German ME/CFS Association monthly updates

Article on the topic, if Charles Darwin might have had ME. Original sources like his diaries/letters were checked. Purely hypothetical of course.

English (Google translate) version of the article: https://translate.google.com/translate?sl=de&tl=en&js=y&prev=_t&hl=de&ie=UTF-8&u=https://www.mecfs.de/litt-charles-darwin-an-me-cfs/&edit-text=

 

The monthly News-Update is online.

Original German version: https://www.mecfs.de/me-cfs-news-update-06-2018/

English Google translate version: https://translate.google.com/translate?sl=de&tl=en&js=y&prev=_t&hl=de&ie=UTF-8&u=https://www.mecfs.de/me-cfs-news-update-06-2018/&edit-text=

@Gary Burgess A notice on The ME Show is included (Google translation sounds a little strange).

 

Forgot to mention: @Emsho and @B_V you're also included in the monthly German news update on ME linked to in the post above.

 

Yes, I also saw the Google translation and had to chuckle. But I can assure you that the German version is correct.
BTW I listened twice to your interview because I liked it so much and told my mother today about something you said because it resonated so much with me (about having colleagues again via volunteer work from bed).

 

The German Association has – in cooperation with the team of Prof. Scheibenbogen – published an info portal for medical professionals on their website. Physicians and pharmacists can log in with their Doc-Check code.

- German version: https://www.mecfs.de/was-ist-me-cfs/informationen-fuer-aerztinnen-und-aerzte/
- Google translate version: https://translate.google.de/translate?hl=de?sl=auto&sl=auto&tl=en&u=https://www.mecfs.de/was-ist-me-cfs/informationen-fuer-aerztinnen-und-aerzte/


Facebook post:


Translation of Facebook text into English:
New information portal for physicians
Physicians can now download specialist information about ME/CFS specifically for medical professionals from our homepage. We have compiled these together with the Charité Berlin.
Interested doctors only need DocCheck access. This is necessary because certain information may not be freely accessible according to the Therapeutic Products Advertising Act and is protected by licensing regulations.
With this offer we want to promote scientific education among experts and facilitate access to central documents for your family doctor/internists.
In the portal, physicians will find important reviews of ME/CFS, possible pathophysiology, diagnostic tools and information on further training and symptomatic therapy.
You can find the portal under the tab »What is ME/CFS?«.

 

I am very sceptical regarding this doctors' portal. I do appreciate an information portal for doctors and I do see the chances and pros.

BUT. We all have experienced very much when it comes to ME. A good proportion of mistrust is the result. Neither patients nor carers nor members have access to this portal. Who tells me the info on that portal is decent, e.g. scientific, or doesn't contain GET/CBT, Lightning Process, Gupta Retraining, Prof. Stark's approach, yoga/meditation or whatever link to the possibility of ME being psychological or whatever questionable content/advice? I mean, this is supposed to be for doctors that will treat patients with ME, and I don't know what they are told.

I am very honest: The negatives regarding DG for ME/CFS increase on my side. I really do miss some transparency. It feels like patients/members/carers get excluded from relevant processes and information.

 

@Inara re: the login
'Dies ist notwendig, da bestimmte Informationen laut Heilmittelwerbegesetz nicht frei zugänglich sein dürfen. Außerdem sind sie zum Teil lizenzrechtlich geschützt.'
(Google translates it as: 'This is necessary because certain information may not be freely accessible according to the Remedy Advertising Act. In addition, they are partly protected by licensing law.')

So to me it seems that they have to protect themselves from being sued for offering information (that could lead to a patient trying to medicate him/herself without monitoring by a doc, for example.)

I haven't heard of any negative experience with the DG for ME/CFS yet. I strongly doubt (from all the other information on their homepage) that they would advice Gupta, LP, GET/CBT, etc. to doctors. And the collaboration with Prof Scheibenbogen / Charité for me is another hint that it can't be that bad.

Maybe @Joh could summarize what kind of informations are hidden behind the log in?

 

The homepage of the DG for ME/CFS provides a flyer about the content of the information for docs.
I'll upload it here. The content for docs has to be behind a log in, because they are naming supplements and are providing studies that are protected by licencing regulations (normally behind a pay-wall from a medical journal).

 

I understood this in the first place. There are ways to solve that "problem". I won't list them here.

I don't feel it is right due to several reasons:

I don't merely trust for good and well-known reasons. ME has a certain past, and patient organisations played a role in it, not always positive.

I and we are the sufferers. If there is stuff that could have the potential to help us, we should know that, too. We should know who could help us. It shouldn't be kept secret. It should be made public. I and we will most probably never meet those handful doctors that inform themselves about ME. Why should a possible treatment remain exclusive to some persons?

I also fear that those doctors will have to be paid privately, since the insurance won't pay for ME treatment in general or since those doctors are private.

I don't see a problem with self-responsibility - we need that if we want anything to happen and to change. I don't believe in the therapeutic state.

It shouldn't be the goal of a patient organization to make information (and possibly treatment) accessible only for a solvent crowd - and most of us aren't very solvent.

Before I recommend something, I want to know what I recommend.

I guess that Prof. Scheibenbogen counseled. Why doesn't she publish her knowledge, e.g. in a book or paper or whatever? This is something I am sad about also when it comes to other ME doctors.

We deserve to know if there is something that can help us - or if misinformation is shared. (I don't say it is, because I cannot know.)

Ok, I can talk to my GP and ask him to share the info with me. That's maybe how I'll learn about it.

And last, I think this is something the members should have decided on, too, as should be the case with any patient organization. A society/club/whatever shouldn't be like a party that I once elected and then they do what they want.

If a public list of those doctors who accessed the portal and/or who attended a workshop by Prof. Scheibenbogen were published, and if those doctors made public what they learned, e.g. on their homepage, that would change the picture a bit because it would be very helpful to all of us.

Maybe the DG plans a patients' portal, too (maybe it needs to be members only), where you could find the same information only without dosages or whatever is deemed as critical. Maybe they plan a public treatment info that will contain even less information due to legal reasons. But sadly I don't know. If so, I apologize.

Still, I see the potential plusses. This is the right direction. And I have a lot of respect for establishing this portal.

 

At least every DG member should know this, not just a few selected ones.

 

Prof. Scheibenbogen has published a lot and usually her papers are 'free access', which is great.
At the Charité, they are sharing their knowledge with GPs, as they from time to time provide seminars. They also educate medical students (the future docs), as ME/CFS is part of the curriculum at the Charité.

That is a good idea and why not write to Prof. Scheibenbogen / the DG about it?
I will also give the flyer to my GP so he or one doc of his team may attend the next training seminar at the Charité.

But again, not everything they 'have learned' may be published on their websites due to legal restrictions. Another example of our 'Heilmittelwerbegesetz' is that gyn/obs are not allowed to inform about legal abortion procedures. Only special councelling centres can inform women about that. There is no way around that today [although this might change in the future].

I can imagine huge problems! That is why I can totally relate to the need to adhere to recent law.

That is a problem we need to work out with the health insurance companies. It is not the fault of or exacerbated by the Charité or the DG.

I tagged @Joh as she is working/volunteering for the DG (if my memory doesn't fail me here). So I thought she could ask directly at the source.

Both valid points. Again, you could share your concerns with the DG. And then see if their responds can reestablish trust.
At the moment, I put my trust in the DG working according to its statute.

I must say that I'm also curious what informations are behind the log in. As a physiotherapist, I guess I couldn't access them (as they are specifically only for docs). But I don't think that one would discover new stuff that we haven't already heard of (or already tried).

Edit: typo