New German guideline for ME published today

No, I didn't mean Valerie, but always good to have a team to gather
I think the one brain cell is on its own today, I'll chime in again if I can remember.

 

Yes, my mistake, I edited my post too late.

 

Haha, yes that's her. No idea if she'd be interested or appropriate here, just thought of her amazing david/goliath win with NIH.

 

I'm too slow to follow all the posts in this thread, but let me share my vision for an awareness campaign [edit: or at least to start with]:

An "Unrest" screening in Berlin, hosted by the Berlin Humboldt University and Free University (Faculty of Medicine) together with the German Association for ME and the Lost Voices Stiftung, accompanied by a talk afterwards; speakers: Jennifer Brea, Prof. Carmen Scheibenbogen, Prof. Jonathan Edwards.

Special guests invited to the screening: the authors of the DEGAM guidline.

 

awareness in Germany is low, nowhere near comparable to english-speaking countries. this is being perpetuated by guidelines like these which serve as information source and recommendation to general physicians.
There is one single place that is specialized in diagnosis and does some research, Charité in Berlin and they only accept walk-in patients from Berlin and surroundings at this point after long waits for an appointment by doctor.

Heck, even the German translation of the ICD-manual refers to "Chronisches Müdigkeitssyndrom" (chronic tiredness syndrome) under G 93.3!

Many pwME's energy is simply exhausted battling institutions due to this.

I respectfully suggest one takes a closer look before discounting all advocacy that has been done and realize the politics at play. We're up against a powerful lobby here, like many places.

Katharina Voss, mother of two severely ill daughters has an excellent blog where she monitors and comments on all things ME, here's a more recent entry (english translation at bottom):
http://meversuscfs.blogspot.de/2017/11/time-for-truth-zuruck-im-leben-dank-hiv.html

also a regularly updated list of studies with biomedical research:


I do not think anyone serious about advocacy work in German-speaking countries can afford to ignore her book on ME which goes into detail about the history of ME, politics envolved and the situation in Germany including institutions and has an extensive list of research attached. Frankly, parts of this work could probably be useful to a wider audience if translated to english.


Last but not least I want to address the Facebook "chat" group(s). Yes, these often serve as a social hub for many who have no other way of interaction left. But they are also an opportunity to connect for anyone interested, the group mentioned in this thread has members from Switzerland where there is virtually no recognition at all from what I hear, too.
One could use groups like these to network, here's another one:
https://www.facebook.com/groups/fachgruppe.me
After all it was a Facebook post which brought me here and shared a link there, too...

In this day and age it would seem unreasonable to avoid use social media for advocacy and to get in touch with the pwME community especially. Part of Fatigatio's problem is their antiquated structure.

I have personally set back my concerns of privacy in order to be able to engage in any meaningful conversation at this point, maybe some here might consider the same.

These are just my two cents, I really hope that active people manage to get something done as the situation is unacceptable, with these guidelines being part of a much bigger problem globally.

Back on th origina topic, I have contacted DG-ME/CFS, Lost Voices Stiftung and Fatigatio to inquire about what could be read, the latter two have not issued official statements as of yet.

I apologize in advance for not being able to post or reply regularly, omissions out of ignorance and the like. this is taxing for me, I'm mostly only able to use a smartphone for communications.

regards​

 

Another gem from the guideline:

I still have to read the whole thing. Apparently we're also told to stop smoking as a treatment.

@MSEsperanza, your dream might come (at least partly) true. The German Association is organizing a screening in Berlin and is in contact with Prof. Scheibenbogen (but of course it depends on time and place). There's also a screening on February 20 in Berlin from the Berlin Documentary club and they try to do a skype call with Jen for the Q & A. I actually like your idea to invite DEGAM and the German Association will also organize another screening in Hamburg (I think this is where the DEGAM office is), maybe they could really politely be invited by patients.

 

Highly interested.

 

Yes, that was curious! And Mr. Wessely recommends drinking. (My interpretation of his words; it was maybe not his meaning.)

 

How do you even begin to argue with something like that? I am genuinely asking. As far as I know 'somatization' is one of those annoying words that mean something slightly different to every single person using it and is adaptable in the sense that it always takes on the meaning of what whoever said it wants it to mean as soon as someone asks to clarify, so it can be 'changing cortisol levels have a certain effect in MS patients and this explains why they react to stress in a certain manner' or 'there is absolutely nothing that changes physically so everything that was discussed here has been the effect of the power of your magic mindbrain'. In the first usecase the word is essentially meaningless because it does not add any information, the second one is plain bullshit based on a - possibly intentional - misunderstanding of how humans work.

I do not know how to counter this stuff in the fantasy universe the people who bring up these ideas because it is somewhat tautological - i.e. one has to believe in the concept of magic somatization for the argumentation to work, and if one does they are always true and applicable to everything due to their self-sustaining nature - and I do not know how to counter it outside their universe because there would not be any need to counter it here since it would be on the people using the somatization concept to prove that it is real and they have not been able to do that up until now. This is just something that people outside of the field of Psychiatry assume is a thing because surely the people in their field must know what they are doing, and people inside said field have simply been parrotting it because they assume the people who were working in this field before them must know what they have been doing. Occasionally I see something that seems to deliver evidence that somatization is not a real thing, e.g. the biological mechanism that leads to stomach ulcers, which is then ad hoc taken by the proponents of somatization as proof that their wobbly theory is real because we now know of a mechanism how the magic mindbrain somatizes. Then there is some leap in logic and somehow the mechanism itself is proof that the entire condition was imaginary in the first place or can be avoided if you do some form of talking therapy - if it doesn't work you're an asshat because you did not take responsibility for making the talking therapy work. Sorry if my words make more sense in my head, I find it pretty challenging to put what I am trying to say into words, but I hope you guys (& gals) get the gist of it.

It is just so hard to argue against something that is a) accepted as true by the people who unfortunately matter while at the same time b) so intangible and amorphous that the best words I can come up to describe it are literally 'intangible' and 'amorphous'.

 

you don't, as that will only serve as further proof to them. Even engaging in this subject is a success to the BPS folk, so one has to always and again recur to biomedical research facts. There is no point in arguing with someone who does not even in theory accept that your condition is an actual disease entity, the individual case totally aside.

 

I'd say you cannot. It's like the question after the existence of unicorns: You cannot prove they exist, and you cannot prove they don't exist. This entire problem has the foundation in the psyche itself - depending on its definition - and the misconception about what psychology/psychiatry is. It's not a science of nature. It's a normative science.

The BPS crowd say that bodily symptoms go back to the psyche, and that in every illness process the psyche is involved. So even if we had a biomarker, we would be faced with stuff like that.

Edit:

Yes. Or you don't. I simply decided not believe in anything the psycho folks say about "psychological illnesses". I don't like religions, and above all, I don't like things that cause harm. It's comparable to religious people: You can't discuss why their beliefs might be wrong. I was dismissed as the devil.
What @YaS said seems to be reasonable: Go back to the facts. Or don't speak at all where needed.

 

Hi @YaS, welcome to Science for ME.

I'm not sure if you refer to one of my posts in your first post as you don't use my name or quote, but it very much sounds like it. Maybe my post wasn't clear and this is why I would like to clarify that I didn't say any of this (e.g. that people shouldn't use facebook groups to chat or have a sense of community). I'm well aware of the book and blog you refer to and the politics. I own both versions of the book, read the blog, signed the petition and really liked the tv segments the author appeared in. It would rather proof my point that we don't have a patient movement as the petition has 8000 signatures (after 2 years?) and you can't do much with 8000 signatures, you need 50.000 to speak in German parliament and other topics manage to reach these easily.

I'm also very grateful for the work others have done for years and decades. I certainly didn't say that there were no advocates and that no advocacy work has been done, I was talking about "the majority" and a patient movement like in the UK, Netherlands, US and Norway. Germany has more pwME than Norway, the UK and the Netherlands, so something isn't right and we need to get more people informed and diagnosed.

 

This is actually something I first read in the blog that was mentioned above but also elsewhere.

The guideline committee mentions the IOM report twice. One time to claim that the IOM report list 67 names for CFS.

But the IOM report refers to a list of 67 names that the public was asked to submit as ideas: https://www.nap.edu/read/19012/chapter/5#58 (By the way, I liked the last one "anything but CFS").

So this is the part the guideline committee chose from the 300 page IOM report and it's a deliberate misrepresentation.

 

Here's a quote from Valerie Elliot Smith's site which @Joh linked - by the way thanks! It's very interesting!

https://valerieeliotsmith.com/2017/...ect-towards-a-bigger-picture-revised-version/

@YaS
Thanks for your interesting post and welcome to the forum! Nice to have you here.
Katharina Voss' book was the first ME book I read and highly helpful in staying clear from the psycho folks and getting a correct diagnosis. I like her blog (although I don't share everything she says) and her tone.

I am interested in what the replys by the organisations you contacted will be.

 

@Joh, maybe @YaS meant me? Because I don't want youtube, google etc. Accounts?

 

They still think the 6 minute walking test gave positive results.

https://www.youtube.com/watch?v=Sa3LyYxu49s

(I still love @Graham 's PACE-videos There is even a second mistake about the subjective outcome of ATP. They really don't or don`t want to understand the problems with PACE.

 

I'm also a huge fan of @Graham 's videos. Some of them are even available in German (even dubbed and not subtitled):

https://www.youtube.com/watch?v=oL8EbOzfgLk

More of Grahams' videos in German at: https://www.youtube.com/channel/UCZoMPzeZ4BRVpEnupMkFdyg

 

Some people have asked the Fatigatio about their statement in the Methodenreport in the Fatigatio forums (members only). No answer yet.

 

It's also interesting that in the infamous letter from Frau Klasing in the Methodenreport, she only writes as "I" (as in "I think", "in my opinion"). She shouldn't speak for herself, her job is to represent the Fatiagtio and the members. If you're a spokesperson for an organization you have to represent the view of the organization and keep your personal views (that would ideally align but might differ in some areas) to yourself.

 

@Sly Saint, I don't exactly understand your idea. Sorry.