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@ahimsa. Yes physical exertion definitely drains my energy quickest , conversation especially in social groups is next possibly contributed to by sitting around a table or whatever for a few hours whereas forum reading/posting or writing emails are still possible even when I’m fairly low on...

I’ve sent a message through Facebook as well hopefully it will get put right first thing tomorrow if not sooner

Anyone looking at the ME Association web page will see they’ve added an example of an email. Unfortunately it gives the date of the meeting as 12 January not 14th.

With the NICE review on the horizon it’s worth giving it a try again. Also the GWAS will be something MPs can get behind as well. Presumably Carol M has sounded out colleagues before taking this step and found enough potential support to make it worthwhile.

A new parliament seems as good a time as any to give it a go. I’m in a completely different city now. I have no idea about my MP here I guess I need to start finding out.

Just posted by ME Association Asking people to contact their MPs to ask them to join. https://www.meassociation.org.uk/2020/01/the-all-party-parliamentary-group-on-me-to-re-convene-please-invite-your-mp-to-attend-09-january-2020/

“The NHS test which is highly accurate” ???

Dave has a lot of patience engaging with people who have a wide range of stances in ME politics . I find some people rather dogmatic and just tend to skip over their comments. I wish I could be more open minded.

Ok thanks Andy. Hopefully you and the research team will be listened to by the funders. I hadn’t understood the extent of SMC relationship with them. Not an easy situation but if looked at with optimism possibly an opportunity to bring some kind of change. At the very least the funders will...

Has anyone actually said that SMC are getting involved or is it just speculation?

No not Sheffield Sussex

This was yesterday

According to SMs blog yes getting up towards 5k I saw a tweet from SC saying it was 2k at the weekend before the charities/MEAction posted on their websites and social media

Good blog I will definitely share it. Positive news on the numbers 5k is really good and it will be great if it can be as many as 10k when the bid goes in.

Feel sorry for the staff but it’s not them who are the truly vulnerable. Very little emphasis on how the IAPT model is failing clients.

Isn’t it that in effect the Drs are saying this is interesting and worth further investigation. We keep saying Drs who prescribe off label should make their approach known so it can be investigated isn’t case reports the way of doing that.

Blimey I don’t think this is any kind of story these local outlets must be desperate for content.

is there any evidence Twitter is effective at reaching people outside the ME community through using ME specific accounts and hashtags? With MillionsMissing the reach on Facebook was quite limited when stuff was posted on the page and the people following would like but really not very good at...

That first sentence :banghead::wtf:

Pregabalin at a normal dose made me like a zombie and I had a fall and badly sprained both feet and my ME went up a level. I also found even on a very very low dose for neuropathic hand foot pain it gave me internal tremor which is a common side effect. I gave up taking it due to side effects.