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I’d suggest if you’re able to do this fill it in to the best of your ability and take the opportunity of the comments box at the end to give feedback the points I’ve made is that very severe ME needs to be included in the severity levels. also in commenting on descriptions of the timescales...

Well done :thumbup:

What sort of bowl do you use @Sean

As people who have ME/CFS are being told no you have FND or CFS is under the umbrella of FND we have every right to take an interest as it affects our community.

I use microwave rice too as one of my PEM easy food options particularly. Tilda basmati quinoa is my favourite. Sainsbury’s own brand brown basmati is only 50p a lot cheaper and adequate for me.

@Wonko I’m sure you’ve mentioned rice cooking in previous discussions

I don’t think it would be at all easy to do this without it being misrepresented

I presume ME Association are aware of this but have pinged them a message just in case. ETA. They have confirmed they are aware :thumbup:

Shouldn’t be anywhere near NHS

Good point @JemPD

I’d like to see them take this approach with whatever professional body exists for palliative care

One of the issues with OI is especially with less severe ME not actually realising that OI is a problem for you or understanding what OI is how many times do we read of people who didn’t know using a shower stool would help. Also issues with shopping- especially queues. I’ve never passed out...

How is this compliant with NICE 2021

I think there is definitely a need for something to be done urgently to educate professionals about severe and very severe ME and learn lessons from what has gone wrong especially around feeding. I had a quick skim through the draft DHSC “implementation plan” I couldn’t see any mention in...

https://www.mefoggydog.org/. I think people are entitled to make different choices about advocacy activity. Working in larger groups or organisations isn’t for everyone.

It’s got 490 shares so far :thumbup:

Good article :thumbup:

only those wearing FND expert hats have the special insight needed to truly understand.

Poor start even BACME have started using ME/CFS now you’d think newcomers would educate themselves better. :whistle:

I thought the idea of another disease comparator was to test the results applying to ME rather than chronic illness generally