Thread by @TilmanAndris

The team of German #MEcfs petition #SIGNforMECFS released a statement on 24 Feb., replying to the submissions made by undersecretary of state Sabine Dittmar on behalf of the German government during the public hearing at the German parliament.
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#MEawarenessHour
#pwME #MEcfs

https://twitter.com/loy_daniel_de/status/1496872176334434305

Those submissions were perceived as inappropriate and ill-prepared by many #pwME who followed the hearing online or watched the recording.

Since many of the statements by Dittmar are standard fare,

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

it is instructive to read the careful blow-by-blow responses of the #SIGNforMECFS team, at present only available in German here:
signformecfs.de/?page_id=730#s…
and (as a pdf) here:
signformecfs.de/downloads/SIGN…

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

Machine translation mostly does a decent job, however, and is available here:
signformecfs-de.translate.goog/?page_id=730&_…

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

The excellent arguments presented in this document on behalf of #pwME in Germany have - unfortunately - much wider application and I think they will prove useful in other contexts and for other advocacy efforts.
Have a look!

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

Some snippets...

Evasion 1 - Confusing matters of fact with matters of legal entitlement:
"[M]embers of the statutory health insurance are of course entitled to appropriate medical care according to the state of scientific knowledge, namely the care [...]"

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Response:
"We cannot really understand the reference to this legal right in the context of the hearing."
"The problem is not a lack of legal entitlement, but that in reality this is simply not realized for hundreds of thousands of seriously ill people."

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#MEawarenessHour

Evasion 2 - It's complex, let's act case by case

"[We] don't have a uniform disease model that leads to a scientifically validated standard treatment [...]."

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

Response:

"It must be noted: It is now scientifically proven what ME/CFS is not: namely a mental or psychosomatic illness.

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#pwME #MyalgicE #MEcfs #LongCovid

In addition, ME/CFS is clinically clearly defined and those affected therefore have a common core set of symptoms. A characteristic feature of the disease is the so-called 'post-exertional malaise' (PEM for short),

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

i.e. the massive and completely disproportionate deterioration in the overall condition as a result of exceeding a disease-related stress limit.

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

On this basis, the scientifically proven standard treatment for ME/CFS consists of disease management and symptom-oriented therapy. As already mentioned, ME/CFS sufferers regularly do not have access to such services [...]."

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#pwME #MyalgicE #MEcfs #LongCovid

"The existence of a scientifically proven 'uniform disease model' is not a prerequisite for guaranteeing medical treatment. This is impressively demonstrated by the example of multiple sclerosis (MS) [...]."

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#pwME #MyalgicE #MEcfs #LongCovid

"It is also not clear to us how an individual need for help with a complex chronic illness could be 'carefully clarified, planned and carried out' on the basis of standard medical care if

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

there is neither expertise, awareness nor specific billing options or care structures for ME/CFS [...]."

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

Evasion 3 - This is not a political problem, it's up to the self-governing bodies of the health care system to act.

"[T]reatment provision is the responsibility of the bodies of the joint self-government [...]."

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

Response:
"In this regard, we must first state that ME/CFS has so far been neglected by the self-governing bodies in the healthcare system just as much as by practically all other relevant institutions. [...]

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

This is already clear from the fact that the current situation with regard to ME/CFS is the result of the work of these very bodies."

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

Evasion 4 - Impairments are assessed indepently of diagnosis. Therefore, an ME/cfs diagnosis can't hinder access to services (nursing care)

""Because the benefits of the nursing care insurance are not dependent on your diagnosis or your clinical picture,

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but on the restrictions that you accordingly have."

Response:
"Unfortunately, this statement completely misrepresents the situation in which ME/CFS sufferers find themselves.

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

The nature, severity, and complexity of ME/CFS are currently routinely misunderstood by all health care communities."

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

"[S]tigmatization and ignorance also have a negative effect [...] when it comes to assessing illness-related limitations.

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

As a result, ME/CFS sufferers regularly experience great difficulty in obtaining an appropriate level of care or even an appropriate level of disability and disability benefits."

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#MEawarenessHour
#pwME #MyalgicE #MEcfs #LongCovid

Ending this thread here. Please be aware that this was just a flavour - the full responses by the #SIGNforMECFS team are much longer and comprehensively address many additional points made by the German government.

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Curious to read what was said about medical guidelines, about adding ME/cfs to a list of complex diseases requiring outpatient specialist care, and about the position of the German government regarding the resolution of the European Parliament of June 18, 2020?

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Access the submissions and responses here (in English):

signformecfs-de.translate.goog/?page_id=730&_…

Or here:

signformecfs.de/?page_id=730#s…

And here:

signformecfs.de/downloads/SIGN…

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