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Any idea who Ashley is and where they are posting on FB? Thanks.
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History, influence & implications of the IiME conference
- Thread starter MEPatient345
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Jo Best
Senior Member
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Ashely is @AshleyHalcyoneH of OMF I don't know where she posted that on Facebook but this is their official page: https://www.facebook.com/OpenMedicineFoundation/
When the Invest in ME conferences started some patients believed quite naively ( I was one) that it could be used to educate doctors, the media, politicians etc.
We simply did not understand the dept of hatred and prejudice against us. It was never about getting the science to the right people and they would support us.
The turning point for me was the behaviour of one invited guest Trish Grove at the conference and after in the British Medical Journal. Her rudeness at the conference and then the use of the BMJ to push the interests of the PACE and psych lobby and to discredit patients and the conference showed us that it's not about education.
The conference will be used to hit patients in medical journals and the media if they can. We just need to be aware of this and watch out for obvious cases.
http://www.investinme.org/Article-504 BMJ.htm
We simply did not understand the dept of hatred and prejudice against us. It was never about getting the science to the right people and they would support us.
The turning point for me was the behaviour of one invited guest Trish Grove at the conference and after in the British Medical Journal. Her rudeness at the conference and then the use of the BMJ to push the interests of the PACE and psych lobby and to discredit patients and the conference showed us that it's not about education.
The conference will be used to hit patients in medical journals and the media if they can. We just need to be aware of this and watch out for obvious cases.
http://www.investinme.org/Article-504 BMJ.htm
Last edited:
Jo Best
Senior Member
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- 1,032
@ukxmrv I was going through one of my worst ME phases when IiME started and I wasn't online so I only found out about them when I decided to take the plunge into social media in 2010, which happened to be the year they published their proposal for a UK Centre of Excellence for ME, so I was excited about that and it was something to focus on.
I found out about the SMILE trial at the same time and naively assumed it was just a mix of ignorance and incompetence, so that was a very steep learning curve to discover that not one single government department or public-funded organisation cared a jot about the blatant denial of participants' rights to informed consent or patients safety and a whole host of other glaring flaws in the trial design and so on.
I found out about the SMILE trial at the same time and naively assumed it was just a mix of ignorance and incompetence, so that was a very steep learning curve to discover that not one single government department or public-funded organisation cared a jot about the blatant denial of participants' rights to informed consent or patients safety and a whole host of other glaring flaws in the trial design and so on.
Jo Best
Senior Member
- Messages
- 1,032
This was a report on the 2016 Invest in ME Conference in independent media: https://www.thecanary.co/2016/06/08/people-mecfs-long-told-head-scientists-disagree/
Journalist Conrad Bower went on to write this about the PACE trial: https://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/
He uses the images from the Matchstick Campaign: http://www.investinme.org/matchsticks.shtml
Journalist Conrad Bower went on to write this about the PACE trial: https://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/
He uses the images from the Matchstick Campaign: http://www.investinme.org/matchsticks.shtml