New German guideline for ME published today

Yes, that was my decision, too.

 

I don't think this document is something you have to tackle privately, Inara
Again, we need to sort out what we even theoretically could be suing for before we try to gather funds.

Since the German association was more or less brushed off as a self-help group, does anyone think it could be helpful to bring in help from the international science community in some way? Again, we probably should sort out whom to write to before we go around asking for comments - DEGAM does not seem like the kind of organization that can be drawn into a discussion on real science. How can we even begin to apply outside pressure?

 

Yes.
For this a lawyer's advice would be practical. I am not an expert.

I have two options. Is there an interest? Afterwards we could have concrete projects.

I think about that, and think, and think...I don't know. I have no connections.

 

This has been the second (to my knowledge) update to the guidelines with involvement by patient groups. It has become shockingly clear that they don’t care about the science unless it fits their agenda. Once again we are faced with the bizarre situation that the same people who prevent any patient input are appointed as "neutral" mediators. We have even contacted members of the press, for example Nina Weber, who writes for SPIEGEL and who has reported favorably about ME before. She wasn’t interested and didn’t give us any hints as to why.

We need some kind of escalating strategy. Afaik, a medicinal lawyer has been consulted and didn’t see any basis for legal action as the guidelines are merely that: guidelines. International pressure may be a way. We are fighting these guidelines country by country when the underlying problems are all the same and resources are scarce.

 

This is just a tiny start but I thought about writing an article for the international MEAction website. My English isn't good enough and would love to cooperate.
Also contacting David Tuller (who's of course drowning in work himself and every country would love him to help them, but even one tweet or one mention in a sentence could be a start) and I wanted to write to all of the international ME groups I'm part of about it.
Also contacting Natasha Lipman (BBC) on Twitter, she seemed interested in the German situation - of course she wouldn't write an article but I think raising awareness might be a start. I'm always surprised that other countries have such a positive opinion on Germany when it comes to ME (I guess because of the Charite and some labs that test for lyme).

 

Very interesting post, @Nina, and welcome to the forum!

Yes. Unfortunately, my only idea is the legal stuff, which is only an idea.

That is what I was told. Maybe from a medical law point of view nothing can be done. I don't know.
Still, I feel something should be possible. Your right of free opinion is limited when it comes to criminal acts or basic human rights. Furthermore, Degam is not an individual, but an organisation. On the other hand, my GP didn't value guidelines too high and said the interest in them is not too big.

It would be advantageous if resources were bundled, and then tasks shared.

 

Yay, @Andy was so nice to share on the Science for ME facebook page:

 

Thank you so much @Skycloud!

The following is not directed at you, just some general spontaneous thoughts on the situation in Germany (in no particular order and not complete), if anybody from another country is interested.

The situation is pretty bad (as in all countries). We've also had children taken from families (Nigel Speight compared one case of a German girl with very severe ME [tubefed, bedbound] who was held hostage at a German university hospital and had to endure "activation therapy" for nearly two years to Karina Hansen) and we also have the diagnoses of Münchhausen by Proxy (or FII) and Pervasive Refusal Syndrome. I know of at least one family who's under the thread that the child is taken away right now. The situation for children is especially dramatic, we don't have a single place or doctor (that I know of) where children can be diagnosed and no publication in German on pediatric ME. In addition there's the German law that home schooling is not allowed and children have to turn up at school (parents can go to jail over this). I read of children who were forced to exercise and became invalids (but don't know anybody personally).

We don't have a single ME or fatigue clinic (I know they suck) and are referred into the psychological system into psychosomatic clinics and psychosomatic rehabilitation centers and treated in groups with people with mental illnesses - what means that the approach is being active and exercising and getting rid of your fantasie of having an organic illness.

We don't have much info on ME in German and rarely up to date info. When I ordered the German equivalent to the MEA's "purple book" for GPs last year it had 16 pages and 4 of them were still on XRMV (as it wasn't updated in 7 years)!

Someone said about the guideline that in regard to Gandhi's saying (first they ignore you, then they laugh at you, then they fight you and then you win) the US, UK and Norway are in the fighting phase while in Germany ME is still being ignored. I thought that was quite fitting. When I was diagnosed in the Charite they told me that Germany is 10 years behind the UK.

The language barrier is a huge problem (everything is in English). A lot of German patients have never read the IOM report or David Tuller or PACE, the pediatric primer and so on. A huge chunk of time and energy from organizations and volunteers go into translating/subtitling things (of course not the IOM report of the pediatric primer but shorter stuff).

What we need is a patient movement and in theory we should be 50.000 more pwME than in the UK but nobody is diagnosed. So the organizations don't have members and there's no active opposition. Just as an example the ME Association has a following of 11.000 on Twitter and other UK organizations have similar numbers, the German Association has 130. So far we had two screenings of Unrest and one Millions Missing event and zero Euro government funding in Germany ever.
But I know that other countries are equally bad or worse off.

 

At the Charité I was also told that the situation was even better in Estonia and Latvia (I have not checked that statement).

 

How is the situation in Austria?

 

As far as I know the situation in Austria and Switzerland is even worse than in Germany. At least in Switzerland there's no real patient organization, no researcher, they had to travel to the Charite to get a diagnosis in the past (but the Charite only diagnoses people from Berlin now). I don't know much about ME in Austria, but I guess that isn't a good sign. I volunteer for the OMF (with translations) and they asked me yesterday that they don't know any group in Austria. No Millions Missing or Unrest screening in both countries so far.

 

A message to the S4ME Facebook page highlighted a German Facebook group, ME/ CFS - die Plauderecke für selbst Betroffene

Might be something our German members are aware of already but thought it was still worth posting.

ETA: They provide the above group as one example of larger online German ME groups than there are on forums.

 

Thanks @Andy!

The sad thing is that apparently they don't do anything than to chat in these groups. German petitions don't get signatures, articles don't get comments or upvotes, Unrest has two ratings (!) on German film sites (one is from me, it's one click). I subtitle a lot of videos and never get any feedback (apart from one time the complaint that "Fun with CFS" talks to fast to read the subtitles). I think people don't even watch stuff like the Unrest trailer. How is it possible that no one even comments on Unrest and it has German subtitles. I don't get the German pwME. Sorry, this rant is not directed at you, Andy, just a general outburst of frustration that I feel everyday.
I used to work for NGOs until I became homebound and only knew full time activists who worked in advocacy and spent their free time on advocacy and know that it's possible to change things and this lethargy is shocking. There is so much that can be done even from bed, my to-do-list is endless and I spend every day solely on this. This situation will not change if we don't all work on it together. We have to change this, nobody will do it for us. Sorry for this rant but the majority of the German community is driving me crazy and I need them to get my life back.
The tiny Netherlands are our neighbor and have like 40.000 pwME (in comparison to our 240.000-300.000) and have a lot of translations, Millions missing protests, Unrest screenings, media reports etc. and I follow their activism and can't believe it that we don't even manage to come close in Germany.

 

Nothing to see here, move along.

I will resign from fatigatio, as mentioned on the other thread about this. Fortunately I am not currently affected by this because I am in hiding from the health authorities, don't claim anything and never go to my doctor. It's like hiding from the Spanish Inquisition. I hope my health never causes me to have to break cover. What a way to have to live in 2018.

 

@Joh can't think how to help with the pwME in Germany issue but......

A long shot (and possibly something to add to your list) is the EU parliament. One question re ME/CFS was raised last year (see thread on EU qs) by an English MEP. In the EUP she is a member of the S&D
there are german MEPs in the same group:
http://www.socialistsanddemocrats.eu/new-meps

Another thing, which you probably already know, is Carmen Scheibenbogen
http://me-pedia.org/wiki/Carmen_Scheibenbogen
https://bergento.no/2011/10/medical-breakthrough-in-cfs-sc/

sorry can't think of anything else that might help.

 

DEGAM werden sich wohl was gedacht haben.

 

I'll translate anything you write into English for you.

 

I'm not on Facebook, still thanks!

 

Oh, I so feel like you, @Joh.

One reason why I don't do any upvotes or comments is I don't want to register. I like as much data privacy as possible. Second, it seems I don't have too much to say.

I watched the Unrest trailer, and I still wait for the DVD. But to be honest I don't know whether I can bare watching it.

What you express is a HUGE problem in Germany. It seems there was a pretty active time end of the 90s. Today, almost nothing.

It's a shame fatigatio has thousands of members - and the German Association has only 100. Again, there seems to be utter disinterest here; aren't the members informed about the actions of fatigatio? But one must not forget that fatigatio is still supported by doctors; even Mrs Scheibenbogen does.

@Joh, I can join in translating if needed. Just say it. (But I don't have a google, yoitube account and so on.)

 

Yes! So, let's take what we have and try to make the best of it. You won't get the majority of the Germans - even not with BIG topics - it's not their mentality. It seems we will need help from the outside.