The Swedish Parliament supports motion about targeted ME/CFS research

[mango]

Two politicians, Finn Bengtsson and Adam Amir, recently submitted a motion/proposal to the Riksdag (the Swedish Parliament). The proposal is titled "Recognition and support for patients affected by ME/CFS and IBS".

The Riksdag is supporting the proposal for targeted research into these diagnoses, and will be putting the proposal forward to the Regering (the government).

The proposal is available in Swedish here:
http://www.riksdagen.se/sv/dokument-lagar/dokument/motion/_H402282

Lots of it is great, for example (sloppy translation):

We believe that these people and their families have been unduly disparaged and deprived of resources from the public research funding, compared to how other public health afflictions' opportunities to gain support for their knowledge development have been fostered.

They write about scepticism among care providers, about the reluctance to accept new findings ("sometimes even prejudiced against the medical knowledge development, which risks transmitting a negative attitude to political decisionmakers and the public"), older terms such as pain-burn-ache hags (an abusive term for fibromyalgia), that this group of patients is neglected and still looked down upon by health care professionals and the public and many politicians, substantially lowered quality of life, that there currently are no safe and effective treatments and no rehabilitation opportunities. So far so good.

Then there are some parts I'm not so sure of... for example, they claim that 60-70% of those who meet the diagnostic critiera for fibromyalgia also meet the ME/CFS criteria; and that 60% of those meeting both FM and ME/CFS criteria have IBS.

They write: "This has given rise to the question whether the individual illnesses are to be considered to have very high comorbidity, or if it's actually the same illness that can express slightly different symptoms from case to case." :thumbdown:

And then there's this: "[for which] the collective term dysregulation syndrome spectrum alternatively central sensitivity syndromes has been proposed."

Next, they propose that Regeringen (the government) should fund/establish a national knowledge centre.

They continue by discussing whether it's a good idea for politicians and/or authorities to support specific research, or if research should always be completely independent.

Nevertheless, certain targeted support measures for neglected research with potential for the future can have great legitimacy to be identified and controlled by politicians. It is this kind of research in the medical field that this motion is about. The analysis of why targeted support of neglect research, of the type that in a good way is illustrated by the shortcomings in knowledge and treatment methods that apply to the clustre of syndromes dysregulation spectrum syndrome alternatively central sensitivity syndromes, would be laudable, is based on the large and neglected social problem that lurks if one denies these patient groups to get their diseases and measures or treatments duly studied, just because they are new or unusual diagnostic entities.

Finally, they propose:

...to notify the government to consider the possibility of authorizing specific priority research efforts into the emerging terminology dysregulation syndrome spectrum alternatively central sensitivity syndromes in the context of newly identified and probably important neuroimmunologic common diseases such as ME/CFS and IBS.

To be honest, I'm confused. My interpretation is that they genuinely want more and better biomedical research into ME/CFS (and FM and IBS). I don't know anything about Amir, but Bengtsson has been very helpful on several occasions over the years, strong on the biomedical view, which almost makes me willing to give him a slight benefit of the doubt... almost. Perhaps he has completely misunderstood what CSS and DSS actually are? I don't know, but I'm having a very bad feeling about this...

Needless to say, I consider concepts such as CSS and DSS completely unacceptable and hugely problematic...

We're doing our very best trying to find out more about more details, will ask Bengtsson to elaborate and explain...

Those of you who are able to read and decipher the proposal, please do share your thoughts on it! I'd love to know how you interpret it.

 

[worldbackwards]

Then there are some parts I'm not so sure of... for example, they claim that 60-70% of those who meet the diagnostic critiera for fibromyalgia also meet the ME/CFS criteria; and that 60% of those meeting both FM and ME/CFS criteria have IBS.

Simon Wessely (just plain old Professor back then) in 2009:

"If you ask people with IBS if they suffer from fatigue they all say yes…Likewise, if you talk to someone with CFS, you find that nearly all of them have gut problems. If you systematically interview people with these illnesses, you find that a big proportion of these so-called discrete syndromes have a large overlap with the others. You have to think that we have got the classifications wrong."

 

[Kalliope]

I found it a bit confusing too. I hope they participated on today's conference in Umeå, and/or will participate tomorrow in Stockholm. I hope RME invited them.

One thing I missed was emphasising on listening to patients and cooperating with patient organisations. Patients _must_ have a say on any further development.

But great that they actually did this. Finn Bengtsson is a name I've noticed before. He is a professor and senior consultant.

 

[Effi]

@mango This is confusing... Do you know if this proposal will actually have the power to change anything? I'm just asking because we have had a similar situation in Belgium a few years ago: one or two politicians brought the subject of ME/CFS to parliament. Something about better care, more respect, etc., pretty similar to what you're writing above. The proposal was accepted pretty much by unanimity, which actually gave patients hope. But since then nothing at all has happened - dead letter.

 

[Kalliope]

I am very happy for ALL politicians speaking up for more research on ME, but it is crucial they are well informed.

A recent example from Norway was when the health politician Torgeir Micaelsen wrote this article last month about ME. He says his party (the Norwegian Labour Party) wants to increase their effort for ME-patients. Which is nice, but he's misinformed and believes CBT is an actual treatment. The Norwegian branch of #MillionsMissing gave him this answer on how patients MUST be listened to in order to provide better care and research, and was given this answer where Micaelsen believes one must continue research also on therapies patients are against, because research and knowledge are never dangerous (sic) - even about ME. He defends PACE and summarisations of research on ME based on PACE.

(There will be a meeting with Mr. Micaelsen, The Norwegian ME Association and the Norwegian branch of #MillionsMissing (don't know the date). Hopefully it will be a good meeting, as there at least seems to be a will to get more involved with ME.)

So thanks a lot for caring, politicians, but please make time for participating conferences on ME and make sure you are well informed _before_ your write in the newspapers or to the government. You might risk doing a disservice to patients when you actually meant to help.

 

[mango]

@mangoDo you know if this proposal will actually have the power to change anything?

I have no idea.... So far all proposals like this (as far as I know) have been dismissed, so I wouldn't know what to expect if it were to be approved?

 

[mango]

A new one, October 2017. Very similar to the previous one, this one is also asking for CSS research

https://www.riksdagen.se/sv/dokumen...-och-stod-till-patienter-drabbade-av_H5021267

Google translate, English:
https://translate.google.se/transla...ill-patienter-drabbade-av_H5021267&edit-text=