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Yeah me too. They are sent in white envelopes now though you know. With the words 'Important Documents Enclosed' written on. At least they are in my area. They changed from the 'brown envelope' a while back. Its worse, because at least, as you say, you could see from a distance with one glance...

gosh, i wish i'd known that in dec/jan/feb when my reassessment was "due"! would have saved a lot of anxiety! But they couldnt possibly let people know could they... that would be too humane

Yes i think a powered wheelchair is automatic SG inclusion....., but i also seem to think it has to be used indoors for inclusion?

That doesnt mean length of award though (as i understand it) it means how long you're allowed to get it. So for the WRAG you can only get contribution based ESA for 365 days, you can keep having it renewed indefinitely, for the support group. But like Wonko says there are no indefinite awards...

Precisely @Lilas I'm really not sure why they needed a study to tell them any of it. yes i spotted that too. completely agree with all you say @Trish 'smile, pat them on the head and act as if you respect them, that will be enough'. How can psychologists not know that patronisation and...

Doesnt every patient with every condition want to be treated with respect etc? What grieves me about this article is the 'othering'. Every patient with every condition wants what we want, why make it seem like we are a special case. We dont get it. But this article presents the problem as being...

indeed lol good one. although it feels pretty Uranus to me :D

oh amen to that!! If anyone ever sees me doing it for goodness sake, please clobber me! Sooo glad we have you, and others repeatedly pointing it out Jonathan, its easy to fall into that trap if one isnt careful. I think thats spot on. FWIW, for me (with a non identified 'initial' virus), it...

Yes, i know people dont like malaise & i agree to a point because of the connotations with swooning victorian ladies. But the problem with 'fatigue' for me is that almost everybody thinks they know what it feels like. And as you say feeling grim isnt like being exhuasted after too much...

thanks all i read it now. indeed

Many many stories on that page, i dont see the relevant one? I'm not good at sifting/finding key bit from a lot of info, i cant see it?

Total misunderstanding of what CFS is. It's not 'starved and exhausted' thats the whole point. If it were we culd simply improve our diet and rest, & the problem would disappear. Idiotic.

No and neither does an severe ME sufferer, the comparison you're making with your own experience, is an accurate comparison to my own experience. But the words you used initially were about 'wanting' to get on the bike - thats what i was responding to. I was saying that as a person with ME what...

But if you had some degree of flu every day for 20yrs, and it had decimated your life and getting on that bike might give you a chance to get your life back, to regain all the things you had lost. To have a 'life' again. You would give it a damn good go, because while you might not 'want' to get...

This is what happens when you think one thing behind closed doors & say another thing publicly. They act & apologise as if its the advert that's the problem, as if the advert was some kind of anomaly, rather than an illustration of the usually unseen. I'm not a particular fan of quoting...

How. Patronising. Stop telling people what i believe. And what my voice and body language are. You never met me! And you're Wrong.

i worry a lot

great response, many thanks to all

Im a bit confused. So this is a book by fiona fox, has anyone read it does she talk about ME/CFS,? Are the quotes about Crawley's harrassment complaints from the book itself or are they an example of how dreadful the SMC is (in contrast to Ernzt saying it's marvellous)?

really? i wonder what that is?