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Seen a tweet today where MS was having a dig at the US sense about science guy Trevor Butterworth for retweeting something on the latest retraction letters on SMILE. If he defends SMILE he’s defending LP. This is it

I don’t object to animals but I do find it disheartening that some get better treatment than we do

only read a few pages - made me nauseous

I don’t know - I’ve never considered this until today and don’t know anything about the legal and practical implications of Charity reorganisations.

Yes you’d want to take the positives forward and leave a lot of the way AFME currently works behind.

Right I’m one. But if something for the future could replace them I would at least give it a chance.

Realise there are issues arising from history that might make it difficult to impossible. I still think it could be a practical option to improve the situation at some time in the future. If it could be seen as creating a new organisation taking forward positive elements and leaving behind...

I know from someone involved in a local Parkinson’s group that it’s not all rosy in those charities and there’s tension over the funding between local and the head office. However in my opinion the difference between level of support for ME national charities and MS/Parkinson’s is because MS...

Not saying this is perfect and it doesn’t need to be to be better than Chalder...... why do people persist with Chalder when alternatives are available.

http://www.healthmeasures.net/index.php?option=com_instruments&task=downloadComponentFile&file=PROMIS%20SF%20v1.0%20-%20Fatigue%207a_31Jul2018.pdf

Yes I’ve done a bequest and it’s definitely not going to AFME

Staff who have empathy and have actually been educated about ME

As I understood it you had to have done the generic low intensity “sausage machine” CBT to get a referral to the next level (CFS clinic) but that could just be what happened locally 4 years ago.

As I understand it during Ramadan people abstain from all food and drink during daylight including water. People with health conditions are not supposed to take part in the fast.

Who was that and what did they say?

Maybe you should give them some feedback on how it could be improved.

“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.