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politicians will be saying to people that they need to use available routes to complain in order to achieve change. Eg you have to have complained to any govt department before MPs will refer your case to the Parliamentary Ombudsman. I don't think many people genuinely thought that NICE were...

Yes I think it is nailed on that she/they (it seems there is a small group of Drs involved) will get pushed back but she strikes me as a determined person who isn't going to be brushed off.

Glad you posted this @Andy i don't get responses to info either - although I did get a couple of emails pinged back in the summer when I asked people sign the petition to NICE for the guideline review. I was having a chat on the phone yesterday with one of my small circle of friends - not...

@Jonathan Edwards If you really want to talk to people who are supportive of current NHS approach you could try Colin Barton at the Sussex and Kent ME group. I'm sure he'd put you in touch. They even have links to LP on their website and Esther Crawley is their medical adviser. Maybe he...

This makes me so angry.

Private corporate donor :thumbsdown: Any bets on Phil Parker ltd?

Not a substantive point on issues that need to be addressed in guidance but I would suggest that in engaging with people with ME as stakeholders NICE need to adopt an inclusive approach to meetings that doesn't rely on travelling to physically be present in a meeting room.

Or use your knee

As things stand with (non) funding MEGA isn't doing anything any time soon is it??

Will be interesting to hear who else attends this, so pleased you folks are going in to bat for us. Thank you.

I97 ;)

No probs @Barry it wasn’t just a question for JE I just thought he might have a view. I hope this is showing that they - EC crowd - are feeling under pressure. Not convinced it shows any genuine change rather more likely to be attempted arse covering

Going back to the first point in @Esther12 s OP. As I always make clear I have no background in science but I think that particular research on the viruses in Bath patients is interesting. From comments I’ve read here and elsewhere however it strikes me that the research sounds very basic and...

What's that quote - the road to hell is paved with good intentions.....

Someone on a Facebook group I'm on posted that none of this years updates have been applied to CDC web content in Spanish yet so it still has GET in it.

Ok thanks I already take amlodipene which is similar to nifedipine and supposedly better for hypertension so will be interesting to hear more about this

Thanks did you catch the name of the hypertension drug they’re testing? Unlike most people with ME i have hypertension (due to being overweight)and could see if my GP will swap me to it.

Recording of the q&a Pretty lightweight session Jo Daniels talks the usual BPS crap she seems pretty dim Sonya comes out of it better makes JD look like a drongo without saying directly you're talking shit Jo. But then she goes on about donations to AFME..........Although the host brings it...

Yes good point @Barry i did think about the fact Alem wouldn't be able to do publicity. Hopefully someone would do it on his behalf though and the fact that he would be unable to do interviews would be an important message about ME.