Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

Gemini

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
Gemini said:
Started to get it, Linda's intro with picture & sound for a few minutes, then frozen picture, no sound....Windows 10 with Edge browser...
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Tried again 30 minutes later & this time got perfect sound and video...saw some of Dr. Naviaux's presentation and all of the other speakers up to the current lunch break.

Excellent Symposium, looking forward to the afternoon session!

Glad I gave the Livestream a second try!
 
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Alvin2

The good news is patients don't die the bad news..
Messages
3,119
AshleyHalcyoneH said:
I will begin editing and formatting it as soon as the videographers get it back to me! It can take a few weeks on their end though so my guess is sometime in september!
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Are you saying of the broadcast we are watching today won't be on youtube till september?
 
Kati

Kati

Patient in training
Messages
5,497
Rrrr said:
did a researcher on the panel say *not* to do a ketogenic diet because the body may be doing what it is doing (metobolicly) as a protective mechanism?
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Hi @Rrrr I believe one of them said that support of the system that is working in the body (glycolysis, liposysis) needs to be supported. It may mean higher protein diet if protein is how your body makes energy. It may mean higher lipids for others. At least one of them said it was imperative that people who would decide to go the ketogenic route needed to be closely followed by a doctor.

Personally I seem to need proteins more. A typical day i eat 60-80 grams of it. I am in no way treated or cured. I do not believe diet will get me back to work.
 
jpcv

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
Rrrr said:
did a researcher on the panel say *not* to do a ketogenic diet because the body may be doing what it is doing (metobolicly) as a protective mechanism?
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Yes, I didn´t like it.
Correct if i´m wrong, but many said they couldn´r recomend any kind of tretment?
Not even a diet modification? C´mon guys, we need something to grasp on...
I see no downside to a low carb diet
 
M

msf

Senior Member
Messages
3,650
I think Macgregor may be KDM´s Australian alter ego. Their way of talking about ME is very similar, or perhaps that just comes with experience. I was very impressed by Hanson´s answers in the panel discussion too.
 
Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
jpcv said:
Yes, I didn´t like it.
Correct if i´m wrong, but many said they couldn´r recomend any kind of tretment?
Not even a diet modification? C´mon guys, we need something to grasp on...
I see no downside to a low carb diet
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Yes they did not recommend any treatments. Because they cannot as they are not physicians and it would be unethical.

There are potentially many downsides to a low carb diet, especially if fats, proteins and micronutrients are not accounted for in a sensible fashion. Going 'low carb' doesn't automatically mean that people will utilise (or even can utilise in MECFS) other macronutrients and micronutrients.

I'm as utterly impatient as everyone else, but we are not going to be getting clinical recommendations from this Symposium. What we are getting is incredibly valuable insights into research which will lead to those clinical recommendations.


B
 
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msf

Senior Member
Messages
3,650
I´m quite annoyed I missed Armstrong´s talk. I couldn´t access the slides someone posted - does anyone else know where they can be found?
 
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leela

Senior Member
Messages
3,290
I feel like donating my living corpse to these people. They could just take samples all day for all I care, what else of value am I doing over here?
I wish we could just park ourselves in a comfy chaise in a nice quiet country house and have these people use us for science!
 
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perrier

Senior Member
Messages
1,254
Alvin2 said:
I think we would all agree with this.
I take a bunch of supplements, they help a bit but double of nothing is still almost nothing.
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Dr Wahls was bedridden with MS, and she encouraged patients to not expect an immediate magic bullet. She developed a high vegetable diet and she's not in bed anymore. We have been trying it now too but my daughter can't consume the volumes of vegetables with the GI issues.
 
mango

mango

Senior Member
Messages
905
msf said:
I´m quite annoyed I missed Armstrong´s talk. I couldn´t access the slides someone posted - does anyone else know where they can be found?
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I could email them to you if you'd like?

ETA: Is everyone else having problems accessing them too?
 
Kati

Kati

Patient in training
Messages
5,497
perrier said:
Dr Wahls was bedridden with MS, and she encouraged patients to not expect an immediate magic bullet. She developed a high vegetable diet and she's not in bed anymore. We have been trying it now too but my daughter can't consume the volumes of vegetables with the GI issues.
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Dr Wahl's commercialized her n=1 experiment. She is selling (and profiting) hope for desperate patients
 
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Alvin2

The good news is patients don't die the bad news..
Messages
3,119
perrier said:
Dr Wahls was bedridden with MS, and she encouraged patients to not expect an immediate magic bullet. She developed a high vegetable diet and she's not in bed anymore. We have been trying it now too but my daughter can't consume the volumes of vegetables with the GI issues.
Click to expand...
Then i suggest a clinical trial with dozens or hundreds of ME/CFS patients to show this is a game changing treatment.
You will forgive my skepticism but saying this will work for others based on a sample size of one with no placebo control is not convincing
 
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