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The letters and notes of Dr Shelton being read are sometimes damning - need an NG tube, lack of care plan, needs admission, no one willing to help

From P Keeble tweets So far It’s been decided that Maeve’s Gp Dr Shenton is too unwell to attend, instead focussed written questions will be sent. She has PTSD. Another GP Partner Dr McDermott doesn’t seem to remember much, despite many complaints from Sarah Boothby about lack of help. Seems...

Very good point, together with “ME isn’t real/you don’t have ME just mental problems” it’s like the school playground “my dad is bigger than your dad” my ME Specialist service will tell your Psychiatrist to bugger off! If there no ME specialist service with an ME Consultant then the average...

A few pages ago I linked to it, they follow an industry-standard process where a panel reviews applications -apparently. I think we were wondering about asking to see the decision or grant application. one of the PROMS will generate an info set which can apparently be used in research?

If the NHS can’t implement the NICE guidelines then why bother with PROMS. Well we know why, check-box “look what we done” head pats. Whilst Millie and Carla lay in hospital being deprived of liberty and tortured, and Maeve lies in her grave. Shame on MEA and Tyson and Gladwell.

I’m also interested whether anyone is able to update us? I wanted to attend but I just can’t bear it and am not well enough. Is anyone allowed to report on what’s said or are there restrictions?

I think it’s mixing two concepts, understanding that you have ME and understanding the symptoms ME causes. “I was helped to explain my symptoms to others” is this bad English? I write sentences like that then chastise myself. The whole thing is just a load of old tosh, do what we always do...

I get what I call “adrenaline rush” and it’s very occasional and absolutely out of nowhere. My body starts to feel like after you’ve trapped a finger in a door, or had a terrible pain/shock/injury, the pain has gone but all the adrenaline is still coursing, breathing fast, you get jittery, I...

Indeed, I was told that the there seems no reason for good or bad days, but there is a reason-it is always caused by energy use. Just recently in an NHS service.

Pacing is rarely mentioned without its “GET-lite” cousin “pacing up” or “able to do more” and “as your symptoms decrease and improve” I’m all for maintaining hope and that, but I wish pacing wasn’t contaminated with the “this will make you better” mindset.

Regular readers of this thread may be interested to know that a new survey has been released - PREM (Patient Reported Experience Measure) Please be advised that the link which was provided in the MEA Instagram/website for the survey, does not work… here is a screenshot of the insta with more...

Well, yes as you’ve discovered, once you’re in the red it takes time to get back out of it, stopping what you’re doing isn’t enough as the heart rate needs to drop. Comparing points is a zero-sum game, I’m on 90 per day and I’m moderate, I am working on ways to stay closer to my budget but it...

The daily score isn’t a guideline on how you’ll feel, it’s a measure of “stability” of your stats and reported sleep. You may feel fine! but behind the scenes things aren’t stable. It tells you so you can take that into account (or not). Every day will involve “over exertion” and activity. The...

The point being that it’s not an unknown phenomenon that some people have issues with sensory stimuli. It’s not a mysterious, never before encountered quirk, my local supermarket does “quiet shopping hour” so why qualified medical professionals should find it so difficult to appreciate, I just...

Surely it’s a sensory processing difference?

This is a great point, what therapy guidelines say immediate exposure therapy to all sources of distress is the way to treat them?

Yes I think this is what I felt, but wasn’t sure if I was “over reacting” it feels like “blame”

Ok got it.

Sorry you’ll have to explain it -bad days are due to energy use? Or not?

No, it’s not a paper its a leaflet