An NCF Column for Inquiring Patients
By Prof. Alan Cocchetto
The "Just Ask!" column in 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 responsibilities for any action or treatment undertaken by readers. For medical advice, please consult with your own personal healthcare providers.
Q. Dear Professor Cocchetto, When I was being diagnosed 15 years ago, it was incidentally noted that there were multiple liver cysts. Since then they have become "too numerous to count" and very large; one currently over 3". Every few years one twists or breaks and I have hideous pain for weeks. Thinking about cysts, now I'm aware that I've had wrist cysts in adolescence, ovarian cysts in adulthood, neck cysts that had to be surgically removed twice recently and probably other cysts. Is there a connection between M.E. and cysts and are they actually "harmless" as I've been told? And do many with M.E. have cysts? Are they related to viruses. Thank you. (Fax from New Jersey)
A. Let me do the best I can to answer your questions given what is currently known. Since I'm not an M.D., some of these answers are based on my own personal observations. First, I have known of other M.E. patients with cysts. I can't remember where I read this initially, but female patients have reported or acknowledged the presence of ovarian cysts before. These can be very painful when they rupture and I am aware of several cases where the pain was so intense that these women ended up in local emergency rooms for treatment. So yes, cysts have been seen in M.E. Are they more common in those who have this disease? That I can't answer and I'm not sure if anyone has data on this yet. What I can also tell you is that liver cysts have also been seen in some of these patients. In fact, several patients have gone on to develop hemangioma tumors in the liver which necessitated surgical removal. Other patients develop nasal polyps. I am aware of some research that indicates that nasal polyps have been associated with an activation of the STAT1 protein . If this where to turn out to be true across the board (ie - a general finding for all cysts let's say), then this would be particularly intriguing given what the NCF's research has found to date. Though modern medicine may consider these cysts harmless, obviously it is unusual to be producing so many. My advice to you is the next time one of these must be removed, ask your physician if it might be advantageous to order pathology tests on the tissue samples so that perhaps additional light may be shed on the exact nature of this problem. Doing so may provide your medical team with important hints that could positively impact your condition!
Q. Every now and then I receive some correspondence that really gets my attention. I received
this email from a patient in Germany and am reprinting it here for others to read. I have
edited *out* some of the details: "Dear Mr. Alan Cocchetto, First I have to say sorry for my english. It's easy for me to understand it, but it is a pain to write with brainfog. May I introduce myself: I was suffering from ME/CFS here in Germany. My case is a little bit special, because my illness started in 2004 with 35 other cases and I began to understand the pandemic situation piece by piece. They call it cluster outbreaks, but nobody will recognize it in Germany. In the meantime I've collected a lot of cases in an outbreak- context. Everybody went to a doctor, but nobody wanted to know the context. At this time I was working at a * in Nuremburg. That may be important because all people have CFS- symptoms till today. One of the colleagues came back from Asia and suffered from flu with numbness feeling, strange symptoms. She had a contact with a tiger baby. Some had a gastroenteric influenza like me in April - later on my parotid gland began to swell. The right side of my face felt like a numbness after local anesthesia. The trouble started after spreading out in the spine. After a short time I suffered from ParvoB19 with typical exanthema on the right leg, but only there. I was sure all the time: This is a virus infection. They put me in a hospital and said 'You have a hypochondriacal neurosis.' Since the beginning I have a high HHV-6 level with positive IgM but negative PCR and very high rates of measles-antibodies.
A. Well, thank you! Just some comments here. The NCF certainly does grant you permission to translate our articles into German. Please note that PIV5 shares a percentage of its amino acid sequences with measles so antibody titers may reflect PIV5 infection. Is there antibody crossover reactivity with other parainfluenza viruses such as PIV1,2,3 and 4. Certainly at least to some degree. The swelling of the parotid gland is a well known and recognized target of rubulavirus members of the parainfluenza family, such as mumps and PIV-5, for example.
This is not surprising. Parotid gland tumors have even been seen in other cluster outbreaks. The NCF is aware that some animal vaccinations include live virus for parainfluenza. There are some excellent papers by Dr. Baumgartner on the canine strains of PIV-5 [2-6]. That's all you have to do is to take a peek at these and you'll easily conclude that PIV-5 is very capable of causing serious disease and it can cause persistent infections as well.
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