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Just Ask!
An NCF Column for Inquiring Patients

By Prof. Alan Cocchetto

The "Just Ask!" column is intended to act as a means for patients to inquire about issues related to the NCF's research activities.  This column is NOT intended to act as medical advice in any way, shape or form!  The National CFIDS Foundation assumes no responsibility for any action or treatment undertaken by readers.  For medical advice, please consult with your own personal healthcare providers.

Q.  My son suffers with CFS (CFIDS/ME) and his orthostatic intolerance is one of his biggest problems. His doctors have tried several meds, all to no avail. With what the NCF is learning from their research, can you shed any light on this problem? (Phone question)
A. Orthostatic intolerance (OI) is a syndrome characterized by lightheadedness, fatigue, altered mentation, syncope and postural tachycardia. One of the tests that doctors have done in CFIDS/ME patients is to check the serum norepinephrine (NE) as well as the epinephrine (E) levels by testing the patient both laying down and then later, standing up - having blood drawn for each position. This simple test can be useful since OI can be associated with catecholamine abnormalities (NE and E production).  Doctors can then examine the resulting patient NE and E values and gain insight into the nature of the problem. Biochemical features of OI may include plasma NE concentration that is disproportionately high in relation to sympathetic outflow, decreased NE clearance with standing, resistance to the NE-releasing effect of tyramine, and increased sensitivity to adrenergic agonists. Dopamine beta-hydroxylase (DBH) is the enzyme that catalyzes the conversion of dopamine to NE. Since certain types of infections can alter levels of NE, the NCF believes that these infections do so through the direct alteration of DBH.

Normally changes to DBH levels are genetic in nature, however reiterating, the NCF has found that some types of acquired infections can alter DBH levels.  Since DBH deficiencies are often associated with OI (moderate to severe), the good news is that doctors have begun using a drug, known as L-DOPS to correct this condition.  L-Threo-3,4-dihydroxyphenylserine (L-DOPS) is a nonphysiological neutral amino  +acid that is directly converted to the neurotransmitter norepinephrine by aromatic L-amino acid decarboxylase. Some hospitals in the US are currently testing the use of L-DOPS in people with OI. I suggest you consider contacting hospitals that are currently testing OI patients using L-DOPS. I hope you find this information encouraging!
Q. I have contacted several CFIDS patient friends who have been involved in the Procrit  (erythropoietin) studies. They tell me that they haven't improved.  Could you please explain why this is? (Internet question)
A. You can see from my article in this Forum that the ciguatera epitope destroys red blood cells and it does so by altering red cell sodium/potassium pump and therefore modulates the red cell enzyme phosphoglycerate kinase. Though Procrit or erythropoietin acts to stimulate red blood cell production in the bone marrow, it does nothing to antagonise the mechanism that is destroying these very same cells. In other words, without blocking the activity caused by the ciguatera epitope or going directly to the source of the problem, you're out of luck! This may also help to explain why patients who receive blood transfusions initially report improvement but then go right downhill to where they were prior to their transfusion. As we have mentioned in previous Forums, the NCF believes that that the ciguatera epitope directly results from a specific infection that we are trying to identify. Without eradicating this infection, the epitope is generated thereby causing downstream problems with the red blood cells. Thus, the unknown infection is directly responsible for destruction of these red cells via this epitope mechanism. Our research is aimed to fill in these blanks in our current knowledge as it applies to CFIDS/ME pathology.
Q.  Since the NCF was the first group to seriously highlight the importance of the STAT1 protein in PWC/ME patients, has it learned anything else from Dr. DeMeirleir and his group? (Internet question)
A.  Dr. Kenny DeMeirleir and his colleagues have filed several additional US patent applications in 2005. One patent suggests that in diseases that involve abnormal levels of apoptosis (chronic immune diseases such as CFIDS/ME, MS, etc.), screening for various tumor markers of broad indication (carcinoembryonic antigen - CEA) may be in order.  The NCF has learned that CEA may be found in the blood of people who smoke heavily or who have some types of cancer, especially large intestine (colon and rectal) cancer. It may also be present in people with cancer of the pancreas, breast, ovary or lung. Certain diseases may also raise CEA blood levels. CEA testing may turn out to be an important screening tool for use by oncologists, especially in critically ill long-term patients with this disease.

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