New German guideline for ME published today

Philipp said:
So this Prof. Stark claims that he uses passive mobilization and stretching exercises on bed-bound patients, leading to long-term improvements in autonomic dysfunction.
If this is true, I would actually like to see him publish on his work in a more formal manner (unless he has already done so?). If this actually works it would be extremely beneficial for us as it is probably relatively easy to implement and practitioners could be informed on how to do this properly.


He is, however, missing the point why people object to the recommendation of 'activation' if he thinks that an approach like he describes is what is usually done in rehab clinics and other settings to pwME. The point we are making is that we do not want bed-bound people be forced to cure themselves by going for longer and longer walks while being denied the money they need to feed themselves and exposed to psychological and oftentimes physical violence as soon as they fail to be able to go back to work within a few weeks. This is not the same as giving instructions for gentle and maybe appropriate stretching to retain or regain enough function to make it to the bathroom.
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This is an excellent point. It is important that they are very specific when making claims about efficacy. I personally believe there are benefits for bed bound patients to be supported to be able to sit up, do gentle stretching etc to help with autonomic dysfunction.
 
I find the statement by Prof. Stark highly problematic. But it doesn't surprise me. Still, a little shocking what is deemed an "expert opinion". (Please note I only use what is written for my recension. I don't know him personally.)

It is trivial indeed that not using muscles leads to muscle atrophy. BUT if moving muscles leads to a debilitating worsening of symptoms - which could be irreversible - you shouldn't do it. That's common sense, too.
By the way, it is possible that with using muscles comes muscle loss. It depends on metabolomics. Due to illness the processes might not be the same as in a healthy person.

Someone really didn't understand what severe ME is.

Tell paralysed persons or people with progressed MS that not using their muscles is bad for them. Very funny indeed. Maybe someone should reboot their brains.
 
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From Prof. Stark's statement:

Why the amygdala is sharply aroused and why it holds up the sympathetic nervous system is still pretty unknown.
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Are there objective proofs for these statements? Is this reality? Do people here experience that?

In my personal case the amygdala is undersupplied (or under-active). Maybe that's not a contradiction though?!

Of course, the self-help module he talks about is not for free. The aim is to calm down the "flight or fight" state the amygdala is in.

I really would like to see his successes documented, as @Philipp already pointed out.

He also says in his statement that there are always people who have a very one-sided view on things and won't listen to any argument (obviously meaning who won't believe in his story) - well, if there are no objective proofs of a statement, why should one listen again and again?

Am I too critical?
 
None of these people give the impression of acknowledging let alone having dealt with severe ME.

No one who has witnessed how merely being touched, moved, washed, spoken to or exposed to light can cause PENE and permanent damage could make claims as outrageous as Stark's.

No one who does not know about or even acknowledge this should by no means be regarded as knowledgeable, let alone an authority on ME ever period.

On a sidenote, why was he asked to confirm Klasings "personal" opinions uttered in a "private" letter, and why would he get up in the business of lauding Fatigatio's tactics in dealing with DEGAM?

Anyone else smell some business sense in this one-of-a-kind expert's dealings with the largest patient organisation and at the same time advertizing his methods to a nationwide audience?
Am I too critical, too?
 
Inara said:
From Prof. Stark's statement:

"Why the amygdala is sharply aroused and why it holds up the sympathetic nervous system is still pretty unknown."

Are there objective proofs for these statements? Is this reality? Do people here experience that?
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There is no evidence the amygdala is sharply aroused in CFS patients. The "sustained arousal" hypothesis (Wyller) and amygdala activation hypothesis remain unproven despite a modest amount of research attempting to investigate those hypotheses (with null results).
 
YaS said:
On a sidenote, why was he asked to confirm Klasings "personal" opinions uttered in a "private" letter, and why would he get up in the business of lauding Fatigatio's tactics in dealing with DEGAM?
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Yes, that's what I wondered, too. Quite a coincidence that he should confirm Mrs Klasing's "private" eMail.

Thank you, @Snow Leopard. As a hypothesis "the amygdala arousal" may have its place, but to state it as fact is not acceptable. So it seems there are different belief groups - the BPS belief group, the amygdala belief group, another one? - and everyone is selling their belief as proven fact. This is a problem.

One should note that Prof. Stark is called as expert on "CFS" before courts. I imagine that he makes his statements about the amygdala, putting them as proven science. :(

YaS said:
Anyone else smell some business sense in this one-of-a-kind expert's dealings with the largest patient organisation and at the same time advertizing his methods to a nationwide audience?
Am I too critical, too?
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Obviously we are both maybe too critical... :D (You understand)
 
Maybe it is worth to pick this letter apart for everyone to follow so our international friends do not feel left out.

I think it depends a lot on how lenient one wants to be and if it would be appropriate to grant Prof. Stark's letter doctor-to-patient-communication status. It possibly is quite alright, assuming he does have the results he claims, to not type up the entire history of ME and only give a rough overview considering he is talking to a laywoman, but as someone who acts as an expert witness, treats patients and apparently sells self-help material I guess we can also be a bit more critical (slightly corrected google-translations for our international audience included, I hope this is enough to be readable, just ask if anything is still unclear, but please do not be too critical of exact wordings as awkward parts may be due to my laziness here rather than anything else):

You have asked me for a statement from a scientific point of view on the Discussion of your comment in the context of DEGAM communication that sustained bedriddenness leads to deterioration.
This is ultimately a truism that should have arrived in the last head. When muscles are not adequately moved, they atrophy and deteriorate. In addition, a demineralization of the bones with then increased brittleness occurs. The dilemma in CFS disease is that muscle activity leads to the well-known sustained exhaustion and is therefore as self-protection tends to be avoided. This then leads to bedriddenness in the worst cases, which can not be improved by further rest.
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If we want to be scientifically correct, we have to be precise here. It is true that being bedridden in and of itself should lead to muscle atrophy and brittle bones. It is also true that once you have reached this state, it will not go away by resting. But the assumption that the deterioration that is strictly due to being bedridden is more impactful than whatever actually lead to said bedridden state in the first place and the implicit assumption that if something cannot be improved by resting it must be improvable by activity are non-sequiturs that may make sense to laypersons at first glance, but these leaps in logic are mistakes that should not be made by a scientist. I don't necessarily care for his tone here either but whatever.


For 5 years now we have been measuring the basic tension of the muscles of my CFS Patients and find consistently an inadequately high base voltage, such as if the one had done sports. This increased base tension is attributed to a deregulation of the autonomic nervous system which is apparently stuck in an elevated sympathetic mode.
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I cannot comment on what he is talking about here because I am no expert and do not know what exactly it is he is measuring, but as far as I know - and I might be way off here - increased tension does not necessarily have to be due to autonomic dysfunction. We could e.g. be dealing with a dysfunction of the muscle tissue itself resulting in either the autonomic dysfunction or something that closely resembles it (I remember something about testing biopsied muscle cells from ME patients in vitro showing some kind of dysfunction, maybe from one of Prof. Newton's papers). Someone please correct me if I am wrong.


Why now the amygdala has turned on and keeps the sympathetic nervous system on a high level is still pretty unclear. In these structures amygdala, hypothalamus, limbic system, all body information is processed and weighted.
It is conceivable that there is also perceived that a collapse of the immune system is due to toxic influences or viral and bacterial diseases. Then this system can only answer with the age-old reflex "Flight or Fight", which drives up the sympathetic nerve and slows down the parasympathetic nervous system in its repair functions. Then the exhaustion down to the mitochondria also quite plausible as a biological reaction system. Furthermore, then comes that the existential threat has its psychological effects, also again increasing internal tension off itself.
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This entire paragraph looks like conjecture and babble where it is unclear how cause and effect are mixed up on a technical level. Statements like 'collapse of the immune system' and increased SNS activity causing 'exhaustion down to the mitochondria' are things doctors frequently say in doctor-to-patient-communication but are unlikely to give an accurate scientific account of what is actually happening.

This is where my therapy design starts, which I also use in my self-help module formulated to make the mental and cognitive "tricks" usable, how to
calm down this "flight or fight" system again. This is then a starting point to reduce this immense energy consumption in the body.

Of course, we design the necessary muscle training to counter stunting in the narrow individual exercise limits of CFS patients. Here the criticism is correct that blanket therapy recommendations for exercise are not helpful and in some cases even harmful. This work can only be done responsibly by a therapist who is well versed with CFS. In singular cases, where sometimes bedriddenness can be present, we start with only a few minutes of passive mobilization and stretching exercises. This then leads in the long term to muscular stabilization, which benefits above all the cardiovascular system. We also see via our measurements that the regulatory capacity of the autonomic nervous system is slowly recovering, resulting, among other things also in recovered deep sleep phases and in the decline of vertigo attacks.
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So he has designed a self-help program which he is apparently selling if I understood correctly?
Like I said, it would be great to know not only what exactly he is doing with his patients but also how he goes about determining what the individual exercise limit of a patient is on any given day. I have lived with this illness for over a decade and I cannot reliably predict how much I can without triggering PEM even though I would say I have a reasonably good grip on it. Unless he has some objective measurement (maybe heart rate variability?) I would assume he is making this up as he goes unless he can prove otherwise.
I do genuinely believe, however, that this may be a very useful approach for people who can tolerate it as I myself have benefited tremendously from a very similar approach. It is hard to argue for or against anything here if all we have is anecdote, however. I have only done a quick look on pubmed for studies using his name & 'cfs' as parameters, so I may very well have missed publications.

I have now struck out this far, to you and the board and you are welcome to publish these comments on the Fatigatio page, that you are right with your arguments based on the latest scientific findings. The literature from the sports science, which are released by even slight muscle movement called myokines, which have a regulating effect on the limbic system and the hypothalamus, has not yet arrived in the rest of the medicine.
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So what exactly are the regulating effects of myokines in pwME?

As for the criticism of your approach with the DEGAM, I can only as a physician say that you have chosen the right tactics. A pure confrontation and trying to prove to these people that they understand nothing of the cause, leads only to sometimes even arrogant renitence which many sufferers had to experience even in countless doctor visits. You also have to put up with it, even if it's personally offensive to you, that in every bigger club there are people who have a very one-sided view of things and insist on it and are no longer open to reasoning. This only harms themselves, because they can not allow any other aids that do not fit into their concept, and in the case of your club, unfortunately, the other members, who can be unsettled by it.
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I do understand the view that you have to try to work with the DEGAM reviewers without antagonizing them too much if one wants to get anything out of them. This is a reality we have to deal with until people who actually know the disease they are writing about are used to create guidelines.
The other part, however, in my opinion proves my point that he did not understand that stating 'bedridden patients have to be activated' without any further context or instruction on what exactly is meant by this will lead to harm and possibly fatalities. I have never heard of any rehab clinic using any kind of measurements to determine what a pwME can actually do, and we do have stories like from the woman in TiredSam's group screaming from her iatrogenic PTBS.


Like everyone else has already mentioned, any acknowledgement of how his approach is likely inappropriate or at the very least completely understudied for severe ME is woefully absent. I do think he actually means well, though. Given the seriousness of our entire predicament I am not sure if that should count for much.
 
You also have to put up with it, even if it's personally offensive to you, that in every bigger club there are people who have a very one-sided view of things and insist on it and are no longer open to reasoning. This only harms themselves, because they can not allow any other aids that do not fit into their concept, and in the case of your club, unfortunately, the other members, who can be unsettled by it.
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I'd like to stretch that he's not talking about the DEGAM (the authors of the guideline) here, but about pwME. :rolleyes:

As for the criticism of your approach with the DEGAM, I can only as a physician say that you have chosen the right tactics. A pure confrontation and trying to prove to these people that they understand nothing of the cause ...
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This is apparently a description of the work of the two other patient organizations in the guideline process (or can be certainly read this way).

Disgraceful.
 
I will only quote passages I feel elaborating on makes sense, I agree with the rest @Philipp

Philipp said:
I think it depends a lot on how lenient one wants to be and if it would be appropriate to grant Prof. Stark's letter doctor-to-patient-communication status. It possibly is quite alright, assuming he does have the results he claims, to not type up the entire history of ME and only give a rough overview considering he is talking to a laywoman, but as someone who acts as an expert witness, treats patients and apparently sells self-help material I guess we can also be a bit more critical [...]
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Should the chairwoman of the largest patient organization be considered a laywoman, would that be appropriate for someone in her position?
Also, Stark explicitly responds to present "scientific" background.
Therefore no reason to be lenient.

"For 5 years now we have been measuring the basic tension of the muscles of my CFS Patients and find consistently an inadequately high base voltage, such as if the one had done sports. This increased base tension is attributed to a deregulation of the autonomic nervous system which is apparently stuck in an elevated sympathetic mode."

Please correct me, but I am quite sure "inadäquat hohe Grundspannung" should better be translated as "inadequately high base (muscle) tone" as in muscles being generally too tense.
Doesn't this pretty much constitute a direct contradiction to Stark's own theory and isn't it pointing in a rather "spastic" direction? He even himself goes on to compare the observed tension to the immediate effects of having engaged in sports preceding measurement!
To me that would indicate that releasing the tension would be a more thoughtful approach than further "activation".
But hey, I'm just a layman.

Philipp said:
So he has designed a self-help program which he is apparently selling if I understood correctly?
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Yes, and from what patients report it could be described partially as Gupta for dummies, if such a term makes any sense.
I have heard silly quotes from the program I am not sure I can share here, something in the line of "be your own driver..."

More can be found here:
https://prof-stark-selbsthilfe.de/angebot/selbsthilfe/chronisches-fatigue-syndrom-cfs/

Philipp said:
I do understand the view that you have to try to work with the DEGAM reviewers without antagonizing them too much if one wants to get anything out of them. This is a reality we have to deal with until people who actually know the disease they are writing about are used to create guidelines.
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I seriously doubt this is correct, or to be more precise:
There is an important difference between the tone one chooses when dealing with officials personally and a completely non-confrontative attitude.

To act on the assumption that people in responsible positions like the DEGAM guideline authors are free from conflicts of interest and do not know exactly what they are doing would be naive at best.
That is not the way one works to bring about change, especially not by building "good relations with your bully" or trying to please them into granting you crumbs.

Philipp said:
Like everyone else has already mentioned, any acknowledgement of how his approach is likely inappropriate or at the very least completely understudied for severe ME is woefully absent. I do think he actually means well, though. Given the seriousness of our entire predicament I am not sure if that should count for much.
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There are a few things to be said about Prof. Stark as an expert witness. Repeated reports by patients suggest that he is able to clearly dinstinguish whatever he considers "CFS" from depression and is making favorable, or one should rather say fair and helpful assessments of patients' impairments when dealing with administrative issues.


What should definitively not be lost on the reader, however, is that Stark is a psychiatrist.
The name of his "Psychotherapeutic Center for Treatment of Stress and Fatigue" should be enough to alarm pwME.

https://prof-stark.de/was-macht-mich-krank/chronic-fatigue-syndrom/

The source materials he likes to cite are also not exactly what I would describe as first choice, lots of CDC references and the like.

It should at the very least raise quite an eyebrow that any patient organization supposedly envolved in advocacy for ME would, of all people, want to rely on a psychiatrist who promotes activation techniques to backup their positions.

His assessments can certainly be helpful to the individual, but I believe he means primarily well for his wallet and this is all part of gaining customers.
I know he tried to advertize his self-help program to patient forums and to this day is continously advising patients to "take a walk around the block three times a day, even if it's very hard."

To conclude, I consider Prof. Stark to be no more and no less than some sort of a particular amygdala-flavored BPS psychobabbler, who has now even made the step to not only take a stance with regards to internal discussions but also openly engage in the official guideline debate, which I'd rather see his kind completely left out of for obvious reasons.

*edit: other treatments he provides are said to be pricey, too. ​
 
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Thanks @YaS, I completely agree with all your points.

Quick amendments to what I wrote in light of this:
I missed the voltage part. Sorry. I think 'Spannung' here should indeed be translated 'tone' or maybe 'tension'. This is a reasonably complicated topic as far as I remember and I am very unsure if muscle tone should increase post exertion in general, but this may just be a lack of precision in wording things correctly.

The self-help program is... umm. 90€ for something that is 'based on CBT and therefore scientifically validated methods' (my quick translation) when, as far as I am aware, this is quite a big claim wrt pwME as of right now. Is this even legal to sell with the claims on his page? Or would it still be legal if the actual scientific reality would be used as a basis for this decision?

Regarding how to deal with DEGAM, what I meant to say that I understand his line of thought and get where he is coming from, but I do share your opinion on it.

I was not aware of the other context you provided (just had a quick glance at his page a couple weeks back and did not even realize this is the same person), this very much raises the question why anyone would contact him to provide an overview on the current science.
 
I think 'tone' is the scientific term here. I also found 'tonus'. In German we are talking about 'Muskeltonus'.
'Muscle tension' (or 'painful muscle tension') is imo what we call 'Muskelverspannung'.
Every muscle has (even at rest) a certain degree of tonus. This is called 'Ruhetonus' in German ('resting muscle tone'), although Prof Stark is referring to 'Grundspannung' here.


For me, the missing informations in Prof Stark's letter are:
a) which muscles have been tested?
b) by what kind of test?
c) in what kind of situation? (at home or in his institute)
d) on which patients? (mild, moderate, severe/duration of disease....)

Without these informations I can not comprehend why he states that:

'This increased resting muscle tone is due to a deregulation of the autonomic nervous system, which is apparently stuck in an elevated sympathetic mode.'

What I liked though is that in his theory the cause of ME is physical
('collapse of the immune system due to toxic influences or viral and bacterial diseases').
Of course he sees secondary psychological effects (caused by 'existential threats') and this is where his self help program comes into play.

Well, in the end he is a professor for psychiatry and psychology. I think he could have done worse...

I haven't heard of him before. I do not know how well he is informed about the whole situation concerning Fatigatio and the Leidlinien (sic!), maybe it is all about one-sided information and a well intentioned attempt to help...

Das Gegenteil von 'gut' ist 'gut gemeint'...
(The opposite of 'good' is 'good intended'?)



[Extremely edited for typos and clarity]
 
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But why did Fatigatio decide to publish his letter anyway?
Because it is saying that Mrs. Klasing
- got everything right
- did everything right
- is a victim of unfair critique voiced by a minority (of morally reprehensible docs and patients).
Given the fact that the letter is written by a professor (still a highly respected title in Germany) whose helpful expert opinion in court cases one might someday need: who would like to counter that?

To publish this letter is the attempt to put a muzzle on critics. Poor style!

I'm very happy that you people here on s4me made me aware of the situation regarding fatigatio so that I didn't fall in that trap (by becoming a member).
 
Andy said:
And my response would be proof or it hasn't happened. What they probably mean is that some people have had the audacity to disagree with them, and they feel threatened by the fact that their word isn't taken as an absolute truth.
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That's it. Claims and no proofs. Viewing disagreement as threat.

But what's best:
"Wir sind nach einem wissenschaftlich anerkannten Verfahren vorgegangen und haben auch die Betroffenen angehört,..."

We proceeded according to a scientifically recognized procedure and also heard those affected,...
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It cannot be proven they heard. What they did is let patient organizations speak. That doesn't mean they heard. And they proved they prefer to ignore. They proved they give a shit about what patients/organizations said and that they give a shit about scientific standards. Interesting they dare say something like that with the original Methodenreport and the DG's statement (German Society for ME) - which is archived.
 
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