NIH CFS Steering Committee Wants Your Input!

Cort;149361 said:

Remember this is OTHER than XMRV...

This is so easy for me -because one issue always pops out.


1. If there was ONE issue you would like NIH to address with regard to our disease, what would it be?

For me it's uncovering what is causing post-exertional malaise. For me this means digging into the processes occurring during exercise and in the post-exercise period to find out what drives my symptoms. I think one of your missions to wrap the researchers head around PEM - that it is not just fatigue, that it tends to be delayed, that it can last a long term and get them to do serious studies to elucidate what's going on - starting with focusing on the metabolic abnormalities done by the Pacific Lab and broadening them to include immune and other factors.

The problem with this and any research question is that there are almost certainly subsets and people who don't really experience this. It's critical for researchers to be able to define PEM - I would think perhaps by taking a close look at symptom patterns. I suspect there's a split in ME/CFS between people who experience muscle weakness and muscle pain after physical exertion. I experience fatigue associated with muscle pain; I think other people experience muscle weakness.

Imagine a study that looked at metabolic abnormalities during repeat exercise and HPA axis abnormalities (which have already been shown in one study), blood vessel functioning and blood flow patterns, oxidative stress (it's already high - since exercise induces free radical formation that it goes through the roof!), receptor upregulation (Lights), immune activity, etc and associating functioning with those parameters over the next week.

What is happening in the gut after exercise? Are those mucuosal barriers widening allowing toxins to enter the bloodstream. What about those cytokine patterns? Do they get more discombobulated? Does NK functioning poop out even more?

What happens with EBV and HHV6 activity? EBV is known to spike after stress but does it spike in CFS patients after exercise as well?

What would a fMRI show? I would love to see what a CFS patients brain looks like after exercise. Imagine a before and after picture of that. Does heart rate variability plummet even further indicating, paradoxically that SNS activity is increased right when patients need to be able to relax and heal. Speaking of the SNS what about the NPY connection? I KNOW in my heart of hearts that NPY levels MUST increase since too much exercise invariably leads to increased irritability and pain for me....And how does that relate to immune functioning? Since there is an NPY/Immune connection.

Several brain studies show that the brains of people with ME/CFS have trouble shutting themselves off - the brain remains in an excitable state for too long, if I remember correctly, after exercise. There are also studies apparently suggesting reduced 'planning' and muscle activation during exercise may be present...why would one not experience fatigue if the muscles are not being recruited to work properly??? Research into this area, which seemed so promising - has just disappeared in the last 5 years or so....

This is what they should be doing in my opinion........That should be the big study to elucidate what's going on in CFS. I think you should prod them to produce as comprehensive a study on PEM as possible. Focus on PEM - that is where the heart of this disorder lies for me.

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