Sept 21 - Stanford Working Group Meeting

[Martin aka paused||M.E.]

Its just one infushion right? In america i’m used to everything being like this type of cost lol.

Yes might be true hehe... I would be happy to pay 20k to be healthy again

 

[Learner1]

Costs 20.000€ per infusion

 

[keepontruckin]

That is around $24

 

[Learner1]

So, I'm going to go down the agenda. Is anyone aware of what Chris Armstrong has found about the nitric oxide pathways?

 

[Martin aka paused||M.E.]

That is around $24

Approximately

 

[Marylib]

That is around $24

Well, depending on how often you needed the infusion, and if that enabled a person to actually earn money again, sounds pretty good.

 

[Martin aka paused||M.E.]

So, I'm going to go down the agenda. Is anyone aware of what Chris Armstrong has found about the nitric oxide pathways?

Sorry my friend doesn't want to disclose it as it might harm publication. I don't know if Ron will write about what Chris talked about.

 

[Marylib]

So, I'm going to go down the agenda. Is anyone aware of what Chris Armstrong has found about the nitric oxide pathways?

I admit I am jaded by now, but my expectation is that he has collected more samples and more data and that he feels his hypothesis is worth pursuing if he can get funded again. Meanwhile patients generally like trazodone for sleeping, http://if-pan.krakow.pl/pjp/pdf/2008/5_664.pdf and are trying supplements as usual and discussing their effects.

 

[Learner1]

I admit I am jaded by now, but my expectation is that he has collected more samples and more data and that he feels his hypothesis is worth pursuing if he can get funded again.

But what is his hypothesis about nitric oxide or his previous research finding that led to this talk?

Meanwhile patients generally like trazodone for sleeping, http://if-pan.krakow.pl/pjp/pdf/2008/5_664.pdf and are trying supplements as usual and discussing their effects

The mice in that experiment did not have ME/CFS. They were made to swim to provoke tiredness. The paper says they don't know why trazodone helped to reduce oxidative stress. Trazodone is habit forming and can be a little dangerous. Side effects include:

• Nausea, vomiting, and diarrhea or constipation
• Dizziness, unsteadiness, dry mouth, and/or headache
• Fatigue, tingling or numbness in the extremities (arms and legs), or ringing in the ears
• Muscle pain, rash, tremors or shaking (mostly in the hands)
• Anxiety, difficulty with attention, decreased appetite, and weight loss
• Prolonged and painful erections in men
• Thoughts of harming oneself (most often in children or adolescents)
• Mild physical dependence

This article is about cardiotoxicity of trazadone:

https://journals.sagepub.com/doi/full/10.1177/0960327118769717

This talks about male reproductive toxicity induced by trazadone:

https://www.hindawi.com/journals/omcl/2018/7196142/

This talks about the dangers if a trazadone metabolite:

https://www.cambridge.org/core/jour...of-trazodone/FA875467A8DB0DE944AD8DECBF833C01

 

[Learner1]

Sorry my friend doesn't want to disclose it as it might harm publication. I don't know if Ron will write about what Chris talked about.

This is odd because the Stanford Symposium has shared a lot of current research in the past - I've seen Chris Armstrong speak in person sharing his findings there.

Nitrosative stress in ME/CFS has been written about by Pall, Maes and Morris in the past. It's not a big secret. Additionally, BH4 was also on the agenda, and it can help lower peroxynitrite.production.

 

[Martin aka paused||M.E.]

This is odd because the Stanford Symposium has shared a lot of current research in the past - I've seen Chris Armstrong speak in person sharing his findings there.

Nitrosative stress in ME/CFS has been written about by Pall, Maes and Morris in the past. It's not a big secret. Additionally, BH4 was also on the agenda, and it can help lower peroxynitrite.production.

I'm sorry but it's his personal decision and I can't pull his fingernails until he pulls it out. I'm sure there will be some kind of summary.

But I understand him bc he might not be in frequent contact with Chris and in the end it's the researcher's own decision what they want to tell and what not.

 

[Learner1]

I'm sorry but it's his personal decision and I can't pull his fingernails until he pulls it out. I'm sure there will be some kind of summary.

But I understand him bc he might not be in frequent contact with Chris and in the end it's the researcher's own decision what they want to tell and what not.

Dr Armstrong has been quite forthcoming about his research in the past. It seems to be the format of this particular conference which prevents the sharing of information, to the detriment of patients.

 

[Learner1]

There's a newer researcher I hadn't heard of, Rahaf Al Assil, of University of British Columbia, who spoke on leptin and inflammatory markers. Is anyone familiar with his work and the gist of this?

 

[Martin aka paused||M.E.]

Dr Armstrong has been quite forthcoming about his research in the past. It seems to be the format of this particular conference which prevents the sharing of information, to the detriment of patients.

Yes I have no idea honestly I'm not affiliated with OMF anymore (bc of reasons) and have no insight. I haven't talked to Chris since 2020.

 

[Marylib]

But what is his hypothesis about nitric oxide or his previous research finding that led to this talk?
The mice in that experiment did not have ME/CFS. They were made to swim to provoke tiredness. The paper says they don't know why trazodone helped to reduce oxidative stress. Trazodone is habit forming and can be a little dangerous. Side effects include:

Thanks. I think my ironic sense of humor doesn't translate very well. What I was trying to express is that we keep on treating our symptoms in the same way so we don't suffer so much, not that the treatments don't have dangers. Some of us have no other options.

 

[Marylib]

Dr Armstrong has been quite forthcoming about his research in the past. It seems to be the format of this particular conference which prevents the sharing of information, to the detriment of patients.

Maybe they are afraid everyone will experiment some more. But personally, I'm an adult and I don't have a death wish.

 

[Marylib]

There's a newer researcher I hadn't heard of, Rahaf Al Assil, of University of British Columbia, who spoke on leptin and inflammatory markers. Is anyone familiar with his work and the gist of this?

I found a poster presentation he did with Donald Lewis - a beloved doc in Australia who passed away, and Neil McGregor from Melbourne who has talked about hypermetabolism I think. From 2020:
Conclusions: In patients with mild to moderate ME/CFS, males and patients who are < 18 years old had higher odds of insulin resistance than others. Females predominantly developed insulin-induced hypoglycemic response at 60 min. Sex- and age-based differences in glucose/insulin anomalies may exist in ME/CFS patients and may be a target for genetic susceptibility and personalized diagnosis and management in ME/CFS patients.
https://www.mdpi.com/2076-3271/8/4/50/htm
https://www.healthrising.org/blog/2...gregor-metabolism-chronic-fatigue-glycolysis/

 

[perrier]

https://www.openpetition.eu/petition/online/funding-for-bc-007-drug-against-long-covid-and-me-cfs

 

[Learner1]

Thanks. I think my ironic sense of humor doesn't translate very well. What I was trying to express is that we keep on treating our symptoms in the same way so we don't suffer so much, not that the treatments don't have dangers. Some of us have no other options.

Sorry, I missed the humour, thanks for explaining.

I'm not sure what treatments for symptoms are always the same and why there are no other options? I've found that reading the research and following the clues had led to better treatments. That's why I'm so disappointed that the info from this conference is not available.

Maybe they are afraid everyone will experiment some more. But personally, I'm an adult and I don't have a death wish.

We are all experimenting, with or without our doctors' help. The more clues we can have, the more informed our experiments can be.

 

[jaybee00]

I guess no write up from this meeting? I heard second hand that no major breakthroughs were discussed….