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Thanks for that straight-talking report @Hutan. There is a world of difference between being grateful for the work of dedicated researchers, celebrating any steps forward and the pat-on-the-head "got to keep their spirits up" paternalistic rubbish that is served up by some well-meaning people...

I am not severe but i have used this and i think it was quite sucessful dealing with my problem of fainting. I started passing out unpredictably when walking in the street (on supermarket trips) and the doctors did various tests but couldn't work out why. i can't find my notes from back in...

Ditto. I only realised I had POTS (years after I got ME) when I was given beta blockers (propanolol) for my Hyperthyroid problem, and couldn't wean off a low dose without my "ME" getting much worse. Then the penny dropped and i asked (nagged repeatedly) for a tilt table test and eventually got...

So just to be sure I have understood correctly (I found that big post a bit challenging to read). I am a non social media person. I assume it would still be useful if I took a picture of some shoes for the Millions Missing and emailed that to the address you gave? Thanks

@Marco, @chrisb Mine is on my legs. In my case it isn't a drug reaction - I wasn't taking any medications when this developed as a teenager. Coincidentally teenage was when my allergy issues started. I have been +'ve ANA for years now, although I don't test positive for antiphospholipid etc so...

This may be a very dumb question but could there be a link with livedo reticularis? Wikipedia says: Livedo reticularis is a common skin finding consisting of a mottled reticulated vascular pattern that appears as a lace-like purplish discoloration of the skin.[1] The discoloration is caused by...

Good luck with your tapering off @MishaParker9456 . I am glad to say ALL my symptoms went within a few weeks of stopping zopiclone.

Following Hutans thought and taking things further off thread still: I think a group of post Ebola, post SARS, post Polio and PWME people would make a very interesting study - I'd love to know where their symptoms overlap with ME-CCC/ICC and dont, and how potential biomarkers differ between...

Just read the full paper it's very good. However it is a sad commentary on the general standard of academic writing in ME and related fields that a total absence of "wince-making phrases" and "errr not quite hit the mark there bits" is remarkable. The author is to be congratulated.

Yes, having pondered about this a bit more, I suspect the 'treatment' for frailty will be exercise and encouragement to get out and about more. Just what we need. Optimism over. Someone who understands the science better may like to comment on whether or not this paper provides useful evidence...

Thanks for posting this @Indigophoton, those graphs look pretty powerful to me. I hope they will prove useful in future advocacy. So, imagine a long term condition where patients have the worst quality of life*, are likely to become frail early in life and are six times more likely to commit...

This is not about Winning. This is about embarrassing them.

A dose of slow release melatonin = nightmares so bad I wake the entire house with my screaming. I don't get nightmares otherwise and it is on the list of known side effects. Go figure. Thanks for the hugs. I was lucky to get out alive to be honest.

Well this is very interesting indeed, thanks for all your replies chaps! Will write more detailed replies later (unlike Gingergirrl I run out of steam quickly and am seldom sharp enough to post) but @Jonathan Edwards and @Invisible Woman it sounds like my experience is most similar to yours...

Just to be clear, my question is not about the withdrawal effects, or effects of taking it for too long a period, too high a dose or with other things. I had taken this drug a few years previously without problems, but when I took some a few months back (3.75mg 2 or 3 times a week) I got mood...

Thanks for posting that @Andy that's good to know she made the useful suggestion of a Warning Notice now. (@Invisible Woman I followed Andy's link to the MERUK page and then to the download of Sue waddles report, but for some reason although it would download, it wouldn't open for me on my...

I can't open this ( I can get to the MERUK page). Perhaps I am not Facebooky enough. Was it particularly interesting?

@OverTheHills I do better in the summertime, but it is these two weeks of being super sleepy that has me curious:) could be my SO is right and that it’s just an adjustment to the new season. Just a point of clarification - I don't do better in the summer. Once my late spring remission is over...

There have been threads before (maybe at the other place) with discussion about people (such as me) who get a substantial improvement every year in late spring and then relapse again. For me it begins mid April and finishes mid June U.K. or NZ in December. Sorry toosickly to look up appropriate...

Persuaded a friend to let me donate the contents of his small change coin jar. $95 nz which I think is about $65 US. ☺