Mithriel
Senior Member (Voting Rights)
Eminence based medicine.
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Lightning Process study in Norway - Given Ethics Approval February 2022
- Thread starter Kalliope
- Start date
Eminence based medicine.
rvallee
Senior Member (Voting Rights)
"This is scientific because scientists are involved" is just about the level of intellectual discourse I expect here.
Especially with the whining about how we don't understand how clinical trials work when they are explicitly intending to cheat and not bothering with any good practices. These people are beyond parody.
I do wonder what is happening in Scandinavia, though. It's like medicine is regressing massively in this area, adopting all sorts of woo. One thing is clear from Sweden is that they are still pursuing herd immunity and any mention of Long Covid is thus forbidden. Physicians playing politics. Oi. The whole premise of having an expert profession breaks down when experts are derelict in their duties. This is terrible for the future, at a time when truth is more important than ever.
Especially with the whining about how we don't understand how clinical trials work when they are explicitly intending to cheat and not bothering with any good practices. These people are beyond parody.
I do wonder what is happening in Scandinavia, though. It's like medicine is regressing massively in this area, adopting all sorts of woo. One thing is clear from Sweden is that they are still pursuing herd immunity and any mention of Long Covid is thus forbidden. Physicians playing politics. Oi. The whole premise of having an expert profession breaks down when experts are derelict in their duties. This is terrible for the future, at a time when truth is more important than ever.
rainy
Senior Member (Voting Rights)
People are resistant to subject patients to LP because it is a really weird, nonsensical self help course, because the practitioners have no compentence for treating sick people, the practitionners are abusive to the patients (even children), because patients report becoming suicidal because of LP, they report becoming permanently sicker, many saying they feel guilty for their illness after LP and keep pushing themselves even though they get worse.
These arguments are not hard to understand. Some might disagree with the reasoning, they might think its great to subject patients to something so stupid, that might make them suicidal and permanently sicker. But it’s just not hard to understand why there’s resistance to this.
That the little science done on the LP is very poor should not be hard to understand either, but that even the arguments above, that directly concern patient safety, can be dismissed so easily I find really frightening.
rainy
Senior Member (Voting Rights)
Same. It was impossible for me to take myself seriously when saying things like "I'm a genius" and "I'm as energic as a gazelle running over the savannah" (examples from the instrucutional CD we were given).
I know I'm not a genius and I think that self awareness is a good thing
Yeah I felt the same
Similar with mickel therapy
They kept talking about emotions and that’s fair enough but I find people who are really emotional to be too much, they wanted me to get emotional all the time and I felt embarrassed to be that way, it wasn’t natural for me, I felt really fake and it was so exhausting it made my fatigue worse, bizzare stuff
If I was honest with my emotions I’d have told them this is a load of shit but it was an old woman who seemed overly sensitive and I held back, it was horrible
I remember them giving me a diagram which said something like it’s not depression it’s de - pressed emotion and it’s not emotion it’s energy-in-motion, I needed a lie down by the time I’d finished
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Kalliope
Senior Member (Voting Rights)
Sigmund Olafsen has written a reply. His first opinion piece in this exchange was also published in a newspaper for universities in addition to the news site on research.
Hvorfor skal NTNU forske på noe som kan være skadelig?
google translation: Why should NTNU research something that can be harmful?
To summarize:
- Blaker does not mention patient safety. This is very disturbing when we know that it has gone wrong many times with LP.
- It is precisely the fact that I understand the research method that makes me extremely skeptical.
- There are far too few with only five old, sparsely documented patient histories as marketing of a suspect alternative treatment.
- Blaker refers to outdated studies of little or no scientific value.
- LP is defined by the Norwegian authorities as alternative treatment.
If it goes wrong with any of these energy therapies there’s nothing there for you
They won’t tell you why or point you in the right direction
They stonewall and shut down on you, despite take £80 an hour, if it goes wrong the patient is always to blame 100% of the time, the confusion about what to do next is awful
They won’t tell you why or point you in the right direction
They stonewall and shut down on you, despite take £80 an hour, if it goes wrong the patient is always to blame 100% of the time, the confusion about what to do next is awful
John Mac
Senior Member (Voting Rights)
Study on Lightning Process-course for CFS/ME patients raises controversy
“Our intent is simply to check whether the method works,” says NTNU project manager Leif Edward Ottesen Kennair. “A dangerous study,” says head physician Kristian Sommerfelt.
https://sciencenorway.no/chronic-fa...for-cfsme-patients-raises-controversy/1800982
“Our intent is simply to check whether the method works,” says NTNU project manager Leif Edward Ottesen Kennair. “A dangerous study,” says head physician Kristian Sommerfelt.
https://sciencenorway.no/chronic-fa...for-cfsme-patients-raises-controversy/1800982
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Kalliope
Senior Member (Voting Rights)
It's the same article I shared December 18th on post number #475 in this thread, but much better to have a properly translated article than a google translated one. The journalist is also the editor of this news site about research. She's talked and written about ME and research into ME several times, but doesn't seem to understand the issues concerning the CBT/GET/LP approach to the illness.
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Arnie Pye
Senior Member (Voting Rights)
From the quote in post #510 above...
Are the people writing this stuff completely brain dead? Nobody thinks that cancer and fractures should be left untreated. But it is considered perfectly acceptable to not treat any disease that the insurance companies and the government don't want to deal with.
Are the people writing this stuff completely brain dead? Nobody thinks that cancer and fractures should be left untreated. But it is considered perfectly acceptable to not treat any disease that the insurance companies and the government don't want to deal with.
Snowdrop
Senior Member (Voting Rights)
"Isn't CFS related to something?” (Kennair)
Again with the disingenuous select commenting. Are people with ME/cfs affected psychologically? Of course they are.
The objection however is that BPS ideology treats psychological issues as the primary driver of illness. Try foisting that on cancer patients and people with fractures.
Again with the disingenuous select commenting. Are people with ME/cfs affected psychologically? Of course they are.
The objection however is that BPS ideology treats psychological issues as the primary driver of illness. Try foisting that on cancer patients and people with fractures.
TiredSam
Committee Member
If anyone was attempting to brainwash the elderly with femoral fractures into shaming themselves for not walking around as if their femoral fracture didn't exist then we would have a valid comparison. What bothers me is that we don't have a similar uproar about such a blatently stupid thing to do by people who should know better as we would if anyone tried forcing the elderly to walk on their femural fractures.
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Kalliope
Senior Member (Voting Rights)
A great commentary today in the newspaper Dagbladet (the same newspaper who has defended the LP trial in several articles and attacked those who criticise it). The commentary is written by an independent author called Camara Lundestad Joof who shares a weekly column with a few other authors/intellectuals.
Camara L. Joof writes about catching Epstein Barr virus when she was 14 and that her younger sister also got it. Camara suffered from post viral illness, but eventually got better. Her sister however developed ME and is still sick 19 years later.
Camara then writes about the planned study on Lightning Process, and that she has been following the debate.
She says she contributed to push her sister ten years ago into trying LP. What worries her most was seeing how her sister got trained in lying. If she let any negative thoughts in, she would make herself ill again. When asking how she was doing, she said she bubbled over with energy and that she did not "do" symptoms any longer. In the end her sister collapsed and ended up even worse than she was before LP.
Camara says it's important that family and relatives speak up against the suspicion ME patients are met with.
When you say that ME is something that can be thought or motivated away, you put the burden of getting well on the patient. The responsibility is removed from the health service, from the doctors and the authorities. The bedridden person experiences the message is if you're lying there, you have only yourself to thank. Your illness becomes a choice, and you just don't want enough to get up . That's pretty insane.
Helt sykt
google translation: Insane
Camara L. Joof writes about catching Epstein Barr virus when she was 14 and that her younger sister also got it. Camara suffered from post viral illness, but eventually got better. Her sister however developed ME and is still sick 19 years later.
Camara then writes about the planned study on Lightning Process, and that she has been following the debate.
She says she contributed to push her sister ten years ago into trying LP. What worries her most was seeing how her sister got trained in lying. If she let any negative thoughts in, she would make herself ill again. When asking how she was doing, she said she bubbled over with energy and that she did not "do" symptoms any longer. In the end her sister collapsed and ended up even worse than she was before LP.
Camara says it's important that family and relatives speak up against the suspicion ME patients are met with.
When you say that ME is something that can be thought or motivated away, you put the burden of getting well on the patient. The responsibility is removed from the health service, from the doctors and the authorities. The bedridden person experiences the message is if you're lying there, you have only yourself to thank. Your illness becomes a choice, and you just don't want enough to get up . That's pretty insane.
Helt sykt
google translation: Insane
Peter T
Senior Member (Voting Rights)
Here, here!
Marit @memhj
Established Member (Voting Rights)
okei this translation sucks....
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rvallee
Senior Member (Voting Rights)
I think too much is made of the dangerous aspect. It is dangerous and cruel, but it's impossible to communicate that to people who don't have a clue what ME is. It will not resonate, unfortunately. We are faced with QAnon-level of delusional, nearly the same response: "what, you don't want to help those poor sick people?"
It's pseudoscience of absolutely no merit, blatantly astrology-level. If medicine gets in the habit of promoting pseudoscience then it loses all legitimacy at being science-based and being a self-correcting system, not bound to the whims and delusions of a few. It threatens the very premise of the system: that we rely on experts to settle what is a fact and what isn't. Abusing the style of science to promote a delusional belief system is complete misuse, whether we are talking about snorting homeopathic remedies or doing remote crystal healing, or whatever.
This is clownish. Dangerous also but no one will get that until they get ME and no one who would entertain this clownish nonsense has any clue what ME is. They are just as bad as psychics and spoon-benders. They even use the same language and arguments: it doesn't work because you don't believe in it. Laughable to the point of contempt. They should be asked to describe what LP is, none of that "the intervention" crap. What. Is. It? They hide behind weasel words, aware that they cannot seriously defend this junk if people knew what it was.
Ridicule is sometimes the last refuge of the powerless. It should be used more here. These people are being ridiculous and need to be called out for it. I will bet my tiger-repelling rocks on it. They work. They work exactly as well as the LP, or even better. No, I will not show you my rock, but there are no tigers around. And they work so well, there also aren't any tigers around you. That's how well they work. Try to prove me wrong, you can't.
It's pseudoscience of absolutely no merit, blatantly astrology-level. If medicine gets in the habit of promoting pseudoscience then it loses all legitimacy at being science-based and being a self-correcting system, not bound to the whims and delusions of a few. It threatens the very premise of the system: that we rely on experts to settle what is a fact and what isn't. Abusing the style of science to promote a delusional belief system is complete misuse, whether we are talking about snorting homeopathic remedies or doing remote crystal healing, or whatever.
This is clownish. Dangerous also but no one will get that until they get ME and no one who would entertain this clownish nonsense has any clue what ME is. They are just as bad as psychics and spoon-benders. They even use the same language and arguments: it doesn't work because you don't believe in it. Laughable to the point of contempt. They should be asked to describe what LP is, none of that "the intervention" crap. What. Is. It? They hide behind weasel words, aware that they cannot seriously defend this junk if people knew what it was.
Ridicule is sometimes the last refuge of the powerless. It should be used more here. These people are being ridiculous and need to be called out for it. I will bet my tiger-repelling rocks on it. They work. They work exactly as well as the LP, or even better. No, I will not show you my rock, but there are no tigers around. And they work so well, there also aren't any tigers around you. That's how well they work. Try to prove me wrong, you can't.
MSEsperanza
Senior Member (Voting Rights)
Blog article by Nina E. Steinkopf / MElivet, 28.01.2021:
Ethical approval of Lightning Process-study is maintained
https://melivet.com/2021/01/28/ethical-approval-of-lightning-process-study-is-maintained/
NEM has a meeting on 19th March 2021.
Ethical approval of Lightning Process-study is maintained
https://melivet.com/2021/01/28/ethical-approval-of-lightning-process-study-is-maintained/
NEM has a meeting on 19th March 2021.
rvallee
Senior Member (Voting Rights)
Ethical. Unethical. Is there really a difference when you think about it? What's ethical for one is unethical for another. What is even harm? If a patient is harmed and medicine doesn't believe it, well, they weren't really harmed and so it's perfectly ethical to be unethical.
Clearly the ethical review process is a sham. No legitimate process would fail this miserably, it's nothing but a formality unrelated to ethics, rather about making sure people comply with the system, ethics shmetics.
Clearly the ethical review process is a sham. No legitimate process would fail this miserably, it's nothing but a formality unrelated to ethics, rather about making sure people comply with the system, ethics shmetics.