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They just need to get there.

There just isn’t any other illness where the cut off for hospital bed, consultant oversight or any clinic review/management ends as you get very sick.

I know you know this but where is the sense of urgency? Lives are at risk.

Are we the only special little flowers who can’t be told we may face a life of disability? I’m pretty sure if you’re unlucky enough to get a cancer or MND or MS they let you know it’s going to affect and maybe shorten your life. Why do we have to think about other things and pretend it will...

So the MEA gave a grant to this project. Did that grant pay Russell, the MEA employee, to work with the two NHS employees to create an assessment tool for the NHS to use? Presumably it’s all good because Tyson and Fleming have ME and therefore represent all of us with the illness. You...

Oh wow yes that is something that’s needed. I imagine there’s similar scenarios (not necessarily health) say for example if you’re wrongly convicted, or wrongly identified as a bad person on social media or the press. There are loads of scenarios where the majority of society think you’re a...

I’ve just written one - see below “Stop meddling and back off - you know nothing and you’re not helping”

Also humans can endure terrible neglect, abuse, pain and so on. Look at people who have been held captive in prisons, or kidnapped and chained up for decades being abused daily. Just because people can use some “mind over matter” to force themselves to get through hideous daily pain, punishing...

I won’t be using any app from Elaros.

I hope it’s Botox. My guy has retired.

I assume with a fire it goes one of two ways - crazy superhuman adrenaline ability to escape, or not.

Yes I understand “to palliate” but I’ve been around a lot of medics. I wouldn’t say it in front of a HCP treating me. I dropped anthropometric in by mistake the other day. Fortunately it went right over their head.

Thank you @hotblack I fed it to my AI and using my data to complete the questions, the outcome for me, a moderate to severe persons was: Overall TIMES Classification Based on your data profile: Severe ME/CFS symptom burden with very severe fatigue component.

But this is the thing, if I had a stroke and needed to learn to walk again, you are basically practicing walking, strengthening the muscles to bear weight, until you can walk. I can walk, so what are you rehabilitating for me? My only limitation is fatiguability caused by an illness of unknown...

Is there a list of the questions for me to trial an answer?

I’m no scientist or researcher or statistician etc Isn’t “it wasn’t giving a clear signal so we changed/ took out *symptoms* and *frequency* a bit “tail wagging the dog” aka you’re ditching measuring an illness symptom only because they way your measuring it isn’t saying what you want? I...

Data. I had a hopeless interaction with the hospital this week (assisted by my advocate) as to why certain things can’t be considered - doesn’t gather data, can’t send us info on usage or effectiveness so who cares if it’s effective, it cant justify itself to the NHS so it’s not used. So stark...

I saw a Broken Battery has posted a shout out for any Dr UK or even consider in Western Europe who could assist with specific eating arrangements. Thee is more info on the go fund me. I don’t want to post much detail here in case it’s breaking the rules as it’s quite specific.

Yet again the NHS is unleashing untested, unscientific “treatments” which most closely resemble the discredited “PACE” trial specifically pointed out as harmful in NG206 NICE guidance 2021.

Fire up the BACME letter! It’s already paying dividends. What a document. Now I’m feeling a Batman 60s tv show kind-of Kapow!