Germany: 2022 Society for General and Family Medicine (DEGAM) Fatigue Guideline

Copied post
The German Society for General and Family Medicine (DEGAM) published its new guideline on "Fatigue". One chapter is about ME/CFS.

https://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002_Leitlinie Muedigkeit/Aktualisierung Dezember 2022/Langfassung Leitlinie Müdigkeit.pdf

They seem to follow and explicitly recommend the NICE and EUROMENE guidelines, as well as the CDC's recommendations.
Though they refrain from providing "a DEGAM guideline in the true sense of word" (because of the "complex situation, the relative rarity of the disease among all causes of unaccustomed fatigue, and the dynamic of unusual fatigue and the dynamic development of research").

The "guideline" will be valid until 12/2027. What really strikes me is a minority report (special vote) by

• German College for Psychosomatic Medicine (DKPM)
• German Society for Psychosomatic Medicine and Medical Psychotherapy (DGPM)
• German society for Internal Medicine (DGIM)
• German Society for Psychiatry and Psychotherapy, Psychosomatics and Neurology (DGPPN)

On 2-3 pages (p.63 onwards) they were allowed to describe their usual horrific babble.

For example
"However, in the opinion of the undersigned professional societies, patients with CFS should be offered staged activation and suitable psychotherapy methods after careful examination and indication, and iatrogenic passivation and chronification should be avoided."

Criticising the NICE guideline they write "Furthermore, Flottorp et al. describe (after consensus was reached) : "that polemical interactions became a battle within the guideline committee, that three members withdrew from guideline development, and that the remaining members did not accept the concerns of leading medical societies"."

Below their special vote (in bold):
"Note: Patient advocacy groups (on ME/CFS) and representatives of EUROMENE are scientifically critical of this special vote and fear harm to affected persons."


Edit: Once again, thank you to all involved with the NICE guideline. I don't want to imagine how screwed we'd be if the NICE guideline were different.

 

But the NICE guidelines aren't for fatigue.

A tiny step forward, but somehow still a mess. This is separate from whatever IQWIG is doing, right?

It's kind of notable that a small minority of contrarian ideologues held a tantrum, then got cited by people throwing their own tantrum as evidence that their tantrum is, somehow, credible. And cited another group of randos doing the same elsewhere. Without any evidence whatsoever, only their opinion.

Intelligence is completely wasted without wisdom. Same for healthcare without humanity.

 

Only able to skim now but it seems that their 'special vote' is only included in the long version of the guideline. So neither the short version nor the short versions/ 'modules' for patients and/or health care professionals included any of the claims made by the authors of the 'special vote'.

Instead, if I didn't miss anything, in the diverse short versions of the guideline all the parts dealing with ME/CFS or explicitly excluding pwME from recommendations seem to largely follow NICE.

E.g, in the guideline for patients:

"In the case of ME/CFS* - which stands for myalgic encephalomyelitis (or myalgic fatigue syndrome)/chronic fatigue syndrome* - which is a disease in its own right and should be distinguished from the symptom of 'fatigue', a prolonged deterioration of the condition occurs after physical and/or mental exertion, so that here the activities must not be increased above the limits[*] currently present in the affected person: here the otherwise helpful advice to increase activity is not useful and can permanently and irretrievably worsen the condition."

[*] in German: 'Belastungsgrenze'

(Link to overview of diverse versions/ modules of the guideline )

 

The DEGAM guideline report states that the special vote was only accepted to be included in the guideline after the authors had edited their text. Among other things, maybe they had to add the "after consensus was reached" to the Flottorp et al reference?

Sorry not able to check myself now but if I remember correctly Flottorp et al insinuated that the resignations from the committee were before consensus was reached?

Forum thread on the Flottorp et al letter here.

Anyway, even without context the reference doesn't make sense with the parenthesis as the date of the resignations ("after consensus was reached") doesn't support the idea that the people who resigned had anything to complain about if they all agreed on the guideline before the resignations.

It's strange that they "withdrew from guideline development" when the only thing left to do was the technical publication of the consented guideline with maybe some minor language edits.

See also the documentation of the NICE guideline process ( https://www.nice.org.uk/guidance/ng206/history )

From the round table minutes, https://www.nice.org.uk/guidance/ng206/documents/minutes-31, p.3 :


Peter Barry presented a summary of how guideline development proceeded:

"The whole guideline was agreed by the committee, including the recommendations on graded exercise therapy (GET) before there were resignations."

"The recommendations were not decided on by voting, they were reached by consensus. Reaching consensus was a careful and iterative process."

Date of resignations : https://www.nice.org.uk/guidance/ng206/documents/committee-member-list-3

I echo-echo that. Also, thank you to the German patient organizations involved in the DEGAM guidelines.


(Pretty brain-fogged ATM and took me several hours over two days to put these posts together so anticipated apologies for any potential muddle.)

 

Only the chapter about ME/CFS is referencing the NICE ME/CFS guideline. Sorry for the slight confusion.

Yup, IQWiG is only creating a report about ME/CFS for the ministry of health. It's not a guideline, but it appears the draft was sometimes received as such.
(On Mastodon IQWiG recently announced to change the report to make sure their benefit assessments won't lead to therapies being received as "IQWiG recommended". But, we'll see.)

+1!!

Despite the minority vote, the new guideline is a huge improvement over the old one.

 

Interesting for them to lean on the Flottorp piece in that way when there are so many problems with it.

What was that website that was meant to be good for translating more technical documents?

 

DeepL?

 

Thanks.

I forgot you had to pay, but ended up translating a lot in little bits. I've not done much editing, so this sounds very roboty, but may be of interest to some others. If anyone goes through correcting bits it could be worth reposting?

I started at the ME/CFS [5.7] bit and then went on for a bit after that. I expect this will be multiple posts:

 

5.7.5 - the 'special' comment.

Apparently this is what the acronyms are for:

• German College for Psychosomatic Medicine (DKPM)
• German Society for Psychosomatic Medicine and Medical Psychotherapy (DGPM)
• German society for Internal Medicine (DGIM)
• German Society for Psychiatry and Psychotherapy, Psychosomatics and Neurology (DGPPN)

 

I skimmed bits of this and found it interesting enough to keep going for a while:

 

Well, seems good and the right people are pissed.

It's actually very telling that they are relying on an opinion piece with many factual errors, rather than actual evidence. Of which they have none, as they are showing clearly by emphasizing fake controversies and doing a classic DARVO.

No honorable person uses DARVO. No self-respecting professional uses DARVO in their work. These people are dishonorable.

 

I've just edited the 'special comment' translation to hopefully make it easier to read, though it would be worth checking any key phrasing with a German speaker.

My thoughts:

"The historically less distinctively originated designation "ME" can be misleadingly understood [McEvedy and Beard 1970, Shorter 1993]"

Interesting references to support that point.

A lot of their concerns seem to be about managing patients' beliefs, and concern that phrasing that they consider to be negative or fear inducing could be harmful to us. I find this attitude towards us interesting.

"Negative expectations with corresponding effects on their symptoms, their quality of life and their way of life. In the opinion of the undersigned societies, the term "ME" should not be used/should therefore not be passed on uncritically."

They express quite a bit of concern about PEM, but it's not entirely clear exactly why this is. They say it is not sufficiently specific to ME/CFS:

"It is indisputable that PEM can occur after previous exertion, however, this, as well as non-restorative sleep, is insufficiently specific, and is also found, for example, in patients with fibromyalgia, cancer-associated fatigue and other fatigue syndromes. [Nijs et al. 2013, Barhorst et al. 2022, Twomey et al. 2020].

The emphasis on PEM as a specific characteristic of or warning sign for CFS is, according to the assessment of the undersigned professional societies misleading."

But re subjective fatigue they say (citing Flottorp whose Lancet commentary on NICE is seen as important): "the importance of subjectively emp- fatigue was invalidated, although it is the main symptom of the syndrome;". Why is subjective fatigue the 'main symptom' rather than PEM? Who should decide what the 'main symptom' is? After complaining about PEM being insufficiently specific it seems odd for them to assert subjective fatigue is the main symptom.

They also say re PEM:

"Since, in the view of the undersigned professional societies, PEM is not very specific, this recommendation may also have a negative impact on behavior.

Recommendation may also have a negative impact on the behavior, quality of life, health and thus the prognosis of other patients with fatigue, who may fear that they too also suffer from ME/CFS."

Do things like that first sentence indicate a concern that the concept of PEM could fear inducing for patients? I wasn't clear on how the language should be interpreted tbh.

re GET, they say:

"In the case of "ME/CFS", according to recommendation 6.5 C, no physical activities should be offered on the basis of the deconditioning concept.

A rigid training plan is certainly hardly purposeful. However, according to the assessment of the undersigned professional societies patients with CFS should be offered staged activation and suitable exercise after careful examination and
and indication. "

I'm not sure if they think that GET of the basis on the deconditioning model of ME/CFS should be provided?

They say "Interventions should not be withheld from those affected or presented in a fearful manner."

When we don't have a good understanding of the cause of someone's health problems, and the evidence of the effect of treatments is not very good, providing warnings of possible problems seems a fair thing to do to me.


5.7.5 - the 'special' comment.

Apparently this is what the acronyms are for:

• German College for Psychosomatic Medicine (DKPM)
• German Society for Psychosomatic Medicine and Medical Psychotherapy (DGPM)
• German society for Internal Medicine (DGIM)
• German Society for Psychiatry and Psychotherapy, Psychosomatics and Neurology (DGPPN)

 

Fatigue - S3 guideline update, 2023, Kornder et al

Summary
background
Fatigue is a common symptom in the family doctor's office, where there is often diagnostic uncertainty. Sufferers use descriptions that include emotional, cognitive, physical, or behavioral aspects. A variety of biological, mental and social causes are conceivable, often in combination. The guideline refers to the procedure in the case of primarily unexplained symptoms.

search methods
The experts involved carried out a systematic search using the terms for fatigue in the context of primary care in PubMed, the Cochrane Library and by hand search. With regard to related guidelines, the guidelines of the National Institute of Health and Care Excellence (NICE) could be used for myalgic encephalitis/chronic fatigue syndrome (ME/CFS). In a structured consensus process, broad agreement was reached on the core recommendations/background text of the revised guideline.

Main messages
1) In addition to the characteristics of the symptom, i.a. Pre-existing conditions, sleep behavior, intake of psychotropic substances, psychosocial and environmental factors are asked. 2) Depression and anxiety should be recorded as common causes using screening questions, and the occurrence of post-exertion malaise (PEM) should also be asked. 3) The following basic diagnostics are recommended: physical examination, laboratory tests (blood glucose, full blood count, ESR/CRP, transaminases/γ-GT, TSH). 4) Further investigations are only indicated if there are specific indications. 5) A biopsychosocial approach should be sought. 6) Behavioral therapy and symptom-oriented activating measures can improve fatigue in the case of an underlying disease or when the cause is unknown. 7) In the case of PEM, further ME/CFS criteria are recorded and those affected are cared for accordingly.

Open access, https://link.springer.com/article/10.1007/s44266-023-00045-z

 

It's seriously maddening that they make it impossible to work with the consequences of chronic illness because they keep deciding they want them to be causes. Absurd. It's all correlational, and they have no issue deciding on a preferred causation.

Literally, just because:

When your homework is literally worse than what ChatGPT would come up with. This is completely unserious work. Yet again.