Interview with Carmen Scheibenbogen about ME research

[Martin aka paused||M.E.]

"We are actually where we were 30 years ago."

Open discussion please

I'm definitely don't share her opinion. But what's positive: She strongly criticizes the treatment with CBT / GET and the associated studies as bad "the wrong patients (without ME) were selected" and also draws a current bridge about what is currently happening with Long-Covid patients.

Martin
Interview yesterday on Deutschlandfunk (in German)

 

[Rebecca under the papyrus]

In an interview with "Die Zeit" in april she also said that she "is more confident than ever that in a few years we will have a therapy for CFS patients".
Corona-Langzeitfolgen: "Je jünger die Menschen, desto besser die Heilungschancen" | ZEIT ONLINE (in German, too)

The attitudes and knowledge in the medical system might be comparable to 30 years ago, but the science has come a long way. In terms of actual findings as well as methods (technique for metabolomics...).
Might not be as fast as "a few years", but we're getting closer.

 

[Martin aka paused||M.E.]

In an interview with "Die Zeit" in april she also said that she "is more confident than ever that in a few years we will have a therapy for CFS patients".
Corona-Langzeitfolgen: "Je jünger die Menschen, desto besser die Heilungschancen" | ZEIT ONLINE (in German, too)

The attitudes and knowledge in the medical system might be comparable to 30 years ago, but the science has come a long way. In terms of actual findings as well as methods (technique for metabolomics...).
Might not be as fast as "a few years", but we're getting closer.

Also think so!

 

[perrier]

"Ich bin zuversichtlicher denn je, dass wir in einigen Jahren eine Therapie für CFS-Patienten haben werden," she says. Yes, at a conference in Montreal, she said for certain in 5 years. That was a few years ago now. Now she is saying einigen Jahren, in a few years. No time line. How is it that scientists at Moderna and Pfizer and in other serious places work on time lines. What does einigen Jahren mean? How many? 5, 10, 13. How are the severe to endure this. She is a lovely lady, and very charismatic, but this is unacceptable. And you cannot imagine space agencies, or Pfizer thinking or working like this. Yes, I am very upset with this lack of projected time lines: they all just leave it vague and this is not responsible. Give a time line, and then alter it if needed, but set goals. It is immoral to leave young people abandoned and not to focus more concretely on their illness. PS. Most professions I know and have been connected to either professionally or through family operate on time lines. This is not encouraging--but then this illness is not her primary focus or interest, I guess.

 

[Martin aka paused||M.E.]

She fights for research. Sorry but your comment was a bit off
There is no timeline in research

 

[perrier]

She fights for research. Sorry but your comment was a bit off
There is no timeline in research

I understand Martin. But I have to politely disagree with you. You can set time lines. eg. By 2022 we will finish testing etc etc. I worked in my younger years for Merck and this was a pharmaceutical company, which did research, production and control of drugs. I spent lots time with the scientists in the research labs as they were friends. They had time lines all the time. These were often extended, but in meetings they gave explanations for what happened, what went wrong, and what was required. So, I saw first hand how such a company operates. I worked in the control lab. There too there were time lines. I have nothing against Scheibenbogen, She is a fine very smart lady. I just find that there is no urgency regarding this illness, except for folks like Dr Davis and Hanson and a couple of others. You may disagree, but this is my humble opinion. The Americans would never have reached the mood if they didn't have a time line. They were given 10 years, they did it in 9. Pfizer and Moderna said a year, and got the vaccine out sooner (yes, I understand there was work done earlier.)

 

[MonkeyMan]

In December 2015, Ian Lipkin said he believes it’s possible to solve ME/CFS in three to five years. That hasn't exactly worked out, has it?

I don't mean to pour cold water on things, and yes ME/CFS research may be speeding up, but there's a desire in all of us to think that things will be different "in a few years".

 

[ruben]

But is it not fair to say that long covid has changed the landscape in a big way.

 

[Boba]

I

But is it not fair to say that long covid has changed the landscape in a big way.

Not in Germany… But yes solving Long Covid (I‘m a long hauler) will help ME.

 

[Martin aka paused||M.E.]

I understand Martin. But I have to politely disagree with you. You can set time lines. eg. By 2022 we will finish testing etc etc. I worked in my younger years for Merck and this was a pharmaceutical company, which did research, production and control of drugs. I spent lots time with the scientists in the research labs as they were friends. They had time lines all the time. These were often extended, but in meetings they gave explanations for what happened, what went wrong, and what was required. So, I saw first hand how such a company operates. I worked in the control lab. There too there were time lines. I have nothing against Scheibenbogen, She is a fine very smart lady. I just find that there is no urgency regarding this illness, except for folks like Dr Davis and Hanson and a couple of others. You may disagree, but this is my humble opinion. The Americans would never have reached the mood if they didn't have a time line. They were given 10 years, they did it in 9. Pfizer and Moderna said a year, and got the vaccine out sooner (yes, I understand there was work done earlier.)

Did I read over the timeline of Ron Davis or Hanson somewhere?
No offense perrier, i just found your comment that her interests are not based on research not correct.

 

[Rufous McKinney]

Pfizer and Moderna said a year, and got the vaccine out sooner (yes, I understand there was work done earlier.)

Thats a private sector company motivated by a profit reward....to go after a known entity- a specific virus that existed tanglibly, COVID-19. They had ALREADY worked for I think at least a decade on some of the mRNA type concepts. Money wasn't even an obstacle. Taxpayers likely funded much of the mRNA initial work but I don' t know that for sure. But thats common here.

ME has no: specific known entity to go after. We dont even have a specific way to diagnose- one type or 5 types.

If you have funding: you can set up a feasible timeline. Assuming no unknowns appear.

 

[Luxintenebrislucet]

Did I read over the timeline of Ron Davis or Hanson somewhere?
No offense perrier, i just found your comment that her interests are not based on research not correct.

what is she exactly doing for us to help?

 

[Luxintenebrislucet]

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.

 

[Martin aka paused||M.E.]

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.

Ok I heard completely different stories but anyway, what is she doing for us:
Research
Educate doctors now in Bremen in a hospital in MECFS
Offer a phone consultation hour for doctors who have ME patients
A lot of public relations
She is politically involved

 

[max_yazhbin]

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.

I agree, it is up to us, why incentive do they have to solve this issue? Their lives aren't on hold.

 

[max_yazhbin]

By the way, most research is complete crap, think reproducibility crisis.

 

[ruben]

So if people who got covid then and are remaining ill they are classed as having "long covid. Maybe I don't have ME/CFS at all. I have "long glandular fever". !!!!!

 

[Martin aka paused||M.E.]

@perrier you know. Somehow, I agree with you. It just makes me sad. Maybe I only close my eyes to it

 

[perrier]

Did I read over the timeline of Ron Davis or Hanson somewhere?
No offense perrier, i just found your comment that her interests are not based on research not correct.

Martin, you are suffering greatly and I do not want to upset it. Have it your way. My main irritation is that time lines are not offered. They do not have to say--it cure in 2025. But time lines for the projects and their end and their conclusion. As for Dr. Scheibenbogen, I am somewhat taken aback that you think I don't think her interest is in research--truly. My main points were:: "This is not encouraging--but then this illness is not her primary focus or interest, I guess." Meaning: 1) no time line, 2) she has work in other areas and ME is not her main research focus. (If I am incorrect, then please correct me. But my readings suggest she is working on other problems too). Best wishes. PS: I actually really like her and have spoken to her when she was in Montreal. She is charismatic and intelligent and lively. But I need to leave this. It's not good for any of us. Best wishes

 

[Martin aka paused||M.E.]

Martin, you are suffering greatly and I do not want to upset it. Have it your way. My main irritation is that time lines are not offered. They do not have to say--it cure in 2025. But time lines for the projects and their end and their conclusion. As for Dr. Scheibenbogen, I am somewhat taken aback that you think I don't think her interest is in research--truly. My main points were:: "This is not encouraging--but then this illness is not her primary focus or interest, I guess." Meaning: 1) no time line, 2) she has work in other areas and ME is not her main research focus. (If I am incorrect, then please correct me. But my readings suggest she is working on other problems too). Best wishes. PS: I actually really like her and have spoken to her when she was in Montreal. She is charismatic and intelligent and lively. But I need to leave this. It's not good for any of us. Best wishes

It’s just sad