I wrote an awareness article for @MEAssociation about the struggles of being a #carer for someone with severe #MECFS, my daughter Sophia: how we got here,what being a carer involves,the difficulties,the huge change in our lives, lack of support etc #pwME #LymeDisease #chronicpain

RT @mediumwhite: A ME/CFS Delivery Plan which fails to deliver on research funding fails people with ME and Long Covid. We cannot accept th…

@mediumwhite yes please. will DM.

@oonagh_cousins Thank you for this. Have sent it to my MP. Hopefully it will instigate some interest on his part as nothing has been forthcoming so far.

RT @RightToLifeUK: Dr Rachel Clarke (Palliative care doctor): If we don't address the state of palliative care, some people will "choose" t…

@DafoeWhitney classic dilemma for very severe ME. It takes so much energy to research, take and metabolise all the stuff that any potential small benefit seems to be lost in the process. Rest up Whitney x

@ErinAPN1 @MelanieWeckert 🫂

@Paula_JKnight Thank you Paula. How did you know what spec to look for - did you get some advice?

@AbyssPearl Have you heard of Daridorexant? It works in a different way - not a sedative but prevents wakefulness. It's new to the market in the UK. Interestingly benzos stop my daughter from sleeping. Everyone is different.

@GoreLloyd Just so beautiful Emma. So much love has gone into that 💞

@sibylle_berlin 🫂x

@Fatigo_MECFS My daughter has. My understanding is that doses from 15-45 mg can be helpful for PEM. There’s more information about it from the Bateman Horne centre in the USA. They have patients on it.

@sweetpiefern @ME_Vereniging @ThereForME_UK Yes

@libdemcam

@CaroleBruce17 🫂

@KatyBruce108 @KarenLHargrave exactly this👆

@KatyBruce108 @KarenLHargrave Thank you Katy. One of the reasons I wrote it was to bring very severe ME out of the darkness and onto the radar of people who can make a difference. So much goes unseen.

@ClagueNjc36 @PhysiosForME I'm sorry she's really suffering. Thank you for posting about athetoid arm movements. I looked it up and it's what my daughter gets when she's in severe energy deficit and PEM. I didn't know how to describe it before.