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I forgot to say the idea of a collaborative project re a song is great. I think I implied it! Go well with your lyric writing.

There were at least 2 protest songs written for the first #millionsmissing protests, one by an Irish woman, sorry name forgotten but @Tom Kindlon would know, and the other about 'boots' written I think by an American woman to fit in with the empty shoes theme. Sorry I cannot give more detail. I...

If I'm not too late @Graham, please could you add my name, Gill Bigglestone. Thanks for writing the letter and collating names.

@Jonathan Edwards You invited requests for input. I would be happier that the patient perspective would be put strongly if the person reporting from each table were a patient not the NICE representative. It is easy for the essence of a discussion to be seen differently by different...

Just to comment that there does not seem a time allowed for the different tables to feed back as per Agenda . After point 5, facilitated discussion, it seems to run into closing remarks for which 10 mins has been allocated. Maybe the 1hour 40 mins for discussion allows for group feedback, but...

Just noticed that there is a comment under the article by someone called " friendly cat" thanking Natalie and the Indy for the article, and asking if anyone was interested in asking the Guardian about their cosy relationship with the BPSers. It had quite a few likes- would be good to see some more.

Thank you @MsUnderstood. Many of us here in UK who were readers of the Guardian, may have been willing to move across to the Independent if there was a print copy. Wonderful to read @Natalie Wright's great article in the online Independent - wish the Guardian would move in that direction.

Just to clarify- has the Independent stopped producing a print copy or not in UK ? I am glad to hear of a 4 page print copy from @MsUnderstood above, but is this in Canada only? If not, and we have it in UK, I need to change my paper tomorrow...

http://www.bbc.co.uk/news/uk-35561145 If it still did a hard copy I would change my newspaper.

@Valentijn - site below is the one I have used although only dropping in now very occasionally. It tends to be quite techie using all the features of various monitors, graphs, plots etc. Alternatively it can be used just monitoring basic HR. There are people with a range of expertise who I have...

I too recommend the group "pacing with a heart rate monitor "@Daisy described. There is a lot of expertise in this group. They do not urge increasing activity, rather the opposite, preferably keeping under .5-.6 of age related HR, so most people are trying hard to reduce activity. For me that...

Thank you for posting your response to that article @Subtropical Island . The depth of your response hurts but I too hope a way of telling your kind of story ( and mine) will one day be there. You explain it so well :I didn't know I needed to know this so thank you.

@Samuel She was in incredible pain and Omar had to lift her from the wheelchair and lay her on the ground. The pain continued and Omar tried to relieve it by gentle massage. As well as having no speech, at times her speech was distorted. She tried repeating a syllable several times. She had...

I had one done in about 2008. It was done privately by an endocrinologist and I was on a hospital ward for several hours. I was fine while it was being done but several hours later, I felt pretty awful. Climbing the stairs at Vauxhall station to get home felt like climbing Everest. HR...

Brainstorming 1.Sending a petition to Boards of Trustees of Action for ME and the MEAssociation, asking them to disentangle their organisation from working in a way that supports EC who repeatedly and consistently harangues, demeans and lies about pwme As pwme we wish it to be known that EC...

Yes, @Jonathan Edwards. Thank you for your contribution to the Buzzfeed article, and the other statements you have made in support of pwme. They are always very welcome, and I should have recognised them. I do remember one that was something to the effect that you are retired whereas other...

Many years ago in the 60s, I read a book called " the power elite" by C Wright Mills. The title describes what seems to be going on here. It is still available second hand on Amazon so I think I'll have to buy it and look for the parallels. Not sure that it covers how to challenge " the power...

Why do we have to rely on US researchers to challenge Esther Crawley? I know they do it very well but have we none of the home grown variety to do it? Or have the SMC and bio psychosocial school got all the power wrapped up? EDIT: the last question was a rhetorical one of course.

@Cinders66 I agree with most of this, but actually it is possible to refuse to give consent to too many consecutive tests, and I think an ME patient going into hospital should give careful thought to this prior to admission. A letter from your ME specialist, assuming you have one, explaining...

I watched " United 93", the story of the 4th highjacked plane on 9/11 that didn't reach its target. I have no idea of this film's appeal. Have watched it at least 5 times. Always a benefit these days because if concentration goes, it doesn't really matter. Part of it might be 'the story' of...