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Just Ask!
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 [1]. 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.
There was no indication for a sick-building-syndrome and in the following months friends, husbands and wives caught the disease. My daughters felt tired and nervous all the time since 2004. One of them fell into a diabetic coma in Summer 2006 and now she is diabetic, but the sugar rates are fluctuating in a very strong way. The other one followed in summer of 2007 after a viral infection. We took her blood and she had a very high level of Parainfluenza 1, 2 and 3 antibodies (cross-reaction?) In the * we had 6 cases of EBV-reactivation (including me, but was not sure), 1 case of chicken pox (no reactivation) and some autoimmune diseases began. One man died with a cancer of the gut in winter 2004. I'm not sure now, because PIV5/SV5 targets the B-Lymphocytes too, so maybe there is a polyclonal stimulation in some cases. In 2006 a new colleague had many problems with the pancreas, the nerves and a respiratory syndrome after her dog-vaccination with Vanguard 7 and NobivacT. Both vaccines include a living version of PIV5 and "Staupe" (Measles of the dog). She didn't get a diagnosis. I read a lot about "Staupe" and other Paramyxoviruses. They target B-Lymphocytes, 'Kupfersche Sternzellen (Liver),' and the bone marrow like Parvovirus. I had collected more than 3,000 abstracts and articles during my 'illness-time.' I'm sure that the NCF is on the right way. I studied a lot of publications, but the best one is my own body! Paramyxoviruses and Parvoviruses play an important role! I'm sure! We have many connections to CFS-Groups here in Germany and I'm working together with some doctors. They learned a little bit more and some cases get diagnosis like CFS or Fibromyalgia. I visited Dr. * in Belgium, but there was no success. I tried a lot of therapies, but no they don't work. I got a diagnosis with my MHC-Classes 1 and 2, there's a leaky gut, but I think there's something wrong with my cerebrospinal axis too. In 2006 I started a private initiative. We call it 'immunselbsthilfe' (like 'immune-self-support') and 2007 we made a website. We try to bring your results to the health care here in Germany. I wonder, because the most important organization in Germany 'Fatigatio e.V.' in Berlin doesn't recognize the results of the NCF. They discuss Dr. Chia's results, the work of Nancy Klimas and Dr. De Meirleir and so on, but nobody is looking for PIV5 and Parvoviruses. I'll try to support your work, but we have no money. We're looking for a sponsor here in Germany. The main problem will be that nobody recognizes the pandemic situation and the connection between the cases.... Do you give us permission for a translation of the article in the appendix from your newsletter? We would like to make a publication in the German language....I'm going to fight for the truth and your results are a great success for me and the others.
Thank you for your work!...."

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.

  1. Signal transduction and oxidative processes in sinonasal polyposis; Cannady SB, Batra PS, Leahy R, Citardi MJ, Janocha A, Ricci K, Comhair SA, Bodine M, Wang Z, Hazen SL, Erzurum SC; J Allergy Clin Immunol. 2007 Dec;120(6):1346-53
  2. Properties of an encephalitogenic canine parainfluenza virus; Evermann JF, Krakowka S, McKeirnan AJ, Baumgärtner W; Arch Virol. 1981;68(3-4):165-72
  3. Acute encephalitis and hydrocephalus in dogs caused by canine parainfluenza virus; Baumgärtner WK, Krakowka S, Koestner A, Evermann J; Vet Pathol. 1982 Jan;19(1):79-92
  4. Persistent infection of Vero cells by paramyxoviruses. A morphological and immunoelectron microscopic investigation; Baumgärtner W, Krakowka S, Blakeslee JR; Intervirology. 1987;27(4):218-23
  5. Evolution of in vitro persistence of two strains of canine parainfluenza virus. Brief report; Baumgärtner W, Krakowka S, Blakeslee J; Arch Virol. 1987;93(1-2):147-54
  6. Canine parainfluenza virus-induced encephalitis in ferrets; Baumgärtner W, Krakowka S, Gorham JR; J Comp Pathol. 1989 Jan;100(1):67-76

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