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Post by JJ on Sept 7, 2015 16:51:04 GMT
This thread here asks for women to help with a research project Women's narrative accounts of living with ADHD . PLEASE READ THIS BEFORE PARTICIPATING The request is from someone who doesn't explicitly state they're working for the OU and gives a non - academic gmail address for contact. The requester, Alison Davies, has previously published this , which is shoddy, inaccurate and ill-informed. I don't have time to summarise it all, but it casts doubt about whether ADHD is real or just medicalising and medicating children. The case against is that "ADHD wasn't a recognisable condition 30 years ago", it talks of the "increasing challenges to the medical model", how diagnoses are rising and how Ritalin prescriptions have soared. "It's a major issue", she says "there are half a million children on Ritalin!" A few points she didn't bother to mention were that a condition with all the ADHD symptoms has been documented since 1763, it just wasn't called ADHD. It was originally called "a disease of attention", changed later variously to "minimal brain dysfunction", "defect of moral control" and "hyperkinetic disease of infancy" amongst others. see paper hereShe's right that it wasn't called Attention Deficit Disorder (with or without hyperactivity until DSM III (1980). However, if we're to follow through with her logic that ADHD, then I'm am forced to question the validity of bipolar disorder, as this was called manic depression until DSM III and therefore didn't exist before. Using decades out of date DSM criteria to make a case for today is - well, it's nonsense. Homosexuality used to be classed as a mental illness in the DSM! And the whole "prescriptions have soared since they started treating ADHD" is sensationalist Daily Fail stuff - of course prescriptions and diagnoses have soared since a medication and a disorder have been validated by the international scientific community. Omg, aspirin was discovered 200 odd years ago, but in the 1970's they realised its value in cardiac function - and suddenly there was a huge surge in aspirin prescription - are we to conclude all those potential stroke victims were naughty people who just needed a bit more discipline!! Is anyone questioning whether heart attacks are real!! Dr Mary Horton-Salway is also working on this project and she and Davies have collaborated on ADHD before. I've lost the links now, but her views on ADHD appear skeptical, with incorrect equal weight given to a social origin of ADHD, while failing to mention the robust scientific evidence of it being genetic and biological in origin. Other publications 'those with all the made up illnesses' might want to read include one called 'The ME Bandwagon'. She's also cited in a publication by someone writing about women and ADHD who says ADHD isn't real because she's seen ADHD children and spied that sometimes they were actually able to pay attention - when they were given quality time of course. This was shortlisted for a prize by the BPS. Incidentally, why is there not a facepalm smilie? In summary, I would be VERY VERY wary of participating in this 'research project', I think you'll just be contributing to the body of ill-informed clap trap masquerading as science that actively makes life harder at best and likely a hysterical Daily Fail article at some stage. And that's on top of her not bothering to answer any of the valid concerns / questions raised by our members, nor managing even to provide an academic email contact address.
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Post by Deleted on Sept 7, 2015 18:03:13 GMT
In principle, I don't entirely object to research about the various discourses around conditions like ADHD. I find them an interesting balance to the heavily medicalised models of understanding that prevail. I do have huge issues with researchers who lack openness, integrity and humility when seeking human participants, and I do resent people who take me for a fool. I would love to have a space here for intelligent, respectful conversation with professionals and service users who are critical of mainstream psychiatry. I am critical of psychiatric practice myself in many ways and I want to do my bit to keep Big Ph£rma honest. But lately we do seem to have had a run of professionals who want to speak for us and "do psychology" to us, in an alarmingly similar fashion to the way they seem to feel that psychiatry is being done to us. I don't get it. Thanks, JJ for bringing this one to our attention.
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Post by JJ on Sept 7, 2015 23:16:43 GMT
I do object to research like this.
The research is based on the premise that ADHD might not be real and that is categorically untrue. ADHD is diagnosed in the same way as almost every other psychiatric or neurological condition, by clinical assessment rather than a blood test, yet it remains contentious, which is to our detriment.
Current evidence does show physiological / functional differences, it is found in roughly the same prevalence all over the world, including under-developed countries. The research has been done, the question is answered, the evidence is there.
Nothing can be gained from continuing to question its validity. There is a wealth of evidence of the detrimental effects of undiagnosed ADHD, and all the while pernicious Daily Fail journalists or non-entity researchers trying to get a glimmer of recognition by jumping on the "look at all the drugged up children, who's hearing their voices" bandwagon, the "debate" is fuelled and people in the depths of despair with car crash lives round the country are being sent away by their GP and told there's no services and it doesn't exist. (That was the gist of a quote from her article i linked above).
It's poor academic, ethical and scientific method to be presenting both sides of "the argument" with equal weight and no qualification. Shame on the OU for endorsing this.
That's like me writing an article now about the MMR vaccine, saying it's still controversial, on the one hand with some saying it doesn't cause autism, but others say it does. Technically it's true there are 2 sides to this, but actually there's a wealth of robust evidence as agreed by the consensus international scientific community that it doesn't cause autism, and a handful of conspiracy theorists clutching bottles of water labelled as a cure for cancer c/o homeopaths r us on the other side. The 2 groups aren't equal, their opinions aren't equally worthy - not scientifically.
Or I could write that it's still controversial how / when the world was created, on the one hand some say it's 4.6 billion years old and started with the Big Bang, on the other some say it's 6000 years old and was created in 6 days. Technically it's true, but presenting this as the debate, without qualification, under the name of doctoral research at a respected university is wrong. Just because someone thinks something, it doesn't make it right, or worthy of mention on an equal footing.
I'm not against research into ADHD that isn't purely biological / pharmacological. I'm not against research into social elements of ADHD. I think these should be explored. I think the stigma needs to be looked at, I think the lack of social support and family intervention needs to be looked at. I think the harm caused by ignorance needs to be looked at. And I think psychological therapies should be looked at. And much much more, and very importantly how ADHD affects women - this is an excellent area because it's so under-studied.
But this should all be done from the starting point that it does exist, and we know this because the evidence is there. That starting point needs to be based on basic knowledge about the condition - the person who said it didn't exist because adhders can concentrate sometimes had clearly only read a Katie Hopkins tweet as background research, this isn't good enough. Ffs this woman, 3 other PhD researchers and the lead name (who I've not looked but assume is a professor) didn't even know we have difficulty using the phone. It's doesn't even take a huge leap of logic to consider that someone with difficulty sustaining attention and a disorganised mind might find following an hour's conversation on the phone problematic.
If you're going to comment on medications then you need to be mindful of the fact that having Dr in front of your name makes people think you're a medical doctor, so they believe you, so you have a responsibility to use facts from reputable sources - maybe if you're commenting on psychopharmacological issues, quote from the British Association of Psychopharmacologists ? An out-there suggestion using experts maybe for someone trying to whip up a profile-raising frenzy?
I'm sick to death of all the harm caused by this kind of bollocks by people who haven't got a clue about what it's actually like to have ADHD and all the non-headline hysteria stuff that goes with it, like the depression, anxiety, relationship problems, time perception, sleep disorders, job problems, related neurological / neurodevelopmental / psychiatric conditions.
This is a 'how fucking dare they' rant. How fucking dare you contribute to all the shit I deal with on a day to day basis. Do you have any idea how much easier my life and that of my children's would be if people actually just knew and accepted the EXISTING facts? Research my disorder by all means, I truly welcome that and I'll speak to you all day long, but don't treat me and people with ADHD like your research playthings, don't be flippant about it, don't be disrespectful, read up the existing research before you start.
Right, that's off my chest now.... (None of that rant against you P, I know exactly what you were saying and I agree with you, but that all just came out xx)
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Post by Deleted on Sept 8, 2015 1:18:00 GMT
Well said, JJ
I emailed Prof Paul Stenner, the research lead for project and he sent me a curt 1 line response saying he would forward my concern to Dr O'Dell the "principle investigator" [sic].
He offered no thanks for my email, no apology for the problem, and made no effort even to spellcheck his single line response.
Interestingly though, Prof Stenner claims a research interest in exploring liminal experiences and so, in the interest of progress, I'd like to cordially invite him over to share a moment or two with us, and perhaps allow us to steer him towards his next paradigm shift.
Because when you and your staff bring your research projects into our internet forum, Prof Stenner, it is important to us that you try to respect our rules and conventions. You are the one whose name is on the British Academy/Leverhulme research funding project and it wasn't OK for you to be be dismissive of me when I approached you with a legitimate concern.
I'm guessing that, within your academic community, you may consider yourself to to be above corresponding with mere research participants. But this forum lies far outside the perimeter of your ivory tower. And if your colleagues want to use our experiences to help further their career interests, then I suggest you might all want to learn how to meet us on an equal footing, as human beings with voices every bit as important as yours.
At the moment, it appears that there are some unresolved philosophical differences standing between your research associates and our willingness to engage with you as human research participants. If you still want to actualise the potential in this community, Prof Stenner, then it's time tor some PMA.
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Post by Deleted on Sept 9, 2015 13:06:42 GMT
A quick update (posted also on the main thread) to say that I have received an acknowledgement of my complaint and an assurance that the matter will be investigated by the Director of Research at the OU. They acknowledged both the concerns around research conduct and data security, so I feel happier that the concerns have finally been heard by someone with authority and a sense of responsibility.
I think we can reasonably expect not to hear more from the individuals involved at this stage, as they will probably be subject to internal requirements to "say nowt", and that's fair enough.
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Post by flip on Sept 30, 2015 16:48:18 GMT
ahh, well I read the request thread and expressed an interest before reading this. I've just had a reply asking if it was ok to forward my details to the researchers...not sure how to proceed
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Post by Deleted on Oct 9, 2015 6:20:34 GMT
I haven't heard any more from the OU in the month since my complaint was acknowledged. I think it is completely up to you whether to participate, flip. My overall feeling is that the research process has been utterly disrespectful so far, and at this stage I would be willing to have a discussion with the researchers about the nature of my concerns, but I would not trust them with my personal life story. I will be interested to see what comes of the project and will raise my residual concerns about the research process in a more public arena then, if they are not addressed in the interim. I gave a quick response in the original thread so that the researchers might see it (if they ever check the thread again). The concerns are valid and although they may have already conducted the interviews, it might be worth keeping an eye on. I have had experience with ethical committees and know how issues are supposed to be addressed. This research gives me the distinct impression that the researchers have not only been less than open to the potential participants, but possibly also to the ethical committee. That is just an intuition, but it is based on knowledge of science, ethics and controversial research. If I had more time I would do a bit more work for you, but unfortunately I'm in the middle of a move to London on top of my own research. However, if there's something I can do, please feel free to ask.
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Post by Deleted on Oct 9, 2015 9:18:51 GMT
I've also had dealings with ethics committees. In reality, I think they simply don't and can't consider all the issues that might come up and, in the UK that's why we have developed the Concordat to Support Research Integrity, which sets out expectations at all levels for the conduct of researchers, to remain comitted to ethical working practices as the project progresses. I don't think there is any excuse for the researchers to have ignored our questions and I actually would be interested to see the ethics submission for the project, @dutch. Thanks for prompting that thought. I wonder if that is something that would be released under the Freedom of Information Act? Interestingly, it seems that Alison Davies is also a therapist who apparently accepts the construct of ADHD when touting for therapy clients, despite her concerns over the construct when operating as a researcher: www.counselling-directory.org.uk/counsellors/alison-daviesI wonder how "private and non-judgemental" ADHD counselling works out, when the therapist is making very public statements about what she really thinks about the construct of ADHD...... Anyone know a good snake oil supplier?
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Post by Deleted on Oct 10, 2015 9:06:26 GMT
I've also had dealings with ethics committees. In reality, I think they simply don't and can't consider all the issues that might come up and, in the UK that's why we have developed the Concordat to Support Research Integrity, which sets out expectations at all levels for the conduct of researchers, to remain comitted to ethical working practices as the project progresses. I don't think there is any excuse for the researchers to have ignored our questions and I actually would be interested to see the ethics submission for the project, @dutch. Thanks for prompting that thought. I wonder if that is something that would be released under the Freedom of Information Act? True, it is impossible to consider everything. I have however had several PhD colleagues work with questionnaires, interviews and public engagement, and the first thing discussed was always how to structure the communication. Those who used the internet were always required to create profiles, keep the lines of communication open and the threshold to contact them as low as possible (no Ivory Tower nonsense). Not doing that introduces a bias into the research because the researcher effectively ignores undesirable aspects/results. I have no idea if the ethics permissions are accessible. However, not addressing concerns raised on an internet forum that was specifically targeted by the researchers is a pretty serious matter. It is in fact unethical and so there should be grounds to follow this up.
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