Countrygirl
Senior Member
- Messages
- 5,630
- Location
- UK
OOhh, I am blocked from @SWPaedsclub, not allowed to view their posts or comment anymore
That is praise indeed, @Molly98 . Very well done!
OOhh, I am blocked from @SWPaedsclub, not allowed to view their posts or comment anymore
Anyone need a new avatar?[/QUOTE
That is praise indeed, @Molly98 . Very well done!
I deleted that message, after I realised I can't work twitter.How did they delete your comment? Can people do that on twitter? Or was this facebook somewhere?
(People posting stuff here is drawing me to social media... but social media is not for me!)
Organisations can change... but people have now stopped telling me that I need to give Sonya a chance to change things. I think that she's happy to tell people what they want to hear (which led to some false hope amongst those wanting AfME to turn itself around), but only it doesn't involve taking a stand against anyone with real power.
You go girl !I'm tweeting. Amazed not blocked yet. Maybe receiver too enthralled by Crawley...
Anyone need a new avatar?
When MUPS is exposed they will come up with another name.
Disgusted by this bio I came across earlier: 'Child Psychiatrist/ Academic who believes that it is easier to build strong children than fix broken adults. Could childhood psychosomatic symptoms be the key?'
The difference is very clear and obvious.
One was a misjudgement, probably by a junior medic, who never wanted to be on the committee anyway, and certainly did not want to be responsible for the publicity for the meeting. He or she probably never contemplated that "muppets" would be regarded as anything but a reference to members of the club.
The other wasn't.
Here's everything I tweeted before I was blocked:
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One doctor may have come up with the name (or maybe it was a group of them came up with it as a joke, we don't know) but everyone else involved with this meeting seems to have gone along with it, as usual it's taken patients and parents to shame them into action, and even then carrying on calling these diseases MUPPS is totally ignorant and out of order. Thefe really is no excuse.
Well done Trish, I do find it amusing that we have been blocked seeings we don't even know our way around twitter and are complete novices it's quite an achievement.Here's everything I tweeted before I was blocked:
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So they blocked you, and your tweets were reasonable. The problem is this is about power, abuse of power, and people thinking no one, certainly not patients, have the right to challenge them or (heaven forbid) show greater knowledge of an illness. Their almost non-existent knowledge of ME is solely their own responsibility. They have done nothing to correct it, and blocking patients with longstanding knowledge of the illness, and of the research, only shows they are wilfully deaf to reason. They only want to hear from those that agree with them. They want to be praised, promoted. This is as much about professional ego as anything else. Meanwhile child and adult patients continue to suffer.
It's almost as if these doctors have not joined us in the 21st century (unless it's the post-truth part of the 21st century). They have a total disregard for patient knowledge or opinion. We are like children, to be seen (by them) and not heard (unless it's to passively agree with them, regardless of the cost to ourselves and our lives).