Sue Noble of Orcas Island, Washington, also believes in stretching.
“After much painful trial and error, I find that my body really likes a 15-minute stretching regime every morning (if I don’t I’m achy all day), followed by a short, moderate walk.”

“I found out the hard way that ‘forcing myself to exercise’ – especially aerobically – repeatedly led to terrible crashes,” says Cerryl Laird of New Mexico. ...

Others find that their ability to exercise varies widely, depending on their health at any given time.

“About four years ago, I had some energy I hadn’t had before and I decided to take advantage of it. I began to take walks, short ones at first,” said Cathy Beedle, a 45-year-old former nurse who lives in Zimmerman, Minn. “Gradually, I was able to do more. I bought myself some nice walking tapes and by the end of that year, I was able to walk three miles a day at a bit less than three miles per hour. Then, I got the flu. Afterward, I tried to resume walking. I went down the driveway and nearly passed out. I tried and tried into June of the next year, trying at least once or twice a week. I’ve never gotten beyond the mailbox.” ....

Most veteran PWCs find that listening to your body is the most important factor in making a decision as to whether you should exercise.

“Finding the balance is the key,” said Dopperpuhl.
“You need to find the right balance between activity, exercise and rest. It’s a very delicate balance, and everybody’s balance point is different. I realize that as with any other treatments for CFIDS, exercise only helps a subset of patients, just like sodium or melatonin or whatever.” ...

New parasite Found In Chronic Fatigue Syndrome (CFIDS)
by Immunesupport.com Staff
ImmuneSupport.com
01-16-2000

CFS Radio Program Jan. 16th, 2000.
Roger G. Mazlen, M.D. Host with Dr. Larry Klapow.

Dr. Mazlen: Dr. Larry Klapow was a guest on this past Sunday's CFS Radio Show and gave a very important and very informative report of the work he has been doing. Dr. Klapow has been finding a new roundworm type of parasite in CFS patients called "Cryptostrongylus pulmoni". ...

Dr. Mazlen: To kick off the new millennium with a good show that you'll find of great interest and great importance, I'm talking today with Dr. Larry Klapow, a Ph.D. in Invertebrate Biology who's in Burlingame, California near San Francisco. Good morning Larry, welcome to our show. ...

Dr. Mazlen:
Can you tell our audience something about this suspected new parasite that you've found in a percentage of patients with Chronic Fatigue Syndrome? How'd you find it?

Dr. Klapow:
Well, Roger, it came about as a result of a conversation I was having with an immunologist friend of mine, Dr. Vincent Marinkovich, here in Redwood City, California. He was treating a CFS patient we thought might have a roundworm infection. The patient had a low grade eosinophilia and some unusual rashes on the torso that suggested the possibility of threadworm disease. Antibody tests and stool tests were negative. I thought about this for a while and I know that some chronic parasites migrate between the digestive tract and the respiratory tract and some of them are coughed up in sputum. So I looked at the sputum and that's where I found it. I called the new parasite "Cryptostrongylus pulmoni", that's a provisional name and it means "the hidden lung worm".

Dr. Mazlen:
That's pretty appropriate in terms of what you say.

Dr. Klapow:
It definitely is, Roger. It's very difficult to find.
And I hope other people will start looking for it. In fact, I've put together some material that I think can help them. ...

Dr. Klapow: You can identify the parasite, the female by its mouth parts and the male by its very intricate reproductive structure. This parasite is very small. The female is less than a millimeter long and the male is about a third that length. So, in addition to being small there's also a lot of difficulties. The specimens I usually pick up are naturally expelled in sputum and they're usually very decayed and rare and because of this you need very specialized imaging techniques to find them. They're not expensive techniques, they're just specialized. In any case I wanted to help people look for this parasite and so I put together a website which describes how to find it in great detail. It also includes anatomical drawings ....

Dr. Larry Klapow: OK, I'll give you my own email address and then I can post the other rather longer address for people who contact me. My email address is lak123@gateway.net.

Dr. Mazlen:
Now, this is really important because this introduces a whole new dimension about Chronic Fatigue Syndrome and its possible relationship to roundworm infestation. Can you tell us so far, at least, as you've been looking, what percentages of Chronic Fatigue Syndrome patients are turning out to be positive for this worm?

Dr. Klapow:
Yes, I find the parasites in about 40% of three-day sputum samples from CFS patients.
However, I have to tell you that yields are very low. In fact, they're so low that I think I'm probably missing as many positive patients as I'm finding. The problem here is that over 80% of the positives I get are represented by only one identifiable specimen. So just by chance it looks like I'm missing a fairly high percentage. ...

Dr. Mazlen:
... Larry where do you think these parasites might be coming from?

Dr. Klapow:
Well, Roger, they have some specialized anatomical structures that suggest that they're related to parasites of animals that live in the jungles of Southeast Asia. In fact, there's been somewhat of a history of hard to diagnose parasites coming out of that area and being brought back to "Western" countries after periods of warfare. It happened in the Victorian era when French soldiers were returning from this area and brought back the chronic parasite Strongyloides stercoralis to Europe where it was first diagnosed in 1894.

It also happened again in World War II.
This time British soldiers became infected while they were imprisoned in Burma returned to England and 30 years later, in 1974 they were diagnosed with chronic parasites they had gotten while they were in prison.

It's kind of a testament to how difficult some of these parasites are to find and treat. I would like to look at people who've been to Southeast Asia ....

Dr. Mazlen:
You say it might be coming from this source and that's a possibility.
How is it contracted? How do you get it then?

Dr. Klapow:
I'm really not sure. What I can tell you is this. I've never seen a fresh transmissible stage of the parasite in any sputum sample I've seen so far. I've done a couple of hundred samples at this point. So I don't think there's any evidence right now of casual transmission. But roundworm parasites are typically acquired by eating contaminated food, but an outbreak of Cryptostrongylus infection, if it were transmitted in this way, would look very different then a typical food poisoning incident where people get sick within a couple of hours after eating.

Dr. Mazlen:
That's due to the long latency that you mentioned.

Dr. Klapow:
Cryptostrongylus is very small but it produces a larvae which is very large so there's an implication here that it must be reproducing very slowly and possibly has a very long latency time. Of course, we know that the outbreak of Chronic Fatigue Syndrome usually take place over several months and in some cases a couple of years and that I think would be consistent with the possibility of a food borne infection with a very long latency period.

Dr. Mazlen:
Well, now we're going to turn to the clinical side.
Most of the time that doctors are looking for parasitosis, they look to see elevated eosinophil and serum IgE, or immunoglobulin E, levels in patients. Isn't this usually the case?

Dr. Klapow:
Yes, but that's the first question that I get from doctors when I tell them that I found what I think is a new species of roundworm parasite. Where's the elevated IgE? And the answer is elevated IgE is mainly apparent in acute roundworm infections. With time, the chronic parasites are able to suppress the IgE response and many of them produce a clinical picture where the patients either have normal or lower than the normal average level of IgE and, in fact, that's the picture you see in CFS and in all the studies I've reviewed, IgE is lower in CFS patients than in healthy control populations. ...

Dr. Klapow:
In fact, there was a paper that's a few years old in the Journal of Chronic Fatigue Syndrome that indicates that if you correlate IgE and eosinophil levels with the number of symptoms the patients report, the sicker they are the lower the IgE and eosinophil counts and that's a statistically significant relationship.

Dr. Mazlen:
And I see it and it seems to be borne out. Now, what do you think is suppressing IgE in this CFS or Chronic Fatigue Syndrome patients? What's the mechanism?

Dr. Klapow:
Well, I think the mechanism may involve the cell marker CD23 which suppresses IgE. There are a couple of other things that activate CD23, the IgE suppresser and those are active herpes viruses and some of the TH1 cytokines, particularly interferon-gamma and the 2'-5'A, the activator of the latent RNase enzyme. Both herpes viruses and 2'-5'A, as you know, are highly elevated in CFS patients. In fact, it looks like some roundworms may be using chronic viruses as cofactors to help perpetuate their own survival.

Dr. Mazlen:
That certainly rings true from what I've seen clinically and that leads us to another question. If a lot of Chronic Fatigue Syndrome patients have allergies, they should have elevated IgE levels but a lot of them, as we were just saying, don't. It seems to fit the model you propose of a suppresser.

Dr. Klapow:
Yes, there are some doctors, in fact, that think allergy is a risk factor for getting a roundworm infection and that's because patients who tend to produce too much IgE to non-specific stimuli, harmless things, may not have enough reserves left over to fight off the parasites so they get a foothold, and in fact, initially, you can even see patients who report increased allergies, but later on when they're diagnosed with CFS and the presumptive parasite, if we may go so far and speculate, has suppressed their IgE response and the values come out clinically low.

Dr. Mazlen:
Now, this brings us to a leading question, which, obviously is a speculation, but that's all right because that's what this show is about. We want to raise issues and have other people contribute to answering them as well. There seem to be many infectious agents that have been proposed as being possible etiological agents for Chronic Fatigue Syndrome. None of them have held up specifically as a single causative agent. What do you think about this roundworm infection, c.pulmoni, is it a primary infection or is it just another opportunistic organism?

Dr. Klapow:
... I think it's an interesting candidate for a possible primary agent.
I don't think it's an opportunistic infection. Opportunistic infections are usually airborne and are present everywhere. They're just waiting for our immune systems to be weakened before they establish a chronic infection. ... They're are also a number of things that I think can connect roundworm infection to the major physiological systems that malfunction in CFS. And they have to do with the wide variety of physiologically active agents roundworms are able to secrete.

Dr. Mazlen:
We're going back now and talking about the hormones that these roundworms secrete, namely vasoactive intestinal polypeptide, which is known as VIP, and hippocampal cholinergic neurostimulatory peptide which is known as HCNP, and what they do and Larry, what do these hormones cause? What do they do?

Dr. Klapow:
.. VIP is involved in regulating blood pressure and blood flow.
It's important in regulating blood flow to the brain.
It's believed to be implicated in orthostatic intolerance from which a number of CFS patients suffer.
And, it also controls hypothalmic CRH, a hormone that's ultimately responsible for the level of cortisol in the blood which is suppressed in CFS and it's also suppressed in chronic roundworm infections.

... HCNP, is a limbic system neuropeptide and it's believed to be involved in memory and immune function. When it goes wrong in areas that have Alzheimer's lesions, there are cognitive symptoms. In fact, some doctors have suggested that CFS looks in some respects like a reversible form of Alzheimer's. ...

Dr. Klapow: Well, the bad news is that it bare's any resemblance to that disease.
*What good news there is, is that the cognitive symptoms come and go, without apparently doing permanent damage. I think it is a reasonable hope that increasingly effective treatments for CFS will be found in time to substantially help most of those who now suffer from this difficult and often misunderstood disease.

Transcribed by Carolyn Viviani
*Added to transcript by Dr. Klapow after the show.
Source: Transcribed by Carolyn Viviani; carolynv@inx.net.
(Note: The CFS Radio Show has once again lost its sponsor so this will be the last show until a new sponsor can be found.)

Herpes Virus 6: Tests Establish Connection
Between Chronic Fatigue Syndrome (CFIDS) &
by John W. Addington
ImmuneSupport.com
01-01-1999

Thanks to the CFIDS & Fibromyalgia Health Resource and to their supporters and customers, a test is now available to diagnose human herpes virus 6 (HHV-6), the likely cause of symptoms in a majority of the CFIDS population. What makes this news particularly exciting is that antiviral medications are now being made available that can keep this herpes virus in check and thus keep in remission the ailment it causes.

HHV-6 Can Cause CFIDS
Although over the past ten years numerous studies have been done in the United States, Japan, and throughout Europe, showing a correlation between HHV-6 and CFIDS; only recently has it been conclusively shown that a high percentage of CFIDS patients have an active infection of this viral agent. Two reports presented at the October 1998 Cambridge Massachusetts American Association for Chronic Fatigue Syndrome Conference highlighted these new findings.

A report from one of the original discovers of HHV-6, Dr. Dharam Ablashi, and associates, presented International studies supporting evidence of active HHV-6 in up to 75% of CFIDS patients as compared to virtually none in those without the ailment. The other HHV-6 presenters at the conference were Drs. Konstance Knox and Donald Carrigan.

Drs. Knox and Carrigan are with HerpesVirus Diagnostics, Inc., the Wisconsin organization partially supported by the CFIDS & Fibromyalgia Health Resource catalog, and are working in conjunction with Drs. Anthony Komaroff of Harvard Medical School, Daniel Peterson, considered a founding father of CFIDS and member of the Healthwatch/Health Resource Medical Advisory Board, and Joseph Brewer, a renown infectious disease specialist.

These dedicated researchers have found that while HHV-6 is active in over two thirds of CFIDS patients, it is only intermittently detectable.

HHV-6 is a cousin to HHV-5 cytomegalovirus, the virus that can cause serious infection, blindness or even death in patients whose immune systems have been compromised by cancer, HIV, and immune suppressing drugs used to treat transplant patients. HHV-6 itself, has two forms designated as HHV-6A and HHV-6B. While over 90% of adults have HHV-6B retained from an early childhood infection called roseola, it remains dormant throughout the rest of their lives.

Approximately 20% of American adults harbor HHV-6A in its latent form.
However, those with particular ailments, such as AIDS, Multiple Sclerosis, and CFIDS have the potentially more harmful HHV-6A present in its activated state. Dr. Knox theorized that "various factors could predispose one to active HHV-6 disease including genetic make-up, exposure to chemicals, and other environmental factors." She further states that "what makes HHV-6A particularly insidious is that it attacks and debilitates immune cells, our defense mechanisms designed to destroy such infections." Additional research reveals that HHV-6A can damage tissues such as bone marrow, the liver and the lungs.

Get Tested for HHV-6

A quick and accurate way to be tested for HHV-6 is via a 'rapid blood culture' test. This test was developed by Drs. Knox and Carrigan at

HerpesVirus Diagnostics, Inc
12346 W. Layton Ave.; Greenfield, Wisconsin 532281
Physicians may call [414] 529-3680
and is only available at this laboratory.

HerpesVirus Diagnostics Inc
10437 Innovation Drive, Suite 321
Milwaukee Wisconsin 53226
Telephone: (414)529-3780

These doctors explained that other HHV-6 tests merely detect past infections and have not proven to be as accurate as the 'rapid blood culture' technique. Drs. Knox and Carrigan feel that since the rapid blood culture test only detects active HHV-6 infections, this test is a better indicator of the causative agent for present disease and thus present symptoms. Additionally, it is important to understand that because HHV-6 can wax and wane, an initial negative result does not rule out HHV-6 infection.

... the 'rapid blood culture' test indicates HHV-6 infection in roughly one third of CFIDS patients initially tested. However, if those initially found negative are tested again later, another 30-40% are found to have the activated virus. Thus to irrefutably determine whether you have an active infection, Dr. Knox recommends the test be done two to three times over a period of several months, particularly when symptoms are at their worst.

Should everyone with CFIDS be tested for HHV-6?

Although it is not yet known whether all patients with CFIDS are likely to have active HHV-6 infections, data at this time indicates that a high percentage of those with CFIDS symptoms are suffering from this virus. Because the virus frequently infects the brain and spinal cord, Dr. Knox feels it's especially prudent for CFIDS patients with neurologic symptoms, such as cognitive problems or burning or tingling sensations, to be tested. This advice is substantiated by findings that 56% of patients with significant central nervous system symptoms tested positive on their first test. Only 37% of CFIDS patients, unselected for neurologic symptoms, tested positive on their first test.

Treatment Can Put HHV-6 in Remission

Dr. Ablashi presented information at the Massachusetts conference revealing that in their study HHV-6 specific transfer factor treatment eliminated the virus in two CFIDS patients. Past Italian and Japanese studies have likewise shown the effectiveness of transfer factor therapy in the management of this herpes virus. Healthwatch is tracking transfer factor therapy and will keep you apprised of new developments.

Other antiviral agents of possible use are foscarnet (Foscavir) and ganciclovir (Cytovene), both entailing intravenous treatment. In October of 1998, The Boston Globe reported on Dr. Joseph Brewer's success on one 33-year-old Missouri HHV-6 patient with twice-daily intravenous infusions of ganciclovir. Dr. Brewer hopes to publish his treatment findings in the future.

As for orally administered antiviral medications, Dr. Knox explains that while acyclovir (Valtrex) may be less potent, it is capable of preventing reactivation of HHV-6 in transplant patients. Since the antiviral drug Lobucavir, still in FDA approved patient trials, seems to help against HHV-6's cousin, cytomegalovirus, it is theorized it would work on HHV-6 as well.

Dr. Knox also conjectures that the best treatment of HHV-6 may be a combination of antiviral and beta interferon drugs such as Avonex and Betaferon, presently the most effective treatments used in MS therapy. The HerpesVirus Diagnostic Internet site further notes that ampligen has been found to inhibit HHV-6 replication in laboratory studies. This correlates with previous studies showing ampligen's benefits in CFIDS patients.

This news of a treatable cause of CFIDS provides a ray of hope in what for many has been a long dark tunnel. Further laboratory and patient studies will shed even more light both on the role of HHV-6 in the suffering of CFIDS patients, and more importantly, on how to gain relief from the symptoms associated with this pernicious virus.

Drugs noted above:
• acyclovir (Valtrex)
• Ampligen
• Avonex
• Betaferon
• foscarnet (Foscavir)
• ganciclovir (Cytovene)
• HHV-6 specific transfer factor
• Lobucavir

Human Herpesvirus 6 Variant A (HHV-6A)
– How it May Relate to CFIDS
http://www.immunesupport.com/healthwatch/wtr98/98wtr006.cfm
by Alan M. Cochetto

... Most physicians are knowledgeable about the virus traditionally known as HHV-6.
Human herpes virus 6 causes the childhood disease roseola infantum, also known as exanthem subitum.
This disease is characterized by high fevers and skin rashes.

In 1986, Dr. Robert Gallo and his research team at the National Cancer Institute discovered a virus that was named HBLV- the Human B-cell Lymphotropic Virus. The virus was isolated from the peripheral blood leukocytes from patient samples.

In 1991, the National Institutes of Health broke HHV-6 into two viral classifications.
Their findings provided evidence for the existence of two distinct classes of viruses previously classified as HHV-6. The first, known as HHV-6A, is the former HBLV, while the second, HHV-6B is the former HHV-6, roseola infantum. As you can imagine, this has caused much confusion among physicians who are not familiar with these new classifications. HHV-6A is associated with the U1102 and GS virus strains and HHV-6B with the Z29 strain. It's worth noting that knowing these different strains can help the reader discern whether variant A or B is being discussed in medical journal articles. ...

With assistance from my primary care physician, Dr. Edward Jordan, I got tested in November of 1996. My hunches proved correct: I tested positive for HHV-6A. As it happened , I was the first person tested by this new serology method. The test, which will be commercially available by the time this goes to print, is being offered by Herpesvirus Diagnostics Inc., of Greenfield, Wisconsin.

This laboratory is operated by Dr. Konstance Knox and Dr. Donald Carrigan, pathologists formerly associated with the Medical College of Wisconsin who have published frequently in peer-reviewed medical journals. Interested patients may have their physicians contact Herpesvirus Diagnostics Inc. at (414) 529-3780 for more information about HHV-6A serology testing. ...

It is my belief that those diagnosed with CFIDS, but have HHV-6A, are in fact fighting a serious persistent viral infection. I have been tested several times now for HHV-6A and even after antiviral therapy, I continue to be positive for the virus. This indicates a persistent infection-- one that my body cannot clear. HHV-6A is known to be a cytopathic pathogen with a powerful ability to infect and kill cells. According to Dr. Robert Gallo and Dr. Paulo Lusso, HHV-6A is emerging as a virus that can directly infect or interfere with the function of several elements of the immune system including CD4 and CD8 T-cells, NK-cells, some B-cells, and mononuclear phagocytes.

As to current diagnostic treatments, physicians, have used ganciclovir and foscarnet. Since these require invasive procedures, physicians have also turned to oral drugs such as acyclovir and valacyclovir. However, these are only effective against certain strains of the virus. I must also mention that Dr. Dharam Ablashi reports that HHV-6A strain GS is the type most commonly detected in patients with CFIDS, AIDS, and other immunocompromised conditions. He states that ampligen is one drug that assists in inhibiting this virus. Since it is known that ampligen is an alpha interferon inducer, perhaps this, coupled with the body's own production of alpha interferon, provides one mechanism to reduce the HHV-6A viral load.

Kutapressin for Chronic Fatigue Syndrome
D.V. Ablashi, Z. Berneman, C. Lawyer and A. Komaroff
National Cancer Institute, Bethesda, Maryland;
Georgetown University School of Medicine, Washington, DC;
Private Practice, Mequon, Wisconsin; Div General Medicine,
Brigham and Woman's Hospital and Harvard University, Boston, Massachusetts

Clinical Infectious Diseases 1994; 18 (S-1):S113

Kutapressin (KU:
Schwarz Pharma, Milwaukee, WI) is a prescription drug consisting of processed extract from porcine livers that contains peptides; it has been used in the treatment of patients with herpes zoster, keloids, seborrhea, other skin diseases and neurasthenia.

More recently, results of uncontrolled studies have indicated that treatment with KU results in abatement of symptoms of many patients with chronic fatigue syndrome (CFS). One large study found evidence of reactivation of human herpesvirus type 6 (HHV-6) in many patients with CFS. Moreover, HHV-6 DNA was detected by southern blot analysis in lymphocytes from patients with CFS. Because treatments with KU may have positive clinical effects on patients with CFS and the evidence that CFS is associated with reactivation of HHV-6, we investigated the possibility that KU might have direct activity against HHV-6.

KU that was free of phenol was dissolved in tissue culture medium (RPMI 1640 supplemented with 10% fetal calf serum and antibiotics) for in vitro studies. A human T lymphocyte cell line (HSB-2) was infected with HHV-6.

KU blocked HHV-6 (variant A, GS strain) infection of HSB-2 cells most effectively at doses of 300 and 500 ug/mL. These doses of the drug were not toxic to the cells. Inhibition of HHV-6 infection (1,000 TCID50) was most effective (>96%) when cells (>106/mL) were pretreated with KU overnight, prior to viral infection, and then were maintained in the presence of KU throughout the experiment (14 days after infection).

In addition, inhibition (>80%) of HHV-6 infection was observed when HSB-2 cells were first infected with 1,000 TCID50 of HHV-6 and were then maintained in the presence of 300- and 500- ug doses of KU. When 300 and 500 ug/mL doses of KU were added to cells 3 days after the start of infection with HHV-6, it inhibited only 22% and 33% of viral infection, respectively. When the cells were simultaneously treated with virus and 300 and 500 ug/mL of KU, ~90% of HHV-6 infection was inhibited.

These data show that KU is a potent inhibitor of HHV-6 infection.
Although the mechanism of HHV-6 inhibition by KU is under investigation, electron microscopic examination of cells treated with KU prior to HHV-6 infection revealed abundant extracellular virus particles, which suggests inhibition of viral attachment and penetration.

Herpes simplex virus Research
http://darwin.bio.uci.edu/~faculty/wagner/movieindex.html
Dr. Edward K. Wagner
Herpesvirus Animations