Leonie Potgieter

Living with M.E. as best I can.
find me @despicablemebsky.bsky.social

[#MEAction Network UK @MEActNetUK]

Contact your MP and urge them to attend the 5th March APPG or ask them to join the APPG. Use link below for draft MP email. As ever, only take part in actions that are within your energy envelope and don't worsen your health.

https://t.co/q51ZF7gKXm
#MyalgicEncephalomyelitis

[Leonie Potgieter @Despicable_M_E]

#MyalgicEncephalomyelitis #ME #MECFS #SevereME
#pwME #pwLC

@Invest_in_ME
@MEResearchUK

[Walk for M.E @Walk_4_ME]

Do you know someone who could Walk for ME?

Find out more:

https://t.co/EmiKfOWkz1
https://t.co/hRuQS7QD2S
Instagram @walk_for_me_
X @Walk_4_ME
BlueSky @walk4me.bsky.social

Huge thanks to @onionhead36 for the video!

[Walk for M.E @Walk_4_ME]

Do you know someone who could Walk for ME?

Find out more:

https://t.co/EmiKfOWkz1
https://t.co/hRuQS7QD2S
Instagram @walk_for_me_
X @Walk_4_ME
BlueSky @walk4me.bsky.social

Huge thanks to @onionhead36 for the video!

[#MEAction Network UK @MEActNetUK]

Big thanks @BrianWhittle & @Gillianmacmsp who mentioned ME in speeches on Women's Health Plan in the Scottish Parliament after visiting #MEAction Scotland's Information Stall last week. It's great to see MSPs listening to #pwME.

#MyalgicEncephalomyelitis #VerySevereME

[Leonie Potgieter @Despicable_M_E]

@MEFoggyDog Would a HR monitor with an alarm that triggers below a certain value, potentially give her some warning before fainting? She may then be able to prevent any nasty falls at least 🤷‍♀️

[CJB @ChrisjbofYorks]

&so it continues!Nothng is changng 4 severe #pwME in @NHSuk hospitals,why not,it’s disgraceful!NHS hav learned nothng! @stephenctimms @andrewgwynnemp @LaylaMoran @CommonsHealth @wesstreeting @MEAssociation @actionforme @SonyaChowdhury @Debbie_abrahams @GeorgeMonbiot @TimesONeill

[Jamie @JamieJaime10]

We need people outside the #MECFS community to pay attention. A severely ill woman has been sectioned and reportedly abused in 2024 because #NHS drs are wilfully ignorant about her condition. ME patients have died this way. Please raise awareness #SaveCarlasLife #Misogyny

[Leonie Potgieter @Despicable_M_E]

#MedTwitter easy medicine that would make a huge difference to a huge number of people.

[Naomi Whittingham @NaomiWhitt]

Recovery stories have been popular in the media lately. My thoughts on why, unless carefully handled, they can be distressing for the very people they seek to support.
🧵(1/4)

https://t.co/yO69hgnFMS

[Larry the Cat @Number10cat]

I want to tell you a story about an old man, with a silly name and ridiculous hair, who was born in New York, became a media personality and then a right wing politician. 🧵

[Leonie Potgieter @Despicable_M_E]

@MartinSLewis @itvMLshow @ITV @ITVX Ok, got it! Thanks 🙏🏼

[#MEAction Network UK @MEActNetUK]

Be part of the largest survey of people affected by neurological conditions in the UK & ROI. Share your experiences of trying to access treatment/support for #MyalgicE. Children, adults & carers can all take part – fill out #MyNeuroSurvey by 15 November:
https://t.co/bCJS2hpIti

[#MEAction Network UK @MEActNetUK]

CONTENT ALERT

Listen to @TimesONeill talk on @thetimes The Story podcast about his daughter Maeve's death from Severe ME. He addresses @wesstreeting. Also @ShabanaMahmood and @hammersmithandy about 'the bare cruelty of the inquest system.'
https://t.co/YnSMlicTpL
#VerySevereME

[Leonie Potgieter @Despicable_M_E]

@MartinSLewis How does this effect PIP payments? Not sure where that fits.

[Leonie Potgieter @Despicable_M_E]

#pwME #pwLC I've just donated to David Tuller's Trial by Error fundraiser. Two days left to contribute to this essential work.
https://t.co/y4fxfP9okZ

#MyalgicEncephalomyelitis #LongCovid #MECFS #SevereME

[Adam @ABrokenBattery]

Clip of Natasha Devon talking about the response to her show on #MECFS from a couple of weeks ago "I have never had such a huge response to any hour that i've done... there is a big story here and there is an investigation that needs to happen."

[Adam @ABrokenBattery]

Dr Charles Shepherd interview by Matthew Wright LBC Radio about the Prevention of Future Deaths hearing (Fri 26th September) following the death of Maeve Boothby O'Neill.

https://t.co/qNzwhzDtpG

[Karen Hargrave @karenlhargrave.🦋.social @KarenLHargrave]

People with ME are entitled to safe care from the NHS.

People with ME should not be getting worse as a result of NHS care. The NHS must save lives when needed.

We’re calling on this government @wesstreeting to step in and commit to an NHS that’s #ThereForME

[Cambridge ME group @CBMEgroup]

This doesn't just mean no available beds for treating #MECFS, it means no way to safely treatment for other things (cancer, heart attacks, strokes, infections etc). Severe #MECFS patients can't access treatment for ANYTHING.