1 year

@Silas33 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🙄

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Maria-louise Williams

@Mariararoo

1 year

@madeleinedaisyr 💙🫂

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Maria-louise Williams

@Mariararoo

3 months

We need this to stop now! #SaveCarlasLife #VerySevereME #ExposeMENow #DontLetMEDie #MillionsMissing #SevereME

Alisontomyradioooo

@arisonsned

3 months

Losing consciousness, stroke-like symptoms, seizures - Carla who has v.severe MECFS & orthostatic intolerance needs urgent help, instead Drs ignore experts, cause suffering with light & sound & cancel referrals. This MUST change NOW #SaveCarlasLife @rcphysicians @PSCommissioner

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Maria-louise Williams

@Mariararoo

3 years

@tweetingmole @TomKindlon @Dan_Wyke Predictable! I'm guessing the "Top doctors" are psychologicyst! Why can't they concentrate on the many patients that actually need psychological help and leave us alone Ffs ! #ME #spoonies

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #DontLetMEDie #ExposeMENow #SevereME

Julie Houston

@JulesAHouston

3 months

This is 2024, not 1924. We won't accept this treatment any longer @gmcuk @rcpsych @RCPhysicians . NICE guideline NG206 routinely ignored by HCPs @NICEComms . Patients abused, harmed & neglected. #SaveCarlasLife #ExposeMENow #SevereME #VerySevereME #MedTwitter #DontLetMeDie

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Maria-louise Williams

@Mariararoo

3 years

The National Institute for Health and Care Excellence: Publish the NICE ME/CFS Guideline Now - Sign the Petition! via @UKChange

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Maria-louise Williams

@Mariararoo

1 year

Petition: Urgent funding for research into Long Covid and ME/CFS treatments and cures

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Maria-louise Williams

@Mariararoo

3 years

@greenecharmer9 Unfortunately this sounds like the norm in the UK for #ME patients.Stay strong and try not to let them get to you. #Spoonies #MEcfs

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Maria-louise Williams

@Mariararoo

3 years

@Bexypie @agy_lena Thinking of you @agy_lena Hope your as okay as you can be💙

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Maria-louise Williams

@Mariararoo

3 years

@JanetDafoe So Sweet 💙

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Maria-louise Williams

@Mariararoo

3 months

@PCCC90 @Rachael_Swindon @NicolaCJeffery 🫂💕

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Maria-louise Williams

@Mariararoo

3 months

@katie_andME 🫂💕

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Maria-louise Williams

@Mariararoo

1 year

@JulesAHouston Thank you Julie l have severe M.E No medical help I crashed out missed over half the conference 🙄but from what I did see it blows my mind how we can still be ignored & stigmatized there's so much proof!

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Maria-louise Williams

@Mariararoo

6 months

@Silas33 @TwigGlobe @AlanCarson15 Seems like the pshyc's who treat us in this way need to work on their behaviour & their own false beliefs, specifically their inability to accept scientific evidence .

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Maria-louise Williams

@Mariararoo

8 months

I've signed up for a study on the Long Covid and ME in the Visible app. Join me and help contribute to this important research!

Join Research into Long Covid and ME/CFS

Your data can make a difference. With Visible, taking part in research has never been simpler. You can sign up to studies right from your phone.

www.makevisible.com

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Maria-louise Williams

@Mariararoo

5 years

#NewProfilePicture

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow #DontLetMEDie #VerySevereME #MillionsMissing #SevereME

Dan Wyke 🦠➡️🧠🔥

@Dan_Wyke

3 months

Carla’s ordeal echoes the tragic deaths of Merryn Crofts and Maeve Boothby O'Neill. The NHS must stop the maltreatment and neglect of severely ill #MyalgicEncephalomyelitis patients. #SaveCarlasLife #MECFS #ExposeMEnow @gmcuk @RCPhysicians @NHSEngland

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Maria-louise Williams

@Mariararoo

6 months

@TheSunshineVit1 @louise_today @Silas33 I have crohn's disease ( in remission) That fatigue is nothing like PEM it's more like feeling very worn out .I have severe M.E & would swap back to active crohn's in a heartbeat .

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Maria-louise Williams

@Mariararoo

1 year

I just unlocked The Lamp of Wisdom in the Chronic Illness Survey Adventure! Help us light the way to better understanding of #MECFS #POTS #MCAS #hEDS #longCOVID #healthies . Find out more on our epi page at #MEAction .

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Maria-louise Williams

@Mariararoo

2 years

@pausedME 💜

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Maria-louise Williams

@Mariararoo

3 years

@gigivsthegalaxy So good to hear you got your lovely voice back Gigi 💙

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Maria-louise Williams

@Mariararoo

2 years

@cate_neill @AimeeLoveloves Well done💙I need to find the strength to do this too.

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Maria-louise Williams

@Mariararoo

3 months

@broadwaybabyto 🫂💕

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Maria-louise Williams

@Mariararoo

3 years

@DafoeWhitney Sometimes it's so difficult not to do that, especially when we are made to feel like we choose to be ill by the miseducated.Take care 💙

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Maria-louise Williams

@Mariararoo

3 years

@pain_lyn Sorry to hear of your unnecessary suffering.I hope you find something to take the edge off your pain 💕

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Maria-louise Williams

@Mariararoo

2 years

@Sabrina_Poirier 💜

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Maria-louise Williams

@Mariararoo

1 year

To all the Doctors that like to gaslight patients with M.E (NOT Cfs) maybe you should educate yourselves rather than do more harm !! I and many many others are waiting for the cure you have blocked & buried the science so you can continue your narrative .Shame on you!

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow #DontLetMEDie #VerySevereME #MillionsMissing #SevereME

@TheChronicCollaboration

@TheChronicColab

3 months

We need to share this as widely as possible #SaveCarlasLife Carla has now been having seizure-like events for over FIVE DAYS yet @WestMidHospital has STILL not sent a neurologist to see her, as of 10am today. She had NEVER had them before being admitted there #ExposeMENow WATCH

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Maria-louise Williams

@Mariararoo

2 years

@elysekiera Thank you for this it's a struggle to make ourselves understood with this said it so well.Must have taken so much energy.💜

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Maria-louise Williams

@Mariararoo

3 months

The likes of the BBC, Guardian, and Daily Mail are set to have their own disinformation used against them

The likes of the BBC, Guardian, and Daily Mail are set to have their own disinformation used...

A campaign group will target UK media outlets during global ME Awareness Day - calling out what it calls systemic "mis-and-disinformation"

www.thecanary.co

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Maria-louise Williams

@Mariararoo

6 months

@cfs_jo I wake up with adrenaline rush like symptoms but rarely dream .I have the visible app & arm band I get heart rate as high as 160 & as low as 30 whilst sleeping I have severe M.E almost very severe not been able to swallow hardly anything just tiny sips since boxing day.

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Maria-louise Williams

@Mariararoo

5 years

@myalgicjulia So beautiful

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Maria-louise Williams

@Mariararoo

1 year

@MarieThereseBka I have severe M.E Nurse came to do blood tests asked why are you in bed ? Is it Just M.E! So infuriating ! Also chest consultant there's nothing wrong with your breathing just deconditioned ! Do some exercise ! Discharged me ! I'm bedbound it's crazy the way we are treated !.

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow

@TheChronicCollaboration

@TheChronicColab

3 months

#SaveCarlasLife #ExposeMENow live from West Middlesex hospital

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Maria-louise Williams

@Mariararoo

6 months

@SurvivingCFS Yes feel like that now 💜🫂

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Maria-louise Williams

@Mariararoo

1 year

@JoePhilosophe Maybe if we all did this then there would be a lot less gaslighting.

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Maria-louise Williams

@Mariararoo

6 months

@cfs_jo 💜💙🫂

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow #DontLetMEDie #VerySevereME

Naomi Harvey PhD #WearAMask “Naomi Hammy Dodger”

@Naomi_D_Harvey

3 months

#SevereME trending in News with 1,318 posts Doesn’t say how many posts we have for #SaveCarlasLife and #ExposeMENow But please share and tweet for this online protest 🪧 if you can 🙏🏻 this is the only way our voices can be made loud to get attention for this urgent matter.

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Maria-louise Williams

@Mariararoo

2 years

@DafoeWhitney 💙

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Maria-louise Williams

@Mariararoo

1 year

@hopefullizzy Well said Lizzy .Thank you.💜

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Maria-louise Williams

@Mariararoo

1 year

#pwMEcfs

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Maria-louise Williams

@Mariararoo

5 months

@sinusdoc_nj @ThePOTSPostman No I'm still vomiting. Not had brainstem mri only small bowel mri & gastroscopy .I asked doctors if I could have an NJ they said No they need to do more assessments including a psych assessment! Apparently swallowing difficulties aren't M.E related so the doctors say 🙄

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Maria-louise Williams

@Mariararoo

4 years

@jan_choutka Thank you so much!

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Maria-louise Williams

@Mariararoo

3 years

@KammilleRiz Thank you not one in particular.

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Maria-louise Williams

@Mariararoo

3 months

@TheChronicColab 🫂💕

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Maria-louise Williams

@Mariararoo

1 year

Petition: Urgent funding for research into Long Covid and ME/CFS treatments and cures

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Maria-louise Williams

@Mariararoo

5 months

@CraftyMissB @ThePOTSPostman @JanetDafoe Thank you 💙

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow #DontLetMEDie #VerySevereME #MillionsMissing #SevereME

Phil Prydderch 🏴󠁧󠁢󠁷󠁬󠁳󠁿 🇺🇦

@PJPrydderch

3 months

Imagine being so sick it’s agony to eat, going to hospital for help, instead doctors cancel referrals, ignore experts’ instructions & cause MORE pain, whilst you rapidly deteriorate to seizures & unconsciousness because they think #ExposeMENow is psychological #SaveCarlasLife

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Maria-louise Williams

@Mariararoo

3 years

@pausedME Hope it went well 💙

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Maria-louise Williams

@Mariararoo

1 year

@agy_lena I totally feel the same ! I really wish I was the type of person who is happy to do nothing but even doing nothing we are fighting just to exist .

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Maria-louise Williams

@Mariararoo

7 months

@saffronandsky @Rivkatweets I asked my gastro consultant recently if I could go back on it but he can only authorise it for active crohn's disease unfortunately.Tbh rather have active crohn's than severe M.E in a heart beat but its in remission.

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Maria-louise Williams

@Mariararoo

3 years

The National Institute for Health and Care Excellence: Publish the NICE ME/CFS Guideline Now - Sign the Petition! via @UKChange

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Maria-louise Williams

@Mariararoo

6 months

@exceedhergrasp1 Thank you Jaime I completed up to chapter 5 not had email for 6 ,I'm severe/very severe is there a link I seem to have lost my login can you or anyone help please .

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Maria-louise Williams

@Mariararoo

3 years

@MissFlowerPixie That's very interesting as I got my first M.E.symptoms shortly after having the oral polio vaccine I was also on steroids for Crohn's at the time I've never considered a connect before.

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Maria-louise Williams

@Mariararoo

6 months

@KhullainPaints Congratulations!🥳

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Maria-louise Williams

@Mariararoo

1 year

@chydorina Sounds amazing! We so need this.

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Maria-louise Williams

@Mariararoo

11 months

@agy_lena 💜

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Maria-louise Williams

@Mariararoo

3 years

@greenecharmer9 Yes we really need this .I hope you improve and get home as soon as you can.Stay strong 💙 #ME #spoonies

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow #DontLetMEDie

ME Foggy Dog 💙

@MEFoggyDog

3 months

3862 signatures right now. Everybody taking part in #SaveCarlasLife #ExposeMENow - this will benefit Carla and the Carlas, Millies, and Karens of the future. #pwME #SevereME

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Maria-louise Williams

@Mariararoo

3 years

How do I translate languages to English on here? Can't find it anywhere!

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Maria-louise Williams

@Mariararoo

3 years

@pain_lyn 💕Sending hugs and healing wishes

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Maria-louise Williams

@Mariararoo

2 years

@hansmollman Same here 😂

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Maria-louise Williams

@Mariararoo

4 years

@JanetDafoe Happy anniversary!

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Maria-louise Williams

@Mariararoo

3 months

@JanetDafoe 🫂💕💐

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Maria-louise Williams

@Mariararoo

1 year

@paulie_paulie If I don't eat my body keeps my blood sugars in normal range .Blood pressure & heart rate all over the place crazy lows & highs low ox sats I'm trying to monitor everything to send evidence to my GP any advice what to do ? I'm bedbound with limited cognitive function .

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow #DontLetMEDie #VerySevereME

elle carnitine 🍉

@elle_carnitine

3 months

Carla’s parents brought her to West Middlesex hospital because of malnutrition secondary to severe ME. Instead of nutritional support, she’s been detained by psychiatrists who’ve prevented her from being seen by gastro. Her health is declining and she could die #SaveCarlasLife

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Maria-louise Williams

@Mariararoo

1 year

@halcionandon 🫂💙

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Maria-louise Williams

@Mariararoo

2 years

@xenasolo Take care 🌻

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Maria-louise Williams

@Mariararoo

11 months

@LibbyMbc 💜💜💜

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Maria-louise Williams

@Mariararoo

4 years

@mermhart Thank you so much Miranda 💕

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Maria-louise Williams

@Mariararoo

3 years

@DafoeWhitney It must take you so long and so much energy to write ! ...it takes me hours to just reply to a message.Thank you so much for everything you do 💙

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Maria-louise Williams

@Mariararoo

3 months

I just nominated INVEST IN ME RESEARCH

I just nominated a charity to win £5,000. You can nominate your favourite too.

health.movementforgood.com

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Maria-louise Williams

@Mariararoo

3 years

Any one know of any #dentist 's in East Sussex who do home visits or have #NHS places available with wheelchair acsess ? I haven't been to the dentist for 3 yrs due to severe M.E. #ME #spoonie

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow

@TheChronicCollaboration

@TheChronicColab

3 months

West Middlesex Hospital claim “staff are committed to following…NICE guidelines”. Clearly not true in Carla’s case, in fact they seem to be actively flouting them. Action is needed urgently to #SaveCarlasLife ! #ExposeMEnow @PSCommissioner @PHSOmbudsman @ptsafetyNHS

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Maria-louise Williams

@Mariararoo

3 years

@sarahallegra I am still sick & disabled in my dreams but I have dreams where I'm flying around in a helicopter so I'm not bed/housebound 💙

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Maria-louise Williams

@Mariararoo

6 months

@julierehmeyer 💙💜🫂

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Maria-louise Williams

@Mariararoo

3 months

#SaveCarlasLife #ExposeMENow #DontLetMEDie #VerySevereME #MillionsMissing #SevereME

Kirst

@kirstler31

3 months

The neglect of #MECFS patients is the biggest medical scandal of the 21st century. We are screaming from our beds for help. Who is going to expose this once and for all? #SaveCarlasLife #ExposeMENow

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Maria-louise Williams

@Mariararoo

1 year

I just unlocked Amaterasu's Necklace in the Chronic Illness Survey Adventure! Can you help us achieve balance by sharing this message? We need to be sure we get enough people with #MECFS , #POTS , #MCAS , #hEDS , #LongCOVID , & healthy controls.

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Maria-louise Williams

@Mariararoo

3 months

@TheChronicColab @WestMidHospital So horrendous! I have No words! 💔

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Maria-louise Williams

@Mariararoo

10 months

@JanetDafoe 💜🫂🩵

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Maria-louise Williams

@Mariararoo

3 years

The dentist I was registered with can't see me until April as I'm no longer registered with them as my #NHS lapsed as I'd not been for 3yrs they spoke to me like I just couldn't be bothered to go or something! #ME #chronicillness #Spoonies #Disability #Disabled #Dentist

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Maria-louise Williams

@Mariararoo

2 years

@newwavetrash 💙

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Maria-louise Williams

@Mariararoo

1 year

@JoyInTheSeasons That's so good to hear 💙

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Maria-louise Williams

@Mariararoo

5 months

@DressFor_ME @ThePOTSPostman @swastrosarah Thank you 💙

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Maria-louise Williams

@Mariararoo

7 months

@agy_lena I'm similar 5ft 9 & 64kg my readings on body analysis scales look like I'm very fit borderline athletic .I'm almost totally bedbound for over 10yrs lost count tbh .Even still have defined abs despite hardly moving .

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Maria-louise Williams

@Mariararoo

5 months

@DafoeWhitney Thank you Whitney well said 💙

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Maria-louise Williams

@Mariararoo

3 months

@IanBourneArt Exquisite!

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Maria-louise Williams

@Mariararoo

6 months

@CraftyMissB 💙💜🫂

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