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Reblogged : Severe ME: ‘Took nearly 40 years to be diagnosed’

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The medical mistreatment and ignorance about how bad ME is seems to be a world-wide problem.
This is one person’s experience from Australia :

ME Australia

by Sasha Nimmo

Between 24,000 – 60,000 Australians have severe ME.  This is the first in a series telling the stories of Australians with severe ME.

Given the wrong medical treatment and intervention harmed this patient’s health to the point of no return. Disbelief by medical professionals and community care workers made life even more difficult. This patient fears further mistreatment so asked to maintain anonymity.

Above is a picture of Basil, an affectionate miniature fox terrier and company during difficult times.

Even after so many decades of illness, this patient still holds hope in medical research and participates in studies at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases, one of the few places studying severe ME.

This patient shares their story with us.

What was your life like before you became ill?
For me, it is not a straight forward answer as I have had mild ME since I was…

View original post 1,333 more words

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#MillionsMissing – another photo

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image

Following on from my last post on the #MissingMillions day on 25th May 2016.
Here is another photo taken on the day of a lot of empty pairs of shoes that were sent.  This was in one of the American cities.

I just could not work out how to add this photo into the previous blogpost – in place of the one I deleted. Which would have been better.
I realise it is probably very simple when you know how . . .
But I struggle a lot with using any tech things like tablets, mobiles, laptops, etc. So many ME symptoms get triggered off, or made worse.
Hyper-sensitivity, electro sensitivity, or whatever . . . In any case, it can make simple things difficult and painful to do.
Just sending text messages can be torture even with my smartphone’s brightness on the absolute lowest setting.

Anyway, I’ve probably mentioned this before.  But just to explain why I have done another blog post just to correct a photo.

Making a meal of something that ‘should’ have been simple . . . .

2015 in review

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The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here's an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,300 times in 2015. If it were a cable car, it would take about 38 trips to carry that many people.

Click here to see the complete report.

#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 ?

You Look Fine . . .

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You look fine or You look well or You Don’t Look Ill

Thought I would give this one a post of its own.

We have all had this comment.
In fact – not just us with CFS or ME, but many others who have what’s termed an invisible illness.
There are 3 different ways this comment is made in my experience :

1) As a genuine compliment.
Made from somebody who really means well or cares.
And in this case it is very welcome. As it is usually obvious that the person is saying it with genuine affection and all good intentions.
And it is a nice thing.

2) It is said in a doubtful manner.
This can be a difficult one – as its not always very clear how it is meant. It usually doesn’t “feel” like a compliment. Or as though it was said in encouragement.
You are left with the feeling that the person is questioning the validity of your condition – CFS or ME.
But impossible to respond to – because of the way it is said.

3) This one is said more aggressively.
And you are left in no doubt that the person either thinks there is nothing wrong with you. Or that you are exaggerating things for some reason.
In my experience this has always been impossible for me to respond too also. Usually because of being taken aback by the manner of the person making the comment. But also some of the typical CFS or ME symptoms seem to kick in – like not being able to find the right words when needed.  And I have always been left unable to make any sensible and non-angry response.
Several hours later – I will think “Oh I wish I had said . . . .  “  .
But the moment has passed.

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