Prusty: U-clinic Würzburg accepts ME/CFS patients

[Martin aka paused||M.E.]

Prusty tweets.. I hope I can get there soon!

 

[pattismith]

 

[godlovesatrier]

oh damn sorry! haha, I Saw this and I thought no that looks different

 

[nerd]

Has he mentioned what center of the Uniklinik accepts the patients? Do we have to go through his own department or where do we need to call?

I personally believe that Prusty and his colleagues have a better lead than the Charitè. Also, the Charitè only accepts Berlin/Brandenburg patients.

 

[perrier]

I am anxious to learn what they will be offering to the patients to which they think might help them.

 

[Rufous McKinney]

what they will be offering to the patients

thats the 64 dollar question...an old saying here in the US......

 

[Martin aka paused||M.E.]

Has he mentioned what center of the Uniklinik accepts the patients? Do we have to go through his own department or where do we need to call?

I personally believe that Prusty and his colleagues have a better lead than the Charitè. Also, the Charitè only accepts Berlin/Brandenburg patients.

I don't know that is everything he posted yet

 

[Martin aka paused||M.E.]

I am anxious to learn what they will be offering to the patients to which they think might help them.

Don't be anxious

 

[Marylib]

It means they may have a pool of subjects for research so very good news.

 

[Martin aka paused||M.E.]

It means they may have a pool of subjects for research so very good news.

Yep! I think his main focus will be on antiviral treatments.

 

[nerd]

They'll only accept a few dozens of patients for their next trial, due to limited funds. I guess the clinic is supposed to sort out the best candidates. I'm not sure what else they'll offer to non-participants.

 

[Martin aka paused||M.E.]

They'll only accept a few dozens of patients for their next trial, due to limited funds. I guess the clinic is supposed to sort out the best candidates. I'm not sure what else they'll offer to non-participants.

How do you know?

 

[nerd]

How do you know?

I read his older Tweets yesterday. He mentioned something like this. I think it was 10 control, 10 long haulers, 10 CFS/ME patients, long-term surveillance for all of them, amounting to 30k EUR each for the testing.

Makes me wonder though why the testing isn't payed by insurances. They only need a physician who orders the tests, don't they? If this allows them to enroll more participants, I would go this route. Even if it's just a 1-2 tests for the major subgroup.

 

[Martin aka paused||M.E.]

I read his older Tweets yesterday. He mentioned something like this. I think it was 10 control, 10 long haulers, 10 CFS/ME patients, long-term surveillance for all of them, amounting to 30k EUR each for the testing.

Makes me wonder though why the testing isn't payed by insurances. They only need a physician who orders the tests, don't they? If this allows them to enroll more participants, I would go this route. Even if it's just a 1-2 tests for the major subgroup.

Insurance? They don’t invest in studies. A hospital gets a certain amount of money (2000€) for each committal. Then the hospital has to act like every company on the market. That’s why patients usually stay only a few days even if they are very ill.

 

[nerd]

Insurance? They don’t invest in studies. A hospital gets a certain amount of money (2000€) for each committal. Then the hospital has to act like every company on the market. That’s why patients usually stay only a few days even if they are very ill.

It's different for private insurances. But even the flat rate can be increased by adding additional flat charges. It doesn't even sound like the testing requires hospitalizations, so I wonder how the system treats individual costs like these. They aren't in any fee regulations yet because they are custom tests. I don't know if this allows university clinics to charge something. When COVID-19 tests weren't in the regulations yet, they also managed to charge more than 100 EUR per test initially.

 

[Martin aka paused||M.E.]

It's different for private insurances. But even the flat rate can be increased by adding additional flat charges. It doesn't even sound like the testing requires hospitalizations, so I wonder how the system treats individual costs like these. They aren't in any fee regulations yet because they are custom tests. I don't know if this allows university clinics to charge something. When COVID-19 tests weren't in the regulations yet, they also managed to charge more than 100 EUR per test initially.

Yes that’s true for committals, but not for studies. Don’t ask me Sozialgesetzbuch anything I-5 paragraph blaaaa … only for medical reasons. But not studies.

 

[nerd]

Yes that’s true for committals, but not for studies. Don’t ask me Sozialgesetzbuch anything I-5 paragraph blaaaa … only for medical reasons. But not studies.

German bureaucracy.... From my perspective, since we don't have any approved diagnostics and treatments, applying candidate diagnostics and treatments is medically indicated. I suspect this is really a problem of the indoctrination from the Kassenverband (insurance associations) telling participating physicians that they aren't allowed to test or treat anything that isn't completely officially approved and urgently necessary. Private insurances would have to pay if a doctor orders it, I'm quite sure. They also have to pay the non-officially approved muscarinergic-cholinergic antibody testing of the Charitè.

 

[Martin aka paused||M.E.]

German bureaucracy.... From my perspective, since we don't have any approved diagnostics and treatments, applying candidate diagnostics and treatments is medically indicated. I suspect this is really a problem of the indoctrination from the Kassenverband (insurance associations) telling participating physicians that they aren't allowed to test or treat anything that isn't completely officially approved and urgently necessary.

Now you mix things legally… but the last sentence is correct. It’s really a burden to pay for all these tests

 

[kangaSue]

thats the 64 dollar question...an old saying here in the US......

Inflation must be rampant here in Australia, it's known as the 64 thousand dollar question in our neck of the woods

 

[Lisa108]

@nerd
"Care and treatment" doesn't sound like "participating in a study" for me. May be two different aspects of what Dr. Prusty is working on (and with different facilities of the university clinic).