TiredSam
Committee Member
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.
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.
