Lu

Moderate ME/CFS patient. One of the #MillionsMissing since 2016. Animal/nature/wildflower lover. Miss walking, writing and cooking (lost to this illness).

[Lu @LuPwME]

I’m delighted to be a part of @DecodeMEstudy and contribute to this vital biomedical research.
They are still looking for UK based participants, more information can be found here: https://t.co/xpvhE4L2YZ
#DecodeME #MEAwarenessHour #MECFS #PwME #MedTwitter #BiomedicalResearch

[DecodeME the ME/CFS Study @DecodeMEstudy]

We’ve reached 10,000 DNA participants! We still need more so please help us spread the word about #DecodeME to #PwME

Take part here if you haven’t already: https://t.co/viOvHqywto

#MECFS

[DecodeME the ME/CFS Study @DecodeMEstudy]

Today is #NationalDNADay Genetic studies have transformed our understanding of many diseases. By studying your DNA, we aim to identify the genetic differences in those with #MECFS. Join #DecodeME today https://t.co/rJcDiZAqEp
#PwME #DNA #GWAS #Genetics

[DecodeME the ME/CFS Study @DecodeMEstudy]

20,000 #pwME have completed the #DecodeME questionnaire, providing us with a wealth of information about lived experience of #ME/CFS to understand more about the illness. We still need more participants! You can still take part: https://t.co/tFZNkw8u8F

[Carole Bruce @CaroleBruce17]

Hello @sajidjavid 👏👏@TimesONeill and millions of us have been waiting for 11 long months to see what might be implemented. Can we have an update as more of us now have an #ME diagnosis due to #LongCovid ? You’re right, it has not been taken seriously enough. Let that end now.

[Lu @LuPwME]

@Clarejames131 Sorry to hear this, Clare. Keeping you in my thoughts 💙

[Lu @LuPwME]

Please vote for Invest in ME Research to share in £40,000 at MyGivingCircle: https://t.co/ibMghxjLU8

[Carole Bruce @CaroleBruce17]

#dysautonomia so often ignored in a #ME #MEcfs diagnosis. I wish I’d known about it years ago. I would have avoided so much worry and self-doubt. I was a sitting target for the snake oil vendors.

[Lu @LuPwME]

@kathLawton6 Sorry to hear that, Kath. It’s awful. Even after all these years, it doesn’t get any easier to cope with 💙

[Lu @LuPwME]

I spent a couple of hours in the garden over the Easter weekend (sat down to plant some bulbs in a pot) and even that triggered a couple of days of #PEM
Hours of activity = days of payback
#MEAwarenessHour #PwME #MECFS
#NEISVoid

[Lu @LuPwME]

@LA_Fairhurst Thanks. It’s nice to hear that you were able to see people but I’m sorry it gave you PEM. I really hope it passes soon for you. It’s so unfair, it feels like a punishment most of the time 💙

[Science for ME online forum @s4me_info]

The @DecodeMEstudy reported last week that the first batch of DNA samples have been sent for analysis.

If you haven't taken part yet, and are:

based in the UK
have a diagnosis of #MECFS
and aged 16+

then there is still time.

#MEAwarenessHour

https://t.co/kSTYQzdyzb

[Joy In The Seasons @JoyInTheSeasons]

A reminder that #MEAwarenessHour is currently taking place. Same time every Wednesday ~ 8-9pm BST. Join in worldwide by adding the hashtag to your tweets and help raise ME awareness. #pwME

Poster credit @AertbyLisa

[Lu @LuPwME]

@Sally_writes This is sadly very true and I think anything over what we’re used to can have a negative impact on our baseline, especially additional health investigations. I really hope life gets easier for you soon 💙

[Lu @LuPwME]

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. https://t.co/dEdg8vS2fy

[Lu @LuPwME]

@greenecharmer9 Congratulations, Lina 💙

[Lu @LuPwME]

Happy Easter to those who celebrate. Hope you can enjoy the small joys this weekend if you are too unwell for the bigger moments #JoyInSpring

[Lu @LuPwME]

@HealthHubris Thanks, Jo. They really are, especially when you have a chronic illness 💙

[Lu @LuPwME]

Missing this little bunny today, my first Easter holiday without her. I’m sure she’d be devouring a carrot based snack if she was here! 🐰🥕