Search results

@Barry Do you have the link to that exchange between MS and Carol Monaghan? I'd like to see the rest of the thread but your picture is just an unclickable image as far as I can tell.

I think that people submit their stories to the people who run the group via private message, and then the stories are published with initials and date submitted. So there is no public direct link between the story and the Facebook account of the person who submitted it.

Chest pain can also be caused by severely low iron.

Is there any way to make sure that future research includes severely affected housebound and bedbound patients in any research cohort?

Well, sedating someone usually does alter brain function - people are sleepy, can't talk very fluently, probably have memory problems etc. I've just never heard of anyone being interviewed under sedation before and it strikes me as being very, very dodgy. Edit : The comment came from the quote...

"following an interview under sedation" WTF! Is that common? Does anyone actually believe what is said by patients under sedation? In what way is this ethical? Edit : I should have said "Does anyone actually believe what is said by patients under sedation is reliable?"

Is it "normal" for young kids to spend time being so introspective? I suspect that the high rates of depression found amongst the young may be one result of this, particularly for girls. I am so, so, so glad that I grew up long before the age of social media.

Two more links : https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425 Article continues at link above... https://www.manchestereveningnews.co.uk/news/greater-manchester-news/young-woman-who-spent-years-14678759 Article continues at link above ...

You can see the report from the link Andy posted. I can read it even though I don't have a Facebook account. A box pops up asking you to sign in or join, but there is an option to click on "Not Now" on that box which makes it go away (although it has a tendency to pop up quite often).

I wonder how many people with IBD are fobbed off with a diagnosis of IBS for years. I suspect a fairly large proportion of the people frequenting this forum have been diagnosed with IBS at one time or another, particularly if they are female with gynaecological problems. It's a diagnosis that...

Did everyone go home at 5pm? Because the BBC finally posted an article on #MillionsMissing (Correction : ME or CFS ) at around that time... http://www.bbc.co.uk/news/newsbeat-44094429 As articles go, it's totally pathetic. And it doesn't actually mention #MillionsMissing.

Anyone else noticed that reporting on the #MillionsMissing day is noticeable by its absence on the BBC news pages today? http://www.bbc.co.uk/news/health

Published yesterday, so probably in the wrong place :

Low thyroid hormone levels, particularly low T3, can prevent dreaming, or will dramatically increase the chance that any dreams are actually nightmares. (Based on my own experience, and anecdotal reports from others with hypothyroidism.)

I took Pregabalin for a few (perhaps three?) months a few years ago, for pain that was declared to be neuropathic. I'm not even slightly convinced that the pain is neuropathic though. I don't remember the dose I took, but I couldn't stay on it for very long because it made me sleep for about 16...

Snap! That describes me! My best time of day, by far, is usually evening. I know that I've had very high cortisol first thing in the morning in the past. I haven't tested it in recent years though. I'm pretty sure that people with very low cortisol first thing in the morning feel at their worst...

Anyone using German pharmacies from outside Germany itself are discovering that they no longer deal with anyone but Germans when it comes to prescription-only meds. https://www.iracm.com/en/2017/01/germany-parliament-advises-online-prescription-medicines-ban/ The "advised" ban now seems to be...

I notice that the "leading ME researchers and clinicians" are nameless. This is the first time I've seen this from the BBC in this context (as far as I can remember). It suggests to me that the BBC might be falling out of love with them.

Yes, that is why I thought it was worth posting. But it still shocks me to the core.

Doh! I missed that completely! Thanks for the answer! :banghead: :facepalm: :rofl: