News from Scandinavia

The article actually makes some good points outlining some problems in the field. Such as that if patients don't have an 'accepted' diagnosis they'll struggle to get support no matter how badly their functionality is affected. And the reason many don't receive an 'accepted' diagnosis is that every doctor and every different part of the health and welfare system all have different ideas about what constitutes 'proper' illness that fits an 'accepted' diagnosis.

The writer is less convincing on the MUPS definition. He appears to argue (overly optimistically IMO) for viewing the term MUPS in its literary sense: a condition we cannot explain - yet. He thinks MUPS shouldn't be viewed a wastebasket diagnosis - a wastebasket is where you throw stuff you want to get rid of - but as an odds & ends drawer - somewhere you place things you don't know where else to put right now but that you want to sort out one day. So I agree up to a point, being an odds & ends is marginally better than being waste but if my own odds & ends drawer is anything to go by, that sorting out the odds & ends is not going to happen any day soon. Plus there is the minor problem that a rather large number of people do not use the term MUPS in the literary sense which surely the writer must be aware of. And finally there is the matter of ME being included in MUPS - just how medically explained do you have to be before you cease to be medically unexplained?

I can't quite make out the writer's stance on Bodily Distress Disorder. On the one hand he seems to, possibly maybe, view it as an attempt at giving patients a diagnosis that will make them eligible for support. On the other hand his last sentence seems to express reservations.

PS: The Norwegian version of the MUPS acronym is interesting: medisinsk uforklarte plager og sykdommer:

medisinsk uforklarte - medically unexplained

plager - can mean anything from mild bothers to major plagues

og sykdommer - and illnesses (! illnesses, not symptoms)

 

TL;DR The Swedish patient org RME is no longer biomed only, they support bps too

For many years RME, the Swedish ME patient organisation, used to be biomed focused, used to take a firm stand against bps. However, the last couple of years something has changed (not through the democratic process, but at the top/among the board of directors), and although many members have fought immensely hard against it, RME is now openly supporting some controversial bps research projects — the very same projects that RME strongly and actively opposed just a few years ago, citing bad science and risk of harms.

RME had their annual meeting today. A number of members found it necessary to write a motion, to formally ask RME to define their values and take a stand against bps by adding it to RME’s policies.

I’m immensely sad to inform you that the meeting voted down the motion :’(

This is the formal wording of what the representatives at RME’s meeting said no to:

"We propose that RME recognises that the biopsychosocial model of ME/CFS is unfounded, misleading and unhelpful; and that RME therefore firmly distances itself from treatments, research, healthcare structures, healthcare politics etc that are based on the biopsychosocial model."

It was revealed at the meeting today that the board had gone to great lengths to try and stop the motion from even being addressed at the meeting, trying to find loopholes in order to bypass the democratic process. They had actually sought legal advice — in secret, without informing the signatories — trying to find out if they could possibly declare the motion invalid since it had been signed not only by many members but also by a few former members (several of them waiting to hear RME’s response to the motion, before deciding whether to renew their membership or not). The attempt to block the motion was put to a vote at the meeting, and was fortunately voted down. Also, the board had a pre-meeting behind closed doors where they discussed the motion with the voting representatives, but the spokespeople for the motion weren’t invited. The board apparently really really didn’t like the motion..!

RME’s tactics and rhetorical choices along the way have made this debate unnecessarily difficult, non-transparent and undemocratic. Another example is the fact that RME has permanently closed down their members-only Facebook group, which means there’s nowhere for members to connect, discuss and share info. There was a motion about opening the group up again, but sadly it too was voted down.

Another issue is that RME has tried really hard to make this be about rhetoric, words and terms instead of science, facts and the real world consequences and challenges that pwme face every day. Criticism of specific issues such as bad science, iatrogenic harm, stigma, discrimination etc are brushed away with arguments like “but mental health, psychosocial support and psychologial research are very important”, which obviously is completely beside the point. This has made it extremely difficult for members who aren’t already well informed to follow the discussions, especially since RME is constantly twisting their words around and using alternative meanings for well-known terms — in misleading ways, one could argue — like pretending that bps in the context of ME is about “coping with one’s changed life situation”. Or arguing that criticising the bps model of ME means you'll be perceived as irrationally anti-psychiatry and therefore lose all your credibility, (as if there aren’t any scientific or factual arguments against it). Etc.

Also, RME has for some time now been actively bashing members and others who criticise said bps projects and other bps related issues, in an openly hostile manner such as making public statements in newsletters and at formal meetings, for example by falsely accusing people discussing the research plan of spreading hate and propaganda(!), and falsely claiming that the criticism of the inherent problems of the bps model is not based on facts nor science. (There’s a lot more to this, bullying etc, but I won’t go into the details here…) Please fact-check and use your critical thinking skills and when you come across such statements.

Personally, I don’t support organisations that support the bps model of ME. Therefore, I can no longer support RME. Silence tends to imply agreement, so this is me clearly stating my position. I strongly believe that this change in direction is deeply harmful to the whole ME community, on many levels. I’m absolutely gutted.

I would be very interested to know what Invest in ME, EMEA, ME Action, OMF and other organisations/groups that often collaborate with RME think about RME’s new direction. And whether RME will be open and transparent towards them about this change of theirs?

Please note that this change might possibly also affect RME’s fundraising efforts. The money donated to their resarch funding account used to go only to high-quality biomedical studies, but now… who knows?

RME has lost and pushed out (more or less directly) lots of brilliant, experienced, knowledgeable and skilled people over the last couple of years, because of this difference of opinions/values/aims and the conflicts they have led to. Lots of these people are now looking for other ways to contribute and re-join the fight, outside of RME. After today’s meeting, I suspect RME will lose even more people. This division obviously harms the Swedish ME community as a whole, but sometimes you’ve got to walk away… Enough is enough.

 

Sorry to hear that it came to this Mango

 

I'm so sad and angry about the situation @mango is describing, but it's important that people with ME arounds the world get to know the truth. The situation is serious and I suspect it will get worse for all people with ME in Sweden now. We have to continue fighting for better science and better healthcare for pwME in other ways, because ot me this is unacceptable and I won't be a member anymore.

 

Sounds like it's time to drop them, they clearly do not represent their members' interests anymore.

It's sad but not uncommon *cough*A4ME*cough*. Sometimes organisations stray from their original mission and become all about their own survival, even when the stakes are this high and the consequences are obviously harmful.

Not universal but...

 

@mango

Can you start a new organisation with people who have a more appropriate view of ME?

 

Almost all of us are all severely ill Maybe not impossible, but would definitely not be easy.

 

I feel like this deserves its own thread

It's important that everyone sees this.

Thank you for your effort !

 

Sorry if my suggestion of using 'biopsychosocial' as a term caused problems. It's so difficult to explain things precisely and clearly. I probably should have avoided any language that would not be widely understood by everyone there, with the priority being getting something through rather than something with water-tight language.

Who were the 'voting representatives'? Is it not that all members there got to vote themselves?

 

No no no, none of your excellent suggestions caused any problems at all! They were super helpful and really made things better, easier. Very much appreciated And I really do honestly and genuinely mean that.

The term 'biopsychosocial' was the obvious choice, no regrets. It's the term that we've always used, the term that RME has always used up until now (both in internal and external communication), that is used in research papers and news articles and government reports, in the debate on social media and in opinion pieces etc.

We discussed the possibility of using a different term -- "the cognitive behavioural model of ME", "the fear avoidance theory for ME", "the treatment model CBT/GET for ME is based on", "the psychogenic model of ME" etc -- but agreed that it would be really weird to try and come up with and define a different term for this motion just because RME suddenly decided that they weren't going to use the term "bps" anymore (or just not in relation to this motion? who knows...).

The term was never the problem, it's the rhetoric and the tactics used by the people opposing the motion, intentionally using weasel words to muddle and distort the debate -- and I believe that would have happened regardless of the term.

Do remember that many of the signatories of the motion are people who for years have been working closely together with the people now opposing it. It's not that there are two separate groups of strangers, speaking different languages, coming together in a clash; it's a rift from within.

The voting representatives (sorry if that's the wrong term in English) are a number of people/members representing each regional chapter of RME. Each RME member belong to a regional chapter, and it's either the board of the regional chapter or the members attenting the regional chapter's annual meeting that elect the representative(s) that are allowed to vote at the annual national meeting. The more members a regional chapter has, the more representatives they are allowed at the national meeting. The national board of directors aren't allowed to vote at the annual national meeting.

So, in order to have a say as a member you would have to try and get in touch with the appointed/elected representative of your regional chapter in order to try to convice them. When my representative was contacted about the bps issue, they replied that they didn't have time nor resources to read up or have an opinion about it, because they prioritise/only focus on regional issues...

 

I don't think RME will be happy when they find out that this is being discussed publicly. They are very very big on sweeping things under the rug. I kind of made a half-hearted attempt at "hiding" the post here deep into the thread, hoping that it will take them just a little bit longer to discover it...

Chances are they will perceive this as a hostile attack against them, but that's not my intention at all. I simply want people to know what's going on, so everyone can make their own informed decisions. They've had more than 2 years to tell everyone about this change, but they've chosen not to. It really needed to get out in the open.

We gave it our absolute all, but sadly it wasn't enough this time, under these circumstances.

I'm absolutely shattered, I'm just hoping for a bit of rest now.

 

Sorry to hear that the organisation has taken an ill informed view.

But it sounds as if at least the problem is out in the open. And I suspect the organisation will shrivel away if this is the road it wants to take. Maybe something better can rise up in its place.

I think the Vink and Vink-Neise review just out can remind us that things are moving unstoppably in the direction of transparency. It seems so ironic that a national organisation should go in the opposite direction at this time. This smells of parochialism to me - local chapters, local busybodies, and so on.

 

Oh @mango, how sad and frustrating for you. Sending you big hugs from Liverpool. (where we actually have a Swedish Church, never been inside it, but the outside is beautiful.)

 

I will probably make people very angry for writing this but the situation is this: One of the specialist clinics for pwME in Sweden claims to be biomed but is ver much bps. They are involved in at least one bps study, that you can read about here. A couple of years ago RME opposed this study publicly but now, they claim that they can't be against it and even wrote in a letter to members that

"On the other hand, as a patient organization we cannot or should not distance ourselves from a study approved by the ethical committee" ("Däremot varken kan eller ska vi som patientorganisation ta avstånd från en studie som godkänts av EPN").

In the next section they wrote

"Therefore, RME's members need to participate in the approved studies that are ongoing and planned" ("därför behöver RME:s medlemmar medverka i de godkända studier som pågår och planeras" sorry for poor translation)

This means that despite that fact that this study is about getting people to increase activity levels RME is now openly urging members to participate in it. Yesterday's decision to dismiss the motion about having a policy to not support BPS isn't only a formal decision, it's something that is already implemented.

I really hope you are right and that the organization will shrivel away. However, I'm really scared about how this will affect us before that, because this clinic and RME:s support of it and support of BPS means that risks of iatrogenic harm are high.

 

Could you say something more about the research RME is now supporting or what issues are causing the divide? Is it about GET/CBT, the broader issue of the biopsychosocial model or some other project like ACT?

 

@mango, thank you for informing us about what has happened in RME. I´m really sorry. I could never believe this would happen as RME for many years have had excellent annual conferences (video-recorded as many of you know) with world-renown speechers like Maureen Hansen, Jo Cambridge, Drs. Fluge and Mella, Kenny De Meirleir, David Bell, Dan Peterson, Tony Komaroff to name of few of they who lectured. How is it even possible to change the policy of RME with all these convincing representatives for the clearly biomedical stance?

I suspect psychologists have altered the policy to claim the ME territory as theirs, as the psychatrists did in the UK, and as many of them tend to do in clearly physical diseases. Notable is that they mostly talk about CFS, not ME/CFS. I guess it´s a way to avoid criticizm when it comes into details about symptoms etcetera.

@Clementine , I´m trying to find out what ME-clinic is considered having a (partly?) non-physical approach. I think it would be good to have it published here to make the discussion more transparent. I think it´s up to them to defend their work, and tell us that we are wrong- if we are. Thanks for your information.

 

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?

 

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.

I presume that people on the board of the organisation have for some reason swallowed the idea that BPS informed research must be good for patients. That is no surprise because the do-gooder instinct is all pervasive. The only trouble is that do-gooding needs to be backed up by competent scientific methodology.

This whole can of worms is so much bigger than I ever expected when I first got involved. But every day things are more out in the open. Sooner or later the Emperor's nether regions will be in full sight.