News from Scandinavia

Musikern Jonas långa och svåra väg tillbaka från ME (5:30 min)
https://sverigesradio.se/artikel/musikern-jonas-langa-och-svara-vag-tillbaka-fran-me

 

My impression from listening to Jonas' story is that he recovered partly because he was diagnosed early, within a year if I got that right, and that he subsequently did everything right in terms of pacing. And had the means to rest properly during those first years.

Exactly what some ME clinicians recommend for having the best prognosis - early diagnosis and then adequate amount of time to rest and recover. Unfortunately many of us don't get that opportunity, mainly due to the health care and social security systems that are supposed to help us but instead often force us to exert ourselves beyond our limits.

My thoughts is that this guy was in a privileged position, or just lucky, not having to worry about finances or contend with Försäkringskassan (the Swedish agency for approving sickness/disability benefits).

I was doing really well and had improved a lot when Försäkringskassan decided to deny my application for sickness benefit despite what my doctor recommended. That stress and over exertion caused my health to plummet radically and I went from moderate to severely ill. What if I had been able to just keep taking care of myself? Would I have kept improving?

Jonas recovery story also made me think of a friend of mine: She became unreasonably fatigued and felt unwell after a travel to an African country where she got some infection, and having had the svine flu vaccine. This was a few years before I fell ill.

She went through lots of medical examinations for a period of two years or so. Looking at her heart, checking for sleep apnea etc. She met a neurologist.
During this time she was barely able to work, having a blue collar job with the government. She had a lot of sick days and flexible hours, came in late in the mornings, she slept in a designated room during extended lunch hours. At home she collapsed and just slept and rested. She also hade the means to eat out or order food so she could just rest during her spare time. I often visited her on the weekends during this time, bringing a movie and take away food. We just relaxed in her sofa and watched a film. She often fell asleep during the film or was to tired to talk

Anyway, after about two years she started to feel slightly better, enough to take some walks in nature on the weekends. Just before this time her GP had suggested she might have chronic fatigue syndrome (the words he used) since they found nothing else wrong, and that the next step might be a referral to an ME-clinic (I think it was at Danderyd at the time).

But as she started to feel better she didn't pursue any more medical investigations, she didn't feel the need I guess, and that GP left. Over the years she continued to improve and lives a pretty normal life today. But she often feels tired and after periods of much work and /or travels and social activities she feels like she's getting a cold, except she rarely does.

I've suggested to her that she might have hade ME and recovered to an almost pre-illness level.

I guess I kind of saw some parallels between my friends health journey and Jonas recovery .
Not sure it's relevant , just wanted to share my thoughts.

 

Article in the Swedish journal of neurology about the new NICE guidelines for ME/CFS (published December 2021).

NICE nya riktlinjer förändrar synen på ME/CFS
https://neurologisktidskrift.se/sjukdomar/48-nice-nya-riktlinjer-forandrar-synen-pa-me-cfs.html

Google Translate, English ("NICE new guidelines change the view of ME / CFS")

The vice chair of the Swedish ME Association is quoted, as is bps doctor/researcher Indre Bileviciute-Ljungar.

 

Can't remember where it was posted, but a Norwegian publication (not sure if Dagbladet is supposed to be serious or a rag like DailyMail because it really seems like the latter) published a good article on a ME sufferer a few days ago, from which most of the good content was edited and replaced by gushing over LP. Clear political influence, hence why I really wonder if Dabladet is a bottom-feeding rag, because it's too clumsy.

I can't read from the image but basically they seemed to have removed everything good:
https://twitter.com/user/status/1489260900016005127

 

Dagbladet has worked their way down towards being one of the most tabloid of the tabloids, if not THE most tabloid newspaper in Norway, over the last decade or so. 15-20 years ago they were a competetive mediocre newspaper, eh.

They removed most of what contextualized and supported the interviewed woman, like comments from her advocate, a law student, the Norwegian ME association and a ME-specialist doctor, as well as info on the new NICE guidelines, info on biomed science and a fact box on ME that was surprisingly good. Before the text was slaughtered it was very unlike Dagbladet, now it's more in tune with what they have served up during the last years, topped with a big box of "numbers to call if you struggle with mental health" and a link to a recovery story from LightningProcess/RecoveryNorway at the bottom.

Hopefully they might be complained in for a breach of code of ethics to PFU (Pressens Faglige Utvalg). At least this case demonstrate for everyone (the Wayward machine included) how scummy they are in their coverage of ME/cfs.

 

For those who might not follow. Alexandra Beverfjord is the Editor-in-chief of Dagbladet.

https://www-dagbladet-no.translate.goog/pluss/bedrift?_x_tr_sl=no&_x_tr_tl=en&_x_tr_hl=en-US

Dagbladet is owned by a Danish company -- Aller Media AS

https://www.aller.no/

 

Nina Steinkopf has now written a blog post about yesterday's newspaper drama in Norway.

English google-translated version:
https://melivet-com.translate.goog/...l=auto&_x_tr_tl=en&_x_tr_hl=no&_x_tr_pto=wapp

Original Norwegian version:
https://melivet.com/2022/02/04/dagbladet-svikter-me-syke-igjen/


Quote from the text:
"Terese contacted Dagbladet and was informed that the reason why this was edited away is because Dagbladet does not support the view of these sources. She was informed that Dagbladet believes in research and that the ME association does not believe in all of the research. The ME association stands for something Dagbladet does not stand for and therefore it had to be removed.

Dagbladet writes on Twitter that: "After the article was published on February 2, the case has been edited to make it more balanced and focused.".

 

If we are not there we are getting to the point where presenting information this way and using someone to highlight that information when they do not agree is a form of disinformation that should be actionable.

There has been some movement in that area. Recently spotify with it's Joe Rogan dis-information. I think the people sharing this wrong information don't bother to even know what's really true and accurate and see this as just different opinions from which they can choose. I think it's time to start collating the misinformation and making formal complaints carefully and thoughtfully. Testing the water and developing a strategy to counter this abuse of the facts.

This young woman certainly has a right to at least go on their twitter feed and disagree with what they've written about her.

 

Does the writer not have any avenue of complaint for this bowdlerisation of her work? Once it has survived initial editing and published it is late in the day to alter the impact.

 

I expect that this is all new territory for most / all of us here. I certainly don't blame the young woman for whom this is probably not an area of advanced knowledge and she's just trying to manage being ill.

I think having an advocacy resource that people with ME can turn to (however imperfect but with an effort to get it right) might be useful. I'm thinking of lists. A list of journalists who have written untrue / disingenuous / altered from the agreed focus information and a list of newspapers and their editors that support that.

And then kind of like what we do with research papers, go through an article and fact check it line by line and make that available. It might require some brief guidelines and a format. And it might have the advantage of using a different critical analysis skill set so that no science people could maybe contribute more or in a different way.

 

Elias Bjärgvide, who was diagnosed with ME following a covid-19 infection, and who has repeatedly appeared in RME's (the Swedish ME Association) most recent awareness campaign, is sharing his seemingly positive experence with DNRS as a treatment for ME, on his personal Instagram account.



Earlier posts about Elias in this thread here (RME's awareness campaign trailer), here (radio interview) and here (news article).

Here's RME's awareness campaign video featuring Elias:

https://www.youtube.com/watch?v=bPXOVdLcN1U

(Edited to fix spelling mistakes.)

 

More RME awareness campaign material featuring Elias, published 3 months ago almost to the day. In his Instagram post linked above, posted today, Elias writes "Three months ago I attended a course in DNRS".

 

Another op-ed from Danish ME clinician and researcher, Dr Jesper Mehlsen, and psychologist, Peter La Cour (also at Mehlsen's clinic), published Feb 10 in the Kristeligt Dagblad daily newspaper: https://www.kristeligt-dagblad.dk/d...svigter-personer-med-kronisk-traethedssyndrom

It is eloquent and to the point as per usual, although it does not bring much of any new arguments to the table. Unfortunately paywalled, so in super brief summary:

- The authors criticise the failure to implement the 2019 parliament motion on ME, which sought to implement WHO classifications and, crucially, separate the diagnosis from the 'functional disorders' (or 'functional somatic syndromes') umbrella term. This hasn't happened, even though the Danish Health Authority and the Health Ministry continue to claim so.
- They point out the opposition to following the updated NICE guidelines, arguing that current Danish policies have no scientific validity.
- A fairly large section deals with the faults of the 'functional disorders' concept, pointing to the practice of self-referencing and particularly criticising the current entry - authored by Per Fink - on ME/CFS in the official Danish 'clinicians' handbook', available here: https://www.sundhed.dk/sundhedsfagl...me/oevrige-sygdomme/kronisk-traethedssyndrom/ (Google Translate if you dare...)
- As a summarising point, the authors call the whole debacle a "veritable health scandal", which, they speculate, would have flown under the radar only due to the pandemic. The last paragraph warrants quoting in full:

"It is high time that the contrarian administration of the parliament motion by the Danish Health Authority be publicly scrutinised. They must follow the rules. Anything else is to make a mockery both of our democracy and of international medical science." (my translation)
"Det er på høje tid, at Sundhedsstyrelsens kontrære og modsatrettede administration af folketingsbeslutningen kommer under offentlig lup. Man må følge spillereglerne. Det modsatte er at gøre grin med både folkestyret og med international lægevidenskab."
​

ETA Feb 16: The op-ed has since been made open access, same link as above.

 

I looked a bit at that.

It says "bodily distress disorder" is a term used to refer to ME/CFS.

It says the illness is determined by cultural factors, that the illness is only seen in some countries and that prevalence in the US is sharply declining. No references are given if I remember right.

It also seems to say that there is no relationship between infection and ME/CFS. This could be a translation error.

It says antidepressants are effective. The reference given is study of bodily distress disorder patients.

Looks like it contains a lot of misinformation.

 

With Per Fink giving advice, it's not surprising that Denmark is acting like long covid doesn't exist.

 

Indeed, that page is replete with misleading and false information and astonishing that no effort has been made to correct this in the wake of parliamentary pressure. But no wonder clinical practice is not improving when this is what doctors are led to believe.

Bodily distress syndrome (to be precise) is indeed the diagnosis of preference under the 'functional disorders' ideology (as I think is a fair description).

Afraid that's not a translation error about viral triggers re ME. In fact, Mehlsen and La Cour pointed out this specific detail in their op-ed, citing evidence that 60-80% of cases follow an infection (I haven't seen the web version so don't know if that includes references).

Also of note is the fact that the text cites the CDC diagnostic criteria -- but crucially the pre-2018(?) outdated version, excluding PEM etc. I once pointed this out to the editor but was told they do not reply to feedback from users.

 

I wonder how many cases of disability from ME/CFS secondary to covid can be attributed to Per Fink's false claim that there is no relationship between infection and ME/CFS. Maybe none because the decision to withdraw the anti-covid measures wasn't based on this information. Maybe it was central.

 

Thanks for checking @strategist and pointing out this blatant disregard for accuracy. I'll use your points to make a few of my own in response to these fantasy facts.

As we know making any claims about prevalence over time declining is fraught with trouble in terms of how this is being measured. I would think in the past that less strict criteria were used (Oxford, Fukuda etc) as ME was seen as a single symptom of chronic fatigue. Even so the true prevalence of ME proper is likely higher than indicated as many go undiagnosed although it can go the other way where some are diagnosed who have been found to have other diagnoses. So what are the prevalence numbers and how sure can we be of their accuracy. It seems that the BPS people sort it out by just making whatever claim suits them.

As to ME not being found world wide we don't really have good data for that either but I can point to one piece of info that might help:

From: https://journals.sagepub.com/doi/abs/10.1177/1359105307076233

So there are factors around determining ME in some countries that complicate accurate knowing. Although we do know there are ME advocacy organisations around the world (Japan, South Africa for example*) but for non-english speaking countries it would be more difficult to no the situation. Although we also have here at S4ME a sample of people from various countries where not much is heard from in terms of ME.

As for any relationship to infection and becoming ill -- I don't know of any scientific data linking the two but there is a very large body of self-report. I'm not sure that is useful and I suppose that we shall have to wait and see but I can understand why they would not want this to be the case.

Given that the BPS take a wide view of things -- ME is part of Bodily Distress disorder it is impossible to say with clarity that antidepressants work on PwME as any group of people trialled would no doubt include people with other health issues including depression. The BPS continue to see ME as BDD because they see it as a mental health issue.

But none of this matters in a way. Whatever physical evidence is found and replicated adequately it is fair to say that mental health issues have their own physical findings if one knows where and how to look. So this proves nothing.

To me the real issue is in understanding mental health. There are people who might benefit from some psychological intervention. In my opinion these are people who could just as easily do well by having someone they trust who knows them well and have a strong relationship with talk through issues of living that we variously face. Yet for those who have such issues they are often without such support which is why these issues are more difficult.

For thee rest these are people who don't face any particular challenges that would be too insurmountable normally but have some brain chemistry that has gone awry and cannot function as they normally would. Even here some 'talking' may help somewhat but the real issue is a physical one that would be helped by intervention.

My point being that much as the BPS like very much to include everyone in a BDD diagnosis who may have various neurological diseases they do the same in mental health. This is also a large tragedy for those who need better care and medical help particularly. There is of course more nuance than I can manage here.

* my examples from around the world: https://mecfsjapan.com/ https://mecfssa.org/