News from Scandinavia

mango said:
The recent series of articles in Swedish media about suicides among pwME seems to have triggered an "interesting" reaction among some alternative/complementary/functional medicine practitioners and supporters, mould activists etc, of whom many have very loud voices on social media...

In short, their message is that everyone who has ME can recover, if only they want it badly enough, if only they try hard enough. The most commonly recommended methods are healthy eating habits, positive thinking, "detox" (expelling radiation, getting rid of metal contamination etc), stress reduction, supplements, mould avoidance, breathing techiques, "guided self-healing" etc.

There is a lot a lot of blame and judgement in their narrative, accusing pwME of making/keeping themselves sick through "refusing to accept that recovery is possible", "being afraid and/or unwilling to recover", "playing a victim", smoking, guzzling coca cola and binging on biscuits and crisps and food full of chemicals etc. The amount of guilt mongering is absolutely nauseating :(

Some of them have gotten media attention over the years. Others are actively lobbying politicians to start a ME clinic along these lines, using a Canadian rehab center for chronic illnesses as a model (it supposedly has a 70-80% recovery rate), claiming that this is the way to get all pwME back to work etc.

There's lots of business and money involved, because of course they have private consultations to sell, as well as tests, detox kits, supplements, air purifiers etc etc etc...

And of course there are lots of articles claiming to be guides to effectively treating or curing ME. Here's two random examples of what that might look like:
https://www.annahallen.se/lathund-mecfs/
http://www.loveandlighthealing.se/kronisk-trotthetssyndrom-mecfs/

Lately I've noticed an escalation. Some of them are now openly blaming patient organisations like RME as well as independent ME activists for the suicides and the fact that people don't recover. Accusing them (us!) of lying when stating the scientific facts about the chronic nature of the disease and how very few % fully recover etc; even accusing them of making pwME suicidal.

As an example, a public Facebook post:
Code: 
https://www.facebook.com/photo.php?fbid=10221283686503609&set=a.4745683161934&type=3



Another example/thread here.

ETA: Another example:


This is obviously not new, but it has definitely escalated lately. Hugely problematic, in my opinion :(


There are ME advocates who are doing a great job indirectly responding to this by, for example, publishing blog articles on how to best support pwME who have suicidal thoughts (based on Lifeline Crisis Center's article by Dr Lily Chu) and raising awareness about this on social media etc:

Nattsvart? Om självmordsprevention vid ME…
https://mitteremitage.wordpress.com/2019/03/17/nattsvart-om-sjalvmordsprevention-vid-me/
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Thanks for your post @mango!
I agree!! It's very disturbing to read the various statements from these self proclaimed healers, especially when they accuse people who stick to the facts (us) of driving people into depression and suicide.
My understanding is that more often it is false hope being crushed that causes people to plummet into despair.

It feels even worse than when it's coming from the psychobabblers, because these people were once ill themselves. We are on the same team. You would expect some empathy and understanding rather than being stabbed in the back like this. :(

There must be something not quite right with this Billö woman, going round attacking people who are ill after getting well herself.
In her case I think it's not just money, but also getting some twisted satisfaction from insulting and hurting people, making them feel inferior because they are ill. Rather sadistic actually. (The psychologist in me can't help but to speculate about behaviors like this! o_O;)
)
 
Deja vue all over again. It's just like 1990ish. There were times when it was almost possible to sympathise with SW and co in view of some of the opinions expressed by people who may not have been particularly well grounded in "reality".
 
Anna H said:
Thanks for your post @mango!
I agree!! It's very disturbing to read the various statements from these self proclaimed healers, especially when they accuse people who stick to the facts (us) of driving people into depression and suicide.
My understanding is that more often it is false hope being crushed that causes people to plummet into despair.

It feels even worse than when it's coming from the psychobabblers, because these people were once ill themselves. We are on the same team. You would expect some empathy and understanding rather than being stabbed in the back like this. :(

There must be something not quite right with this Billö woman, going round attacking people who are ill after getting well herself.
In her case I think it's not just money, but also getting some twisted satisfaction from insulting and hurting people, making them feel inferior because they are ill. Rather sadistic actually. (The psychologist in me can't help but to speculate about behaviors like this! o_O;)
)
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To a certain extent I find it understandable, when someone finds something that works (or they are convinced works) then they want to spread the word, because obviously, to them, it's important that this information of how they improved be spread far and wide. But the evangelical types rarely seem to consider all the possible nuances in their over-enthusiasm; that they might be wrong, that they might have been mis-diagnosed, that their treatment might be dealing with a co-morbidity instead. When I had my gallbladder removed I was determined to be cautious in how I talked about my subsequent improvement and, sadly, it looks like I was right to do so; I'm still better than I was before my operation but I still crash when I over-exert myself, so I still have ME, and my gallbladder challenges were a co-morbid issue.

And to go back to the evangelical types, when someone suggests an alternative explanation, or presents evidence that contradicts their story, they take it personally because they feel that they are being attacked, and then things can get even messier should they 'attack' back in response.

All my own opinion of course.
 
Opinion piece today in one of the largest online newspapers. Björn Bragée of Bragée ME-center writes that ME "is not incurable, nor does it have a grief-stricken prognosis"... "At half-year follow-up, patients sometimes cancel because they are recoved, and every fifth younger patient can return to normal or almost normal life without sick leave after the right efforts in care." :grumpy: But there are some good bits in there too.

"There is hope for people with ME"
https://www.aftonbladet.se/debatt/a/Qo0mP8/det-finns-hopp-for-de-me-sjuka
 
Andy said:
To a certain extent I find it understandable, when someone finds something that works (or they are convinced works) then they want to spread the word, because obviously, to them, it's important that this information of how they improved be spread far and wide. But the evangelical types rarely seem to consider all the possible nuances in their over-enthusiasm; that they might be wrong, that they might have been mis-diagnosed, that their treatment might be dealing with a co-morbidity instead. When I had my gallbladder removed I was determined to be cautious in how I talked about my subsequent improvement and, sadly, it looks like I was right to do so; I'm still better than I was before my operation but I still crash when I over-exert myself, so I still have ME, and my gallbladder challenges were a co-morbid issue.

And to go back to the evangelical types, when someone suggests an alternative explanation, or presents evidence that contradicts their story, they take it personally because they feel that they are being attacked, and then things can get even messier should they 'attack' back in response.

All my own opinion of course.
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Yes, this is exactly the problem with “evangelists“, missing out an all other possible explanations for improvement/recovery. Agree with the ones you list, and when it comes to ME-patients, I would also add looking more closely at how the patient actually got along early on, getting the proper necessary rest, avoiding a long run of push-crash, if doing things “right”. As we know that is often not the case, cause of the combo of no sound advice and the ability to push forward. It is my personal opinion, based on personal experience and all the “recovery” stories you read, that you cannot underestimate the early on approach, that today, with the unsatisfying knowledge situation, most peoples ability to push on and a couple of other factors, has a lot to do with random luck. That’s not appropriate. I’m afraid I have no statistics or documentation, but still think it is fair to state from what we know, that early on approach are utterly important for improvement/recovery. We need to learn from that in a systematically way.

To some extent you can understand and excuse a “evangelist“, but what is more worrying are presumably trained physicians missing out on all important nuances when pushing LP or other pseudoscience. That speak volumes. It is either an expression for pure incompetence and/or for some sort of irrelevant and personal agenda.
 
mango said:
Opinion piece today in one of the largest online newspapers. Björn Bragée of Bragée ME-center writes that ME "is not incurable, nor does it have a grief-stricken prognosis"... "At half-year follow-up, patients sometimes cancel because they are recoved, and every fifth younger patient can return to normal or almost normal life without sick leave after the right efforts in care." :grumpy: But there are some good bits in there too.

"There is hope for people with ME"
https://www.aftonbladet.se/debatt/a/Qo0mP8/det-finns-hopp-for-de-me-sjuka
Click to expand...

Ok, I’m mixed with this Bragee. As far as I know, he’s quite a familiar guy in Sweden. Don’t know if that is good or bad, but he surely gets attention. He’s quite a new player in this field. Bringing some freshness may be good, but he seems somewhat over-optimistic and quite categoric in his rethorics. Been very vocal on the CCI-thing, not to forget that he last year stated something like: all ME-patients are to some extent depressed, but they won’t admit it?

Ouch.. Don’t know if being new to the field and making such a incompetent statement is a good start. Bragee has set himself in quite a difficult situations when it comes to credibility.

That said, it is not surprising that he’s trying to bring some positive spin upon the series of suicide. Bringing some kind of hope to new and young patients is probably good. Although he throws numbers from somewhere we don’t know, I agree that hope must come across to the new ones, as long as it is stressed without doubt, that it requires adequate actions from day one, pacing and such.

It’s a pity, that this is exactly what we have struggled with for decades, not implementing even the easiest of advice that can make important impact for patients. For many patients, those who have been sick for years, not having what Bragee now says they can manage, it is a little ironic, maybe? Guess old patients given-up long time ago can’t expect much? Won’t say that an excuse from medicine about getting it completely wrong with big consequences would be of value, but still. An excuse is a powerful thing.
 
Andy said:
To a certain extent I find it understandable, when someone finds something that works (or they are convinced works) then they want to spread the word, because obviously, to them, it's important that this information of how they improved be spread far and wide. But the evangelical types rarely seem to consider all the possible nuances in their over-enthusiasm; that they might be wrong, that they might have been mis-diagnosed, that their treatment might be dealing with a co-morbidity instead. When I had my gallbladder removed I was determined to be cautious in how I talked about my subsequent improvement and, sadly, it looks like I was right to do so; I'm still better than I was before my operation but I still crash when I over-exert myself, so I still have ME, and my gallbladder challenges were a co-morbid issue.

And to go back to the evangelical types, when someone suggests an alternative explanation, or presents evidence that contradicts their story, they take it personally because they feel that they are being attacked, and then things can get even messier should they 'attack' back in response.

All my own opinion of course.
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I totally agree and understand that you would want to spread the word about something that's worked for you, and I agree about those evangelical types.

What this Billö woman does however, is attack people when they tell her they have tried everything she recommends but they are still ill, or share facts about recovery rates, and accuse them of wanting to be ill, not trying hard enough, not doing it right, playing the victim etc, and now even goes so far as accusing the patient organization of driving people to suicide by sharing common facts about ME as stated in the OMF report.

That's not evangelical to me, it's something else. Another example is Dr Henrik Vogt, the founder of Recovery Norway, who accused the ME-community for causing the horrible family tragedy in the small town Bjärred in Sweden last year, involving the deaths of two children with ME.
 
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A nice article from the journal of the Danish Union of Journalists about how the small, local paper Esbjergs managed, through investigative, critical journalism over time, to lift ME up on the national agenda.

In a number of articles, the weekly newspaper has revealed how the disease Myalgic Encephalomyelitis, ME, is not recognized by the Danish health care system - and how it has major consequences for one woman in particular.

The disease ME is a chronic fatigue syndrome, which affects the nervous system, the immune system and the hormone system, but also affects the brain, gastrointestinal flora and muscle energy production.

"It was typically such a case where a small newspaper might think that we are not able to do this, but when I had seen the documents, I simply could not refute it," says director and editor-in-chief of Ugeavisen Esbjerg Erik Haldan about the coverage that has also recently had political consequences.

Journalisten: Sådan satte Ugeavisen Esbjerg dagsorden landet over med to års graverarbejde
google translation: This is how the weekly newspaper Esbjerg set the agenda across the country with two years of investigative journalism
 
mango said:
In short, their message is that everyone who has ME can recover, if only they want it badly enough, if only they try hard enough. The most commonly recommended methods are healthy eating habits, positive thinking, "detox" (expelling radiation, getting rid of metal contamination etc), stress reduction, supplements, mould avoidance, breathing techiques, "guided self-healing" etc.
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Hey, would you look at that, it's the exact same message that BPS/FND/MUS ideologues promote. What a coincidence, that one pseudoscience looks like all the other pseudosciences.

I'm sure that will bring about serious self-reflection. Hahahaha. Good one.
 
Trigger warning: sectioning, death.

Rest in peace, Lotta Wirström Fd Karlsson.

In her last two Facebook posts she writes about being sectioned against her will after refusing to take a particular kind of anti-depressant she had been prescribed, because the anti-depressant made her severe ME deteriorate very badly and caused new symptoms. The psychiatrists lacked knowledge about ME and misinterpreted her lying in bed as being severely depressed. They wanted to give her electroconvulsive therapy against her will. She was terrified of the harm all this was causing her.
Lotta Google Translate said:
Now I don't dare think about what will happen to my body and brain How much more the healthcare has destroyed ... I will suffer a lot and not be able to write more here...
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This happened recently in Stockholm, a city that has two biomedical ME centers.

:cry::cry::cry:

(I didn't know her personally and I don't have any more information. Please don't send me PMs to ask questions, I don't have any answers.)
 
Kalliope said:
A nice article from the journal of the Danish Union of Journalists about how the small, local paper Esbjergs managed, through investigative, critical journalism over time, to lift ME up on the national agenda.

In a number of articles, the weekly newspaper has revealed how the disease Myalgic Encephalomyelitis, ME, is not recognized by the Danish health care system - and how it has major consequences for one woman in particular.

The disease ME is a chronic fatigue syndrome, which affects the nervous system, the immune system and the hormone system, but also affects the brain, gastrointestinal flora and muscle energy production.

"It was typically such a case where a small newspaper might think that we are not able to do this, but when I had seen the documents, I simply could not refute it," says director and editor-in-chief of Ugeavisen Esbjerg Erik Haldan about the coverage that has also recently had political consequences.

Journalisten: Sådan satte Ugeavisen Esbjerg dagsorden landet over med to års graverarbejde
google translation: This is how the weekly newspaper Esbjerg set the agenda across the country with two years of investigative journalism
Click to expand...
The comments are worth reading. A Pia M. Pedersen gives an extensive overview of Fink's background, influence and funding.
 
mango said:
Trigger warning: sectioning, death.

Rest in peace, Lotta Wirström Fd Karlsson.

In her last two Facebook posts she writes about being sectioned against her will after refusing to take a particular kind of anti-depressant she had been prescribed, because the anti-depressant made her severe ME deteriorate very badly and caused new symptoms. The psychiatrists lacked knowledge about ME and misinterpreted her lying in bed as being severely depressed. They wanted to give her electroconvulsive therapy against her will. She was terrified of the harm all this was causing her.



This happened recently in Stockholm, a city that has two biomedical ME centers.

:cry::cry::cry:

(I didn't know her personally and I don't have any more information. Please don't send me PMs to ask questions, I don't have any answers.)
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This was horrible news, indeed. This should not happen in 2020, misinterpreting severe ME for depression!

Would you like to make a thread in Lotta's honour at the in-memory-of forum?

https://www.s4me.info/forums/in-memory-of.31/
 
mango said:
Rest in peace, Lotta Wirström Fd Karlsson.
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Horrible news, my condolences to the family.

mango said:
The psychiatrists lacked knowledge about ME and misinterpreted her lying in bed as being severely depressed. They wanted to give her electroconvulsive therapy against her will. She was terrified of the harm all this was causing her.
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This makes the recent interview with Anthony David in the Times very grim reading material. He talked about a girl diagnosed with severe ME and noted "these people suffer from real physical illnesses that have their root in the mind." The girls was given electroconvulsive therapy and was said to be able to walk again afterwards.
https://www.s4me.info/threads/uk-ti...our-mind-feb-2020-rumbelow-includes-me.13601/
 
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