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As far as I can remember from Staci's story about the runner, they weren't convinced she really did have ME, functioning at that level, until they did the two day exercise test with her and that was felt to be conclusive evidence of PEM along with the other symptoms. They think you can have PEM...

Hi, I've lost track of where i should be posting comments about the Dialogues project and requesting help. https://www.dialogues-mecfs.co.uk I've been working on editing a longer 'wider context' video and have all but one of the contributors' interviews roughly edited. Soon I'll be working...

Hi @lunarainbows, I sympathise with that, because I worry about my daughter's future too. But I'm afraid there is no way I can make the Wellcome funding stretch to cover everything we want to cover. There's a wider context for ME/CFS video underway at the moment - just arranging to talk to Mike...

Not in May, but probably in the Autumn if it seems safe and possible.

I'm collecting together a list of charities and organisation who have embedded or linked to the Dialogues project and videos... to send to Wellcome. If you have come across other significant sites, please could you let me know. Thanks. I need to demonstrate that the project so far has been found...

Thank you very much to everyone who has been posting, tweeting and linking to the videos so effectively, especially Tom and Linda. Please keep it up! Thank you. It will all go quiet now for quite a while, we try to get to grips with the wider context video/film. I undated the Home page and the...

And Hypersensitivity https://www.dialogues-mecfs.co.uk/films/patients-experiences/

The last two of the Patients' Accounts of Symptoms are now up! Pain and Hypersensitivity. Thanks to every one who contributed to all these videos. I think they give quite a good sense of the disease, considering how limited we were by covid restrictions...

Thanks for the suggestions. I've actually covered the 'gradually increasing exposure' myth in the video @JemPD . I've got a bit more time to think exactly what to write for the website, so I'll have another think about it all. @Ravn I do get that and I'll check the video too, to make sure all...

I was looking for something to go on the website beside the Hypersensitivies video. I don't think there is much that can be said about about the probably causes of this, but I notice posts by @JemPD and @lunarainbows about hypersensitivity and wondered what you think about this passage, which I...

That's good to know. Thanks.

I'm pretty certain both contributors didn't have it before ME. I think John said he'd had a good memory for names and faces and Anna certainly didn't have it before, and probably only after a major relapse.

Thank you very much for all your efforts with getting these videos out Tom. It was a while before I saw you were posting the first ones separately on twitter with encouraging comments. Thanks.

And another two videos uploaded - Sleep Dysfunction and Orthostatic Intolerance. I think teh OI one is worth watching and thinking about in relation to the NICE Draft which doesn't pay much attention to it. ..https://www.dialogues-mecfs.co.uk/films/patients-experiences/ Attached Files:

The forth of the Patients' Accounts of Symptoms videos - 4. Cognitive Impairment - is now up..https://www.dialogues-mecfs.co.uk/films/patients-experiences/

The third in the collection of Patients' Accounts of Symptoms is now up - Post-exertional malaise or Post-exertional symptom exacerbation... as NICE refers to it. There is also a transcript for the Pacing video which was put up last week...

Hi Jem, Thank you very much. I'm so glad it was useful for you. I saw your post yesterday? about a video to show neighbours and was wondering about it... Did you see this animation - https://voicesfromtheshadowsfilm.co.uk/2018/animation-for-severe-me-day/ a friend of my youngest son made it...

Activity Management – Pacing. https://www.dialogues-mecfs.co.uk/films/pacing/ A new Dialogues from a neglected illness video released. Pacing has become an important subject for some people following covid 19, so we interrupted the Patients’ Accounts of Symptoms series to edit Pacing. Then the...

Thanks @Kalliope. I'm really glad to have these up and the next ones nearly ready. I'm hoping they make quite a substantial body of evidence as a whole. Yes, it is always shocking to have it brought home how ill people have been for so long, and how in so many cases, it needn't have been like this!

We've just made a few minor corrections to the Severe ME videos and added a postscript to the Hospital one - an idea mentioned to me recently, which I thought could do with a bit of an airing...