Metro UK: “You Don’t Look Sick” Weekly Series

A reasonable piece - well done if you're a member here :hug:

People keep telling me I don't look ill either, it's happened once this year already. I don't meet or talk to a lot of people lol.

That said, it doesn't make any difference to my circumstances if people think I look ill, or not. The number of ATOS reports where a doctor writes that I look ill is, well, all of them. and it's never made a difference.

I do have one observation - 3 days for wearing pajamas is considered a long time between washes?

Wow - I thought I was doing well managing to push changing them down to every week or so (obviously unless I spill something lumpy on them)

Nobody ever tells anyone these things, I just wash them when they bug me, or when other washing needs to be done if there is space.
 
I've just got around to reading the whole article. I think it's excellent. Well done to Jenny McGibbon for being willing to talk about her experiences so clearly. And it's really good to see a clear description of ME with PEM properly described at the top of the list of symptoms. Good to see the MEA referenced too - I assume they provided the symptom description.
 
Another one:
‘Having M.E. is like you’ve ran a marathon with the flu and were beaten up afterwards’

From the article:

She says: ‘The important thing I want people to know is that M.E. (or chronic fatigue syndrome) is not just “being tired”. It is so much more than that.
Click to expand...

In terms of test results, there isn’t a biomarker, or set blood test, for M.E. yet. This means that standard blood tests do come back “normal” or “clear” but this must not be an assumption that therefore M.E. is all in the head. M.E. is very much a physical condition but just does not have a set biomarker for yet.
Click to expand...

‘In the past people considered multiple sclerosis to be a case of “hysteria” because they didn’t yet have a biomarker for that. Can you imagine saying that to someone with MS nowadays?

‘That’s unfortunately what is going on with those with M.E. Because there isn’t a biomarker, nor is there sufficient research to investigate one, it means attempted treatments are psychologically related, even though research has shown these are ineffective.

‘Until the psychological treatments of CBT and GET (graded exercise therapy) are shown to be what they are, i.e. damaging to those with M.E. then the research into the physical side of the illness won’t happen.’
Click to expand...
 
These are great quotes @Lisa108 I took a screen shot to send to my irritatating relatives and ignorant friends. No one wants to read a website or watch Unrest. And they've still no bloody clue, after 12 years. This is so succinct.

Her blog looks really good too. Helpful.
mummyingandme.com
 
Just twigged that it's the free paper you can pick up when getting the London Underground, the Manchester Metro (tram), and probably public transport in cities I've not been to. :jawdrop:

How brilliant to do a series to high-light that sometimes the healthy looking people taking, and remaining in, the seats designated for elderly, pregnant and disabled people on public transport aren't the rude and selfish bleeps you think. :thumbsup:

But it should be in a weekday issue! :banghead: Commuter days, to reach a bigger audience. :(
 
Last edited:
Rather critical error in early paragraph:

"PoTS is caused by an abnormal response to the autonomic nervous system, which means blood is not pulled downwards when you sit or stand up and there is a drop in blood supply to the heart and the brain."

Otherwise not bad for the press.
 
You must log in or register to reply here.
Back
Top Bottom