New German guideline for ME published today

Joh said:
"It is questionable, however, whether it makes sense to further deepen the awareness of this entity in the general and specialist public, given the unexplained aetiopathology and the lack of specific treatment options for CFS."
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Deeply disturbing. If you want to solve a problem, you need to acknowledge that it exists, talk about it, understand it.
 
Treatment:

"Should the inclusion of specialists be needed, an integrated psychosocial and somatic therapeutic approach is recommended. Several studies have shown improvements under aerobic exercise. This is confirmed by a new Cochrane review."

"Also effective are cognitive-behavioral therapies. (...) Cognitive behavioral therapy as well as graded exercise therapy
in addition to specialized care led to moderate improvements, but not adaptive pacing therapy, which is favoured by self-help groups."
 
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On why the label ME is "dangerous":

These labels are problematic, if they are purely organic. In this way, they often lead to a restricted perspective for doctors and patients, which overlook complex psychosocial factors. This danger is confirmed by a longitudinal British study
that the label "Myalgic Encephalomyelitis" was associated with a worse prognosis than other diagnostic categories[265].
 
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I have to check the sources later. Apparently CBT is proven to work for CFS. ;)
Sources: [284,285,326,327]
 
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284. Price JR, Couper J. Cognitive behaviour therapy for adults with chronic fatigue syndrome. Cochrane Database Syst Rev. 2000;(2):CD001027.

285. Prins JB, Bleijenberg G, Bazelmans E, Elving LD, de Boo TM, Severens JL, et al. Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial. Lancet Lond Engl. 2001 Mar 17;357(9259):841–7.

286. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev. 2008;(3):CD001027.

326. Sharpe M, Hawton K, Simkin S, Surawy C, Hackmann A, Klimes I, et al. Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial. BMJ. 1996 Jan 6;312(7022):22–6.

327. Reid S, Chalder T, Cleare A. Chronic fatigue syndrome. In: Barton S, editor. Clinical Evidence . London: BMJ Publishing Group; 2001. BMJ Publishing Group. 2001;
 
The patient-info for CFS (included in a flyer on tiredness):

Perhaps you have heard something about this term in the press. There is a small group of people who suffer from such extreme and persistent tiredness that they have severely restricted their professional and family activities. To date, it has not yet been clarified what causes these symptoms. People who are tired nowadays often fear that they also suffer from this clinical picture. There are various definitions and so far there is no definite evidence of a recommended diagnosis or treatment. However, your family doctor can accompany you in this difficult situation.

I love how many words they find to not use the word illness, this time clinical picture. Also they don't say that tiredness restricts the activities, but that we restrict our activities, an important difference (and it doesn't say "must").

This patient info improved a little, last time it said explicitly to not get a diagnosis of CFS.
 
They use PACE:

Cognitive behavioral therapy as well as gradual physical activation in addition to specialist care led to modest improvements, but not the adaptive adaptation therapy favored by self-help groups. Subjectively, the latter was rated by the study participants as well as the other two objectively effective forms of therapy.
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Ref. 273
 
Now the positive stuff:

I was surprised to see in a subordinate sentence that it might be sometimes ok to treat sleep and pain.

And they even mentioned the IOM report. One time to ridicule CFS (the IOM report lists 67 names) but one time to half-correct cite at least a little part of the IOM diagnostic criteria. Of course PEM was translated as feeling a little tired after exertion.

I'm happy to see that the CCC are no longer called bodily injury/mayhem. On the other hand they're now not mentioned at all.
 
Joh said:
When the German Association tried to reason and work with them and listed all the evidence and science, DEGAM mostly answered in one sentence: "unanimously rejected".
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I read some parts in the report, and it is very disrespectful. It sounds a little like "Piss off, you worms! We are the most perfect know-it-alls in this universe, if we say it is, it is".
 
Valentijn said:
... and patient representatives involved, of course?
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I have to check out the details. It says 3 authors, but there were the 3 German NGOs and as far as I know at one point Prof. Scheibenbogen and I thought the guideline gang had 5 people or so, so they could say every time "unanimously rejected". The whole process was a farce and the patients representatives spent so much time and effort. When the German Association officially requested a neutral moderator one of the 3 guideline-authors was appointed. :)
 
I know it sounds stupid because I volunteer for the German Association and like an advertisement. But it's rather the other way around and I chose them because I value their evidence-based scientific approach.

I would recommend to check out the letters from the German Association to DEGAM in the guideline report from page 74-90. I think they did amazing work. One of the two people who did the guideline work is healthy (with a family member with ME) and did all the work as a volunteer parallel to a full time job:

http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf
 
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As other guidelines they rely on the guideline-committee names:

1. Guideline from Dutch GPs about MUS
2. Sleep
3. Unipolar depression
 
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