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Thank you Adam. A great and important piece of work. I enjoyed rereading some of the references too. Am I right in remembering that it is 4 years today since the Information Commissioner's Tribunal ( ?Upper Tribunal) announced that the data should be partially released? What a day for pwme...

Good to see you here @Indigophoton. I'm not up to reading the paper either. I do however try to limit how many things might be competing for my attention at any one time. Life is impossible otherwise.

Overview of ehlers danlos and lipoedema From about 20 minutes in , there is discussion of ehlers danlos (eta type 3 hypermobility) and lipoedema, of interest to me because I am diagnosed with both. There is also a mention of mast cell disorder.

Sending sympathy. I was diagnosed only 5 years ago in my 60s but, looking back, the signs were there. Now progressive -hate it. Another illness that is judged, stigmatised and misjudged. I think exercise kept it somewhat at bay for a long time but exercise not possible now so ME is a rotten...

Done. My MP is Sir Ed Davey and I revised the ME Action letter to remind him of his statement in the WH debate in June 2018. He has also been very supportive. "Real harm is being caused by some of the therapies recommended in the guidelines. If that is the evidence from ME sufferers—I am not a...

Thanks @Andy. We are spreading the word as requested. Looking forward to what emerges already. Keep well. edited: first sentence

Have signed up. Feeling very emotional today. Thank you to all who have worked on this both directly on the project and over the years in preparing the ground so that others could take it forward.

An earlier thread https://www.s4me.info/threads/ldn-seems-to-be-working.8936/ Edit: corrected thread

Thanks @Gecko

Thank you @adambeyoncelowe

Is there any way of answering this page by page, and storing answers in between sessions? 59 questions is an awful lot to answer in one go. I am still crashed after an unusual MRI 11 days ago, and cannot contemplate completing this currently. I wanted to scan what was required before starting...

“Wanted to highlight this bit Derya Unutmaz said: The last comment I can make is that in the past several months, we have tried to engage the community through the opportunity of the center, both through social media as well as through the blog. We hope to increase these efforts. I have to say...

I sincerely admire the clarity of your letters @Trish . Thank you for the work you put into them. I look forward to reading a response.

I meant the intramural study @Wilhelmina Jenkins. I’m glad it is making progress.

I don’t mean I ‘like’ this. Nobody could like it. Just a disaster. And the NIH study is still not recruiting? Unless it’s changed recently. What is going on?

Good wishes @dangermouse. Thinking of you.

Thanks @Dolphin for posting the review paper. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229648/ I haven’t had the energy to read it in depth and initially, a quick skim raised my hopes that it might be a reasonable qualitative summary but then the emphasis moved away from the “ lived...

Thank you @dave30th for all you are doing. It isn’t easy to tackle the eminences of the ME world and the Establishment that has consistently supported them. Chipping away at their foundations is a very worthwhile achievement.

A quick google has thrown up the following study ( as an example) which uses a qualitative phenomenological approach to the experience of a group of Canadian parents of children with autism. 2008 so not particularly recent...

My social science background comes into play here which of course does not include psychology. If my brain were present I could write more but I think you would find the theoretical approaches in sociology very interesting from Weber onwards. Qualitative methods in sociology would include...