When I saw Dr. Shoemaker four years ago he was just beginning to narrow in on the answer to fatigue related illness. In virtually all of the 4,000+ patients he had seen there were a host of inflammatory, regulatory chemicals and hormones that were totally out of whack. He was never taught at Duke Med school to even look for these markers but his research made him chase the rabbits where they led. And the data he was getting contradicted much of what he was taught. He told me then, "I had to learn when the data contradicts what I was taught, the data is always right!" That makes him more scientist than doctor. And it makes him rare. Most docs only believe what they were taught in med school. Even new, well documented discoveries remain a mystery to them because they don't have time to read their own journals. The only time most of them learn anything new is when a pharma rep takes them to Tahiti. Sad but true most of the time.
At the time there were two little known hormones that were showing up as "dead low" in virtually all of his patients. One was MSH, Melanocyte Stimulating Hormone. The other was VIP, Vasoactive Intestinal Peptide. Ritchie was excited but frustrated with this finding. While he could measure them and see that they were low, he had no way of supplementing them. Neither were FDA approved and thus not available to him to use. They were available for researchers only for use in lab animals but not humans. Both are incredibly important and potent. MSH still is not available but VIP is available but only to docs who know about it and they are very few.
Shoemaker first got started chasing these rabbits 14 years ago when a group of about 25 of his patients suddenly all came down with the same cluster of symptoms. They were very fatigued, had terrible diarrhea, headaches, achy joints and muscles, sensitivity to light, and had cognitive/memory issues and a host of other symptoms. Ritchie was stumped. They did not have the flu or anything else he could diagnose. One lady had diarrhea so bad she was basically dying. He tried every med he could. Nothing stopped it. Out of desperation, he thought of an old medication, Cholestyramine, used to lower cholesterol. It had a side effect of terrible constipation. He thought maybe this would help her. It did. When he saw her at her next follow she reported that not only did it stop her diarrhea it got rid of ALL her symptoms. This totally perplexed Ritchie. He saw absolutely no way this med could have stopped all her symptoms. He gave the med to the rest of his sick patients. They all got well. Made no sense to him.
He called them all into his office where he tried to determine just what they all had in common. After quite sometime, it was determined they all had only one thing in common. Each had been in the Pokomoke river when there was a major bloom of an algae called pfiesteria. Shoemaker learned that this algae produced a fat-soluble toxin that attacked the nervous system of fish and killed them. This explained why cholestyramine helped each patient. It bound to cholesterol in the bowel and prevented it from being reabsorbed. The toxin was bound to cholesterol. So the toxin was carried out of the system.
But this did not explain everything. These people were not the only people who had been in the river. Why hadn't everyone gotten sick?? That question started Ritchie down every rabbit trail where it led him. He learned that there was genetic component to CFS. Virtually all the CFS patients he saw had a genotype where their immune system failed to recognize this type of toxin as a toxin. So it did not remove the toxin. About 25% of the population has one of the 12 or so subtypes of this major genotype. He learned that the primary exposure to this type of toxin was mold. Mold found in Sick Buildings and homes where water damage had taken place. This is a very common occurrence. The 12 genotypes represent a "spectrum" of extremely bad (the dreaded genotype) to somewhat bad. Depending on your genotype you would either get really sick or only somewhat sick. Or you would not get sick at all if you did not have the genotype.
Basically, the toxin kicks off a strong immune response that starts an inflammation cascade that never gets turned off because the toxin is still there. CFS and all other fatiguing illnesses are basically like getting the flu but the flu symptoms never leave. The inflammation cascade wrecks havoc systemically. It is like having a smoldering fire that is constantly starting brush fires all over the body. Most docs go after the brush fires but are unaware of the underlying fire. Put that out and all the brush fires go out.
When this fire continues for many years, damage to the body can and does happen. The most serious of which is what happens to the brain. Particularly the hypothalamus. It controls and regulates many functions in the body. When it is not working, lots of things stop working well. It is also where most of our VIP and MSH are made or are regulated. In chronic conditions like CFS these are always "dead low".
While MSH cannot currently be replaced, there is a pharmaceautical company doing a LOT of work on it. But VIP can and it helps put out the fire and even restores some of the functions of MSH.
