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Re-blogged : Hip Surgery and ME: Society Has It Wrong

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I had to reblog this post.
It is from Jeannette Burmeister’s blog which is called
http://www.thoughtsaboutme.com.
And it is written by her husband Ed Burmeister.
It is about one of the worst, most painful issues, encountered by people with ME.

Thoughts About M.E.

I am proud to share a note that my husband, Ed Burmeister, wrote last week. He initially posted it on Facebook only where it received a lot of attention and was shared more than 250 times. It really resonated with the community.

Therefore, I talked him into allowing me to post it here as well. I am blessed to have such a supportive and loving spouse.

Last Wednesday, I had a complete hip replacement.  It was a short procedure (1-1/2hours). No general anesthesia required.  I was out of bed the day of surgery and home after two days.  On Monday, I started driving again and really could have done so on Saturday already. Yesterday, I returned to work. I was comfortably working away, largely free of pain.  I walk without a limp and with no assistance and am pretty much unrestricted in my activities. I never needed narcotic painkillers after…

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#ME Insults on Twitter

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ME Insults

In my post of 6th Oct I mentioned that the poor treatment of people with CFS or ME was a scandal. And I had mentioned the ME Insults timeline on Twitter. A bit more about this now.
Twitter is marvellous for connecting with people worldwide on endless topics of interest.
Recently someone posted (tweeted) a message suggesting that people share any insults they had received since having ME or CFS. This then quickly expanded to include any comments which were – ignorant, hurtful, nasty, silly or just plain stupid. It was suggested that any replies included #Meinsults in them – so they would be recorded in a separate timeline in Twitter.
And it just took off.
Hundreds of people posted messages – maybe even over a thousand in just a day or two. What started off as a way of sharing and venting frustrations about how folk had been treated became more serious as all the posts (tweets) came thru.  And were read.  Seeing so many examples in black and white of how many people had been treated poorly (by GPs and/or friends, family, relatives) was incredibly shocking. None of it will be news to many people who have had CFS or ME – especially if over a long period of time.  But seeing so many examples in writing somehow made it really hit home.
Some random examples from the #Meinsults timeline as follows :

“You have been unwell for far too long now. Its time my son found himself a new wife.”
(Has got to be one of the most cruel ones.)

“That shooter had something wrong with his head – and you have too.”
(Incredibly from a GP to his patient and referring to a gunman who had shot and killed several people in the city earlier that week.)

There is something wrong with your head.
(A variation of above but from a GP’s receptionist this time. Yes – the receptionist.)

“It doesn’t matter how bad it makes you feel – you must keep doing it.”
(My 1st GP’s view on keeping on exercising on top of working full-time while my health and symptoms got worse and worse.)

Do you not get bored in the house all day ?

We all get tired but we just have to push on.

Maybe you should try to be a bit more positive.

If you bring her back to school tomorrow then we will say no more about it.
(From a head-teacher to the mother of a severely affected pupil.)

I couldn’t be bothered with that.

I’m not the sort of person who would get that.

I don’t really believe in all that.

I don’t think he is really trying to get well.

You really shouldn’t keep him indoors so much – its not good for him.
(From a GP to the mother of a severely affected sufferer who had deteriorated to the extent he was almost bedridden.)

We don’t do home visits for fatigue here.
(A GP surgery refusing to visit a severely affected housebound sufferer.)

This is just a very brief selection.

Some thoughts :
Why is this still tolerated today ? And why do people feel it is ok to speak to sufferers like that ? And would these sort of comments would be made to people with cancer or multiple sclerosis ?

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