Update from Prof. Bergquist

Consul

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Thanks @Consul for the tweets from @Valentijn and @Grigor - were you able to watch the video yourself?
Nope, unfortunately couldnt watch it. Would like to though... Maybe there are some swedes here that could provide additional information if there is anything left out.

So Bergquist sees this as a primarily neuroinflammatory disease. Do you think thats good or bad in terms of getting back to normal health again? Not ideal that the main problem is in the brain, perhaps.

Btw vanElzakker recently reported on twitter that his neuroinflammation mecfs study is being delayed because he cant find enough patients to study.
 

elvira

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I’n from sweden ☺️ The twitter recap covers it all I think. He did say that they saw mitochondrial abnormalties during light exercise (on a bike) but NOT during social and mental tests. So why is that so hard for us also? The neuroinflammation? I thought that was odd.

They also interviewed a man (Björn Ekdal) who completely recovered thanks to Rituximab and antivirals. It’s sad they just gave up on Rituximab.
 

Consul

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I’n from sweden ☺️ The twitter recap covers it all I think. He did say that they saw mitochondrial abnormalties during light exercise (on a bike) but NOT during social and mental tests. So why is that so hard for us also? The neuroinflammation? I thought that was odd.

They also interviewed a man (Björn Ekdal) who completely recovered thanks to Rituximab and antivirals. It’s sad they just gave up on Rituximab.
I also heard about someone recovering to full health after a few months on rituximab. But then after participating in a physically exhausting reality tv show she fell back into it, but a new dose of rituximab brought her to full health again. I have found this case particularly interresting because it would mean that autoantbodies alone are able to produce the full range of me/cfs symptoms. She was diagnosed as a "classic" case of ME.

Fluge isnt sold on the idea that rituximab doesnt help some subgroup of patients to some degree, and iirc Scheibenbogen wasnt fully happy with some of the methodology of the study. Fluges speculation nowdays is that instead of a particular autoantibody being the problem there might rather be some type of pattern or a myriad of "functional" autoantibodies going on that refuses to stop. Something like wang et al 2021 where lots of immunomodulating proteins (and others) are targeted by autoantibodies.

That said there is also the problem with rituximab that it cant take out all antibody producing cells, like long lived plasma cells will remain and could be producing the rogue antibodies.
 

Pyrrhus

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instead of a particular autoantibody being the problem there might rather be some type of pattern or a myriad of "functional" autoantibodies going on that refuses to stop. Something like wang et al 2021 where lots of immunomodulating proteins (and others) are targeted by autoantibodies.
That sounds suspiciously like epitope spreading, as explained in the following discussion:

How Viruses Cause Autoimmunity
https://forums.phoenixrising.me/threads/how-viruses-cause-autoimmunity.86598/
 

elvira

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I also heard about someone recovering to full health after a few months on rituximab. But then after participating in a physically exhausting reality tv show she fell back into it, but a new dose of rituximab brought her to full health again. I have found this case particularly interresting because it would mean that autoantbodies alone are able to produce the full range of me/cfs symptoms. She was diagnosed as a "classic" case of ME.

Fluge isnt sold on the idea that rituximab doesnt help some subgroup of patients to some degree, and iirc Scheibenbogen wasnt fully happy with some of the methodology of the study. Fluges speculation nowdays is that instead of a particular autoantibody being the problem there might rather be some type of pattern or a myriad of "functional" autoantibodies going on that refuses to stop. Something like wang et al 2021 where lots of immunomodulating proteins (and others) are targeted by autoantibodies.

That said there is also the problem with rituximab that it cant take out all antibody producing cells, like long lived plasma cells will remain and could be producing the rogue antibodies.
That is fantastic! That a new dose cured her again. This guy in the show also has a classical ME case that began with a flu. He’s told earlier that they have autoimmunity diseases in his close family. I wonder how big this subgroup of autoimmunity is... Next week i’m sending my blood to Celltrend to check for Scheibonbogens autoantibodies. Really hope I have them, and lots of them 😅
 

BrightCandle

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A few things I think were interesting. They found
  • CNS and cerebral fluid contains herpes.
  • Up-regulated autoantibodies but not in the CNS or cerebral fluid
  • ME/CFS patients have auto antibodies that disturb and attack neurotransmitters that are fundamental to body function
  • Luckily they can be potentially flushed since they aren't in the CNS
What would they do with infinite funding
  • Mechanisms, diagnostics
  • But about to reach stage of pilot trials with different interventions.
 

Consul

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This sounds pretty important. Does anybody have this confirmed for himself?
I thought this was another cohort he is studying with the disease called herpes simplex encephalomyelitis / HSE. Its a very rare disease that he studies to compare it to mecfs.

Please let me know if i misinterpreted it though.

That said he was glad he didnt find autoantibodies in the cerebrospinal fluid because its harder to get rid of that sort of nasty stuff in the CNS than in the rest of the body.
 

Consul

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More of these OMF interviews are coming every tuesday in May month.

May 10, 2022 – Alain Moreau, PhD, Director of the Montreal CRC

May 17, 2022 – Christopher W. Armstrong, PhD, Director of the Melbourne Collaborative

May 24, 2022 – Wenzhong Xiao, PhD, Co-Director of The Ronald G. Tompkins Harvard CRC, Director of the Computational Research Center for Complex Diseases

May 31, 2022 – David Systrom, MD, Co-Director of The Ronald G. Tompkins Harvard CRC
 

wabi-sabi

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I thought this was another cohort he is studying with the disease called herpes simplex encephalomyelitis / HSE. Its a very rare disease that he studies to compare it to mecfs.
Correct. He is comparing another post viral illness- herpes encephalopathy- to ME/CFS.

We don't (thankfully) have autoantibodies in our CSF. We have the something in the blood- which is much easier to clean up than brain juice.