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Triggering Agents/Factors for CFS

Triggering agents/factors for CFS: While early studies of CFS sought to identify a single agent that caused the illness, most researchers now appear to agree that CFS can be “triggered” by a number of different insults including microorganisms (bacteria, viruses, etc.), environmental exposures and severe injuries (such as closed head trauma). At this conference, researchers reported data on a number of agents that set off a CFS-like illness. Here is a list of the agents explored by researchers who gave presentations:

Giardia lambia (Eva Stormorken, RN, University of Oslo, Norway)
Coxiella burnetii (Andrew Lloyd, MD, University of New South Wales, Australia)
Parvovirus B19 (Jonathan Kerr, MD, PhD, St. George’s University of London, England)
Parvovirus B19 and herpesviruses (Kenny DeMeirleir, MD, PhD, University of Brussels, Belgium)
Mammalian viruses (Judy Mikovits, PhD, Whittemore Peterson Institute, USA)
HHV-6 and -7 (Modra Murovska, MD, PHD, Riga Stradins University, Latvia)
Epstein-Barr virus (EBV), CMV and HHV-6 (Barbara Cameron, PhD, University of New South Wales, Australia)
Enteroviruses, EBV, Chlamydia pneumoniae, coxiella burnetii and parvovirus B19 (Lihan Zhang, St. George’s University of London, England)

source: http://www.cfids.org/cfidslink/2009/040102.asp
4 Responses
Avatar universal
This is great info Platelet! Thanks for taking the time to post!
Avatar universal

You bet !  It seems like PATHOGENS are the culprit in many neurodegenerative and even autoimmune diseases.
810264 tn?1239174497
take a look at this

To Whom It May Concern:

Attached to this letter is a copy of the protocol we have followed at Stanford for identifying and treating patients with chronic fatigue syndrome (CFS) likely to have a viral etiology. Also attached is the abstract of our published paper reporting our experience with open-label usage of this drug.  We have attached these documents for your informational uses only.  Although our initial results have been promising, use of Valganciclovir for this indication has not been approved by the FDA and we cannot recommend using the drug outside clinical trials.

In addition, due to the large volume of patient requests we cannot and will not offer unsolicited medical advice to individual patients at this time.  

We are working very hard to confirm our initial success with this treatment in our current randomized, double-blind placebo-controlled study and hope to publish our results in 2008.  Please visit our study website at www.vicd.info as well as http://clinicaltrials.gov/ct/show/NCT00478465 for more information.

Sincerely,



Jose G. Montoya, MD
Associate Professor of Medicine
Department of Medicine
Associate Chief for Clinical Affairs
Division of Infectious Diseases and Geographic Medicine
Stanford University School of Medicine

Stanford protocol used for patients with elevated titers against Human herpes virus 6 (HHV-6) and Epstein-Barr virus (EBV) who are experiencing chronic fatigue syndrome

1. Before prescribing Valcyte, the full package insert should be reviewed by the prescribing physician.

2. Patients should not have a history of allergic reaction to ganciclovir or valganciclovir.

3. Patients should not be taking other potentially bone marrow toxic drugs (e.g. trimethoprim, sulfamethoxazole or other drugs with the same potential).

4. Patients should have normal renal function and normal liver function. For patients with abnormal renal function, please see package insert for dosage adjustments.

5. The recommended INDUCTION dose in patients with normal renal function is 900 milligrams (mg) orally twice a day for 21 days.

6. The MAINTENANCE dose is 900 mg orally once daily (Prod Info Valcyte(TM), 2003b) to complete 6 months of Rx. Valganciclovir should be taken with food.

7. Obtain baseline CBC with platelet count, creatinine and liver function tests.

8. Follow CBC with platelet count once a week for four weeks and then every month until month 6.

9. Follow LFT’s every month for 6 months.

Inclusion and Exclusion Criteria Used In Our Current Randomized, Double-Blind, Placebo-Controlled Study

Inclusion criteria:
1. Adult patients (≥ 18 years old).
2. Patient understands treatment protocol and possible side effects.
3. Patients who meet the clinical criteria for the diagnosis of chronic fatigue syndrome as established by the International Chronic Fatigue Syndrome Study Group in 1994.
4. Patients who had a “viral onset” for their CFS.
5. Patients whose CFS symptoms are not spontaneously improving and have plateau for at least 6 months.
6. Patients with “high” antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
7. Patient agrees to utilize two reliable methods of contraception combined throughout the study period and for 90 days following discontinuation of the valganciclovir.
8. Females of childbearing potential will have a negative pregnancy test before beginning treatment.

Exclusion Criteria:
1. Patients who are found to have alternate medical and/or psychiatric causes for their fatigue (see guidelines established by the International Chronic Fatigue Syndrome Study Group in 1994 [1].
2. Patients with history of major depression with psychotic or melancholic features before the diagnosis of CFS or who are found to be actively depressed (major depression with psychotic or melancholic features) by the depression instrument used for the study (Hamilton-D and SCID) and by a medical evaluation by a psychiatrist.
3. Patients with other serious co-morbidities..
4. Patients with history of substance abuse in the past year (excluding nicotine and caffeine) or positive urine test for substance abuse.
5. Patients with any other known chronic viral or bacterial infection for which other treatment(s) is(are) available
6. Patients with an active concurrent acute infection
7. Patients with abnormal creatinine clearance (≤60ml/min)
8. Patients with ANC ≤1500 /mm3
9. Patients with Hb ≤ 10 g/dl
10. Patients with platelet count ≤ 100 000/mm3
11. Previous hypersensitivity or contraindication to Valganciclovir/ganciclovir
12. Patients taking other antiviral medications or who have received antiviral medications within the previous three months
13. Patients receiving other experimental therapy
14. Patient requires the use of any prohibited concomitant medications (see Insert on VALCYTE prescribing information).
15. Women in childbearing age considering getting pregnant during the treatment.
16. Patient is a lactating female who will not discontinue nursing prior to treatment.

Journal of Clinical Virology 37 Suppl. 1 (2006) S33–S38

Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein−Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue

Kogelnik AM, Loomis K, Hoegh-Petersen M, Rosso F, Hischier C, Montoya JG.

Abstract

Background: Twelve patients with long-standing symptoms of central nervous system (CNS) dysfunction were found to have elevated antibody titres to human herpesvirus-6 (HHV-6) and Epstein–Barr virus (EBV). All patients had four or more of the following neurocognitive symptoms: impaired cognitive functioning, slowed processing speed, sleep disturbance, short-term memory deficit, fatigue and symptoms consistent with depression.
Objectives: We sought to determine whether elevated antibodies to EBV and HHV-6 indicated chronic viral activation in patients with CNS dysfunction and if their symptoms could be improved by suppressing viral activity with oral valganciclovir.
Study design: Patients with high IgG antibody titers against HHV-6 and EBV who were suffering from central nervous system dysfunction and debilitating fatigue for more than one year (median 3 years, range 1−8 years) were treated with 6 months of valganciclovir in an open label study.
Results: Nine out of 12 (75%) patients experienced near resolution of their symptoms, allowing them all to return to the workforce or full time activites. In the nine patients with a symptomatic response to treatment, EBV VCA IgG titers dropped from 1:2560 to 1:640 ( p = 0.008) and HHV-6 IgG titers dropped from a median value of 1:1280 to 1:320 ( p = 0.271). Clinically significant hematological toxicity or serious adverse events were not observed among the 12 patients.
Conclusion: These preliminary clinical and laboratory observations merit additional studies to establish whether this clinical response is mediated by an antiviral effect of the drug, indirectly via immunomodulation or by placebo effect.

Avatar universal

Valcyte is certainly a consideration for people who have severe Chronic Fatigue Syndrome. I certainly support anyone who chooses any route which works for them, but I'll be honest and say that I have concerns about Valcyte.

My concerns are this: an estimated two-thirds of CFS patients have bacterial infections. If you take an antiviral drug, that will suppress the immune system... I would think that years later, these patients will have a major relapse because of the bacterial infection that wasn't addressed. My other concern is that Valcyte is a very, very powerful drug. I read online a post from a lady who claimed that she was on one of the Valcyte studies and she became even sicker after the treatment. I know that one CFS expert was recommending Valcyte only for people who were disabled. I am interested in reading more about Montoya's second trial.... but I really do have concerns about these people relapsing. These antiviral drugs suppress the immune system.


sources:

http://www.immed.org (click on fatigue illness)

http://www.medicinenet.com/valganciclovir-_oral/article.htm  (about Valcyte)

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