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The lack of action on this is disgusting considering how simple a task it would be given the wording could be drawn from the NICE guidelines.

Yes I saw that very severe is included in the description of the person completing the questionnaire’s overall level of ME, I’m one of those who had undiagnosed “mild” ME/cFS for years until it worsened to current Moderate and I got diagnosed. I will have to go back through on my iPad to see...

Given we could be having a general election any time from May onwards it is the twilight of this Parliament. Hopefully the APPG can pressure Dept of Health to finalise their plan we will see. I have been talking to a person who will be a candidate and stands a chance of election. I said...

Comment posted by Dr Charles Shepherd on ME Association Facebook post about the C4 News report “Very good media coverage of what happened to Merryn. Thank you Channel 4. I will be meeting Carol Monaghan MP tomorrow at the APPG meeting where severe ME/CFS and delays with completion of the DHSC...

Bearing in mind that CFS clinics use stuff like Chalder questionnaire HADs etc having a product that can be used to move them away from that will be better. I don’t claim this is an ideal solution but having a framework that actually focusses on the symptoms pwme experience, how ME impacts on...

GHQ 30 blimey I would imagine the population at large would tick 5 of those

I hope Prof Matthias Kohl will be able to provide such reviews of many more such papers also then possibly publish himself on persistent flaws in psychosomatic papers

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review Current total is 10,498

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...