New Mella talk, exciting reveals

[mango]

Here are links to a recording of a (inofficial) livestream, in two parts:

https://www.facebook.com/mette.hana/videos/10208706049903477/

https://www.facebook.com/mette.hana/videos/10208706296749648/

 

[Living Dead]

one patient in phase 2 who received infusion was in remission: then relapsed under infusion. very peculiar, what is the mechanism?

I think one of:
* Intolerance to the steroids given with the infusion. (I have read about several people with ME getting worse from steroids.)
* Killing off the B cells gives a cytokine storm (this is why they give the steroids - to prevent it).
Not really that peculiar, IMO, with two plausible options.

Question: Can vaccines give ME? should we take it? Mella: "that seems to be the case. the risk is low, so i cant give a definite answer".

If ME can be caused by an infection (and it's a common trigger), it can be caused by a vaccine, as a vaccine is (simplified) a lightweight infection. Better take the more lightweight vaccine than the actual infection, if you're healthy. What to do when you're sick is another matter.

 

[deleder2k]

I think one of:
* Intolerance to the steroids given with the infusion. (I have read about several people with ME getting worse from steroids.)
* Killing off the B cells gives a cytokine storm (this is why they give the steroids - to prevent it).
Not really that peculiar, IMO, with two plausible options.

If ME can be caused by an infection (and it's a common trigger), it can be caused by a vaccine, as a vaccine is (simplified) a lightweight infection. Better take the more lightweight vaccine than the actual infection, if you're healthy. What to do when you're sick is another matter.

The vaccine question was raised from a girl who has had ME for many years. She asked whether a person with ME should receives vaccines - especially the seasonal flu shot or not. His first reply was if she had experienced side effects from previous vaccines. She said no. While not directly encouraging her to take the flu vaccine she asked about, he couldn't say why there were other reasons not take vaccines for PWME. He said that the flu shot was considered as mild stimuli for the immune system. The risk if one already has ME and living on the edge is that one could actually catch the flu. Getting it it would be substantial more than a "mild stimuli". For many of us getting it would probably be not a major issue, but for someone with moderate/severe PWME, it could. I think his unofficial conclusion was that if you never suffered fro side effects from vaccine, taking a flu shot it would in general be a good thing, but he doesn't like to give advices to patients from a scene. I think we can all understand that.
That was how I understood him.

Perhaps someone could translate Mella's video presentation from Arendal in the Kingdom of Norway to British English.

 

[dannybex]

I wonder where specifically the defect in ATP production lies in ME/CFS patients. That defect could be a target for treatment.

My guess is many different places, depending on the patient.

 

[Hip]

My guess is many different places, depending on the patient.

I also wonder how many different cell types in the body have a faulty energy metabolism. Professor Olav Mella says that lymphocytes (B-cells, T-cells and NK cells) are especially effected by this faulty energy metabolism.

However, I'd like to know if all the different cell types in the body are affected, or is it just certain types of cells that have a faulty energy metabolism?

If it is just certain cell types, and those cell types turn out to be virally infected, then the presence of the virus in the cell might be able to explain the cellular energy fault.

But if all (or most of) the cell types in the body have this faulty energy metabolism, well, there are no viruses that can infect every cell type (a given virus is only able to infect a small subset of cells types); so then the explanation for the faulty energy metabolism couldn't be a result of an infection of the cells, but would have to be caused by some global factor acting on all cells in the body, perhaps for example some specific autoantibody that targets the mitochondria.

 

[deleder2k]

Next month we'll hear about who will respond to Ampligen and Rituximab. Forgot the name of the conference. Sorry.

Do we know who will respond to RTX?? Any info on this?


About CFS prevalence: Nigeria looks almost the same compared to these United States in terms of incidence: https://www.ncbi.nlm.nih.gov/pubmed/17439996

 

[aimossy]

@deleder2k only info regarding the talk about possible responders is here in the agenda of the IACFSME conference: http://iacfsme.org/Conferences/2016-Fort-Lauderdale/Agenda/Professional-Agenda.aspx

Here is a blog from Cort: http://iacfsme.org/Conferences/2016-Fort-Lauderdale/Agenda/Professional-Agenda.aspx

"Rituximab and Emerging Treatments

Dr. Fluge will begin the next day with a special 45-minute presentation on how the Rituximab trials have helped us understand the cause of ME/CFS.

In a potentially huge and encouraging finding, not Dr. Fluge or Mella, but Dr. Patrick from Canada will speak on an immune signature that he believe may predict which ME/CFS patients will respond to Rituximab. Dr. Strayer from Hemispherx will not be speaking (how did that not happen?) but he will be presenting similar findings for Ampligen at the conference.

One wonders what conceivable reasons the NIH could have for not funding both Rituximab and Ampligen ME/CFS trials now that it appears that we may be able to target who the drugs work for."

 

[Gingergrrl]

question: do you think there is subgroups? Mella: "yes. very common in autoimmune diseases. underlying mechanisms may be different, even though the symptom picture is the same. this is seen in ME. "

@Marky90 Did Dr. Mella say anything re: any specific autoantibodies (or the work being done by Dr. Schiebenbogen at the Charite with plasmapheresis and IVIG)? It seems both approaches view ME/CFS as an autoimmune disease, with different subgroups, and that they are targeting autoantibodies. This is my take on it as well (or that it matches the disease that I have which may ultimately have another name).

Thanks for the great report and glad no coffee cups were injured...

 

[hixxy]

How does the approval process work in most other western countries? Do they perform their own 3 phase trials or just a single trial? I'm sure this probably varies from country to country.

 

[Woolie]

question: is there more ME in norway? Mella: "this is not systematically investigated. Current studies have often been done by phone. In norway- use of registers. Pretty certain: more in north europe, than south europe. but it happens all over the world. a lot of patients feel better in warmer climate."

WTF? How could Mella not be aware of the different diagnostic practices? And feeling better in the warmth? That's the opposite of my experience, after enduring many hot Australian summers.

But like @paolo said, its possible that we might see a distribution similar to MS, which is more prevalent in countries farther from the equator.

 

[GreenTurtle]

question: can you say something about LDN? Mella: "well.. there are some reports ofimprovement. but its usually slight. we think we might understand why."

Did he say anything about why LDN might give some improvement?

 

[hixxy]

question: can you say something about LDN? Mella: "well.. there are some reports ofimprovement. but its usually slight. we think we might understand why."

Did he say anything about why LDN might give some improvement?

I found this really interesting as well. Hopefully they will do a big reveal of their knowledge in the not too distant future.

 

[soofke]

However, I'd like to know if all the different cell types in the body are affected, or is it just certain types of cells that have a faulty energy metabolism?

my guess is it's 'just' nerve cells *inserts ever annoying link* ;0)

 

[lansbergen]

However, I'd like to know if all the different cell types in the body are affected, or is it just certain types of cells that have a faulty energy metabolism?

If it is what I think it is that will depend on illness duration. The infection accumulates. In the beginning it probably are mostly Bcells and dentric cells. Epithelium cells (and the basement membrane) seem to be important during the whole disease process.

 

[Marky90]

@Marky90 Did Dr. Mella say anything re: any specific autoantibodies (or the work being done by Dr. Schiebenbogen at the Charite with plasmapheresis and IVIG)? It seems both approaches view ME/CFS as an autoimmune disease, with different subgroups, and that they are targeting autoantibodies. This is my take on it as well (or that it matches the disease that I have which may ultimately have another name).

Thanks for the great report and glad no coffee cups were injured...

Hey!
No, nothing specific. Just that Charite did innovative research in a country with a ancient understanding of ME. Also said that they were working closely with them, and with UCL in london. He also gave a shoutout to the master of b-cells @Jonathan Edwards

 

[Marky90]

question: can you say something about LDN? Mella: "well.. there are some reports ofimprovement. but its usually slight. we think we might understand why."

Did he say anything about why LDN might give some improvement?

He did not unfortunately!

 

[Sidereal]

and with kings college in london

UCL I hope where the B cell people are, not King's where the psychobabblers are.

 

[Marky90]

UCL I hope where the B cell people are, not King's where the psychobabblers are.

Whooops I am brainwashed

 

[mango]

Written summary by ME-foreningen (the Norwegian ME Association)
http://www.me-foreningen.info/2016/...ofessor-dr-med-olav-mella-i-arendal-11-10-16/

Google translated English version:
https://translate.google.se/transla...med-olav-mella-i-arendal-11-10-16/&edit-text=

ETA: The summary only covers the first half of the first video.

 

[Sidereal]

Wyller could see that it was better to give placebo than the active substance, clonidine, he thought would work.The explanation for this may be that the activation of the nervous system that Wyller believed was the cause of the problems was a compensation mechanism, and when one removes compensation mechanism, the patient deteriorated.

Ha! This is what we've been saying on PR too.