Norway: Article about ME seminar with security

I am aghast at the extreme level of dishonesty of the researchers who spun this small, isolated incident into “throwing a chair” (whether at a speaker or not). Alas, I should no longer be at this point, but it is blatantly unethical to both distort reality and smear a patient community so grossly — surely the Norwegian doctors at the helm of this crusade are falling short of Norwegian medical good practice rules in doing so and should be sanctioned?

 

Thank you for summarizing Prof Rønning’s response, @Kalliope. It comes across as very sensible, in particular the last part: “What the RN movement has reason to fear isn't violence and abuse from ME sufferers, but acceptance that RN's understanding of knowledge is outdated”. I cannot imagine that RN leaders truly believe in the Lightning Process, so they are well aware of this and they are trying every tactic in the book to deflect criticism on this point and turn it against their opponents.

 

And let's not forget the fake threatening letter that Crawley had made up. It's said to be representative of something said somewhere, according to known liars, which may as well be the song lyrics above, but no one who makes up a fake threat letter about a vulnerable group has any integrity and all their claims of this nature become suspicious by default.

So to recap:

• Death threats and accusations of harassment: song lyrics and a made-up threatening letter, no evidence provided when asked by a panel of judges for any evidence of any misbehavior, in fact admission that there is no evidence
• Vandalism with a cup: a cup was thrown/maybe fell, and possibly damaged a glass door after a patient was expelled for asking questions and countering false claims said to medical professionals
• A chair was thrown: a chair allegedly fell backward after someone stood up too quickly, probably
• Internet trolling: looking forward to Michael Sharpe retiring, so he would stop harming people, and other benign comments that obviously did not merit an internationally published special report
• Attempts to get people fired: pointing out incompetence makes people look bad but it's legitimate and as far as we know the only people who attempted to get people fired were our BPS overlords, evidence of strong-arming journalists and editors to kill factual reports that make them look bad

I won't even bother with the police thing, the idea is laughable, and it would have been the main evidence in the PACE ICO ruling.

And out of that, decades of successful discrimination, a population of millions held in contempt out of lies and cheap innuendo.

And of course all legitimate researchers on ME have nothing but good things to say about this engaged community. It's only charlatans pushing a harmful pseudoscientific ideology that get criticized, for the mediocrity of their evidence and the fully speculative nature of their entire belief system.

 

I seem to recall "Dr. Fauci" recounting that he sat down and thought about what people with AIDS were saying and he decided that they were right. Thereafter Fauchi was acknowledged, by the people who so vehemently attacked him, as an advocate and a friend --- then again, Fauchi was/is a remarkable human being --- not may of could/would be as coherent, and rational, in the face of criticism.
EDIT - should have added that Fauci wanted to do good science --- help the ill/vulnerable - another difference?

 

We could also draw inspiration from activist movements that use shocking but non violent methods that generate significant media coverage. Lately, environmental activists like those from the British organization Just Stop Oil have thrown jars of tomato sauce at famous paintings in renowned museums, pies at statues and have interrupted widely broadcast sports events. All of these have received worldwide coverage.

A ME activist action where some patients decide to spill their coffee on the floor or stand up and throw their chairs does not sound as radical but it could have enough of an effect to be picked up by the media. I think it would be paramount that activists reach out to journalists after the fact to ensure that their views are covered in the reporting of the action.

 

When Reuters "reporter" Kate Kelland, in her role as a flack for the SMC, was interviewing me for her screed, she asked about Paul's tweet that he wished for Professor Sharpe's "professional demise." I said I completely disagreed that that was "harassment" or "threatening" in any way. It clearly was calling for an end to his PROFESSIONAL reign, not his physical being Any other interpretation was bogus and preposterous--but she ran with it anyway.

 

A follow up article from Morgenbladet. This time an interview with researcher Anne Kielland from the research project TjenesteogMEg who is looking into ME patients meeting with the health care services.

Title and ingress:
- When people don't take ME sufferers seriously, we have to put the foot down

The health care services attitude to ME patients have to change on a system level, says Fafo-resaercher Anne Kielland. Kielland's ME research is marked by activism, answers research director at the Norwegian Institute of Public Health.

google translated quotes:

- If you portray an entire group as aggressive, it is implied that they are a bit irrational, which in turn suggests that they are not entirely to be trusted. Irrational people cannot be taken completely seriously, and then the whole group is delegitimised, says Kielland.

...

- We think that the public attitude towards ME sufferers is further reflected in how other people relate to them - do not take them seriously and joke with them - and how they feel about themselves. Therefore, something needs to happen with attitudes at system level. Although it is a difficult diagnosis, it is about recognizing that these are sick people, says the Fafo researcher.

- We have to put our foot down. When people don't take ME sufferers seriously, I think we have to speak up. We need to get away from the fact that it is legitimate not to recognize these people, both in terms of how we talk about them and what kind of services we offer them.

...

The findings in the Fafo survey suggest that the Norwegian public services largely adhere to a psycho-somatic understanding, Kielland believes. When they do not, according to Kielland, it is nevertheless widespread to make use of this type of treatment.

...

- We experience the group as quite cowed and grateful for very little. This gratitude for what should have been obvious, we think, is an expression of the marginal position they have been pushed into, she continues.

- They are part of it. It is part of the definition of symbolic violence: Both the elites and the marginalized continue to confirm what gives rise to the marginalization.

...

- To me, the project seems activist, as if they are closely allied with the ME association and in a way are their mouthpiece, explains Signe Flottorp, head of research at FHI, to Morgenbladet.

...


- It is disappointing of Flottorp that she tries to label a large and serious research project as "activist" - by implication unscientific, says Kielland.

- It is unclear to me what Flottorp means by the fact that we are "allied" with the ME association, but it sounds like an attempt to undermine our research professional seriousness, and that in a project where we stand on very solid methodological ground. (...)

In any case, Flottorp must at one point or another decide on the results, and then we hope for a more professional focus, where we have as a common goal to improve the health and welfare services for those suffering from ME.

Article is paywalled:
https://www.morgenbladet.no/aktuelt...e-tar-me-syke-pa-alvor-ma-vi-sette-ned-foten/

 

Leader of Recovery Norge, Henrik Vogt with two board members who are previous ME sufferers wrote an answer 28th October titled: There is no "Recovery Norge-movement".

It's behind paywall, so here's a summary:

They describe Recovery Norge as an organisation of people who have experienced recovery from among other CFS/ME by strategies that involved changes in thought patterns, behaviour pattern, stress coping and so on. The goal is to share these experiences so that we can learn from them and provide justified hope to those who suffer today. "This is what RN is: a group of people who are doing voluntary information work in order to help".

They say that Rolf Rønning doesn't have any experience from ME as researcher, and that Rønning is claiming things about RN that are conspiratorial, unintelligible and absurd.

There is no RN-movement, it is a small organisation with limited resources, run voluntarily and without any pay. "It's just as absurd as it is lack of respect when people who have been severe ME sufferers themselves, are accused of contributing to "symbolic violence" to ME sufferers".

Their members have experienced ME as something very bodily and physiological. Their focus is not on causes, but on their member's stories and experiences with recovery. They accuse Rønning for trying to keep those voices marginalised.

"There is a battle for ME being perceived as something not possible to handle with for instance cognitive techniques and stress coping. Our members' stories don't fit into this battle. Therefore they are met with negative reactions when they step forward as recovered".

https://www.morgenbladet.no/ideer/debatt/2022/10/28/det-finnes-ingen-recovery-norge-bevegelse/

 

This got a response today from Ola Didrik Saugstad, Nina E. Steinkopf and Rolf Rønning titled: Recovery Norge is hindering better help to ME-sufferers

Summary:
They argue that Recovery Norge (RN) is legitimising actors that claim even severe ME can be cured with cognitive methods and LP. At the same time the organisation has lobbied to political and medical decision makers. This is hindering Norway to partake in the mutual international understanding of ME.

RN claims it's wrong that they are fighting for a specific view of ME, still the criterium for membership is to have recovered by methods as change of thought- or behavioural patterns or with human interaction. RN is also describing ME as a medically unexplained illness, even though WHO has classified it as a neurological disease since 1969.

They believe there are approximately 15 000 Norwegians who have taken LP. RN has approximately 35 verified recovery stories about ME and LP, and no mentions of all those who deteriorated from the method. RN is causing damage when it legitimises an alternative treatment which cause deterioration.

They also point out that Vogt has not done any research on ME himself, but that doesn't hinder him from partaking in the debate.

https://www.morgenbladet.no/ideer/debatt/2022/11/05/recovery-norge-hindrer-bedre-hjelp-til-me-syke/

 

Vogt’s response is truly strange. What is Recovery Norway other than a movement, given their lobbying activities? He would be very quick to label the Norwegian ME association as such, but it seems he has double standards.

RN may not be a wealthy organization, but it has been funded enough to continue its work for the past 5 years. Some recovered members have also gained financially from it as they have become LP coaches and use their own stories of recovery — which RN promote — in this endeavour.

Vogt shot himself in the foot twice, too. Not only is he not a ME researcher himself (he ought to have thought twice before making this point), but Nina Steinkopf has also extensively documented his own lobbying. If I recall correctly, it involved participating in seminars hosted by an insurance company, perhaps along with mails to the Norwegian DWP (NAV).

Good on Morgenbladet for allowing Steinkopf, Saugstad and Rønning to respond — they brought the receipts out, and it makes for a thorough debunking of Vogt’s fallacious claims.

 

I don't know the difference between the various types of court there are for trying court cases in the UK. The town I live in has a county court and/or a crown court and/or a magistrates' court. They may all be the same place for all I know.

The local paper (now online) has published the names of people who have been convicted of (usually minor) crimes in the courts. Some details of the crimes and sentences are given. Ages and partial addresses of the convicted person are also given. People found not guilty are not named or listed, as far as I can tell.

So, if guilty people in the UK can be identified in a newspaper (on and off line), it seems likely that anyone being violent or disruptive in a meeting could be arrested and tried. I have never heard of any arrests being made in connection with ME activism, never heard of a court case, never heard of any guilty verdicts, and never heard of any fines or jail time being imposed. So if people with ME really are that dangerous then names should be given, charges should be described, and sentences should be disclosed.

I really don't think that such people exist, and the whining from researchers is just mostly made-up gossip that is useful to them. If they can prove there are any violent activists who have been found guilty of an actual crime they should be named and details given. Otherwise they are just belching out hot air to make life difficult for patients and easier for them.

 

Yes, true, and I agree. I didn't mean to imply otherwise. I just don't think there are any cases of violent ME activism at all, and that an entire group of sick people is being stigmatised for the benefit of some very poor researchers protecting their careers, and to help governments save money.

 

Good thing that no one ever said the first part then, since it's the 2nd part that's true. A small lobbying organization for a commercial enterprise that exists to promote its business interest.

No one ever said this is a movement. It's clearly not. It's barely, what, 40-50 people working for a small commercial company? That's not a movement. That's a small organization. Zero people are confused about that. It's exactly the problem here, this small MLM lobbying outfit is barely 1% of the actual ME community, an actual grassroots movement. We have no lobbying organizations, we certainly don't have people promoting our interests at the highest levels of the medical profession. RN is astroturfing, although very poorly done.

RN only represent the LP organization. It's their commercial business interest, for many it's their job. They have no evidence for their pseudoscience, which makes them being constantly propped up by medical authorities a massive scandal of improper behavior and abuse of influence. That's all they are: a business in search of more clients. Clients that are gifted to them through corrupt means by a dysfunctional healthcare system, no longer able to care about the distinction between science and pseudoscience, between high-quality research and dubious anecdotes.

For all intents and purposes, the status of RN and LP is the exact same as people who swear they cured their cancer, or whatever, by drinking their urine, aged or not. The only difference is that one pseudoscience is beloved while the other isn't, not really based on anything other than the traditional belief system in medicine that anything they don't understand cannot and can only be psychological, a default explanation, an aberration in the modern world.

 

public being taken for mugs
something along the lines of mugshots
'drop' the act
or just some broad estimation of what amounts of money is being made by this scheme and the pyramidy format diagrammed on one side (maybe a pic of known face with their flash car or whatever) and the 'real' outcome and patient face on the other, and a question saying which mug did you mean to/think you were putting your money in to support

 

Minimization often by use of psychologising, seems standard practise for some in medicine.

Minimization without scientific proof, to the point of ridiculousness. For example, patients criticized for reacting to pain from a surgeon's knife when anesthetic was inadequate. Or the unreasonable expectation that patients will bounce back to all regular activities within hours of major surgery.

The BPS Movement's insistence that ME is psychological, is a minimization without scientific proof. And, has unfortunately been accepted by many in medicine.

 

Some parents of children with ME place them in LP programs. The parents think the child is ill. This understanding may also have been validated by medical personnel. However, it seems the LP then goes about delegitimizing the parents' and others' authority and understanding that the child has any illness at all.

What a confusing time for the child, whose trust and belief in their parents may be shaken or damaged. This could in turn make the child feel very alone with their situation. Are the potential negative ramifications of this process ever examined? It appears not.

 

So a coffee cup dropped has morphed into a chair being thrown?

No dramatizing there then....

 

Last I heard someone threw a car, possibly a boat. Not a big boat though. Possibly a small yacht purchased with secondary gains.