Demepivo
Dolores Abernathy
- Messages
- 411
They've not been publishing questions submitted by PR members...stick to asking questions in Facebook
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
25 Oct E Crawley speaking at Better Science Better Data event......
- Thread starter NelliePledge
- Start date
They've not been publishing questions submitted by PR members...stick to asking questions in Facebook
she is talking about the torrent of abuse she has received
fake news and petitions against her research. Untrue that they increase exercise - they decrease it and people complain they are not exercising enough.
Journalists have said they won't report on it
She hates cyber stalking - and it's a crime so if anyone is listening out there then please stop!
fake news and petitions against her research. Untrue that they increase exercise - they decrease it and people complain they are not exercising enough.
Journalists have said they won't report on it
She hates cyber stalking - and it's a crime so if anyone is listening out there then please stop!
Should we release confidential data under FOI - her question is can data be truly anonymised. Using PACE trial as example (then talks about cake for a bit, and she can let you read the trial report over a cookie). Uses examples of Netflix and politics about how it doesn't work. In SMILE it's 100 children in a geographical data so people would just need to access school data to unanonymise. And she is worried about giving access especially to those who don't like the results. She really worries about the children.
Deepwater
Senior Member
- Messages
- 208
Anyone who has heard this still believe this woman is just honest but misguided?
Oh, Mrs. Coulter!
Oh, Mrs. Coulter!
there should be symmetrical scrutiny over conflicts of interest - said some people who oppose her do crowdfunding to support people who oppose her.
Q- is there a role for data papers that describe data without giving access to datasets.
A - interested in where they can combine data with other studies
Q - what real risk is there to people who are identified
A - if you have CFS as child and get better then you can't get job in the services, stigmatisation at school, parents don't want to be identified. If you recover and declare that then you get attacked by patient organisations for not having CFS in the first place.
Q - would it be a compromise to share data with researchers and not public
A - thrilled to do that
Q - you have lots of problems with public and groups challenging, does anyone challenge you in that you shouldn't lead the research as you are a paediatrician
A - yes people say that - lots of people say I am a psychiatrist and I'm not (lots of laughing)
Q - reminds her (questioner) of friends who do animal research and people go to their children's sports matches etc. What protection can be put in place for researchers doing valuable research
A - Bristol Uni is v good at protecting people. CFS is considered the worst area. Lots of people don't talk about it though. Everything she does gets reviewed and is used for governance and people say to her not to worry as it's all been reviewed and to just get on with the research
Q - how much of the abuse is because you are a woman
A - a lot of energy goes into cyberstalking....(didn't really come to any point)
questioner then says there is lots of data out there ie HIV where data has been shared and people have not been identified
Talks about doing her bit to protect the children
It was a very different style of presenting to any that I have seen but I won't comment here because it would just be my personal view.
Q- is there a role for data papers that describe data without giving access to datasets.
A - interested in where they can combine data with other studies
Q - what real risk is there to people who are identified
A - if you have CFS as child and get better then you can't get job in the services, stigmatisation at school, parents don't want to be identified. If you recover and declare that then you get attacked by patient organisations for not having CFS in the first place.
Q - would it be a compromise to share data with researchers and not public
A - thrilled to do that
Q - you have lots of problems with public and groups challenging, does anyone challenge you in that you shouldn't lead the research as you are a paediatrician
A - yes people say that - lots of people say I am a psychiatrist and I'm not (lots of laughing)
Q - reminds her (questioner) of friends who do animal research and people go to their children's sports matches etc. What protection can be put in place for researchers doing valuable research
A - Bristol Uni is v good at protecting people. CFS is considered the worst area. Lots of people don't talk about it though. Everything she does gets reviewed and is used for governance and people say to her not to worry as it's all been reviewed and to just get on with the research
Q - how much of the abuse is because you are a woman
A - a lot of energy goes into cyberstalking....(didn't really come to any point)
questioner then says there is lots of data out there ie HIV where data has been shared and people have not been identified
Talks about doing her bit to protect the children
It was a very different style of presenting to any that I have seen but I won't comment here because it would just be my personal view.
Crawley is worse than Trump. She just LIES, LIES, LIES
She claims that her patients support her but it is others who harass her. V Similar to Wessely with his phantom CFS patients who support his work and the militant minority.
Here is Dr Crawley's child patient in her own words.
She claims that her patients support her but it is others who harass her. V Similar to Wessely with his phantom CFS patients who support his work and the militant minority.
Here is Dr Crawley's child patient in her own words.
Great job by ME Militant responding to the lies and abuse by Esther Crawley and setting the record straight
Demepivo
Dolores Abernathy
- Messages
- 411
This is an idiotic comment if I ever saw one. Religious Crazies??
Is an Open Access Grants Manager
Needs to be told he has been fed spoon full of lies by Esther Crawley.
Is an Open Access Grants Manager
Needs to be told he has been fed spoon full of lies by Esther Crawley.
Great tweets and I
ME Militant!
Last edited:
Demepivo
Dolores Abernathy
- Messages
- 411
Can we find the MERUK tweets & Facebook posts where they say no researcher has been abused?
She was going on about the PACE trial tribunal judgement in her handbag and she will show it to people over tea and cake with a big deranged smile on her face. The judgement proves her harassment claim wrong and the results of her "great great trial" were exaggerated. It would not help her argument
Serious question. Is Esther Crawley mentally well? It appears she is going crazy and losing it?
Unless she has fabricated another positive tribunal judgment to put in her handbag.
Serious question. Is Esther Crawley mentally well? It appears she is going crazy and losing it?
Unless she has fabricated another positive tribunal judgment to put in her handbag.