News from Germany

(Germany)
“Bundestag Health Committee supports ME/CFS care and research”
[on May 10]
https://www.meresearch.org.uk/bundestag-health-committee-supports-me-cfs-care-and-research/

 

https://twitter.com/user/status/1658186705940144130


I can't find hope in any of those promises anymore, but at least this is on target. I don't know what the G7 decision means, we'll have to wait for details, but there are very few organizations, if any, that can deliver something here. More than anything, because every single word of every single statement from those proceedings is already the result of a long process, it usually means that there is already some inertia rolling.

It's more meaningful than coming from the WHO, since they have basically zero leverage or executive powers. The G7 is all executive power. I'm still very skeptical, but this is so rare to hear.

 

https://twitter.com/user/status/1658454761501237249


Not invisible, though. Just covered up. That's what cover-ups do: they hide failures.

 

Pretty shocking account of a German psychosomatic rehabilitation clinic that is pushing GET onto patients. Again the complete disconnect between what the patients report and what the clinicians believe. Somehow featuring BS as bad and old as "pining for a baby". This 19th century bigotry is still around, today, during the birth phase of AI. Amazing.


Useful or risky? What is behind the dispute over psychosomatic rehab at Long Covid
https://web.de/magazine/gesundheit/streit-psychosomatische-reha-long-covid-steckt-38321770
https://web-de.translate.goog/magaz...8321770?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en


There's something about a recent press release (the Master's thesis discussed recently) boasting Study proves: Psychosomatic rehabilitation helps with long Covid. The study hasn't been published, but they're selling it as a done deal anyway. The BPS side of things is really completely stuck in an infinite loop. This is genuinely fanatical.

I don't know the legality of all this, but governments forcing people to be continuously infected with a virus is one thing, completely refusing to develop any actual treatments, opting for fairy tales and discrimination, for those who get ill and disabled is a whole other layer of screwed up.

 

It's actually the pension authority that is pushing GET onto patients. No GET, no disability pension. It's a great way to discourage people from claiming a disability pension, you have to prove that you've tried "rehabilitation" before you can have one.

I'm in danger of breaking Godwin's law here.

 

Twas the same in the Netherlands, but the new ZonMw guidelines should stop that. I was applying for disability benefits and I luckily didn't have to go through a course of CBT+GET because I had been previously tortured with one. On my own volition no less.

 

The 2018 report by the Dutch Health Council had a statement about this, saying (translated from Dutch):

"CBT and GET are not to be considered in ME/CFS as adequate by general medical standards treatments to which patients to which patients can be obliged. The choice to refrain from CBT or GET should not lead to the judgment that the patient is missing his opportunity for recovery, is not cooperating in his or her recovery or culpably acts."​

 

Glad we can still be obliged to other things apparently. Anyway, back to the German news. Isn't there work being done on new guidelines for you too? There's so much going on that I forget which is which.

 

A story of a mother objecting to forced rehabilitation causing severe deterioration to her son facing legal proceedings, the old Munchausen's BS. It requires a subscription so I'm not sure of the details, but it appears the child was taken from the parent.


Reports from two doctors brought the mother of a child suffering from Post Covid into the focus of the youth welfare office. Now she is fighting against serious allegations – and about getting her son back.
https://www.spiegel.de/gesundheit/d...utm_source=dlvr.it&utm_medium=twitter#ref=rss

In the comments to another thread, from journalist Martin Rueker, the German neurologist Kleinshitz (or something like that) is defending it and vilifying the entire ME community. Or so I saw from a few glimpses, as it appears that Dr K used a tool to auto-block anyone who likes replies made by Rueker. Hence why I'm not bothering to check the spelling, dude just mass-blocks disabled people like it's a hobby.

(@Weber_Nina tagged here is an editor at Spiegel)

 

Not sure this is the right place to post this—it’s a poll about fycompa looks like it helped one person but not another.

https://twitter.com/user/status/1678412484598718465


improvement immense. For more than 5 years I had severe migraines up to 20 days/month, then since Covid extreme "brain symptoms" - since then 2x light migraines in 5 months!!!!, extreme sensitivity to light gone, sensitivity to acoustic stimuli almost gone, no more "blockages", no nervous

 

https://twitter.com/user/status/1682229713606176770


German government decimates research funding for Long Covid

https://www.wsws.org/en/articles/2023/07/21/twuv-j21.html

 

So deeply frustrating.

(If ‘decimate’ literally means reduce by ten percent, what would reduce by eighty percent be?)

 

Hmmm. 80% is four fifths, so quattuor quinquae. Decimatio is the killing of every tenth man, while centesimatio is the killing of each hundredth man, a less brutal punishment for collective failure, so it’s the ordinal (decim, centesim) plus atio, indicating action. But fractions don’t really have ordinals in the way that integers do.

So the best we can do may be to round up the four fifths to one (prim), giving us primatio and in English, primation or primate, thus saving another €21m from the long covid research budget, at the cost of some confusion with monkeys and popes.

Edit. Actually, .9^15 is near as dammit .2, so anything reduced by 80% has been quindecimally decimated.

 

https://twitter.com/user/status/1690057325942317063


German Chancellor Scholz answering a question from a Long Covid patient, with auto-translated auto-generated English captions. He says he personally knows a young man lying in a dark room all day…

 

A small "mourning walk" took place in Berlin on 8 August to mark Severe ME Day. The participants were dressed in black, with ear protection, sunglasses and held signs. After the walk of 300 metres, there was a lying demonstration.

There were several press reports, even the public news in the evening television programme reported. It is progress that even smaller actions on ME get such media attention.

https://twitter.com/user/status/1688930197893189633


Pictures: © Maria Wagner

 

Press release from Germany:
https://www.guetsel.de/content/7378...anteil-am-stoerungsbild-nicht-verleugnen.html

English translation:

CFS and fibromyalgia patients should not deny the psychosomatic part of the disorder


Social counselor: “Those affected can find peace with their clinical picture and think multisystemically!”
September 1, 2023 , reading time 2 minutes, 57 seconds, DOI:10.DE170236410/GÜTSEL.73787


Photo: Zohre Nemati, information on Creative Commons (CC) Licenses , the publisher is responsible for press releases, the source is the publisher



CFS and fibromyalgia patients should not deny the psychosomatic part of the disorder

• Social counselor: »Those affected can find #peace with their #disease picture and think multi-systemically!«

Constance, September 1, 2023

Numerous organic diseases are accompanied by a psychogenic component. This also applies to fibromyalgia and chronic fatigue syndrome ( CFS ). The head of the nationwide self-help initiative, Dennis Riehle ( #Konstanz ), is currently pointing this out in a broadcast and encouraging #patients to face the psychosomatic part of their illness in order to make peace with it and not be in constant resistance to it . Because in the opinion of the psychological consultant from #Bodensee , who has been affected for eight years and also has #ParkinsonIf you are ill, accepting a psychological interaction does not mean allowing yourself to be pushed into the “psycho corner” – as many patients do out of fear of #discrimination and #exclusionoften argue: “I hear so often from many of those affected that they are not crazy. Of course they are not imagining their complaints, but I still think: This reaction makes it clear that we have a problem above all with not accepting mental illnesses as a full-fledged illness. There is no longer any shame in responding to crises and illnesses emotionally as well. On the contrary. We need a change in understanding of syndromes that move in the border area between body and psyche. From my own experience, I advise anyone who is suffering from a serious illness to seek psychotherapy and to be self-confident and confident when it comes to being looked at askance by others just because of that. Appearing with a convinced view of us, that can also be the #A visit to the doctor definitely helps. Because the fact that someone is not taken seriously is often due to the self-image that they radiate and open up for attack."

Riehle has already supported more than 4,000 patients as a social advisor and therefore knows: “I think it is more important today than ever to act as an informed patient. We should acquire knowledge about our illness from reputable sources, but we should not communicate this knowledge to the doctor sitting opposite us in a know-it-all manner, but rather with questions and offers, thus indirectly asking him to find out for himself. However, the accusations or prejudices that we use towards the #medical professional or #therapist are not very helpfulapproach. It's more about arousing interest in the clinical picture and your own story of suffering, without wanting to elicit sympathy or appearing with demands and expectations. Nor should we dramatize unnecessarily. Because anyone who puts themselves in the foreground is quickly seen as arrogant and quickly receives a stamp from the treating doctor and is placed in unwanted corners. Instead, I recommend making suggestions. You can request examinations from the #doctor or suggest treatment approaches. According to the motto: ›What would you like from #Physiotherapyhold?’ and ‘Would you like to check the tender pain points?’. This makes it very clear to him that you are working with him, but not patronizing him. I've already achieved a lot with it. In summary: Let's be questioning, not demanding patients. Let's remain authentic and also plausible in our self-portrayal. Let's refrain from lectures and let's be constructive." In conclusion, Riehle appeals: »In addition, it is important to continue to strengthen #self-help as a political lobby and thus to achieve that the care structures for #affectedcan be improved. Let's contact the relevant authorities with our stories to make it better known what it actually means to live with CFS or fibromyalgia and where there are still problems. Let's encourage science and research to stick with the topic and continue to unmask the diseases, because there is still a lot of uncertainty about their background and connections," said the journalist.

The self-help initiative offers free #psychological advice, #social advice and #nutritional advice as well as #health promotion nationwide .



Gütsel webcard, more …

Dennis Riehle
Martin-Schleyer-Straße 27
78465 Konstanz
Telephone +497531955401
Email riehle@riehle-dennis.de
www.selbsthilfe-riehle.de

 

But there is no evidence of this, and most importantly no evidence that your counseling is anything more than a resource sink.