JoanDublin
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- Dublin, Ireland
If anyone is on twitter could you please RT this please? The more public this is, the more pressure the BMJ will feel the need to respond to David
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Trial By Error: No Ethical Review of Crawley School Absence Study
- Thread starter lilpink
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JoanDublin
Senior Member
- Messages
- 369
- Location
- Dublin, Ireland
If anyone is on Twitter could they please RT this? The more public pressure that's put on the BMJ the more likely they are to respond to David
To be honest, noise needs to be made frm outside UK about this ( and similar issues with previous research) to make any kind of difference: general public are not going to hear things like this, nor do they have a scooby as to what ME is actually like. Short videos going viral may do some good- recent one of man with MS in Scotland did more for disability awareness and MS awareness in 1 day than official outlets have achieved in years: it needs to be humanised
And good to keep it in the 'Open' rather than behind closed doors imo....
I'm sure that would be useful. I do think Joan's example of the use of Social Media holds this sort of behaviour to account within our own borders however. It's necessary to not feel this thing is too huge, or they too powerful. This is an excellent blog and asks very serious questions of Crawley and of the BMJ. We need to get behind it...
I agree the blog is excellent- the challenge is to disseminate reality to general public. Almost everyone " knows of" someone with ME, yet too few appreciate the implications of the condition. We are too good at being our own audience .
Binkie4
Senior Member
- Messages
- 644
@anni66
"We are too good at being our own audience."
Absolutely true. We respond to each other, exchange views, introduce information that widens the topic and challenge each other respectfully. We learn from each other.
So how do we reach another audience? I don't know the answer. My fb page is full of posts about ME, often ignored by my fb 'friends' but sometimes attracting 'likes'. I see very few people so I don't talk about ME widely. We have tried writing letters to MPs, head of NICE etc., signed petitions. The Daily Mail article will have reached a wider group. Jen Brea's film may reach a slightly different audience......or it may be us who make huge efforts to get out for a special occasion.
We need to change our audience. How? Does anyone have any bright ideas?
"We are too good at being our own audience."
Absolutely true. We respond to each other, exchange views, introduce information that widens the topic and challenge each other respectfully. We learn from each other.
So how do we reach another audience? I don't know the answer. My fb page is full of posts about ME, often ignored by my fb 'friends' but sometimes attracting 'likes'. I see very few people so I don't talk about ME widely. We have tried writing letters to MPs, head of NICE etc., signed petitions. The Daily Mail article will have reached a wider group. Jen Brea's film may reach a slightly different audience......or it may be us who make huge efforts to get out for a special occasion.
We need to change our audience. How? Does anyone have any bright ideas?
Esther12
Senior Member
- Messages
- 13,774
I really have no understanding of what's really expected for research ethics, but the more they attempted to try to explain why ethical approval was not needed, the more they made it seem deeply dodgy. I don't know if that will matter though - it should, right?
I saw that Zoe Mullens from the Lancet is on the COPE board. Surely there should be some people who are truly independent who will look at things like this.
I've got to post a link to Trish Gove's frustrating commentary on CFS from 2011: "When I defended the PACE trial’s design and findings..."
http://www.meassociation.org.uk/201...r-cfsme-british-medical-journal-22-june-2011/
PS: How amazing is it that someone noticed Crawley was using the same REC number multiple times, and that this one was inaapropriate? That is a level of attention to detail that blows my mind. This person deserves some sort of crown.
I saw that Zoe Mullens from the Lancet is on the COPE board. Surely there should be some people who are truly independent who will look at things like this.
I've got to post a link to Trish Gove's frustrating commentary on CFS from 2011: "When I defended the PACE trial’s design and findings..."
http://www.meassociation.org.uk/201...r-cfsme-british-medical-journal-22-june-2011/
PS: How amazing is it that someone noticed Crawley was using the same REC number multiple times, and that this one was inaapropriate? That is a level of attention to detail that blows my mind. This person deserves some sort of crown.
Esther12
Senior Member
- Messages
- 13,774
[I accidentally posted this in one of the pre-existing threads about this. Re-posting here]
I really have no understanding of what's really expected for research ethics, but the more they attempted to try to explain why ethical approval was not needed, the more they made it seem deeply dodgy. I don't know if that will matter though - it should, right?
I saw that Zoe Mullens from the Lancet is on the COPE board. Surely there should be some people who are truly independent who will look at things like this.
I've got to post a link to Trish Gove's frustrating commentary on CFS from 2011: "When I defended the PACE trial’s design and findings..."
http://www.meassociation.org.uk/201...r-cfsme-british-medical-journal-22-june-2011/
PS: How amazing is it that someone noticed Crawley was using the same REC number multiple times, and that this one was inaapropriate? That is a level of attention to detail that blows my mind. This person deserves some sort of crown.
I really have no understanding of what's really expected for research ethics, but the more they attempted to try to explain why ethical approval was not needed, the more they made it seem deeply dodgy. I don't know if that will matter though - it should, right?
I saw that Zoe Mullens from the Lancet is on the COPE board. Surely there should be some people who are truly independent who will look at things like this.
I've got to post a link to Trish Gove's frustrating commentary on CFS from 2011: "When I defended the PACE trial’s design and findings..."
http://www.meassociation.org.uk/201...r-cfsme-british-medical-journal-22-june-2011/
PS: How amazing is it that someone noticed Crawley was using the same REC number multiple times, and that this one was inaapropriate? That is a level of attention to detail that blows my mind. This person deserves some sort of crown.
slysaint
Senior Member
- Messages
- 2,125
should these two threads be merged?
I think any ethical researcher, let alone one with a smidgen of common sense, would realise the safest approach - both for them and their study subjects - would be "If in the slightest doubt, go the ethical review route". Here there should have been no doubt anyway. But I think the mental block that will have got in the way is down to two salient words in the same sentence: Ethical and Review.
Daisymay
Senior Member
- Messages
- 754
Edit - Absolutely, amazing bit of sleuthing, sincere thanks to the investigator and of course to Dave Tuller who has written an excellent piece on this, not an easy job to explain all this!
EC has such an over-developed sense of entitlement. She seems to believe that all the rules and regulations only apply to lesser mortals than herself, and in her case would only hinder her great works - as I'm sure she perceives her endeavours. She would be doing herself and everyone else a big favour if she took up a new career, as an inter-stellar astronaut or something.
slysaint
Senior Member
- Messages
- 2,125
I think that even if they were deemed 'service evaluation studies' re-using the same REC number over several years for at least 9(?) other papers makes a bit of a mockery of the whole REC system.
Somewhere along the line I imagine there was a similar issue with building regs (ie see Grenfell tower disaster) which meant 'automatic rubber stamping' and see where that ended up.........
Not read all of the blog yet, but I think the key question that decides the need for ethical review is:-
Re-using a previously issued "certificate", is a bit like an able-bodied car driver parking their car in a disabled-badge only parking slot, and displaying a friend's disabled-driver sticker in their windscreen ... which is illegal as well as unethical.
- Is the study 100% service evaluation?
Re-using a previously issued "certificate", is a bit like an able-bodied car driver parking their car in a disabled-badge only parking slot, and displaying a friend's disabled-driver sticker in their windscreen ... which is illegal as well as unethical.
Especially where that bureaucratic vulnerability is deliberately exploited by people who see it as a way to subvert the system to their own ends.
I wasn't able to comment on the site, I have real difficulty with the technology so if anyone thinks it would be useful, feel free to make this point there.
I don't think DT or many ME patients get the point about an Attendance officer being present. It made my stomach turn over. Parents in the UK are often threatened with court and prison if their children don't attend school, it is used as a threat to the kids as well.
My grandson has severe anxiety and was unable to cope with secondary school. His form teacher and deputy headmistress were very good with him, though we know know it was futile as the anxiety was masking quite bad autism.
But their efforts were totally undermined by the Attendance Officer and Headmaster who wanted to make a contract with penalties for breaking it, as if he did not WANT to go but simply couldn't. Prison for mum was mentioned which did nothing for his stress levels.
A friend's granddaughter was not so lucky. I think her absences were caused by her mother's sever depression - she was scared to leave her alone, but court cases were used as threats and being sent to a residential special school felt like prison for her as well as the torment of her concern for her mother. These people have really power over the children and mess them up.
If I was meeting EC with an Attendance Officer there I would be too frightened to refuse to join her research which is coercion pure and simple.
(As an aside, my grandson was suicidal because he felt so guilty, being reassured that it was not his fault solved that problem, thank god. Being told by creepy crawly that your ME is all your own fault makes me weep for those children. How evil can you be.)
Mithriel
I don't think DT or many ME patients get the point about an Attendance officer being present. It made my stomach turn over. Parents in the UK are often threatened with court and prison if their children don't attend school, it is used as a threat to the kids as well.
My grandson has severe anxiety and was unable to cope with secondary school. His form teacher and deputy headmistress were very good with him, though we know know it was futile as the anxiety was masking quite bad autism.
But their efforts were totally undermined by the Attendance Officer and Headmaster who wanted to make a contract with penalties for breaking it, as if he did not WANT to go but simply couldn't. Prison for mum was mentioned which did nothing for his stress levels.
A friend's granddaughter was not so lucky. I think her absences were caused by her mother's sever depression - she was scared to leave her alone, but court cases were used as threats and being sent to a residential special school felt like prison for her as well as the torment of her concern for her mother. These people have really power over the children and mess them up.
If I was meeting EC with an Attendance Officer there I would be too frightened to refuse to join her research which is coercion pure and simple.
(As an aside, my grandson was suicidal because he felt so guilty, being reassured that it was not his fault solved that problem, thank god. Being told by creepy crawly that your ME is all your own fault makes me weep for those children. How evil can you be.)
Mithriel
The file on4 programme did not go into enough depth on this. Other parents on forums have had similar experiences. Schools are competitive businesses and one of the key metrics measured for performance is attendance. A non attending child impacts their rating, and ratings really are the bottom line
From the paper, under "Methods":-
Do we have access to a copy of the letter that was sent? Do we know if the parents and children were advised, in the letter or later, that they were participating in a clinical study? Did they have any idea of this at all? Should they have? Should they have been asked for their consent? Is this another Helsinki moment?
The more I get to understand this, the more it beggars belief that this study was deemed exempt from needing its own ethical review. And the fact an extremely well-placed reviewer (stating himself "in my experience as a researcher and one time REC member"), highlighted this flaw, and was ignored! These are vulnerable children/adolescents, and their vulnerable-by-situation parents.
Do we have access to a copy of the letter that was sent? Do we know if the parents and children were advised, in the letter or later, that they were participating in a clinical study? Did they have any idea of this at all? Should they have? Should they have been asked for their consent? Is this another Helsinki moment?
The more I get to understand this, the more it beggars belief that this study was deemed exempt from needing its own ethical review. And the fact an extremely well-placed reviewer (stating himself "in my experience as a researcher and one time REC member"), highlighted this flaw, and was ignored! These are vulnerable children/adolescents, and their vulnerable-by-situation parents.
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