JoanDublin
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Petition: Opposing MEGA
- Thread starter AndyPR
- Start date
AndyPR
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ETA: Nope, got that completely wrong, ignore me.
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JoanDublin
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Maybe Im going blind, but I cant see it. I can see the STOP Get ones
lilpink said: ↑
All very Orwellian I’m afraid.
Perhaps the wisest amongst us don’t subscribe to Facebook. But putting that aside, as I understand it OMEGA is not against the principle of sharing data on a massive scale but questions the trustworthiness of those who are in charge of the MEGA project and how they plan to use, and MISUSE, the data patients provide.
Eafw said
“We can, as much as we are able, expect any decent scientist to work within current ethical data guidelines and laws - and we do need to have clear statements on data protection, conflicts of interest etc - but this idea that the system will be overturned or the entire BPS network will collapse overnight if a bunch of us sign a petition saying we want rid of Crawley - that is ridiculously, hopelessly naive.”
IMO Crawley and the White/Wessely School have demonstrated that they are quite happy to
· run roughshod over data protection,
· fail to declare conflicts of interests,
· misrepresent the results from their research
· block attempts to reveal the truth
And I have heard on the grapevine that Crawley may have taken and used patient data for the NOD without informed consent so also likely flouting ethical data guidelines and laws since the NOD has now been used for their research. They have proved that they are not ‘decent scientists’, many would argue that they should not be called scientists at all. That is why we want rid of Crawley, and all BPS researcher involvement and then I’m sure patients would be perfectly happy to risk sharing their data with the wider world. Who’s being naïve?
All very Orwellian I’m afraid.
Perhaps the wisest amongst us don’t subscribe to Facebook. But putting that aside, as I understand it OMEGA is not against the principle of sharing data on a massive scale but questions the trustworthiness of those who are in charge of the MEGA project and how they plan to use, and MISUSE, the data patients provide.
Eafw said
“We can, as much as we are able, expect any decent scientist to work within current ethical data guidelines and laws - and we do need to have clear statements on data protection, conflicts of interest etc - but this idea that the system will be overturned or the entire BPS network will collapse overnight if a bunch of us sign a petition saying we want rid of Crawley - that is ridiculously, hopelessly naive.”
IMO Crawley and the White/Wessely School have demonstrated that they are quite happy to
· run roughshod over data protection,
· fail to declare conflicts of interests,
· misrepresent the results from their research
· block attempts to reveal the truth
And I have heard on the grapevine that Crawley may have taken and used patient data for the NOD without informed consent so also likely flouting ethical data guidelines and laws since the NOD has now been used for their research. They have proved that they are not ‘decent scientists’, many would argue that they should not be called scientists at all. That is why we want rid of Crawley, and all BPS researcher involvement and then I’m sure patients would be perfectly happy to risk sharing their data with the wider world. Who’s being naïve?
AndyPR
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You're absolutely right. I obviously just had a complete brain fart, sorry
trishrhymes
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What's the NOD? And what data has she used?
The implication wasn't to conflate the two (Morris with a single 's' and Morriss with a double 's') ..but quite clearly to recognise that Prof David Ford has an interest in E-records research when we know the Nottingham Tool is being used to filter patients deemed to have MUPS dx (in England). In no way did I imply what you seem to have think I've implied, ie that the two 'Morrises' are the same person.
JoanDublin
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You're absolutely right. I obviously just had a complete brain fart, sorry
No bother. Tis many a brain fart I have myself
The NOD is the National Outcomes Database for CFS/ME patients – Esther Crawley’s baby, which she has now handed over to Simon Collin at Bristol. My knowledge is sketchy on this but I do know that they have been collecting data on patients for many many years now from CFS/ME clinics all over the country and have data on over 10,000 adults and children stored in the NOD. Esther Crawley is VERY proud of her achievement! They have been using the data to produce papers which they relate to PACE findings as well as looking at other parameters. They would claim that the data was routinely collected at the CFS/ME clinics and that the whole thing can be classed as a ‘service evaluation’ so patient consent wasn’t required. However, as I understand it, the patients involved were asked to fill in many additional and time-consuming questionnaires to normal at the beginning of ‘treatment’ and again after 12 months.
What constitutes a ‘service evaluation’ is fairly well-defined under HRA rules – generally information gathered as normal part of the service provided, usually on a local basis etc. The establishment of a huge national database would be expected to be subject to ‘research rules’ because of its size and scope, and because data would clearly be passed away from the control of the normal healthcare team. Research rules demand that proper informed patient consent is obtained. However I have heard that a patient referred to the Frenchay service in Bristol (who didn’t even have an ME diagnosis at the time) was sent many NOD questionnaires (the usual suspects quite similar to the PACE questionnaires) which they were asked to fill in and take to their first appointment in order to ‘save time’ at their appointment. There was no explanation as to how the information would be used or how it would be stored, no mention of the NOD at this time and it was only mentioned in passing on the letter sent out to their home with the year one questionnaires. I think this patient may be considering taking this matter to the Health Research Authority, if they do it will be interesting to see what transpires.
Cinders66
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So a year after announcement there's not enough protocol decision made for a preliminary application yet?
Yet MEA are still asking people on Facebook page to show support via petition when you might not even endorse it yet?
It's clear Esther Crawley's role is not going to be mentioned here, discussed , let alone challenged by the CMRC charities so I guess we can assume that patient objection will be over ruled. So it mainly comes down to criteria , recruitment and selection?
batteredoldbook
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I think the pretense of normality is a dangerous thing.
In reality we have a reasonably expressed doubt that UK medical research is following the scientific method. We have a UK CFS/ME research collaborative that won't discuss the biggest bit of UK CFS/ME research. We have M.E charities that block and shun M.E patients. We have M.E advocates who threaten and are abusive towards people with M.E and their doctors. And, finally, we have a community of physicians and patients who tolerate this state of affairs. Many support and play a part within it. Others are indifferent or seek to blame a handful of hate figures. I suggest this is not a normal situation. This is fiddling while Rome burns.
MEGA is something we might try if things were "ok". Things are not ok. Ok?
In reality we have a reasonably expressed doubt that UK medical research is following the scientific method. We have a UK CFS/ME research collaborative that won't discuss the biggest bit of UK CFS/ME research. We have M.E charities that block and shun M.E patients. We have M.E advocates who threaten and are abusive towards people with M.E and their doctors. And, finally, we have a community of physicians and patients who tolerate this state of affairs. Many support and play a part within it. Others are indifferent or seek to blame a handful of hate figures. I suggest this is not a normal situation. This is fiddling while Rome burns.
MEGA is something we might try if things were "ok". Things are not ok. Ok?
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Snowdrop
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Is it possible to give NOD a closer look? ie How is data collected what is being said about the data in terms of findings?
Snowdrop
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I notice @batteredoldbook 's earlier suggestion regarding having researchers sign a statement to the effect that they understand and agree that the evidence for CBT/GET as treatment is insufficient to warrant support for those treatments has been ignored. If researchers can be asked to sign agreements to not harass and such why not this?
It's certainly a fast road to getting to the nub of things.
I know that the UK establishment has made no such move but as so called 'experts' in ME they should be at a knowledge level where they have read and considered the research and formed an opinion on the quality, no?
ETA: I don't expect that removing EC and other dodgy people from the study is viable.
This is why I suggested that MEGA should just be cancelled. The risk of contamination is too high.
It's certainly a fast road to getting to the nub of things.
I know that the UK establishment has made no such move but as so called 'experts' in ME they should be at a knowledge level where they have read and considered the research and formed an opinion on the quality, no?
ETA: I don't expect that removing EC and other dodgy people from the study is viable.
This is why I suggested that MEGA should just be cancelled. The risk of contamination is too high.
Esther12
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Yeah, I am worried about normalising people like Crawley, and this being presented as patient acceptance of her work and how she has treated us.
I had been supportive of the CMRC, but the more we learn about it the more I think that it could be a mistake for us politically.
As AndyPR has already suggested, I think many of the genuine ME/CFS cases are rapidly deterred, post-diagnosis, from frequent visits to their GP as a consequence of the unique nature of the experience their particular illness gives them. The realisation, on the part of many genuine ME/CFS patients, that:
a). their GP probably doesn't accept that there is anything physically wrong with them;
b). there is nothing their GP can do to help them anyway once other medical problems have been ruled out;
c). they are too ill, or cannot justify the energy expenditure that would be required, to attend their GP's surgery;
functions very effectively as a triple whammy of deterrents militating against the likelihood that genuine ME/CFS sufferers will darken their GP's door very often - possibly in inverse proportion, in fact, to the severity of their physical impairment.
Meanwhile, the phoney, hypochondriacal ME/CFS patients keep booking regular appointments at their doctor's, ensuring that the minds of primary care practitioners remain even more skewed than they otherwise would have been (if the genuine patients showed up more often) towards the not unreasonable supposition that ME/CFS may just be hypochondria by another name.
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batteredoldbook
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I don't support the application of singular blame to EC, PW, SW etc. I have tried to be clear (previous) that issue here is right across both medical and patient communities.
Every doctor and patient needs to act right away to halt British Medicine's fall from grace. Every patient and doctor needs to act now to challenge mistreatment and abuse, most especially when it arises from within their own community.
---------------------------
I think the pretense of normality is a dangerous thing.
In reality we have a reasonably expressed doubt that UK medical research is following the scientific method. We have a UK CFS/ME research collaborative that won't discuss the biggest bit of UK CFS/ME research. We have M.E charities that block and shun M.E patients. We have M.E advocates who threaten and are abusive towards people with M.E and their doctors. And, finally, we have a community of physicians and patients who tolerate this state of affairs. Many support and play a part within it. Others are indifferent or seek to blame a handful of hate figures. I suggest this is not a normal situation. This is fiddling while Rome burns.
MEGA is something we might try if things were "ok". Things are not ok. Ok?
Every doctor and patient needs to act right away to halt British Medicine's fall from grace. Every patient and doctor needs to act now to challenge mistreatment and abuse, most especially when it arises from within their own community.
---------------------------
I think the pretense of normality is a dangerous thing.
In reality we have a reasonably expressed doubt that UK medical research is following the scientific method. We have a UK CFS/ME research collaborative that won't discuss the biggest bit of UK CFS/ME research. We have M.E charities that block and shun M.E patients. We have M.E advocates who threaten and are abusive towards people with M.E and their doctors. And, finally, we have a community of physicians and patients who tolerate this state of affairs. Many support and play a part within it. Others are indifferent or seek to blame a handful of hate figures. I suggest this is not a normal situation. This is fiddling while Rome burns.
MEGA is something we might try if things were "ok". Things are not ok. Ok?
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BurnA
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I think grapevine talk should stay on the grapevine.
Jo Best
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Jo Best
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batteredoldbook
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The scientific method, when run forwards, is about asking fair questions and accepting sometimes very difficult answers. It is a way of keeping us from fooling ourselves and each other. Conversely, the very same methodology, when run backwards, selects evidence to justify preconceptions. It tells us what we want to hear, rather than what is true.
Funding turns the crank handle on the scientific method and nine million pounds would surely turn the crank a lot of times. Before "MEGA" is funded, we would all be well advised to make certain that we are running the scientific method in a direction that truly benefits both medical science and people with M.E.
Science is powerful because it is the result of decades of rigor, honesty and integrity. These qualities are now desperately needed within individuals. Each of us must make the choice between seeking the truth or believing whatever happens to be convenient.
I think there is no-one here who cannot choose to make a contribution to the betterment of our medical and M.E communities.
@batteredoldbook
00:23 29/10/2016
Funding turns the crank handle on the scientific method and nine million pounds would surely turn the crank a lot of times. Before "MEGA" is funded, we would all be well advised to make certain that we are running the scientific method in a direction that truly benefits both medical science and people with M.E.
Science is powerful because it is the result of decades of rigor, honesty and integrity. These qualities are now desperately needed within individuals. Each of us must make the choice between seeking the truth or believing whatever happens to be convenient.
I think there is no-one here who cannot choose to make a contribution to the betterment of our medical and M.E communities.
@batteredoldbook
00:23 29/10/2016