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So the Tymes Trust are the only dedicated, national charity for kids with ME that doesn't have a strong BPS agenda or ties.

Nice idea. Wonder what we could do?

I'm not suggesting you do anything more here @Trish, but something that just occurred to me - Presumably your carers are CRB checked or some equivalent is carried out (checks to make sure the person hasn't got a criminal record or any history that makes them unsuitable for the job). Has this...

Yeah, best to be careful. In theory you should be able to raise it confidentially with trading standards (as far as I know), but as you've already complained, unless others do too, it might be obvious that you're the one who shopped them.

I think you are quite right to complain to the care agency. If they received a fee for supply you with junk mail/advertising does this mean you will get a discount? (Okay that was tongue in cheek). I don't know what more you can really do, except possibly contact trading standards or local...

Wow!. Brilliant!

I suspect it might be both the mite and their excrement. Yuck! It's almost impossible to avoid either and if one if 'em is getting in there then so is the other. Whether both get through the stomach intact is another question.

Yep, we need a glossary - Eminence based medicine Acronyms of ignorance etc...

My thoughts exactly. Soliciting information about people that neither they nor the DWP already have. With the possibility that those who will usually have no truck with AfME will hand over this information in the hopes of making life better. I bet that info would be worth quite a bit.

It is very striking how the denial of possible harms underpins the BPS ideology and how neatly that dovetails with the DWP policies of pressure and sanctions. Even the current phrasing that I've seen used such as "makes symptoms worse", or in our own words causes a "crash" is quite understated...

Well done @Suffolkres. You raised some excellent points in answer to a very vague criticism.

Loooonng article. One point that jumped out at me - he says Well, the diet industry in the UK is a testament to the fact that doesn't work.

Surely, this feeds into the argument for more openness? If a reviewer just gives a one liner, is obviously biased, being dismissive for the sake if it, then having open reviews would soon out a stop to that.

I am no expert on the topic of personality types so I am likely to be displaying significant ignorance here and if so please excuse me. Is the "science" or definition of personality types anywhere near tight enough or defined enough to be used in this way? Take for example the "perfectionist"...

Another reason I would like to know the source of Ros Vallings information on this because if it's from her own patients simply reporting back to her that raises a red flag for me. Where ME docs are few and far between, if you find a doctor willing to help you with symptomatic relief using pain...

Me too. For all the wittering on about sleep hygiene and advice normally dished out to pwME I haven't seen any evidence that we all share the same sleep issues. Some patients sleep, but it's unrefreshing; others have difficulty falling and staying asleep and so on. At different times my sleep...

That 's true. I have to time my showers carefully. Can't do morning showers. Can't do showers too close to bedtime as the activity, though exhausting, wakes me up.

I have no answers either I'm afraid. Singing, much as I love it, exhausts me. It is classed as torture by those within earshot. So no. Singing while in the shower - just getting in the shower and managing a wash is an achievement for many. Trying to remember to do something else as well is...

Some handy NICE definitions included at the end of the MEA statement Co-Opted Members Expert Witnesses

Thanks for the update @Russell Fleming.