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Im miffed with the Liverpool questionnaire because I didn’t spot wording at the beginning that said you should fill it in with reference to when you were last well and in the questionnaire itself it definitely said by reference to a month ago because I was filling it in on that basis and put no...

If people only criticised and advocated against things that have not yet been implemented we wouldn’t be having the current NICE guidelines review so I don’t understand that argument. Nor that we should only advocate against things that specifically target people with ME - many issues that...

It’s definitely usual in the survey from Liverpool that’s just been put out - on separate thread

its a loophole - if you don’t have clarity it will be exploited. Slightly less bad is still bad and worth objecting to. British establishment are masters of fudging to get their own way. BPS crowd are masters of fudging and appropriating terms to avoid rejection by patients. This BDD...

As they ask for peoples age in the demographics surely they would then just sort it into different age groups if there’s any need to do that for analysis once they’ve collected the data so they should never need to put age limits. But given they’ve put together a rubbish set of questions it’s...

I decided to give it a go to see the questions got part way through filling it out then got dumped maybe it didn’t like my answers :whistle: It was all HADS type stuff. Does worrying help you cope. What % of time do you spend focusing on your symptoms. The first questions were hilarious...

All about anxiety

Was hoping so :thumbup:

Does he realise by working with his mate on this dodgy paper he’s put his professional reputation at risk?

Shows total lack of understanding of the ME community not expecting it would be shared widely. Shows what the agenda is that they didn’t in fact set it up in the first place to be shared widely. Presumably expecting recent attendees to be more under the impression that the CFS clinics are “a...

I’m betting he’s wondering why he ever let them put his name on that one. Oops.

When they get the all over aching pain of a flu type virus are they having an emotional experience?

Ah but it wasn’t the patient who was the first to mention tasing :whistle:

It’s ridiculous that they didn’t foresee the need to address this in their communications.

Merged thread https://www.actionforme.org.uk/news/involving-young-people-in-the-nice-guideline-development/ Not sure if this has already been posted

Yes @Barry i feel I have my battery on trickle charge while coming back from PEM.

Be interesting to know what the £500k was spent on

Yes very familiar

So the “gold standard” Chalder Fatigue Questionnaire is used in these official stats to report the performance of IAPT Long Term Conditions aka MUS as a measure of “recovery” for CFS Executive Summary Appendix 3,

@Arnie Pye :hug: I’m glad you were able to get some benefits from the surgery