Henry Anderson

@Karacyr_1970 Thank you, John, I appreciate it.

@macanders Prayers for your relative Henry and I hope her condition improves.

My relative w severeME is having a predictably awful time in hospital. She is not believed about her own illness. Family advocate but we can only be there during visiting hours.

@SylphSea Thanks. Yes, it's an extra hardship for an already terrible illness.

@macanders I am sorry about your relative. It really is horrific how basic understanding is so limited and so disbelief is pervasive.

@TanteRos Thanks Rose X

@macanders It's a traumatic situation for all concerned isn't it? We want to protect those we care about from harm & hospitals can be such harmful places for anyone with severe ME. My heart goes out to you Henry & your relative xx

@Dan_Wyke Thank you Dan. Unfortunately as we know it seems to be almost default behaviour in hospital. I wish professionals would read the new NICE guidelines when treating patients.

@macanders I'm so sorry to hear that, Henry. A terrifying and deeply frustrating situation for all of you.

@CaroleBruce17 It should be. I suppose it’s a legacy of false behavioural theories about the illness. It’s dismaying the 2021 NICE guidelines haven’t made a dent in them.

@macanders I’m so sorry Henry. As you say it’s predictable but that doesn’t make it any less wicked and unnecessary. Education should be compulsory.

@mookpixie Thank you.

Landscape With A Cottage And Stone Bridge Under A Cloudy Sky by Jacob van Ruisdael, oil on canvas 1650.

New on my Substack. How we might be speaking a different language... macanders.substack.com/p/how-we-might…

@KatyBruce108 @ABrokenBattery Agreed.

So grateful to #pwME Adam, @ABrokenBattery, for his incredible contribution & advocacy & for always sharing media coverage on #ME in the most clear & accessible format. His work is so vitally important & deeply appreciated. A million thanks Adam, for all that you do🙏

@Paula_JKnight Sorry just reread this- she was at home - her legs gave way when she tried to get out of bed.

@macanders Did she fall on a transfer? As someone who can't bear weight, it would be good to know how it happened to try to avoid. Sorry she is being treated with such ignorance. Hope they will take on board Physios for ME info.

Severe ME relative in hospital with broken femur after fall. Physios keep trying to make her walk even tho she couldn’t walk *before* accident. Desperately trying to explain to them

@PhysiosForME @TanteRos Thank you, will do that, will see how it goes.

@macanders @TanteRos Hope they did take note. Do encourage them to get in touch if they need further guidance. Should be taking note of a person's previous abilities rather than attempting a blanket approach

@TanteRos @PhysiosForME Me too! The physio and bone doctor read the ME printouts and seemed to listen - they have a set way of doing things tho.

@macanders I'm sure @PhysiosForME could help in suggesting ways to persuade the staff they need to adjust their 'best practice' model to accommodate what a severe ME patient is capable of doing. Hospitals scare me to death.

@Paula_JKnight Sorry to hear that, Paula. I hope they do. We spoke to a physio and gave her some handouts. It’s very counterintuitive to them.

@Naomi_D_Harvey @EnfantUnique Thank you, I will

@EnfantUnique @macanders There is a hospital charter to help medics implement reasonable adjustments etc that could help to print off

@Naomi_D_Harvey @EnfantUnique Thanks will show this today

@EnfantUnique @macanders There’s a quick one sheet guide here for physiotherapists who are dealing with pwME if it helps

@SylphSea That sounds like an ordeal, yes sad that many hospitals are so ME unfriendly. Thanks, we have printed a few things out. hoping someone will listen.

@macanders That sounds awful. I really hope they take on board what you are saying. It is one of my nightmare scenarios (I fell recently and damaged my knee - had ‘urgent referral’ x ray only after 24 days as too ill to wait for hours in A and E). I hope yr relative will be okay.

@KatyBruce108 @PhysiosForME Thanks Katy, will contact them.

@macanders I'm so sorry this is happening. Would @PhysiosForME be able to advise them on this perhaps.

Elk in the Moonlight Herman Herzog (1832-1932)

@EnfantUnique 2 days ago. Op this morning

@macanders When did your relation have the accident?