Interview with Carmen Scheibenbogen about ME research

P

perrier

Senior Member
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1,254
Loba Esteparia said:
i ve been sick for 17 years and i was diagnosed in the Charite.
Nothing, absolutely NOTHING has changed .Every year the same " oh we are close to find something"
I am sorry, as i said 7 years ago, no, there will never be help for us . There is no interest on it.
Even in the Charite all the doctors i spoke with about cfs where laughing about it and recommending exercise and psychology.
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Dear Loba, you sound just like my dear daughter. And I find this all so heartbreaking and unbearable. On some days, a bad nausea takes hold of me, and I feel so bad as if I need to wretch. I am furious and disgusted. I don't know what the state of things would be if Dr Davis didn't come on the scene. It is like @max_yazhbin says: their lives are not on hold. I do not understand how govts and medical establishments and researchers can just abandon the young--for it seems that this is striking young people. But I must believe that OMF and their team will come up with help, dear Loba.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

Senior Member
Messages
2,291
perrier said:
Dear Loba, you sound just like my dear daughter. And I find this all so heartbreaking and unbearable. On some days, a bad nausea takes hold of me, and I feel so bad as if I need to wretch. I am furious and disgusted. I don't know what the state of things would be if Dr Davis didn't come on the scene. It is like @max_yazhbin says: their lives are not on hold. I do not understand how govts and medical establishments and researchers can just abandon the young--for it seems that this is striking young people. But I must believe that OMF and their team will come up with help, dear Loba.
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They will
 
Luxintenebrislucet

Luxintenebrislucet

Messages
78
thank you for your empathy, yes i feel often like this.
The lack of perspective, the titanic amounts of effort i need to keep myself " alive " everyday and i dont really have any reason for doing this. I do not have family. Every time i was at the hospital and they asked me " somebody to call in case of...? " i had to cry. Nobody. So they can actually do everything to me they want to and german hospitals are not known for treating people well...nurses are engaged but overwhelmed and doctors are ignorant and many of them sadistic. And there is a culture of " save money" so if you are old or very sick they rather let you die before searching for the reasons you are so sick. This information is from insiders and it scaries me.
I am sorry i cant give any hope anymore. I am myself hopeless
 
Martin aka paused||M.E.

Martin aka paused||M.E.

Senior Member
Messages
2,291
Loba Esteparia said:
thank you for your empathy, yes i feel often like this.
The lack of perspective, the titanic amounts of effort i need to keep myself " alive " everyday and i dont really have any reason for doing this. I do not have family. Every time i was at the hospital and they asked me " somebody to call in case of...? " i had to cry. Nobody. So they can actually do everything to me they want to and german hospitals are not known for treating people well...nurses are engaged but overwhelmed and doctors are ignorant and many of them sadistic. And there is a culture of " save money" so if you are old or very sick they rather let you die before searching for the reasons you are so sick. This information is from insiders and it scaries me.
I am sorry i cant give any hope anymore. I am myself hopeless
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I am genuinely sorry to hear this. And I can empathize with the hopelessness. My only hope is OMF
 
dylemmaz

dylemmaz

Senior Member
Messages
136
Loba Esteparia said:
what is the state of the things with OMF?
I thougt Suramine would be a HIT and change the stand of the things but seems like they are now in stand by?
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janet recently said ron has finished making dna probes for all known trypanosomes (which suramin is used to treat). covid stopped them from testing cfs patients for the trypanosomes though. i’m assuming they will start this up soon. in 2018 ron said suramin would be available by the end of the year in the usa. must have gotten delayed and then covid delayed its production even further
 
max_yazhbin

max_yazhbin

Messages
246
Loba Esteparia said:
what is the state of the things with OMF?
I thougt Suramine would be a HIT and change the stand of the things but seems like they are now in stand by?
Was machen die jetz da? Und danke, fuer deine Empathie ;)
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my interpretation is that suramin was a shot in the dark. They are casting a wide net with their big data, which is a pretty good approach, but the whole suramin or this other drug or whatever is just another sign that the practice of science today is far from what it could be and the distance from the practice of medicine shows up in sick people still suffering.

Hmm, they can get suramin from medkoo.com, maybe they couldn't use it in their study or maybe they didn't know about it?
 
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