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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I wonder if there is a way to entice healthy controls.
• Offer to give them a Phoenix Rising Hero Award.
• Make a YouTube video about them and give them their 15 minutes of fame.
• Promise that 50 ME/CFS patients will send them thank you cards.
There's got to be something we can do to persuade more healthy controls to volunteer.
Thank you Cort for this. I found it very interesting and look forward to learning more. It makes sense, but what triggers this problem? Are there any theories?
Thanks for your very valued hard work. It is greatly appreciated.
Warmest wishes,
C.G.
Interesting Rich. We just need more money don't we? I believe the original paper suggested increased rates of oxidative stress which I would think fits into the GSH depletion scenario. I don't know if the possibly increased lactic acid levels in the brain found by the CFIDS Association researcher have anything to do with this? Anyone know?
Eric can those microvascular tears be picked up by brain imaging?
Sunny, I wish you were in that study! I'm trying to get into touch with the Georgetown CFS team again. I'll send along your email.
Yes, money is a big help, if it is spent wisely. Unfortunately, it seems to me that too often the money that is allocated for CFS is not spent on hypothesis-driven research. As a result, it is spent measuring backwater or downstream phenomena that have nothing to do with identifying the root issues or figuring out how to treat them. Conference after conference, people report on measuring something they like to measure a little better than they did the last time, but it still is no more useful in shedding real light on the causes of CFS than it was the first time they measured it. It's just that these are "safe" things to measure. They know they will be able to get some numbers to report so that they can publish another paper and thus have a basis to get their grant renewed for the next year - Rich
The speed of transport of nerve impulses in the axons of the neurons depends on having good myelin around them. At least three components of myelin require methylation for their synthesis, at least partially: myelin basic protein, phosphatidylcholine, and some plasmalogens. Put a partial block in the methylation cycle and you will not be able to keep the myelin maintained in good condition - Rich.
The Central Motor System and Fatigue - Three of the five observations Chaudhuri and Behan use to support their claim that the fatigue in CFS is largely central concern decreased central motor activation or drive. Some are quite complex, they will be explained later.
- CFS patients have delayed central motor conduction similar to that seen in multiple sclerosis (MS) patients
- The delayed facilitation of central motor evoked potential (MEP) seen the post-exercise period suggests depressed cortical excitability is present in CFS.
- CFS patients display increased perception of effort that is associated with reduced central motor drive during exercise
- CFS patients are unable to fully activate their muscles during intense exercise despite having normal muscle activity (muscle metabolism, contraction)
Another is the excitotoxicity that produces anxiety, hypersensitivity and insomnia, and probably also brain fog.
For me this is just another very, very interesting area of work in ME/CFS. We don't have a lot of researchers working for us, but by God, we've got some really good ones probing some really intriguing areas. I love the connections between the blood vessels and the autonomic nervous system; basically anything focused on the autonomic nervous system is a big hit with me.
The only problem with the studies is that they take soooo looong. This study is due to end in 2011. I don't think they ever thought it would take this long. I think its entirely due to the fact that they've had a lot of trouble getting healthy controls do the spinal tap. When I was there they told me that they'd had CFS patients flying across the country on their own dime to take part in the study but they were getting almost no healthy controls on board. They wanted to do 75 and I heard several months ago this was still a big big problem for them.