Danish recommendations on 'Funktionelle lidelser'

The recommendations for Danish ‘funktionelle lidelser’ in English called 'functional disorders' were released today, monday the 18th of june.

Available @

https://www.sst.dk/da/nyheder/2018/~/media/15C564788C0B445682C87695A2AFF6CD.ashx

The recommendations are so terrible that I believe they deserve a thread of their own. They are much worse than what ME/CFS patients expected.

There is a brief summary in English about the recommendations that does not say much about anything.

On CBT and GET as treatment

The following is my Danish translation of the bit regarding CBT and GET as treatment for ME/CFS. I have skiped some of the parts regarding IBS and fibro, which is why the following might seem disjointed.

In conclusion. The Danish Health Authority recommends CBT and GET for the Danish CFS patients.

On functional disorders / Bodily Distress Syndrome / Lack of ME/CFS diagnosis

One of the most severe problems when it comes to ME/CFS in Denmark is that the diagnosis simply de facto isn't given. This is a result of the long battle of Per Fink against the ME/CFS diagnosis in Denmark. The last recommendations from 2008 on ME/CFS specifically seemed to argue AGAINST giving out the ME/CFS diagnsis, on the basis that it would be unwise to prioritize any one of the different so-called ''illnesses'' that fall under the functional disorder diagnosis, in the fear that one diagnosis might become too popular (Yes, that was the explanation they came up with)

The report doesn't really deal with the entire issue of giving the ME/CFS diagnosis at all. The report seems to just ignore the entire Bodily Distress Syndrome / Functional disorder diagnosis / CFS diagnosis problem entirely. Very sad, but not surprising.


Not sure how much else there is to say, terrible, terrible recommendations.

If some of you could be so kind and write to the Danish Sundhedsstyrelse that you are shocked that they are still recommending GET as a treatment for ME/CFS then you can reach them here on twitter.



I am trying to engage them in a healthy debate, but no one seems to be responding.





I will be updating this thread with English translation of my own regarding the recommendations specifically aimed at ME/CFS

 

I'm so so sorry to hear this My heart goes out to you, dear neighbours

 

You can read the translation of the document according to google translate here: https://translate.google.com/transl...B445682C87695A2AFF6CD.ashx&edit-text=&act=url

 

Thank you so much ! I feel like the translator generally does a pretty good job, so I feel like you are able to get the gist of the entire thing by using the translator.

 

Amitriptyline is a far more potentially harmful drug than many people think - I had POTS when taking it, even at low doses. I am not a fan of this recommendation either.

 

It has also been linked to an increased risk of dementia: https://www.nhs.uk/news/medication/some-antidepressants-and-incontinence-drugs-linked-dementia/

 

I was given the impression amitriptyline was a fairly benevolent drug, especially at low doses. It certainly wasn't for me.

 

Personally I have found amitriptyline and a related drug Surmontil useful for sleep, headaches, muscle pain, TMJ pain and IBS pain (probably light and sound sensitivity also). I get around 9 hours sleep a night on Surmontil (got 7.5-8 on amitripyline) I think my quality of life would be a lot worse without it.

I don’t like to think about long-term effects but a lack of sleep is not good for you either and with severe ME I would struggle without this good quality rest.

 

Facebook post from IiME

 

@Rick Sanchez - MEAction is working on an article and, possibly, a call-to-action to encourage people to write the Danish Sundhedsstyrelse asking them NOT to recommend GET and CBT for ME/CFS with links to all the evidence showing its harm and ineffectiveness.

Do you know if there is a person at the Danish Sundhedsstyrelse who we should direct our letters to?

 

Thanks a bunch for the work!!

I would direct the letters to Tina Gustavsen who is press secretary of the Danish Health Authority (https://twitter.com/guldmann) or Søren Brostrøm who is Director of The Danish Health Authority (https://twitter.com/sstbrostrom?lang=en)

Not sure what their emails are if you want to write to them in private. The Danish ME Forening probably has them though. Their email is mail@me-foreningen.dk

 

Will you link here?

This is terrible news, for all of us I feel.

 

Spurious, ballsy, and dangerous stuff, and I don't mean that in a good way.

 

Amitriptyline gives me quite severe tachycardia - a heart rate of about 140 - 150 even though all I might be doing is just sitting. Despite this another doctor tried to prescribe it again, I refused to take it so she prescribed nortriptyline instead. Same effect as the amitriptyline. In both cases I was taking a low dose for pain, not a dose for depression.