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

Slow reveal—the paper will be in German apparently—putting this here as place holder until they reveal the treatment in the next few days. I’m always skeptical of these slow reveal deals—might be scam-ish??

https://twitter.com/user/status/1621764365908119552


https://twitter.com/user/status/1621781158781394944

 

I could understand a slow reveal because you're sick and have to work on it, this sounds an awful lot like bravo sierra though. But I guess we'll see. Even if he found something that specifically worked for him that in itself would be great offcourse.

 

He's got some more tweets out, if anything needs translating I can help a bit though I guess others that are actually German are better placed to do so. He's shrouding himself in mystery and it's all supposed to be towards the goal of making as big an impact as possible at the final reveal. I remain skeptical.

*edit* His story did get published in Der Spiegel which is a pretty big deal. Can't attest to how well-researched his treatment is, but I have to reverse on my initial skepticism about the way he tweeted about it.

 

I guess this is the article

https://twitter.com/user/status/1621918471008260102

 

makes me suspicious/skeptical, why would you need to do that? if something has worked to take a person from very severe to recovered, that has plenty impact on its own. Sounds like showmanship to me.

No disrespect intended, i hope its something wonderful, but i'm uncomfortable with the manufactured 'mystery'

 

I'll translate more at a later time if someone doesn't beat me to it but he got prescribed Fycompa for his neurological problems. He's been treated in Schleswigh-Holstein by a team of doctors under the guidance of dr. Scheibenbogen it seems, but I can't stress this enough, I have to fully read it again. So don't take my word as gospel, it's a rough first interpretation atm.

 

Thread in English:
https://twitter.com/user/status/1621930231689781251


Of note, the FDA has issued a black box warning for Fycompa (perampanel): https://www.accessdata.fda.gov/drugsatfda_docs/label/2016/202834s011lbl.pdf

 

Maybe this kind of publicity is what we need to arouse public enthusiasm for finding proper treatments?

In the comments section on the Spiegel website, there are several sympathetic comments by laypeople and healthcare professionals expressing support for funding these treatments.

But, I also can't help remember how Rituximab seemed promising initially and then failed a placebo controlled trial.

 

True, we need more investment though and Der Spiegel is a very legitimate paper in Germany I think. So while what this guy's on may not pan out if it attracts more investment and goodwill that's all gravy. I hope for his sake he at least keeps healthy btw. I've been of this site for a couple of years or at least visited very infrequently and it just stands out to me that we seem to be much more in the limelight. That still needs to convert in more research, but it's a start.

 

so pleased he has had improvement! wonderful regardless

Lets hope they do a proper trial

 

This seems to be a recording of a Twitter forum about Faraz and the article—any German speakers willing to have a listen?
@Solstice Thanks

https://twitter.com/user/status/1622201287222722560


https://twitter.com/i/spaces/1kvJpmqRNDwxE

 

Now it seems that there another program going on right now—not sure if it’s related the above one

https://twitter.com/i/spaces/1lPKqBYpzNlGb

 

I can give it a try somewhere later this week, but reading German is one thing translating speech another. I hope they'll post transcripts or English language summaries or something tbh.

 

Can't make heads or tails of it, sorry. If there's gonna be a transcript I'll do my best on that but translating audio is too much for my limited German skills.

 

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.

 

Fycompa is an anti-seizure drug. Who knows how his doctor decided to give him that.

 

Interestingly, Fycompa is an AMPA receptor antagonist that downregulates glutamate, which is the main excitory neurotransmitter. Perhaps the neurologist(s) who prescribed it to Faraz thought that it would help calm some of the “brain and small fiber neuropathy” related symptoms he mentioned in a tweet as being his main symptoms (I assume that this includes sensory hypersensitivity).

Downregulating glutamate is also the role of NMDA receptor antagonists such as ketamine and, in fact, the FDA prescribing information for Fycompa mentions that when abused, it produces dissociative effects similar to those of ketamine.

Another way to “calm the brain” that is well known to ME patients is upregulating GABA (the main inhibitory neurotransmitter) with benzodiazepines. Unfortunately, long term use of benzodiazepines leads to tolerance and physical dependence and the same goes for NMDA receptor antagonists. The FDA prescribing information mentions there is no data available to evaluate physical dependence to Fycompa in humans, but it has been shown to occur in rodent studies.

I hope that Faraz will not experience a withdrawal syndrome should he cease to use Fycompa or that the drug will lose its effectiveness over time and set him back to more severe ME, especially since his gains seem to be newfound.