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“new improved” psych approach with a new brand to keep the commissioners interested and make people who might have heard negatives about CBT think they’re getting something different when basically just the label has changed

I don’t know if this is relevant I’ve always been a shallow breather. I find it quite a challenge to breath deeply I have to concentrate and it doesn’t feel natural.

Maybe not directly relevant but my experience organising Millions Missing locally gave me an insight into the organising and bureaucracy involved once you start to get beyond informal advocacy. And that was only for a one day event. I found the demands cognitively and physically were equivalent...

No you’re not being picky @ahimsa they should be getting the basics right.

Not sure what your circumstances are @youngscum cant see your original post. If you’re working or off sick you might find it helps with your employer taking the illness a bit more seriously if you get a referral from your GP. Don’t expect that much from the clinic you might well not get any...

Tingling could be mild neuropathic pain maybe when mine isn’t burning hands & feet it’s tingling.

I’ve never heard of turmeric being helpful for cognitive issues I thought it was supposed to be anti inflammatory.

It’s a pity Parliament is otherwise engaged as it strikes me this would be a good investigation for the Science Select Committee Carol Monaghan is on.

@WillowJ whats CMS?

Wow looks like a case for Advertising Standards.

Meeting being held today 4 September according to this tweet by ME Association.

This is a great idea Is there some kind of royalty system for use of such questionnaires or are they free to use? I hope there’s no money being made off this claptrap.

I sometimes smell burning when there isn’t anything burning when I’m feeling bad.

i don’t know how helpful this comment is but I think is important to distinguish between needing to sleep more and feeling bad and needing to lie down. I think often people get the two mixed up and both get described as fatigue. For me flu like symptoms - feeling bad (dare I use the word...

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...