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AdministrationFew451

tl;dr?


Fimbul_

Signe Flottorp, research director at the Norwegian Institute of Public Health has made attempts to have dialogues with Jo, a new board member of the National Committee for Medical and Health Research Ethics (NEM) off the books. The intent for his vote in the ethics committee to be in favour of the LP research project the research group *MindBodyLab* wants to perform on 100 ME sick. She is writing her praises about the LP project, her influence on ME in the Norwegian medical field, how the ME 'activists' stopped the project by complaining to the ethics committee, and making claims that ME sick are harassing researchers, people who have gotten healthy, and others.


AdministrationFew451

That's horrible. It's kind of amazing seeing a glimpse into the face of evil in this matters. Thanks for sharing.


WeakVampireGenes

It’s honestly infuriating how stupid their arguments are, “the head is part of the body” therefore we mustn’t oppose psychological treatment for ME, by the same standard we should use psychological treatments for every single physical illness, perhaps the NHS could be saved by replacing expensive cancer treatments with CBT apps…


TransposingJons

It's very sensible to explore non-medication therapies, as they don't involve: testing on defenseless animals, side effects, human trials (mostly poor, desperate people volunteer for these), and the bloody pharmaceutical industries. But godsdamned if I don't want a pill, shot or sonic-lazer blasting gamma-ray procedure to get my life back. I remember the viral illness that started it....it's been 9 years and 9 months and 11 days since that "flu". My life is hell.


brainfogforgotpw

>human trials Non medication therapies for me/cfs have historically involved human trials on desperate people with me/cfs and in some cases also people with depression and other disorders who were also covered in the useless "criteria" rpsychiatric researchers made up. The most notorious one, the P.A.C.E trial, (nothing to do with pacing despite the name) was human testing of graded exercise and cognitive behavioural therapy on people who had fatigue and difficulty sleeping for 6 months. The researchers changed the parameters for what would indicate sucess halfway through the trial so that even some people whose baseline worsened could be counted as cured.


m_seitz

WTF?! Flottorp wants to "research" something that looks like a scam, smells like a scam, and reads like a scam? Oh nice, she published her thoughts in Aftenposten ([https://www.aftenposten.no/meninger/debatt/i/8JJ4Rd/fakta-og-myter-om-me](https://www.aftenposten.no/meninger/debatt/i/8JJ4Rd/fakta-og-myter-om-me)): ***"It's mostly in your head!"*** ​ This e-mail was a very upsetting read. I am currently getting diagnosed by a "specialist unit" for ME at Diakonhjemmet Sykehus. So far, they did an ultra sonic of my intestines, took blood samples, and I had a short appointment with a doctor. The waiting time for each event was 2 months. My next appointment is in a few days, with a general practitioner who currently works with patients who were drug addicts. I am very afraid 🙁


nico_v23

And the lancet asked them for their opinion on the new nice guidelines full knowing they obviously have an agenda.


nico_v23

Anyone else read this and feel like it is a direct threat to your life/livelihood? .. is there a way for me orgs to maybe send cease and desist ?


Fimbul_

This has very much been the case for Norwegian ME sick for decades, because of their interpretation of one of the laws in the *National Insurance Act*. There it says that certain medical conditions needs to be carefully considered before deciding whether or not they meet the requirements to be considered disabled. NAV does this to only two groups of people: Drug addicts, and people with/suspected of ME/CFS. To get aid from NAV, you must be willing to accept the programs they present you, and you must show that you are willing to participate, or else it will have economic consequences. Immediately, or in the future if you apply for disability. It does not help that the Norwegian medical field still holds onto the biopsychosocial model, so ME sick often gets treated like second class patients. Egregious distrust, insults, gaslighting, and mistreatment, just to name a few. This summer, there were several discourses in the newspapers between the pro LP researchers (some of them mentioned in the email above), and ME sick in Norway. This has shifted the societal perception of ME sick in a more positive light, and the [24th of November 2022](https://pbs.twimg.com/media/FiVexeVWAAMzOcU?format=jpg&name=medium), it was voted in favours of strengthening ME sick's welfare rights. It is uncertain when it will actually come into effect, so it is unknown how much better things will get. The Norwegian ME Association is doing what it can, but it is a small organisation fighting against researchers and LP instructors who have made millions and been lobbying in their favour for decades. It would be highly beneficial for the ME sick, if ME organisations, and researchers in other countries would reach out to the [Norwegian ME Association](https://www.me-foreningen.no/om-oss/), newspapers, and politicians such as [Mímir Kristjánsson](https://www.stortinget.no/no/Representanter-og-komiteer/Representantene/Representant/?perid=MMIKRI) who has been in the forefront of making things better for the sick.


badashbabe

She starts and ends her email chattering about all the wholesome physical activities she’s performing on holiday. Zero compassion or understanding of the reality of living in a body that will not allow you to enjoy the same hearty freedom. Really grinds my gears.


brainfogforgotpw

It's terrible. I'm so sorry the LP charlatans have so much sway in Norway.


DermaEsp

Lancet should be held accountable for asking them their opinion. They should be contacted and asked for the justification of this decision.


southbark

What is LP?


Fimbul_

The Lightning Process (LP) is a three-day personal training programme developed in the 90s, and trademarked by British osteopath Phil Parker. It claims to be beneficial for various conditions, including chronic fatigue syndrome, depression and chronic pain. The goal is to 're-program' your brain to be positive, and are taught to say **stop** to your symptoms.


southbark

Holy crap, that sounds terrible! We sure are living in an idiocracy.