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Thing is, I was a bit worried before but I was gearing up to have this because I knew I'd never feel safe if I didn't. I've never had an anaphylaxic shock, but I have had the kind of breathlessness and rashes referred to in the BBC article, although not in an alarming way for maybe 20 years, in...

https://news.sky.com/story/covid-19-vaccine-uk-regulators-warn-people-with-history-of-significant-allergic-reactions-not-to-have-pfizerbiontech-jab-12155916 This makes me more worried about having a vaccine. Throughout my illness, I've had reactions which have worsened my ME symptoms, tho they...

Thanks for yr replies. @Trish, I have a local advice centre that I was thinking about consulting who have been helpful with other stuff in the past, so that sounds like a good idea, thank you. @NelliePledge, I had GET many years ago and it ended badly (I was unable to keep up with what I was...

Hey, I live in the UK and have had ME for over 20 years now, spending much of that time claiming disability benefits. A few years ago I came into some money which meant I didn't have to jump thru the hoops of the process for a while, the stress of which I find very difficult, so I have been...

I found a list of all the state's clinics online, as well as handing those particular ones over, and she's going to look into things from there. Thank you for yr input, it is something at least. It seems a terrible business asking if one awful diagnosis may not be enough, cos there might be...

Yes, she knows that this is quite an individual thing regarding hypermobility, the main thing is to get to the bottom of the PEM type problems as they are getting worse and EDS Drs aren't really in the way of doing much about it. Whether that means treatment (which will be her own choice, tho i...

Hi, thank you for yr response and the welcome. She has hypermobility, so I may be wrong in using an old classification, I probably am (me being wrong is not uncommon). But what we were looking for was an ME doctor rather than an EDS one, she already has a specialist there, it was more a case of...

Hi, I'm a first time poster from the UK and have had ME for a long time, so just to say: hello! hope yr all doing as well as can be expected, etc. Anyway, the reason for calling in is i have a good friend in LA who has Ehlers Danlos Syndrome, type 3 i think (dunno if it's relevant tbh) and...