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I’ve always had migraines. I do track them as they are very disabling (always have been) so I think they they impact my other symptoms and they take a day or two to recover from.

Very interesting! Not a viewpoint I’d heard before. I’m currently in a bad mood from toxic wellness overload. I’ve had two people from a local support group message me to try microdosing - when I enquired about their ME meet-ups. Group leader aware and replied to one of these scam sales...

Actually their drummer toured with Duran Duran after the split…

I have worked with some amazing Facilities Management teams. Like many “back office” functions, nobody notices them until something goes wrong. They don’t have the final say on things like budget and spend, that’s the top brass. It’s very rare they are given “carte-Blanche” to actually design...

I have a zero-gravity chair for gardens, it’s lovely and comfy! Not light to carry, though.

Person with leg amputated finds it harder to walk and it takes a greater toll than for healthy control. Solution- convince person they still have two legs.

So if I have nausea I take prescribed meds to control it, because I discussed it with my GP who gave them to me. Will the NHS ME clinics be prescribing meds? They won’t, OTs and Physios can’t prescribe. This TIMES annoys me because it’s on the level of a copy of a 1991 Just Seventeen...

Actually this raises a good point for me. The blurb said this paper can be used separate to an assessment. If someone was vomiting all the time, that needs to be a conversation with a GP or doctor. It isn’t necessarily ME and it does need investigation. Instead, it will be buried under some...

I am actually crying laughing at this :banghead:

Regardless of how useful it is to track the symptoms, my point is that the people who will see these questionnaires in the NHS clinic will be mainly under 40, mild or moderate and likely already doing this stuff for themselves on an app. Someone giving them a paper handout of virtually the same...

So I’m showing this because I feel that these PROMS by the Rehabosaurus brigade are already out-of-hate. I see them as dead-in-the-water, they have no power. The new people who will be facing them already have Visible or other apps to track symptoms like Bearable, heart rate monitors/fitbits.

And this is the interactive auto-generated trend comparison tool in the app. I can compare two symptoms if I want.

For anyone who hasn’t seen Visible here are some screenshots of the evening symptom questions. N.B. There are set core questions plus you can add your own if you wish.

If these lot ever have a read through Visible’s daily check-in questions, they’re going to feel pretty silly spending so much time writing the same ones. It would be great if the new patients facing this guff say “oh let me show you my data for these questions, I record it daily and my Visible...

It’s just devastating, more so since AfME replied to Trish’s letter and actually listened.

Apparently we are due a few surveys in the coming weeks. Sarah Tyson has been busy. https://meassociation.org.uk/2024/09/research-the-index-of-me-symptoms-times-for-me-cfs/

100%

The threshold for anyone being bothered about us is high! I can’t think of another illness where you need help now to prevent problems tonight or tomorrow.

Yes I was replying to @darrellpf

In the UK everything has a “pathway” and criteria. He probably didn’t meet the criteria in some way and that’s what they do. Doctors at hospitals seem to be practical working from a call-centre script these days.