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My bold. What is wrong with people that they do this? The map showing greatest incidence is telling as to why it's neglected. The Guardian has an international reach these days so I hope this article does some good.

My fitness tracker isn't infallible either though. It doesn't record all my steps, but does record hanging up laundry to dry - as steps! Apparently I go downstairs far more often than I go up too. That said, it's a fair indication of my activity, particularly over time. It would still be...

I really don't know what good MS thinks he is doing in that twitter thread.

Backing up our strong comment with documentation, as @JohnTheJack did in the Michael Sharpe twitter thread, is when plain speaking can be really effective. I don't know who follows MS on twitter, but they all had the opportunity to see an accusation backed up by JohnTheJack . That really...

whoops sorry - unreliable brain

I haven't returned to the survey to finish it yet, but I also found the reference to 'blocks' confusing (and it sound s to me as though even Americans might be confused by that one) and I also was confused by the difference in my ME over time - it's relapsing remitting in a fluctuating manner...

@Alvin me too

Hi @Kafka This is the email address given on the MEAction website for the organisers of this carer's event caregiver@meaction.net Jane, Bobbi and Denise are the named persons. It might be useful to contact them. This info is from the link in the OP, you might have already found it also...

Well done the MEA

(This is a general comment, not directed at you @Alvin) I think it's fair to say that there will also be people who look at that thread of tweets to Michael Sharpe and believe it to be harrassment of Sharpe. That's just how it is.

I've not completed it yet. I did find it difficult to include 'weird' symptoms which I find hard to explain and haven't got the energy to try. I'm also finding that although I can see the questions seem to be worded carefully they don't always fit with how I would put it. I'll give it another go...

I remember this as being a restriction on advocacy that could be construed as being political within a cetain proximity to a general election (6months?) 38 degrees were campaigning strongly about this law change. I think it went through. All afair. Sorry this is a fuzzy reply but I really don't...

I really don't know if this is a really good idea, a good idea gone about in an odd way, or a bad idea. I wonder how AfME came to the decision that they should undertake an international advocacy role. They also seem to be doing it on their own rather than in collaboration with other ME patient...

55%

This is my view too Diwi9. I want what will be published to be solid and if I have to wait a bit longer for it to be so, so be it, even though I want 'The Answer' to be published yesterday. It's hard being like this waiting though. (Perhaps it will be like waiting for a bus, and three science...

I don't think we know how many get better, or all too often what is meant by 'better' when that word is used, or how many people have ME anyway. (Though the Nacul paper is a probably a pretty good go at prevalency in the UK, given the ridiculous circumstances around the condition.) I agree...

I used to have wagon wheels in my packed lunch box often when I was at school. I used to really hope they were some kind of biscuit too. eta - I don't want dietary advise from my GP; I'm not overweight because he hasn't coached me in healthy eating. I want an appropriate response to my medical...

Me too! And I'm really short as well.... No?... Joking aside I think this an excellent idea @Rick Sanchez - I can think of someone who might be interested.

I don't disagree with this Robert. It would be very helpful. However I think I've already concluded this will never happen and have moved on. Probably due to a lot of cynicism on my part.

I've just seen this thread again. I saw my GP yesterday about a flare up in gut issues and completely forgot to mention my gluten sensitivity and this research when it was one of the things I wanted to raise. And there I was sitting there at my appointment thinking how well my foggy brain was...