Der Spiegel—Sucessful-ish? Treatment of a German MECFS patient

[Leila]

From what I understand he is on Twitter and a doctor that has had Long COVID (Dr Anna Brock*) reached out to him when she heard his story. With help of a non profit organization they organized his transport to a clinic that was willing to take him.

The author of the article, Nina Weber, had been reporting on ME for over 10 years now.

She does emphasize that this is just a n=1 but I think the hope is that stories like these can draw more attention on severe ME and put pressure on our government to fund research.

It's the 2nd article of that kind, there was a girl that had severe LC that also got a lot better with immunadsorption.

Of course there's a danger in that kind of reporting, but I strongly empathize with the severely ill here. Public attention was the only thing that got them help.

*Edit: Anna Brock also had immunadsorption that helped her so much that she could go back to work

 

[Trish]

Thanks for explaining, @Leila. I hadn't understood all that from the tweets. I agree it's important for more publicity about very severe ME.

 

[Solstice]

No scam, he's a well known patient (advocate).

I don't know why the slow reveal, maybe to give the original article more traffic?

He had immunadsorption and Fycompa.

Yeah, I think it was to give the original article more traffic, building it up a bit. I hope it get's a lot of traction.

 

[RedFox]

The most important effect of this article will be bringing attention to ME and severe ME, not publicizing a case study. If it mentions that his only option was unproven treatments, it could spark interest in funding research.

 

[Barry]

What is immuno absorption treatment?

 

[Kitty]

What is immuno absorption treatment?

As I understand it, immunoadsorption is a way of removing specific types of molecule from the blood. I'm not sure which conditions it's most used in or what the evidence is of its effectiveness, though.

 

[Leila]

This is in no way any criticism towards the ill that seek for help - they did what was necessary survive.

In general though it's worrysome that our system is so broken and misled that often severely ill people only get help if they have the means & ressources to create publicity through good "self marketing".

By that I mean being able to articulate themselves in social media, having friends & family to seek help & talk to the media, create go funds me etc. Sometimes that feels almost dystopian to me, like a black mirror episode.

Faraz is talking about this in the article, that he was lucky and that there are so many that don't get help. So again, no criticism towards him and other sick people but towards the system that allows this to happen.

Edit for another comment

 

[TiredSam]

Is there a way to read the article without registering and paying a euro?

One of my students forwarded the link to me today, which was nice.

 

[Leila]

This is in no way any criticism towards the ill that seek for help - they did what was necessary survive.

In general though it's worrysome that our system is so broken and misled that often severely ill people only get help if they have the means & ressources to create publicity through good "self marketing".

By that I mean being able to articulate themselves in social media, having friends & family to seek help & talk to the media, create go funds me etc. Sometimes that feels almost dystopian to me, like a black mirror episode.

Faraz is talking about this in the article, that he was lucky and that there are so many that don't get help. So again, no criticism towards him and other sick people but towards the system that allows this to happen.

Edit for another comment

Maybe "attention economy" is a better word. Sick people have to take part in it and that is just wrong. I want to be a patient, not an activist.

 

[Shadrach Loom]

Is there a way to read the article without registering and paying a euro?

One of my students forwarded the link to me today, which was nice.

https://archive.ph/wjNHv

Open in Chrome for painless auto translate.

 

[Kitty]

Is there a way to read the article without registering and paying a euro?

Weirdly, it doesn't ask me to register or pay. My IP address is in the UK, though, not in Germany, perhaps that's the reason.

 

[Solstice]

This is in no way any criticism towards the ill that seek for help - they did what was necessary survive.

In general though it's worrysome that our system is so broken and misled that often severely ill people only get help if they have the means & ressources to create publicity through good "self marketing".

By that I mean being able to articulate themselves in social media, having friends & family to seek help & talk to the media, create go funds me etc. Sometimes that feels almost dystopian to me, like a black mirror episode.

Faraz is talking about this in the article, that he was lucky and that there are so many that don't get help. So again, no criticism towards him and other sick people but towards the system that allows this to happen.

Edit for another comment

I can say with some confidence that without the help of parents and friends I'd have been long dead by now.

What being so dependent on others also does is it makes it very hard to fundraise. People that still work barely manage that so can't take on anything else. People that are too sick to work usually are too sick to go collecting as well.

I'd happily go door-to-door if I was slightly fitter. But I'm not. And even if I were able to do that, the government would come asking why I'd have time to go door-to-door instead of going working.

 

[TiredSam]

Well I thought it was a good article, highlighting the impossible hurdles and complete lack of support severe ME sufferers face, and what happens when somebody can be bothered to make heaven and earth move to organise the support needed. Thankfully it included the right provisos:

An initially successful cure alone does not prove the benefit of a therapy for others. The fact that Fallahi is doing better in no way means that all people with ME/CFS or Long Covid would benefit from immunoadsorption. Anna Brock points out that the autoantibodies detected in Fallahi were a good indication that the therapy might work. Not all patients have such autoantibodies.

And the psychosomatic approach was mentioned but given very short shrift:

In early 2020, when he was still able to walk short distances, he spent seven weeks in a psychosomatic clinic. There, his complaints were classified as purely psychosomatic and he was encouraged to exercise, he says. The opposite of pacing, which Fallahi didn't know at the time. He accepts the explanation, exerts himself - and leaves the clinic weaker than ever. "When I packed my bag, I realized I didn't have enough strength to walk with it to the exit." A few weeks later, he can no longer leave his bed.

On the one hand an encouraging story of what can be achieved with the right level of interest and support from medical professionals, on the other hand depressing because of how utterly unattainable and simply not on offer such a level of interest and support is for ME sufferers at present.

 

[JemPD]

a great article i thought, very moving.
because i cant help but wish it were me, and all of us

On the one hand an encouraging story of what can be achieved with the right level of interest and support from medical professionals, on the other hand depressing because of how utterly unattainable and simply not on offer such a level of interest and support is for ME sufferers at present.

 

[Jaybee00]