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The 2016 IACFS/ME International Conference--Review by Cort Johnson-Part 1

Gamboa

Senior Member
Messages
261
Location
Canada
Cort Johnson has done it again and written an excellent review of the recent 2016 IACFS/ME International Conference in Fort Lauderdale, Florida.

I was there and can tell you all that it was truly a turning point in the history of our disease. We are finally getting somewhere and there is no turning back now. Hope and excitement was in the air and I can hardly wait to see what we will learn next.

http://www.healthrising.org/blog/20...ercise-metabolomics-chronic-fatigue-syndrome/

Please read and enjoy, get excited, and above all, have hope. Help is on the horizon.
 

Sidereal

Senior Member
Messages
4,856
Great article. Interesting tidbit from the CDC study involving one-day CPET:

More of the ME/CFS participants in the study achieved peak effort (81%) than the healthy controls (78%). Their significantly lower peak oxygen consumption (peak VO2) suggested they weren’t able to produce as much energy. Their reduced ventilatory exchange (VE) suggested they may have had problems getting oxygen to their tissues. Their lower heart rates indicated they weren’t able to get their heart up to speed. The lower lactate levels indicated problems with energy production. The higher RPE levels indicated they were really exhausted by the effort.

Poor physical fitness alone cannot account for these changes. Sedentary people typically have reduced anaerobic thresholds and increased heart rates and ventilatory exchanges but ME/CFS patients displayed the opposite pattern; they had reduced heart rates, reduced VE and normal anaerobic thresholds. That suggests that their reductions are due to biological limitations.

For the first time in my life I feel like we're getting very close to understanding what's happening.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Poor physical fitness alone cannot account for these changes. Sedentary people typically have reduced anaerobic thresholds and increased heart rates and ventilatory exchanges but ME/CFS patients displayed the opposite pattern; they had reduced heart rates, reduced VE and normal anaerobic thresholds. That suggests that their reductions are due to biological limitations.


So we aren't deconditioned then? Thank goodness Sonja Chowdhury was there to hear that and will be rushing back to the UK to update her colleagues.
 

ash0787

Senior Member
Messages
308
" It’s a bit surprising that we don’t see more heart rate variability measures done within exercise studies "

yes, this seems to be the easiest thing to measure that is noticeably different in us

I was thinking of tweeting this article to ester crawley but it doesn't seem that she has an account
 

Gijs

Senior Member
Messages
690
So we aren't deconditioned then? Thank goodness Sonja Chowdhury was there to hear that and will be rushing back to the UK to update her colleagues.
That is not true. AT and Vo2max are very low in many ME patiëntes they also have tachycardia (POTS)ALSO NOT DECONDITIONED!
 

L Y

Messages
10
Cort Johnson has done it again and written an excellent review of the recent 2016 IACFS/ME International Conference in Fort Lauderdale, Florida.

I was there and can tell you all that it was truly a turning point in the history of our disease. We are finally getting somewhere and there is no turning back now. Hope and excitement was in the air and I can hardly wait to see what we will learn next.

http://www.healthrising.org/blog/20...ercise-metabolomics-chronic-fatigue-syndrome/

Please read and enjoy, get excited, and above all, have hope. Help is on the horizon.

I enjoyed the conference immensely. I did not understand the push to invite Big Pharma to the table as from what I understand all our subgroups have a hard time handling the toxic load of drugs. Our bodies make drugs and every drug has an amino acid precursor(s). I didn't understand why the K-Pax supplement has caffeine and why Mitoq has uneccessary additives.
 

RogerBlack

Senior Member
Messages
902
I enjoyed the conference immensely. I did not understand the push to invite Big Pharma to the table as from what I understand all our subgroups have a hard time handling the toxic load of drugs. Our bodies make drugs and every drug has an amino acid precursor(s). I didn't understand why the K-Pax supplement has caffeine and why Mitoq has uneccessary additives.

It is of course possible that a cure might be achieved by the correct mix of essential oils and spices, but...

'Amino acid precursor' is not correct.
Yes, some drugs may be partially or mostly composed of amino acids, in that many drugs are proteins which are built of amino acids, but this is not meaningful, as most proteins have over 50 amino acids all of which must be in the right order.

Drugs are usually proteins or other chemicals which are not made by the body - even if it has enough materials.
In the same way you can't buy a lot of bags of concrete and bricks and expect a house to result if you just add water - you need to put those amino acids together in a specific way to make proteins to form drugs.
The body has no blueprint for most drugs, or in some cases is not using that blueprint.

Simply supplying more bricks won't help.

Practically every amino acid alone has been tried by now, either in trials, or by patients - if it was that easy we'd have been done by now.

Something that changes the function of the mitochondria in the body is likely to be either a novel drug that is not synthesised by the body, a small molecule (not a protein composed of amino acids) or perhaps even a DNA approach such as CRISPR.
All of these need big pharma.
 
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