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Lightning Process study in Norway - Given Ethics Approval February 2022
- Thread starter Kalliope
- Start date
This defamatory shit will go on until they are stopped. It is why I have long said there needs to be a serious high-level formal public inquiry into these claims. Rip the lid off it and see what is really there. Make our accusers put up or shut up.
I believe the patient community has nothing to fear from a fair hearing. I also believe that those repeatedly defaming us in this appalling cowardly manner do have a lot to fear, and I predict they will oppose such an inquiry vigorously.
The defamers need to be publicly confronted with their shit every time they start flinging it around the joint.
Demand they justify it. Demand they name the accused and give specifics of the offences. Or withdraw and apologise.
I believe the patient community has nothing to fear from a fair hearing. I also believe that those repeatedly defaming us in this appalling cowardly manner do have a lot to fear, and I predict they will oppose such an inquiry vigorously.
The defamers need to be publicly confronted with their shit every time they start flinging it around the joint.
Demand they justify it. Demand they name the accused and give specifics of the offences. Or withdraw and apologise.
I think it kinda goes without saying that we don't have anything to fear from it. Even if a number of people actually threatened researchers it's good to have that on record so they can share the blame for what they did instead of the community at large. This wishy-washy no not everyone threatened me still pushes the same narrative.
I also wonder if her turn of phrase here has something to do with Steinkopf actually double-checking with the Oslo police at the time about that conference. She then found out that the Oslo police didn't warn the scientists to seek protection, there hadn't even be any contact between the two parties. Is she now noticing how easily lies like that are punctured?
rvallee
Senior Member (Voting Rights)
We already know the answer to this. They said it many times in the past: the "activists" are the people who debunk their research and raise alarm at the awful combination of harm and negligence. As long as people are silent, or only sign petitions, they can count as good patients. It's anyone who dares get in their way, it's not even a secret anymore. Basically it's us.
One recent example, and I say recent because over the years they said the same, dates back decades:
This was after the accusations of harassment had been debunked, and they switched to accusations of "trolling", and walked it back in public mere days later.Michael Sharpe said:
rvallee
Senior Member (Voting Rights)
That's why we never get a fair hearing. They always lose when outside their secret deliberations in the bubble of medicine.
The NICE roundtable made it clear, hence why they are still working behind the scenes, trying to get support for their machinations with the cheap editorial they will soon publish. They can't win in a fair fight, they got their ass beat down by trying to lie to a tribunal, where you can't just make stuff up, so they avoid it entirely. Likely why Sharpe was so angry at Monaghan's efforts: they only operate in lies and secrecy, transparency is lethal to this ideology.
rvallee
Senior Member (Voting Rights)
In the end, this is why they do what they do: it works. As long as the issue is politicized, lies work. It doesn't even matter that the premise was debunked, dude turned off his replies and wouldn't care that it's not true anyway, these bullies simply never engage.
The BS Reuters article about "trolling" being cited by dude who also can't deal with the fact that this affects real people in real life. To people like this our lives are just a game, they're the main character and we're just NPCs in a game.
The BS Reuters article about "trolling" being cited by dude who also can't deal with the fact that this affects real people in real life. To people like this our lives are just a game, they're the main character and we're just NPCs in a game.
Charles B.
Senior Member (Voting Rights)
I find him sinister, and it disheartens me to see such little pushback from the Boston clinicians working in this space. There is an OMF branch at Harvard, and earnest clinicians producing noteworthy literature. If patients rebut his nonsense, it will just play into the militant activist narrative. We need clinicians/researchers willing to go to the mat for us. Preferably, these would be respected figures in his own backyard.
Posts about Flottorp's appearance on Dagsnytt 18 has been moved from the Norway: Opinion piece on "Facts and myths about ME" by Reme, Flottorp and Wyller thread.
Kalliope
Senior Member (Voting Rights)
A weird article today in an newspaper for academia and research.
Professor in psychology Silje Reme complains of how absurd it is that people are using their right to access for information regarding their study on Lightning Process.
Research director at the Norwegian Institute for Public Health, Signe Flottorp, who recently was exposed, via the right of access to information, to have lobbied for said study to a member of the National Committee for Medical and Health research Ethics, agrees with the Professor.
Another professor in psychology who is involved in the study says even the Prime Minister's Office would have found this sensational.
Khrono: Innsynsstorm mot ME-forskere: - Helt absurd
google translation: Storm of Freedom of Information-requests against ME researchers: - Completely absurd
Quote from Gry Røste, director of health and care in Lørenskog municipality:
- They use it to try to stop research. They have tried to find that there are commercial interests, that someone may become ill from the treatment.
Professor in psychology Silje Reme complains of how absurd it is that people are using their right to access for information regarding their study on Lightning Process.
Research director at the Norwegian Institute for Public Health, Signe Flottorp, who recently was exposed, via the right of access to information, to have lobbied for said study to a member of the National Committee for Medical and Health research Ethics, agrees with the Professor.
Another professor in psychology who is involved in the study says even the Prime Minister's Office would have found this sensational.
Khrono: Innsynsstorm mot ME-forskere: - Helt absurd
google translation: Storm of Freedom of Information-requests against ME researchers: - Completely absurd
Quote from Gry Røste, director of health and care in Lørenskog municipality:
- They use it to try to stop research. They have tried to find that there are commercial interests, that someone may become ill from the treatment.
Kalliope
Senior Member (Voting Rights)
Professor Reme was btw the same who recently was out in the media saying ME patients were out to get them, that they couldn't publicly announce an ME-seminar she organised, and that the seminar had to have the police on standby. Patient advocate Nina E. Steinkopf contacted the police and they said there were no records of them being on standby for the seminar.
rvallee
Senior Member (Voting Rights)
It's seriously baffling that they behave like unprofessional amoral jerks for the stupid lightning process, of all things, when they have CBT and basically any other dumb thing they can think of. It literally doesn't even matter, this could be a finger-painting program for all that it matters, the outcome is the exact same: nothing, nothing at all. It could even be replaced with homeopathy and nothing would change.
Although really kudos for being so delusional that you can spittle rage about people... exercising their rights, even saying so plainly. It really takes minimal self-awareness to understand you are wrong when you get to that point, but they simply have zero respect for us as human beings. It's really not that these people don't belong in medicine, it's that medicine is made up of people like this, the system enables and encourages unhinged political behavior in the pursuit of pseudoscience, just because they hate us so damn much.
We really need a medicine for the people, by the people. This isn't it. This is a top-down authoritarian model that never really functioned as intended anyway, it's just that it was so routine to discard people as not worth helping that the practice even continues to this day. This system doesn't work for us. It explicitly works against us.
Although really kudos for being so delusional that you can spittle rage about people... exercising their rights, even saying so plainly. It really takes minimal self-awareness to understand you are wrong when you get to that point, but they simply have zero respect for us as human beings. It's really not that these people don't belong in medicine, it's that medicine is made up of people like this, the system enables and encourages unhinged political behavior in the pursuit of pseudoscience, just because they hate us so damn much.
We really need a medicine for the people, by the people. This isn't it. This is a top-down authoritarian model that never really functioned as intended anyway, it's just that it was so routine to discard people as not worth helping that the practice even continues to this day. This system doesn't work for us. It explicitly works against us.
Isn’t using freedom of information requests one of the things Crawley etc were arguing amounted to harassment.
Jonathan Edwards
Senior Member (Voting Rights)
It seemed to be the main meme with all that lot - White etc. until Alem's success when they went a bit quieter.
Kalliope
Senior Member (Voting Rights)
Patient advocate Nina E. Steinkopf has written an excellent reply to the article which just got published on the newspaper's website:
Den stadige svertingen av ME-syke
google translation: The constant slandering of ME sufferers
quote:
It is not without reason that ME patients want to know more about the LP project Khrono mentions. Last autumn, LP researcher Silje Reme told that they had police prepared at a secret ME seminar. In response to a request for access, the police stated that this was not registered in their relevant systems. They also stated that Enhet Vest, which is responsible for Blindern and Majorstua, has had no contact with the organiser .
Access requests have revealed the lobbying that led to public support and funds, revelations about FHI research manager Signe Flottorp's attempts to influence decision-makers in NEM via private channels, her reference to patients and other researchers as "activists " and that she tried to pressure NAFKAM to to withdraw and regret the safety assessment of LP.
Access requests have revealed that the researchers, in applying for ethical approval, refer to the patient group in a negative and stigmatizing way. It also turns out that the organization which will contribute with "user participation" was founded by, among others, the fellow himself - even if the head of the organization has denied it .
That Lørenskog should be the host municipality for the project has not been up for political consideration. It was municipal director Gry Røste himself who decided it, after being contacted by the scholarship holder. This information came from access requests.
Den stadige svertingen av ME-syke
google translation: The constant slandering of ME sufferers
quote:
It is not without reason that ME patients want to know more about the LP project Khrono mentions. Last autumn, LP researcher Silje Reme told that they had police prepared at a secret ME seminar. In response to a request for access, the police stated that this was not registered in their relevant systems. They also stated that Enhet Vest, which is responsible for Blindern and Majorstua, has had no contact with the organiser .
Access requests have revealed the lobbying that led to public support and funds, revelations about FHI research manager Signe Flottorp's attempts to influence decision-makers in NEM via private channels, her reference to patients and other researchers as "activists " and that she tried to pressure NAFKAM to to withdraw and regret the safety assessment of LP.
Access requests have revealed that the researchers, in applying for ethical approval, refer to the patient group in a negative and stigmatizing way. It also turns out that the organization which will contribute with "user participation" was founded by, among others, the fellow himself - even if the head of the organization has denied it .
That Lørenskog should be the host municipality for the project has not been up for political consideration. It was municipal director Gry Røste himself who decided it, after being contacted by the scholarship holder. This information came from access requests.
I'm probably duplicating here?
Well it did lead to the disclosure of the PACE data --- court judgement requiring disclosure -- or optional criminal sanction for failing to disclose ---
so FOI might indeed have been unwelcome ---
I'd suggest that the pending criminal sanction may have swayed things ---
Nothing like the thought of an overnight stay, for contempt of court, or longer, to focus the mind ---
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rvallee
Senior Member (Voting Rights)
That, and other normal things people have every right to do. It was always the fact that we do not consent to harmful medical care, and they could not more clearly show that they don't care about consent, let alone informed consent, than making a decades-long campaign of demonization based on, by their own admission, about having to deal with those complaints, rather than force their will onto us.
All those things are proper. Some of those things are rights. The main thing here is informed consent. They don't care, they can freely abuse their authority, it even gives them awards and applaud. Which, oof, says a lot about why things are so broken. You don't even need an authoritarian police state to get people to do harm to others, they just need the social validation that it's OK, more specifically the validation of their profession, which they have.
Anybody who tries to avoid transparency and accountability is automatically suspect, and the more vicious and ridiculous their attempts to avoid it and blame those pointing out all this, the more likely it is they have something genuinely nasty to hide.
Nobody is trying to stop science being done. That is a bald-faced lie. It is poor science, or worse, that we object to, and always will.
We want good quality science. They clearly don't. That is now beyond dispute.
They are so used to getting away with this appallingly substandard anti-science that any justified demands for proper methodological and ethical standards comes as a profound shock and insult to them.
They have a stark choice: Lift their game. Or get out of it.
And they have nobody but themselves to blame for that situation.
Nobody is trying to stop science being done. That is a bald-faced lie. It is poor science, or worse, that we object to, and always will.
We want good quality science. They clearly don't. That is now beyond dispute.
They are so used to getting away with this appallingly substandard anti-science that any justified demands for proper methodological and ethical standards comes as a profound shock and insult to them.
They have a stark choice: Lift their game. Or get out of it.
And they have nobody but themselves to blame for that situation.
RedFox
Senior Member (Voting Rights)
Yeah I'm pretty darn tired of BPS doctors doing this cycle of doing a bad study, claiming victory, trying to convince everyone else, and attracting well-deserved criticism. They will never do a study rigorous enough that if it fails, they will admit failure, and if it succeeds, we will be swayed.
rvallee
Senior Member (Voting Rights)
And we know this for a fact. That was supposed to be PACE. Except it doesn't matter because the entire profession is conditioned not to care about us, to disbelieve everything we say. Even when we debunk pseudoscience in ways that they fully recognize in studies that they don't like.
In the end this was always politics: they can impose their will on us, coercively and through lying. That they still can is absurd, but this is already the worst scandal in the history of medicine, it's really all the same failure going back, what's millions more? Long Covid has really made it clear: they do not give a damn, don't understand any of it and it's fine by them because they can do whatever they want to us. It's just that patients don't have rights in medicine, but that's a legal issue and that's still all politics.
Just skimmed it but FOI is in the UK --- so possibly FOI is of EU origin and therefore, Norway may need to have FOI since it's part of the EU -- maybe worth checking that out. If there's e.g. an EU link then Norway can't refuse to implement FOI.
If researchers are accessing public funds and it appears they are* then public disclosure, of the details of the study, is entirely appropriate - public money for public good ---not this!
*"Research director at the Norwegian Institute for Public Health, Signe Flottorp" is involved and her post is publicly funded - correct?
"Another professor in psychology who is involved in the study says even the Prime Minister's Office would have found this sensational."
Yip go for the publicly accountable/elected --- be "helpful" and point out on social media (i.e. publicly) that this is politically damaging --- so best that the Prime Minister's Office withdraw support i.e. rather than deal with the angry electorate next election!
Also, the research will be usual shit so it won't be blinded or assessed objectively [actimetry - e.g. FitBit] --- waste of public money if it's unblinded with no objective assessment.