This is M.E. tweeting

@ThisisMEtweety

Apparently I don’t like viruses. #MECFS as a child; post viral syndrome as an adult; now #LongCovid; #fibro; #hypermobility; #EDS #MCAS; #pwME; #ChronicPain.

United Kingdom

Joined July 2020

1KFollowing

712Followers

Pinned

This is M.E. tweeting@ThisisMEtweety · Mar 15, 2023

Just leaving this here, as an example of a *real* cause of swallowing/eating difficulties in #pwME & #LongCovid #LongCovidKids

TThis is M.E. tweeting@ThisisMEtweety · Jul 9, 2022

EDS-aware ENT: ‘I can see you’re hyper mobile & your neck is very tense, do you have difficulty swallowing? Specialist physio, speech therapy, & maybe mestinon will help’. Me: *stunned silence, internally crying with relief* 2/

2.0K

This is M.E. tweeting Retweeted

Adam@ABrokenBattery · Jun 20, 2023

This is also common for Children with #MECFS. 1 in 5 parents of children face child protection proceedings because professionals don't understand or believe in the condition. Action for ME Survey 2017 actionforme.org.uk/uploads/pdfs/f…

7.0K

This is M.E. tweeting Retweeted

Adam@ABrokenBattery · Jul 19

TW: New Sunday Times investigation hundreds of parents, falsely accused of Fabricated or Induced Illness when seeking care for their children - abuse allegations, risk losing access, and waiting months to be cleared— some children worsened and even died. archive.ph/2025.07.19-180…

106

8.0K

This is M.E. tweeting Retweeted

Safe Air Schools UK@SafeAirSchoolUK · Jul 25

Closing windows doesn't block pollution it just traps CO2 and infection risk Air filters = 29% less classroom pollution. Proven.

719

This is M.E. tweeting Retweeted

Sarah Schafer MD MPH@SarahSchaferMD · Jul 23

SjD is a systemic inflammatory disease but CRP & ESR do NOT reflect overall inflammation in Sjogren's, disease activity or disease burden. Time to teach doctors the basics! sjogrensadvocate.com/post/sjogrens-…

168

This is M.E. tweeting@ThisisMEtweety · Jul 23

Words of @KarenLHargrave are so true. Over the past 3 years I've met & photographed many #pwME trapped in bedrooms, desperate for appropriate care. Info on exhibition and book tinyurl.com/58khuv8z #MECFS #DocumentaryPhotography #InvisibleIllness #ChronicIllnessAwareness

CCarole Bruce@CaroleBruce17 · Jul 22

Thank you @KarenLHargrave of #ThereForME for commenting so strongly on the DHSC Plan for #ME published in The Times today.

125

4.0K

This is M.E. tweeting@ThisisMEtweety · Jul 24

Sean O’Neill on Times Radio talking about the new government delivery plan for ME/CFS “I’ve never seen a plan that lacks detailed quite such as this. I think it you couldn’t really call it a plan at all, it’s a kind of wish list.”

AAdam@ABrokenBattery · Jul 22

3.0K

This is M.E. tweeting@ThisisMEtweety · Jul 22

Clip of Dr @BinitaKane speaking on BBC Breakfast about the new #MECFS delivery plan. There is no commitment to a new service for severe ME. “If Maeve were still alive now, this plan doesn't actually mean anything would have changed and that will be very disappointing to people.”

AAdam@ABrokenBattery · Jul 22

Clip of Sarah Boothby speaking on BBC Breakfast "It’s a lot lot more than chronic fatigue. ME affects every part of the body and while people talk about it about relapsing and remitting the recovery rate from me is so low it’s hardly measurable”

101

5.0K

This is M.E. tweeting@ThisisMEtweety · Jul 23

Any #MCAS folk in the UK I’ve been Rxd *white* fexofenadine & montelukast but can’t find any without colouring.. Before I go back to the consultant defeated, do you know of any brands that don’t use colouring? Thnx! @angryhacademic @Naomi_D_Harvey #pwME #MEcfs #LC #LongCovid

813

This is M.E. tweeting Retweeted

Naomi Harvey PhD #WearAMask@Naomi_D_Harvey · Jul 23

Please sign ✍🏼 and share 🙏🏻 Savannah is in a UK hospital, she has very severe ME complicated by paralysing pain. She is suffering from neglect that has caused infections, and under threat of discharge to an FND service (dangerous for pwME). change.org/p/save-savanna…

145

5.0K

This is M.E. tweeting Retweeted

Oonagh Cousins@oonagh_cousins · Jul 22

A silver lining of today is the powerful media coverage we've seen. Brilliant voices building a new narrative on ME, one that reflects the true reality of this illness. Crucial for real progress. Legends @KarenLHargrave @BentonNick18437 @TimesONeill @swastrosarah @BinitaKane

198

3.0K

This is M.E. tweeting Retweeted

Karen Hargrave @karenlhargrave.🦋.social@KarenLHargrave · Jul 22

The Final Delivery Plan for ME/CFS has been released today. The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online. A short 🧵with some thoughts… (1/)

227

20.0K

This is M.E. tweeting Retweeted

Royal Free 1955@RFH1955 · Jul 22

My daughter died from ME. This new plan fails her and others like her. thetimes.com/uk/healthcare/…

294

4.0K

This is M.E. tweeting Retweeted

Brian Fog@useless_priest · Jul 20

Former Health Minister for Germany Karl Lauterbach offers a perspective on why he keeps talking about ME/CFS now that his tenure is over. "I'm not criticizing my successor here, but I'm moved by the suffering of those affected. I'm in direct conversation with people who have…

227

5.0K

This is M.E. tweeting Retweeted

Ror Preston@RorPreston · Jul 20

A reminder of what the global research output on #MECFS looks like, when compared to other diseases 😳 In the US at least, each of these other diseases now has a lower burden (measured in DALYs) than ME/CFS - and yet ME is barely off the floor. #MECFS #LongCovid

119

339

16.0K

This is M.E. tweeting Retweeted

Rae@RaeA_Smith · Jul 19

We’re unpaid managers, trainers, HR, safeguarding leads, advocates, coordinators, not just unpaid carers All while managing our own health, paperwork, crisis calls, and zero backup 🧵

640

This is M.E. tweeting@ThisisMEtweety · Jul 19

Lest you, like me, momentarily wonder if @AngelaRayner has quit the Labour Party in spectacular fashion: check the date of this tweet. As a lifelong party member, I’m deeply distressed to see how cabinet members said one thing in opposition & do another in government.

AAngela Rayner@AngelaRayner · Mar 14, 2016

The 5th largest economy in the world yet we steal money from our disabled, punish our sick and plunge millions of our citizens into poverty

This is M.E. tweeting Retweeted

John Slater@AmateurFOI · Jul 17

DWP confirmed. No guidance or training exists on selection of primary condition for PIP assessments. Basically Assessor or DWP Decision Maker can select whichever condition they want. 'Guidance - Selection of Primary Health Condition' whatdotheyknow.com/request/guidan… via @whatdotheyknow

8.0K

This is M.E. tweeting Retweeted

#MEAction Scotland@meactionscot · Jul 17

We have been asked to share the following update about Karen Gordon. Karen's father asks you all to, 'Please keep sharing this petition and telling people about Karen’s situation.' ow.ly/HBTP50Wr48F #MyalgicEncephalomyelitis #VerySevereME #pwME

2.0K

This is M.E. tweeting@ThisisMEtweety · Jul 16

I don't think most of the country realises how appalling this is: 250-500k people living with hellish neurological illness (25% severely house/bedbound) and left without treatment or care plan. It's not just 16 days overdue, it's decades! #PMQs #bbcqt #bbcaq #BBCBreakfast #BBCR4

TTessa Munt MP 🔸@tessamunt · Jul 15

June 30 + 10… and with still no sign of the ME Delivery Plan, last Thursday I again asked the Leader of the House, @LucyMPowell, if she could help bring an end to the delay which is so disrespectful for #pwME. I’m grateful for her acknowledgement and commitment to follow up. 👍🏾

162

4.0K

This is M.E. tweeting Retweeted

Steve B@75ThunderRoad · Jul 14

Long Covid is rapidly becoming one of the biggest chronic illnesses in children and young people in the UK. In some countries, it's now overtaken asthma as the most prevalent chronic condition in childhood. This has happened in just over five years.🧵 1/10

329

997

190

38.0K