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Bristol Post article: "It's a living death when the symptoms are very severe"

Aurator

Senior Member
Messages
625
This seems a reasonably balanced article. They invite comments.

'Sarah-Jayne Lewis...spoke to Tom Morris about how the often misunderstood condition has affected her life.'

'"I went to the doctor but ME was dismissed and I was told I probably had depression again," she said.'


'"It's fair to say I live much of my life through social media.'"

'Understandably, on occasions, she has been in a dark place and wondered if there is any point going on...'




 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
What I like is they talk about the little things. Talking on the phone. Glare from TV, fluctuating symptoms hourly.

I still think its hard for anyone who doesn't have this to understand just how bad it is.

You can think you get it, but no one can except another PWME "gets it".
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Excellent article. The journalist obviously gets it, and wants reader to as well. He deals with the psychosocial view by simply not mentioning it, which is fine, let them blow their own trumpet. I've stopped saying "some people think it's psychosomatic but ..." as well.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
And when this article hit the press the BPS group started flapping and clucking and immediately started looking for a media outlet that would bring their view back to centre stage. I'm sure we'll be seeing the fruits of that hysterical need to have their phantasmagoric interpretation of this illness along with their 'platinum treatment' protocol in a paper coming to us soon.

After all, never ever trust a patient. We haven't a clue as to how to understand what we are experiencing. Thankfully (not) the experts can rescue us and tell us all about it. :rolleyes:

I do confess to one stupidity on my part. I'm still trying to wrap my head around how -- how in the name of sanity do this group continue to not understand the harm caused to patients because of their views. :bang-head:

Although, on a more upbeat note, it's been mentioned in other threads that the views expressed more recently seem more muted, cautious, and carefully ambiguous.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I do confess to one stupidity on my part. I'm still trying to wrap my head around how -- how in the name of sanity do this group continue to not understand the harm caused to patients because of their views. :bang-head:
I have an answer in the form of a multiple choice question: a) Because they don't want to understand? or b) They do understand but they don't care? or c) They don't have the capacity for empathy?
 
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Snowdrop

Rebel without a biscuit
Messages
2,933
Because they don't want to understand?

Yes, I suppose so.
To me the motivation to understand things as they are is so strong it's still difficult to comprehend deliberate and willful obtuseness.
I suppose their POV is sufficiently rewarded that it makes it easier.
It must take a great deal of energy to keep reality at bay.
 

Effi

Senior Member
Messages
1,496
Location
Europe
I do confess to one stupidity on my part. I'm still trying to wrap my head around how -- how in the name of sanity do this group continue to not understand the harm caused to patients because of their views.
a) Because they don't want to understand? or b) They do understand but they don't care? or c) They don't have the capacity for empathy?
Because their belief in their own theory is so firm that they are willing to do anything to keep it alive. Including blatantly ignoring reality.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I have an answer in the form of a multiple choice question: a) Because they don't want to understand? or b) They do understand but they don't care? or c) They don't have the capacity for empathy?

d) They are paid to not understand

Donald Trump said:
I will tell you that our system is broken. I gave to many people, before this, before two months ago, I was a businessman. I give to everybody. When they call, I give. And do you know what? When I need something from them two years later, three years later, I call them, they are there for me. And that’s a broken system.