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So you are objecting to PROMs?

So would I be right to summarise as the problem being Tyson et al?

So at point7 it gets all Garnerish and doesn’t make sense, so I stopped reading

Not sure if this is a helpful line of thought, but are we objecting to 1. This iteration of a PROM for pwME Or 2. Any PROM for pwME 3.would it be possible to write a PROM for ME/CFS without it being harmful? 4. Would it be possible to write a PROM for ME/CFS that is useful to pwME? I think...

Yes I can’t remember what appointment it was, but I was “greeted” early on with a “what goals can we help with, getting out? Doing hobbies,day trips?” and I was like, well no my “goal” is to wash daily. Strangely, not something they had any help for.

Well done but also take care!

BRAD-MDQ stood out because Bristol. It was developed by University of West England UWE and it is a PROM https://www.uwe.ac.uk/research/centres-and-groups/chcr/research-themes/mambo/fatigue-research

They're just documenting their own issues at this point.

Yes I think the European preparation is more about being stocked up if internet/power/supply chain fails. I think it’s good habits to get into, keeping a supply of stuff you’re using anyway. No need to build a shelter and stuff it with guns and army ration foods like in the USA.

Not that this is really helpful, but I am always very aware of my lymph glands when they’re tender. The throat ones are generally tender but the groin and armpit ones have made themselves known through the years. In fact, I-didn’t know you had them there, until they started bothering me.

Well imagine being stuck at home unable to wash or cook or do anything (!)

I always bulk bought toilet rolls. This made me look a bit bonkers having 48+ rolls at any time, but then Covid happened and I was sitting pretty! I think I should get emergency bottled water maybe. And some cash in coins and small notes. I think the more likely emergency in UK would be loss of...

But but chair yoga! It’s for all abilities and it’s sitting down :banghead: :banghead::banghead:

We have plenty of activities on offer, it’s the whole “leaving the house” part which is the problem.

I had a lot of colds and virus problems before the “big one” which I couldn’t recover from. Then a few years on, a few years of remission which started to slide away until it was “chest infection/flu/virus” every few months, every two months, cutting back on work hours, working at home….

I too had a remission phase after a few years. In my initial illness, I still worked full-time and socialised at weekends, would that be 50% less? Probably not, but I was constantly in pain, depressed and off sick, I also quit all outside activities like the gym and studying. I’d collapse after...

Love it! I wish GPs could hear themselves sometimes. I’d also like them to show their sources for this “advice”.

Bit of a political nightmare isn’t it, who wants to publicly call out the ME A and NHS?

As a foggy-brained and not at all scientific person, I think the statement about PEM not being cumulative must be the the biggest glaring clanger she has stated (in public, on Facebook) I’m not going to attempt to argue the minutia, I think this one thing should be taken forward and...

Sarah has ME so I’d like to know from her how the “treatment” has improved her ME. Seeing as she knows what the treatment is, and is both patient and expert. What was her outcome, can we expect similar?