Danish recommendations on 'Funktionelle lidelser'

Rick Sanchez

Rick Sanchez

Senior Member (Voting Rights)
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.

There are evidence-based treatment guidelines and recommendations for a number of functional disorders among them, IBS, fibromyalgia, CFS.

Treatment should be given towards symptom relief, should be given to increase the quality of life of the patient, establish a good patient doctor relationship, make sure to individualize treatment, and make sure that non-pharmacological interventions are tried out first. The recommendations are in most cases built on weak evidence or consensus.

In 2011 The Danish Health Authority released a handbook about physical activity as prevention and treatment, wherein lies evidence based recommendations for different sorts of physical exercise as treatment for CFS.

As treatment for CFS, CBT is recommended and physical activity / activity in the form of GET is also recommended. Low dose amitriptyline is also recommended as treatment in patients who experience poor sleep or pain.

For patients with CFS, there is evidence of low to moderate strength for an effective training intervention against the patients fatigue, whilst there is evidence of moderate strength that exercise does not have serious negative effects. Furthermore, there is evidence that CBT has an effect on the fatigue of patients immediately after treatment. In the chapter on CFS in the Danish Health Authorities handbook on physical activity it is concluded that there is low to moderate evidence of positive effects of physical exercise, which includes graded exercise therapy.
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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
 
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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.
 
@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?
 
atillman said:
@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?
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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
 
atillman said:
@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?
Click to expand...
Will you link here?

This is terrible news, for all of us I feel.
 
Rick Sanchez said:
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)
Click to expand...

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