News from Scandinavia

@mango :(:hug:

On a lighter note: The parents of severely ill Marie Louise, Vibeke and Esben, are finalists in Denmark's Patient Award in the category Firebrand, for their ME activism. Public voting open until 31 May.

I voted from outside Denmark and it seems my vote was counted. Vibeke and Esben's entry showed top left on the voting page for me (but check their names and the word ME-Foreningen feature in the description, in case the site presents the options randomly). If you wish to vote, first select "Stem på" and then select the bigger button "Stem".

Google-translated entry from the voting page:
Vibeke Ilsøe and Esben Gustavussen, volunteers in the ME Association

Vibeke Ilsøe and Esben Gustavussen have as members of the ME Association managed to create health policy and media attention about the disease ME (chronic fatigue syndrome), which approx. 14,000 Danes are affected. After their daughter was hit by ME, Vibeke and Esben have thoroughly studied the disease and made a unique effort for ME patients in Denmark. They have managed to focus on ME through ongoing articles in Ugeavisen Esbjerg. They have been contacted by Regional Chairman Stephanie Lose, who has promised to raise the level of ME patients. They have inspired a local initiative that collects money to get a Norwegian ME expert to Esbjerg to speak for nursing staff, mayor, medical center, etc. and update them on a disease they had only scant knowledge about. Last, but not least, they have achieved talk time for the Health and Elderly Committee at Christiansborg. With their fight against ME, Vibeke and Esben have created a paradigm shift in the understanding of the disease - confirmed by the Parliament's unanimous adoption of a new approach to the disease ME 14 March 2019.
The judging panel emphasized Vibeke and Esben's great commitment and many approaches to making a difference.
Their efforts for the disease have been an inspiration to many others with ME.
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ETA: Link: http://sundhedsparlamentet.dk/afstemninger.php?2018 (don't know why the link says 2018 when vote is in 2019)
Note to self: stay off computer when crashed as likely to forget something important, like a link...:bag:
 
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Jonathan Edwards said:
Thanks @Clementine

No patient organisation should be saying things like that.
The fact that an ethical committee approved something means nothing other than it may not be bad (if they had not approved it probably is bad). It might still be bad - patients are entitled to make up their own minds about it. And patient organisations are entirely at liberty to distance themselves from anything that looks bad to them. Ethical committee approval says nothing about scientific quality - as we have seen from the recent HRA report in the UK on PACE.

And no way do members 'need to participate' in something they do not like the sound of. It seems extraordinary to me that any patient organisation should take such a paternalistic view. The whole point about the ethics of volunteering for research is that it is entirely optional.
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Exactly. This letter to members was sent after some blogposts very thoroughly described the problems with this study (https://translate.google.se/translate?sl=sv&tl=en&u=https://pacegranskaren.wordpress.com/2019/02/28/metodologiska-och-etiska-problem-i-en-svensk-beteendestudie-av-me-sjuka-del-5-sammanfattning/) The board of RME are aware of these blog posts but they apparently didn't like people discussing this study and sent the letter partly as a response to it.

We don't know exactly why this is happening but it's like all the things that the ME community has learned from the BPS clique are suddenly gone. Like that ethical approval doesn't tell us anything about safety or methodological quality or that it's really important to not participate in studies with a study design that makes your alarm bells go off loudly.
 
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Snowdrop said:
I remain completely confused by all this. Why would people switch their point of view to something so utterly against all patient interest. Especially at this time. It suggests that those who changed never had any deep grasp of the subject matter around ME.

Is money somehow involved?
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It definitely means that those in charge have no understanding of ME/CFS or the BPS model of ME/CFS.

What has happened recently though is that the BPS model has changed a lot. Especially in Scandinavia... Or well.. It has changed outwardly, inside it is still rotten to its core.

CBT or GET are no longer ''cures'', and sometimes they are not even ''treatments''.

In the case of CBT it is sold simply a way to help patients deal with psychological problems that they might have as a consequence of their ME/CFS.

In the case of GET, it isn't really graded exercise anymore. It is simply about making sure that patients who have enough energy, use said energy to avoid becoming decondtioned.

Of course the problem is... Why then.. Is the PACE trial still used as evidence as treatment for both? Why still use the Cochrane reviews, when the ''new'' CBT / GET isn't anything like that used in studies used to cite the efficiency of both treatments? And why are the treatments still de facto exactly the same?

It's because those advocating for BPS like Fink and other Scandinavians are lying. They lie constantly. They know the treatment are still exactly the same, but they have managed to dress up the decaying corpse of false illness belief. Which has sadly been enough to convince sufficient people. It's also one of the crazy things about the BPS trail of thought that they have admitted to the importance of lying. ''People hate being told they have a mental illness, so instead we have to sugar coat it'' (This isn't an exact quote, but many of us have come across this sort of paternalistic approach to ME/CFS before). Now they seem to no longer feel like it is enough to lie to patients. They must also lie to policy makers, politicians and even people working in health-care. For the greater good!

This is why I always say that someone like Fink is infinitely more dangerous than someone like Chalder. Because at least Chalder is somewhat honest. Whereas Fink is a gobbledygook chameleon. I suspect that this sort of BPS approach to ME/CFS is going to survive for long after a bio-marker has been found. Sadly.
 
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I don't think this has been posted yet, it's from March 2019: feature article on TV Syd, (Denmark).
A disease in the dark

The doctor thought it was child abuse to give a 13-year-old boy the diagnosis Chronic Fatigue Syndrome. For 16 years Daniel Johansen has struggled with a disease that no one can see.
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Top marks to article for describing impact of ME, and to Daniel the featured patient who comes across very well.

Bottom marks for interviewing a doctor from the Functional Disorders Center in Aarhus who insists GET and CBT help and suggests you can think yourself more ill. The proof, allegedly, is the stories on Recovery Norge.

https://www.tvsyd.dk/artikel/laegen-kaldte-daniels-sygdom-boernemishandling

https://translate.google.com/transl...aegen-kaldte-daniels-sygdom-boernemishandling
 
A brilliant letter to the editor in a local Norwegian newspaper. It's written by a nurse and ME-patient.

Tønsberg blad: ME. Vi må faktisk snakke mer om det
google translation: ME. We actually must talk more about it.

Patients are distrusted, children have missed schooling and social relationships, parents are suspected of neglect since the children remain ill despite cognitive therapy (CBT). Alternative undocumented treatments have made patients sick and commercial operators are getting richer. The problem has spread within NAV's doors and the livelihoods affected. ME patients are "voted" as the patient group with the lowest quality of life of all diseases. We are the sickest of the sickest and we are totally neglected in the big picture.

.......
We want you doctors and all health professionals to receive training on ME.

And we want more people (!) to want more public money for research.

We want you who are healthy and learned to speak our case, there are enough patients who have exposed their worst and most vulnerable experiences in life in newspapers in the hope of change.

When you receive us patients that you don't know what to do with, channel the frustration upwards in the system, not down on us.
 
Kalliope said:
A brilliant letter to the editor in a local Norwegian newspaper. It's written by a nurse and ME-patient.

Tønsberg blad: ME. Vi må faktisk snakke mer om det
google translation: ME. We actually must talk more about it.

Patients are distrusted, children have missed schooling and social relationships, parents are suspected of neglect since the children remain ill despite cognitive therapy (CBT). Alternative undocumented treatments have made patients sick and commercial operators are getting richer. The problem has spread within NAV's doors and the livelihoods affected. ME patients are "voted" as the patient group with the lowest quality of life of all diseases. We are the sickest of the sickest and we are totally neglected in the big picture.

.......
We want you doctors and all health professionals to receive training on ME.

And we want more people (!) to want more public money for research.

We want you who are healthy and learned to speak our case, there are enough patients who have exposed their worst and most vulnerable experiences in life in newspapers in the hope of change.

When you receive us patients that you don't know what to do with, channel the frustration upwards in the system, not down on us.
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Weird how every medical professional who falls ill to ME agrees that we were right all along and that what they were taught, if at all, is misleading and harmful.

Must be a coincidence. Either that or we're some kind of wizards. Yes, must be that.
 
Kalliope said:
Another letter-to-the-editor in the ongoing ME debate in the newspaper Aftenposten. This time from prof. Wyller

Mentale teknikker er nyttig mot ME
google translation Mental techniques are useful for ME

Ten years ago, I made a hypothesis that automatic stress reactions are important for ME, while disorders of the immune system are not so important. Stress reactions involve both hormones, nerves, thoughts, feelings and behaviors - here it is meaningless to distinguish between biology and psychology.

The hypothesis is firmly rooted in modern neuroscience, especially how the brain automatically interprets signals from our surroundings and from the body's interior on the basis of expectations.

...
That mental processes are part of the (not the whole) picture at ME is a good news. This means that mental techniques are likely to be useful treatment.This assumption has proved to be correct. Several studies have documented good effect of cognitive therapy, while the risk of side effects is very low.

The largest of these studies, the British PACE study , has been highly criticized, but an independent review of British health authorities shows that this criticism is essentially unfounded (British Medical Journal, February 7, 2019 ).

The mental training program Lightning Process or LP , which is based on a blend of cognitive methods and other fully recognized psychological techniques, is less well-known in scientific terms, but one study suggests that this method is also safe and can have good effect. LP is often rejected because LP instructors make money from their work, but this is of course no scientific objection to the method. All drugs are also linked to commercial interests.
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Just vaguely recalled there were one ore more Norwegian ME researchers refering approvingly to the Lightning Process, and found this -- are there more examples?
 
MSEsperanza said:
Just vaguely recalled there were one ore more Norwegian ME researchers refering approvingly to the Lightning Process, and found this -- are there more examples?
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There's this from Helland:

- These are very exciting results. We have been waiting for this study, and it is great that the data has finally been published. It is very interesting that so many had the effect of LP. At the same time, we must keep in mind that there was a minority of all who were requested who chose to participate in the study. We therefore do not know if Lightning Process works for everyone, says Ingrid B. Helland to Dagens Medisin.
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https://translate.google.com/transl...e-er-veldig-spennende-resultater/&prev=search

Presumably Vogt's been promoting LP with anecdotes somewhere?
 
MSEsperanza said:
Just vaguely recalled there were one ore more Norwegian ME researchers refering approvingly to the Lightning Process, and found this -- are there more examples?
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There are numerous examples. They come all the time and Lightning Process is even mentioned in a digital reference book for doctors in a section about treatments for ME.

The latest approval is from today.
There's been a debate in the newspaper Aftenposten lately and today MD Georg Espolin Johnson defends PACE and claims MD Henrik Vogts organisation (consisting mostly of people who claim to have recovered from ME by Lightning Process) is "documentation that patients have recovered by cognitive approach".

Text with google translation
 
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Kalliope said:
There are numerous examples. They come all the time and Lightning Process is even mentioned in a digital reference book for doctors in a section about treatments for ME.

The latest approval is from today.
There's been a debate in the newspaper Aftenposten lately and today MD Georg Espolin Johnson defends PACE and claims MD Henrik Vogts organisation (consisting mostly of people who claim to have recovered from ME by Lightning Process" is "documentation that patients have recovered by cognitive approach".

Text with google translation
Click to expand...

Thank you @Kalliope and @Esther12

Is @dave30th aware of this?
 
Jonathan Edwards said:
Maybe Norwegians have a thing about lights in the sky? I have always found them very sensible and sympathetic but we all have our demons it seems.
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I have no idea what's going on. Alternative treatments have been rather popular for a long time among the general public, but to see doctors and other health care personell embracing Lightning Process as ME treatment has been very surprising and disheartening. They are usually sensibly sceptical to undocumented treatments, yet a Lightning Process coach has been allowed to write regularly for a newspaper in medicine and for the journal for the Norwegian Medical Association as well as teaching med students and the Norwegian Labour and Welfare Administration about ME and her treatment for it. I would very much like to know who opened those doors for her.

On a side note, our princess has gotten a new boyfriend. A shaman and healer from USA who is visiting the country in these days. He has claimed to be able to heal among other blood cancer. But of course, it doesn't work if the patient has given up. This and other claims have brought an intense debate about alternative treatment vs school medicine. Which is a good thing, but very strange to now see doctors strongly criticising alternative, undocumented treatments and the patient blaming these often entail. Where are these doctors in the ME debate? Where are they when patients alert that the undocumented alternative treatment Lightning Process has gotten access into Norwegian public health care and is being pushed on a patient group by their colleagues? Where are they when it matters?
 
Kalliope said:
I have no idea what's going on. Alternative treatments have been rather popular for a long time among the general public, but to see doctors and other health care personell embracing Lightning Process as ME treatment has been very surprising and disheartening. They are usually sensibly sceptical to undocumented treatments, yet a Lightning Process coach has been allowed to write regularly for a newspaper in medicine and for the journal for the Norwegian Medical Association as well as teaching med students and the Norwegian Labour and Welfare Administration about ME and her treatment for it. I would very much like to know who opened those doors for her.

On a side note, our princess has gotten a new boyfriend. A shaman and healer from USA who is visiting the country in these days. He has claimed to be able to heal among other blood cancer. But of course, it doesn't work if the patient has given up. This and other claims have brought an intense debate about alternative treatment vs school medicine. Which is a good thing, but very strange to now see doctors strongly criticising alternative, undocumented treatments and the patient blaming these often entail. Where are these doctors in the ME debate? Where are they when patients alert that the undocumented alternative treatment Lightning Process has gotten access into Norwegian public health care and is being pushed on a patient group by their colleagues? Where are they when it matters?
Click to expand...

When doctors practicing school medicine embrace and promotes LP, giving a da.. about documentation, not bothering the big risk of harming patients, one gets, let’s say, a little worried. What is next to come as a mismatched solution to almost everything? It wouldn’t surprise me if a couple of doctors, sooner than later, brings shamans in as the next big thing in school medicine. If LP deserves promotion, why not a tiny little bit of shamanism?:banghead:
 
On Monday 3 June there will be an interpellation/debate about ME in the Swedish parliament.

Will probably be live streamed, recorded and available to watch here https://www.riksdagen.se/sv/webb-tv/

Google Translate said:
Questions to the Minister of Social Affairs, Lena Hallengren:

1. How does the Minister intend to work for a national competence center in the area whose task is to ensure that the knowledge levels are high within the regions in order to meet the patient group with ME?

2. Today there is competence on ME in only two regions - how does the Minister intend to work for the rest of the 19 regions to gain increased competence so that the patient group can receive adequate help and support in their home region?

3. How does the Minister intend to work for the research to be developed and strengthened in the area?

4. How does the Minister intend to work for the relatives to receive support and help?
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https://www.riksdagen.se/sv/dokumen...motande-av-patienter-med-diagnosen-me_H610263
 
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