News from Germany

The following has come to my attention (thanks @Philipp):

http://dip21.bundestag.de/dip21/btd/19/126/1912632.pdf

It is a reply to a list of questions which a few German MPs put to the government:

The answers basically say that it's not the Government's concern, it's up to the scientists. The answer to question 10 is of interest:

10. what consequences does the federal government draw from recent scientific findings that activating rehabilitation measures are contraindicated and can lead to a lasting deterioration in patients' health (cf. OxCATTS/Oxford Brookes University, "Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes", February 27, 2019, at: www.meaction.net/wp-content/uploads/2019/04/ NICE-Patient-Survey-Outcomes-CBT-and-GET-Oxford-Brookes-Full-Report- 03.04.19.pdf), and what does it intend to do about this continuing common practice?

Answer:

The more recent findings cited above, according to which activating rehabilitation measures are contraindicated and could cause long-term damage to patients' health, are the result of a single study published in 2019 and disputed in expert circles with regard to methodology. To the German government's knowledge, however, the current study shows that cognitive behavioural therapy (CBT) or graded exercise therapy (GET) are moderately effective in treating CFS/ME and are associated with better physical function and less fatigue (Chronic Fatigue Syndrome, Robert Koch Institute, 2015).

This is confirmed by the results of a systematic review conducted by the Cochrane Library in 2017. Based on an evaluation of good quality studies on exercise therapy in CFS, it concludes that exercise therapy is a promising treatment option for adults with CFS. Included in the analysis were only randomized controlled trials in adults over 18 years of age, of whom more than 90 percent had a clear CFS diagnosis (available at: www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/epdf/full).


So, the horrendous Robert Koch report (discussed at https://forums.phoenixrising.me/thr...erman-with-link-to-english-translation.43277/) and Cochrane review are cited to maintain the GET / CBT position and dismiss newer findings, which are "in Expertenkreisen hinsichtlich der Methodik diskutiert", which means experts disagree with the methodology. The German word "diskutiert" sounds like "discuss", but it actually means argue or disagree, so that's a very snooty and dismissive sentence (Germans do snooty and dismissive sentences rather well and could give the British a run for their money any day of the week).

Question 5:

5) How does the Federal Government assess the fact that ME/CFS is almost unknown in many parts of the medical profession or is trivialised or diagnosed wrongly, i.e. as psychologically conditioned, and what does it intend to do about it?

Answer:

It is not the task of the Federal Government to assess and evaluate the medical profession's knowledge of individual diseases. In principle, it is the responsibility and competence of medical-scientific institutions to compile, update and disseminate the state of the art in the diagnosis and treatment of diseases. This is achieved in particular through the consensual preparation of high-quality, evidence-based medical guidelines. In the S3 guideline "Fatigue", which was developed under the auspices of the German Society for General and Family Medicine, a separate sub-chapter is devoted to the CFS/ME clinical picture (cf. also answer to question 17). One of the duties of practitioners is to keep abreast of developments and new findings in their respective fields.

We discussed the horrendous "Fatigue" guidelines here:

https://www.s4me.info/threads/new-german-guideline-for-me-published-today.2202/

Also interesting is the answer to question 3, that only 206 sufferers managed to get a disability pension with a CFS diagnosis in 2018. The number has been steadily increasing from 41 in 2010, so it's progress of a sort, I suppose. It doesn't say how many sufferers, unable to work, had to accept a diagnosis of depression to get their money from a system they pay into all their working life.

So the answers to the questions are without exception heartsinkingly awful. The only possible bright light is that it shows such a level of ignorance / indifference on the part of the government that there are plenty of targets to go to work on, but really, attempts to try to involve politicians in improving the situation in Germany usually backfire horribly, so it's all very depressing.

 

I'm so sorry to hear this.
How are patients and carers organised in Germany?

 

We have a couple of organisations, biggest is Fatigatio which seems fairly ineffective and disgraced themselves recently:

https://www.s4me.info/threads/new-german-guideline-for-me-published-today.2202/page-13#post-74207

There is the newer, younger, more motivated Deutsche Gesellschaft für ME/CFS, which maybe @Joh can tell you more about.

 

We don't have "real" GET in Germany (this one year therapy by a physiotherapist). We have psychosomatic rehab clinics for depression and all sorts of illnesses which are thought to have a psychological component or you can go to a psychotherapist who will tell you to do more or just your GP.

It's strange that the PACE interventions are always cited and don't even exist here (while the authors of FINE and PACE claim that only "true" CBT and GET helps.)

It shows even more that the authors of the guidelines, the authors of the Robert-Koch-Institut report and the government just don't care.

(This is just an observation. I wouldn't ask for Fatigue clinics with CBT and GET in Germany.)

 

Yes, the sad point is that rehab for depression, which is where ME sufferers end up, includes exercise, and you have to show that you have attempted rehab before being eligible for benefits. So ME sufferers who are unable to work in Germany are in a real catch 22, if they want a disability pension they have to show that they have tried to exercise their way out of their depression.

 

I guess several weeks in a rehab clinic can be much worse than GET where you can rest at home.

 

Well there's a woman in this film who describes it:

https://www.youtube.com/watch?v=vjtoz4Ojdeo

I've spoken to her personally, she was sent home from rehab after a few days after collapsing.

The mother of the two daughters in the film says if you have a child with ME, get a lawyer.

It's just shit here.

 

That makes me so sad!

 

Deutsche Gesellschaft für Mecfs already has published a statement
https://www.mecfs.de/stellungnahme-...VYtRe5zMIuq-BJkCsvwAHUexEHuYamChxBrWrYdDgSuNs
(in german)

 

I'd just like to highlight that the Chalder et al study we discussed here is cited as evidence base for what they are doing to patients, while the part Sam cited here:

...is so dreist that I wonder whether it was written with the intention to victim-blame and piss off as many different involved groups as is humanly possible at once. Actual scientists, patients who have been harmed, parents whose children have been abducted and tortured under this antiscientific ideology, you name it.

There is a lot more in those few pages that is horrendously offensive, derogatory, buzzwordbingo, in denial of reality etc, but what struck me as interesting is the sheer actual incompetence that was displayed overall.
The answer to questions 15/16 touches on the fact that the DRV (Deutsche Rentenversicherung, aka 'our DWP') is supporting research into other fatigueing illnesses, citing cancer and MS as examples. Sure - whoever wrote this comes across as someone who does not understand that this really is not the same as researching ME or that there is the slightest possibility that findings may not be unequivocally transferrable, but this may be in part because the format forces a certain amount of brevity. But now I'm actually really curious which research projects they are talking about and how well those would hold up to scientific scrutiny. I have heard repeatedly that people with MS have problems getting the support they need because they cannot formally prove in a legal setting how disabling their fatigue is, so if said research projects happen to be of the quality I have come to expect from people who tend to look into this sort of stuff that may open another can of worms entirely.

Minor tidbit: According to the statement by the DG which diwa linked to the (abysmal) guideline document that is referred to several times has lost its 'S3-status due to a lack of scientific quality'. I have heard from other patients who were forced to go to court over their cases that this and similar disproven documents are still cited as evidence against them. We are not talking recently disproven either, e.g. the RKI-report is half a decade old by now. So it apparently is not enough to simply lead the scientific debate around single bad documents as the antiscientific movement simply ignores what is actually happening there. It seems like we have to somehow enable us to communicate to a broader audience that every institution that we have to deal with does not even try to adhere to any scientific consensus that might stem from the evidence and the discussions around it. This is not a matter of dissenting opinions among academics. To me, this looks very much like a matter of the government, healthcare and judicial system consciously ignoring reality with the very obvious and conscious intent to deny severely ill people a chance at mere survival. This abhorrent and ultimately fascist procedure has to be stopped.

 

I wonder if it is intentional to makie receipt of disability benefits depend on the completion of a treatment that is known to be very difficult for patients to complete.

 

That reply kicks ass. I've just become a member.

And noticed that they recommend S4ME in their FAQ:

 

The spokeswoman for health of the green party (who was involved in sending the questions to parliament) also published a statement today: https://www.klein-schmeink.de/aktue...ng-der-situation-von-an-mecfs-erkrankten.html

Google translated version: https://translate.google.com/transl...ng-der-situation-von-an-mecfs-erkrankten.html

 

Thanks for your interest!

The situation is difficult. When I was in the Charité, they told me that Germany is 10 years behind the UK, but it rather feels like 30.

The community is small b/c people just don't get diagnosed with ME (so don't know they have it). Thus the patient organizations are also tiny.

We have the same BPS-problems like all countries (children are taken from families etc. – Nigel Speight compared one case of a German girl to Karina Hansen) but the BPS theories really can flourish b/c we don't have a broad opposition like e.g. in the UK. As an example, no German scientist or doctor has signed David Tuller's open letters so far.

Yep, there is the Deutsche Gesellschaft (German Association) and also the Lost Voices Foundation and #MillionsMissing Germany. They all cooperate and all do amazing work in my opinion. But they are run by dedicated volunteers and don't have the resources (yet) like NGOs in other countries. But the community is slowly growing and I'm hopeful.

The biggest organization in Germany (1600 members), Fatigatio, the only one that has some resources and some paid staff, is in my personal opinion like Action for ME but much more unprofessional, incompetent and ineffective...

Here's an overview of the German NGOs in English: https://me-pedia.org/wiki/Category:German_patient_groups

 

Here's an overview for the currant Guidelines in Germany

Remember when there was the big petition in the UK b/c ME was supposed to become part of the guidelines for "functional disorders"?

In Germany ME is part of:

- the guideline for functional disorders

- the guidelines for "Socio-medical assessment of mental and behavioral disorders" (you have to go there to get benefits)

- Robert Koch Institute report (5 x 30 min exercise a week and you're fine)

- and of course the infamous chapter in the guideline "tiredness".

List in English: https://me-pedia.org/wiki/Germany#Medical_guidelines

ME doesn't have its own guideline and doesn't have a website (it's not even mentioned on official government health websites).

 

It is strange. In a letter by Ramsey to one of the journals, I suspect it was about 1965, he commented on how there was a German doctor with a clear understanding of the condition. It shows how easy it is for knowledge and understanding to be lost.

 

Perhaps Deutche Gesellshaft could recommend DT on Virology blog as well for those who speak english.
I realise it's not a good situation in Germany for ME sufferers but at the moment I'm feeling a little bouyed overall that the thin edge of the wedge has been inserted and pressure is cracking open the door that was shut in our face that represents real progress toward recognition and action.

There may even be a few others who feel as Klein-Schmeink does. There may be others who don't know anything about the issues and may be receptive to learning the real problems around PACE et al.

 

Good idea and they have shared DT's fundraisers and signed the open letters and reported about his work.

In general it's difficult that most info on ME is in English. Advocacy means spending quite a big chunk of time and energy on translating and subtitling.

But the situation as a whole is worse in Switzerland and Austria and I guess much worse in eastern Europe, where Mike Harley sometimes can't find any pwME or ME organization to interview (and I guess southern Europe?).

 

True and it's really ridiculous that it keeps being mentioned by government and BPS proponents in Germany when it doesn't even exist.

Although I know how harmful and misguided GET is, in a sense, at the very least the concept of GET acknowledges that patients can't exercise right away. I was in two psychosomatic clinics and one psychosomatic rehabilitation center (without ever having psychological problems, just the ME symptoms) and it's all about exercise and activity but there is nothing graded. We had to do aerobic classes, tabletennis tournaments, ballgames, nordic walking, walking to a grocery store 30 min per way to "practice grocery shopping" and cook afterwards etc. The days are packed with activity and exercise.

And the clinics I was to weren't only for depression, but patients with every kind of "mental illness" were mixed together and people battling anxiety or eating disorders or self-harm can be outwardly surprisingly fit and active in my experience, so it wasn't like stereotype rehab low intensity stuff.

Of course GET isn't much better and any kind of exercise/activity treatment needs to stop.

 

In the answer the governement says that the "Ärztekammern" are responsible. (Don't know the right English term for Ärztekammer – every state in Germany has its own local medical authority).

This is what the Ärztekammer in my state wrote about CFS in 1993:

Source: http://arnold-hilgers.com/wp/wp-content/uploads/2010/06/Hilgers-Info-1993-06-17-Schreiben-Ärztekammer-Nordrhein-zum-gescheiterten-Versuch-CFS-wissenschaftlich-zu-entkräften.pdf

I know, it was 1993, but they haven't changed at all. Until 2014 they had a guideline on CFS online, that was worse than the guideline tiredness (including the usual stuff about no testing, not giving the diagnosis and something about how we're just overwhelmed with city life). They still write BPS-stuff about CFS when contacted.

These are the guys that the government sees in charge of our life. It's enough to drive one to despair.