Aimee Jones

Long Covid Sufferer RN

[Bateman Horne Center @BatemanHorne]

Let’s talk about the push–crash cycle.
Exceeding your energy limits can lead to a crash and a flare in symptoms.
How do YOU break the cycle? Share your pacing tips + tools.

➡Resource: https://t.co/xoSF4Vrt3a
#MECFS #LongCOVID #PushCrashCycle @openmedf

[WorkingAndNotWorkingWithLongCovid @WorkingWithLC]

1/ 🧵 Key points from @LongCOVIDPhysio & @WorkingWithLC joint response to UK #PathwaysToWork Green paper consultation.
This was an evidence based submission with shared lived experience & insights gathered over the last five years
#LongCovid
https://t.co/R5b76yuFmJ

[Cherylee Houston @cheryleehouston]

@TakingThePIP1

[Oonagh Cousins @oonagh_cousins]

I've written a new blog for @thereforme.uk about rest - something I feel deeply about.

I talk about how, as an athlete, rest was respected - a sign of discipline and strength. But living with ME/Long Covid, rest became something judged and misunderstood.

Link in next tweet👇🏻

[Key Workers Petition UK @KeyWorkerPetUK]

This 👇

We are being contacted regularly by exasperated disabled people who are at their wits end because they aren’t getting trade Union support at vital points in their #LongCovid journey. It’s disappointing at best and neglectful at worst. @theRCN @unitetheunion @unisonhealth

[Rachel Hext @HextRachel]

The latest pay disputes are highly triggering for those of us with #LongCovid. Trade Unions are shouting about @NHSuk staff not being valued with low pay, but we are still getting messages weekly about members who cannot access support for IHR, dismissal or phased returns. 1/2

[Niall Harbison @NiallHarbison]

A journalist / media request…

📕 launching my book in 2 weeks

🎤 Happy to do interviews / podcasts etc

🐕 Can talk dogs / mental health / depression etc

My dream is to get the book to number 1 for Tina.

Mail me [email protected] will do as many as I can 🙏🥰

[Darren Parkinson 🌍💚💙 @DarrenBar88]

The Guardian have documented a year in my life living with #LongCovid.

Please watch this short documentary to learn what it's like living with this debilitating disease and why we need urgent treatments.

https://t.co/jh5bfZ610T

[Layla Moran 🔶🕊️ @LaylaMoran]

Not one mention of Long Covid in the Get Britain Working White Paper.

Govt still ignoring NHS staff & frontline workers, who put their lives on the line during the pandemic, now suffering with the condition.

We urgently need to recognise Long Covid as an occupational disease.

[Aimee Jones @Aimt05]

@ahandvanish As others have said H1 and H2 antihistamines.

[Aimee Jones @Aimt05]

@RobWust It wasn’t until I added Famotidine (40mg twice daily) to the fexofenadine (180mg once daily) that I noticed a difference. It took me from bedbound to housebound. Not a cure but prob 10-20% increase in baseline.

[Aimee Jones @Aimt05]

@patrickG731 I’m not recovered but have had periods of recovery lasting between 1wk-2 months. My remissions normally occur every 3-4months(ish). I’m 3 yrs in and one of the worst parts is when I think I might actually be improving only to fall back to my previous state. Hope can be a bastard

[Rachel Hext @HextRachel]

Time for your government to prioritise this and the endless #Covid fraud @Keir_Starmer

The money retrieved could support those with #LongCovid and those injured on the frontline. They are missing from society still!

[Supporting Healthcare Heroes UK @SupportingHH_UK]

Great to see @nmcnews have listened to the voices of disabled registrants (including those with Long Covid).

@MichaelaBarnard (one of our trustees) and Dee Burrows (one of our volunteers) were part of this work.

https://t.co/u3veYbFoN8 @NursingTimes @EddChurch @LCNMUK @theRCN

[Kelly @broadwaybabyto]

For more on how to be an effective advocate for a disabled or chronically ill patient (and why it’s necessary) … here’s my article dedicated to the subject of advocacy in hospitals: https://t.co/PtQCGOD8kW

[Carly Welton @carlywelton]

Powerful testimony from @agy_lena on Natasha Devon's @LBC show last night. Talking about #SevereME and everything she's lost, as well as the power of social media for our community. Thank you to @ABrokenBattery for making it easy to create this clip. #MECFS

[Long Covid Support @long_covid]

🚨Big thanks to @Ruth5News for her latest #LongCovid report:

“Previous research has compared the impact of Long Covid as being akin to having stage 4 cancer. Can you imagine having cancer and people telling you it was all in your head or that you were malingering or work shy”