Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study

i believe that afme pull stunts and between the lines the corporate sponsor may well have seen the research critique re children with me lp. gotton onto afme andn made sure their money was not going to crawley.

couple of things here re crawley.

1 i wathced that ted talk of hers all the way through.
noticed her gasslighting in it. its vile

rather like sw rocky boat hypnotic prose re the good ship pace

she starts about is it her father the hero, who her eyes light up as she speaks wit pride inspriing our pride in the world war heros.

then comes the BUT he made her do horribe things when she was a child. she doesn't describe sexual harm but tough stuff like surfing some wave something she found scary difficult

it seems like she is hypnotising the audience to say even heroic parents who LOOK great from the outside may be different and cruel perhaps doing the child harm

it comes accross to me as i was harmed as a child. to elicit the feelings for her suffering which she then goes on to talk about how she wants to help kids with me.

even though she has to put up with the crazy pwme who /using the times made up pretend mock up that never was sent by a patient just artwork by newspaper

then she charms the audience gasslighting them that who would send a note to her to chop her gnads off. smiling out at the audience. saying it makes you wonder or simular working.

thus maligning the patients as crazy this is a form of gaslighting. to make your victim seem crazy to others.

now i am not qualified in any way in this area. i just seemed very strange but obvious to me.

snow white just loves to help suffering children. how far from the truth could that be.. ghastly woman
 
i am not sure where to post this but this was a thread here i can't find. cope posted this on twitter

Journals need clear definitions of conflicts of interest and processes for handling conflicts of interest, whether identified before or after publication. For advice and guidance use our flowcharts, guidelines and cases with advice.

https://publicationethics.org/competinginterests @cope

i may need to move it or delete this post. can anyone advise what status is now on conflict of interests in smile
 
Bluesky said:
between the lines the corporate sponsor may well have seen the research critique re children with me lp. gotton onto afme andn made sure their money was not going to crawley.
Click to expand...

Hmmm... you know, it wouldn't amaze me if a corporate sponsor was more competent and caring of how funding for ME/CFS is spent than Action for ME.

Surely Action for ME must be starting to wake up to reality now though!
 
Bluesky said:
Journals need clear definitions of conflicts of interest and processes for handling conflicts of interest, whether identified before or after publication. For advice and guidance use our flowcharts, guidelines and cases with advice.
Click to expand...

No love for my flowchart COPE? :(

Barry said:
Absolutely. Don't think I'd trust her with a hamster.
Click to expand...

514gnpxGIxL._SY346_.jpg


I thought he looked a little nervous and vulnerable.
 
I have sympathy for Crawley around her experience as a child.

The problem is the distortion that experience caused.

My simple explanation for all that followed is this:
  • My Dad loved me
  • My Dad did a bad thing to me
  • My Dad did a bad thing to me because he loved me
  • therefore, doing bad things to others with less power is OK if done from love
This is a pattern that may of us have seen, often in women who are abused by a spouse for instance.

The only way to survive as a child was to internalise the message that arbitrary violence is a manifestation of love.

She says in her talk that she 'had to forgive him' (her father) for threatening her life.

There are giant red flags around this part of her talk, for those who know what to look for.
 
Ok let me dig deeper here. The BPs is all about insurance payments.
So how much does a child disable gets? more than an adult? Same?
And is there the 2 year cap on the child for psychological causes too?
 
Seven said:
Ok let me dig deeper here. The BPs is all about insurance payments.
Click to expand...
I'm not sure it is possible to say that BPS is all about insurance payments - although I do agree there seems to be some evidence pointing in that direction.
So how much does a child disable gets? more than an adult? Same?
And is there the 2 year cap on the child for psychological causes too?
Click to expand...

What about labelling? Once psychiatricly treated will there always be doubt about future illness. A doubt that can be pulled up to deny future payments perhaps? - ie once the child is an adult? Or might that label be a reason to charge higher premiums?
 
Esther12 said:
Hmmm... you know, it wouldn't amaze me if a corporate sponsor was more competent and caring of how funding for ME/CFS is spent than Action for ME.

Surely Action for ME must be starting to wake up to reality now though!
Click to expand...

action for me have been woke for a long time now. lets see hmmm we wouldn't have had pace if they hadn't backed it. lets hope corporate sponsosr was more caring and woke with recent press.

afme fully know what they are doing. though i would not be surprised if this was spin. to fool public they are good charity

still at least its some money that crawley is not getting. it must be uncomfortable for her atm at least. now sw has had to step up and write his letter.
 
Luther Blissett said:
I have sympathy for Crawley around her experience as a child.

The problem is the distortion that experience caused.

My simple explanation for all that followed is this:
  • My Dad loved me
  • My Dad did a bad thing to me
  • My Dad did a bad thing to me because he loved me
  • therefore, doing bad things to others with less power is OK if done from love
This is a pattern that may of us have seen, often in women who are abused by a spouse for instance.

The only way to survive as a child was to internalise the message that arbitrary violence is a manifestation of love.

She says in her talk that she 'had to forgive him' (her father) for threatening her life.

There are giant red flags around this part of her talk, for those who know what to look for.
Click to expand...

yep again seen in men who have had violent childhoods learn that as their normal. so replicate that in later relationships.

a lot of red flags yr right

however its the story telling and how she grips the audience into her spell. the way that reflects on those parents. how she relates that to the parents of kids with me. the violent threat letter. makes you think or something like that she said.

thats what i see her doing. making people think. feel sorry for me my dad did a bad thing perhaps from love. is she putting it out there that the parents of kids with me are doing a bad thing keeping children from treatments that work. insisting on letting their kids rest.

or is she insinuating far worse things that those parents who look like heros are really doing something else. like the picture of her father the hero but really did a bad thing that she had to forgive him for.



not to far in this she admits that she got permission to use the times letter and says she has has letters like this. so openly admitting that she had to get permission to use it. which if it were sent to her she would surely not need.

we have tymes trust openly talking about how parents are being accused of abuse of children having children removed or threat of this action. yet tymes have had around 2 hunred cases of which none have had kids removed.

is ester hinting and placing the thought that the parents are not so nice. that she is going to save them.

seems manipulative and well planned speech.

you see also in the above link that she is saying she is researching what the parents are asking her to.
 
Lilpink said:
That's an interesting perspective which hasn't been noted before afaik. Her 'victim-hood' as a child when compared with real abuse is more than insulting.
Click to expand...

as i said ghastly woman. kids and families living in fear of being taken away. forced into treatments where full concent is not given. as no body tells the parents or children that these treatments can harm.

perhaps thats what we should concentrate on more. the informed consent of both parent and child of these treatment harms.
 
Diwi9 said:
Hmm...hopefully this is fall-out from the Independent article :)
Click to expand...

yes re @cope i hope so. hope they are taking seriously. have not enough energy to reaad the whole thing.

sw has written a letter in reply to the independent article. saying he was edited down in the don't give benefits out.

quote
a discussion on the
>> dangers of prematurely assuming that people had permanent or
>> long-term disability. Like all my generation, we had been taught a
>> lot about the “labelling” – namely that the name you give to a
>> condition can contain numerous assumptions about the disorder, which
>> may be erroneous but self-fulfilling. This is still an issue today
end quote

i gasped as i read the ref to the name.

shows he knows exactly what they are doing using chronic fatigue.

interesting that he says that todays me is not like the hospital outbreak and todays me is not benign
 
Luther Blissett said:
The only way to survive as a child was to internalise the message that arbitrary violence is a manifestation of love.
Click to expand...

This isn't how I reacted. I grew up thinking I must be an awful person because I was so often hit, and so often jeered at. I ended up with a severe inferiority complex and a belief that I wasn't worth knowing because I was such a horrible person. Anyone who ever complimented me for absolutely anything, I just assumed was taking the piss, and I expected the punch line to be that they were only joking and of course I was a retard, ugly, horrible or whatever.
 
Amw66 said:
Royal Free outbreak was not benign either. When Prof Behan tracked down survivors decades later it was clear that few if any had " recovered". Ongoing illness had been a part of their lives .
Click to expand...
My understanding of the medical usage of the word "benign" is that it probably means that you may not die, in a way that was caused by the condition, this month, and can thus safely be ignored, until this changes, without fear of legal or disciplinary action.
 
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