Newsletter | About Us | Contact Us | Donate | Repository, CFS patients with ciHHV-6 may benefit from antiviral treatment. Journal of Medical Virology 2013;85:2101–2109. After much trial and error we found that he could tolerate a very watered down Crossfit workout if he stopped every few minutes, sat and did deep breathing, and drank an electrolyte drink such as Pedialight/Gatoraide. In addition he had lost body hair and the outside of his eyebrows similar to a person who had hypothyroidism. Researchers compared their effectiveness and safety in 53 people with MS-associated fatigue in a clinical trial (IRCT20120215009014N250). “The good news reported in our study is that antiviral drugs improve the severe neurological symptoms, including chronic pain and long-term fatigue, suffered by a certain group of patients with CFS,” said Dr. Medveczky, who is a USF Health professor of molecular medicine and the study’s principal investigator. HHV-6 Foundation | 1482 East Valley Road, Suite 619 | Santa Barbara, CA, 93108 | Toll Free: (888) 530-6726, HHV-6B lung infection doubles the mortality rate of transplant patients with respiratory disease, HHV-6A (but not HHV-6B) linked to increased risk of multiple sclerosis, New recommendations for HHV-6 encephalitis from Japan, Antiviral use in transplant patients with HHV-6 encephalitis, More about foscarnet, ganciclovir and cidovofir, iciHHV-6 may modulate human gene expression, Multiplex FilmArray Meningitis/Encephalitis assay is useful for diagnosing HHV-6 encephalitis, One step closer to understanding HHV-6A/B chromosomal integration, Patients with iciHHV-6 have higher inflammatory cytokines and develop acute graft vs host disease a week earlier, Spontaneous gene expression in iciHHV-6A/B individuals leads to increased HHV-6 IE-1A/B and CMV antibody response; higher levels of RNA were found in iciHHV-6A brains, Genomic analysis finds a surprising association between ciHHV-6 and two genes, Apparent activation of ciHHV-6 in response to HDACi cancer drug vorinostat, Ancient iciHHV-6 genomes vary considerably from community strains, but still capable of reactivation, Inherited ciHHV-6 increases risk of developing acute GVHD and CMV in transplant patients, In Japan, inherited ciHHV-6A likely derived from common ancestor, Blood virome sequencing reveals new data on roseolovirus prevalence and epidemiology, Multiple herpesvirus infections lead to telomere shortening, New cell culture system established to study HHV-6A/B chromosomal integration, A more efficient form of latency? “Brain fog”: cognitive impairment, including low grade confusion and memory loss. Importantly, HHV-6B positive patients who were treated with an antiviral had a 60% lower risk of death. It is difficult for me to contrast what appears to be science in the main subject of the article with the suspect results of the PACE study. After managing to secure some money from the NIH, researchers at DePaul University, Illinois, are hoping to study 6,000 students at Northwestern University in a bid to see who develops CFS/ME and understand the reasons why. Indeed, both times Anna was given rituximab, she suffered late-onset neutropenia, requiring intravenous antibiotics. One other patient in the open-label rituximab study also experienced late-onset neutropenia and two others an allergic reaction to the drug. DOWNLOAD A SUMMARY OF THE 11TH INTERNATIONAL CONFERENCE. Amantadine is an antiviral therapy that has been suggested for the management of fatigue, although its mechanism of action is not clear. Researchers emphasized that additional studies are needed to validate these findings, and to determine exactly how these medications work to ease fatigue in MS. No votes so far! Of note, the group also found that short-term treatment regimens, even up to three weeks, had little or no impact on the HHV-6 mRNA level. I try my best to speak to as many relevant people as possible, but it's not possible to speak to all relevant people. In fact, there is evidence that GET can be harmful. Radiology 2015;274:517–526. So the team are now testing rituximab in a 24-month double-blind phase III trial with 152 patients across five centres in Norway. Right arcuate fasciculus abnormality in chronic fatigue syndrome. You miss out on everything. Solo DR and non-telomeric chromosomal integration. It was extremely important to keep a diary to make sure work outs increased in weight, repetitions, etc. Rather, Anna had been given rituximab, a monoclonal antibody used to treat lymphoma and rheumatoid arthritis. At first, he wasn’t sure if the improvement was just by chance. On average, there was a 27.4 point improvement on the Short Form-36 (SF-36) physical function score (a scale of 0–100) at 20 months in the open-label trial, and a slight to moderate patient-reported improvement in fatigue score from a baseline of extreme to moderate fatigue. Thank you for your comments, Scott. Across the many specialist CFS/ME centres in the UK, CBT and GET is the mainstay of treatment, because it’s really all that is available along with pharmacological symptom management (table 1). B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. Here Comes the Sun, and It’s All Too Much, How to Feed Your Soul and Find Positivity Amid MS, 3 Things to Do If You’re Freaked Out by Blood Tests. After chemotherapy she experienced major relief of her fatigue symptoms, says Fluge. I began taking an over-the-counter desiccated thyroid supplement that is designed to replace T3, and I have to say I have seen some relief in my symptoms. Investigators at the Fred Hutchinson Cancer Research Center and University of Washington in Seattle found that HHV-6B in lung fluid of bone marrow transplant recipients with pneumonia is associated with a 2-fold increased risk of death. Montoya ordered tests, which revealed that the patient had high levels of antibodies to cytomegalovirus and human herpes virus 6. We need a new trial for people who have a long history of fatigue and an extremely low threshold for exhaustion to see what kinds of movement would be beneficial. The research group, from Norway’s Helse Bergen University, administered intravenous drips to Anna but she showed no improvement and, after 12 months, discovered she was in the placebo arm of the trial. Interesting that you say this, Bobbi. Fluge also takes issue with the fear avoidance theory, saying that “when I see patients improve they are really eager to grip life”. Studies have suggested that both these therapies may be helpful with MS-related fatigue. On a smaller scale, Fluge is collaborating with teams in Berlin, Arizona and London to analyse 200 patient samples for biochemical abnormalities. Microbiome 2016;4:30. doi: 10.1186/s40168-016-0171-4, [5]Fluge Ø, Bruland O, Risa K et al. For more information, read the full paper, and visit the following webpages: The HHV-6 Foundation in a non-profit entity founded to encourage scientific exchange between investigators and to provide pilot grants for promising scientific and clinical research on the under- appreciated viruses HHV-6A and HHV-6B. In collaboration with Columbia University, New York, Montoya is now helping to examine an extensive panel of 51 cytokines. For many patients this can continue for years, if not decades. It’s a waste to eliminate all the B cells, he adds, and eventually he wants to identify the specific antibody. But recent trials of antiviral and immunosuppressant drugs have yielded encouraging results, suggesting a complex disease mechanism at play that researchers are hopeful they might be able to treat. doi: 10.1126/sciadv.1400121, [4]Giloteaux L, Goodrich JK, Walters WA et al. The team followed these patients during treatment, and discovered that the HHV-6 mRNA disappeared by the sixth week of antiviral therapy with valganciclovir, a drug used to treat closely related cytomegalovirus (HHV-5). Low-dose tricyclic antidepressants (e.g. In 2014, a brain imaging study of 15 patients with CFS/ME found distinct differences to 14 healthy controls[2]. “What struck me was how much life this patient had lost,” he says. After a couple of years she sought help from a physiotherapist for her wasting muscles. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Miller argues that “we use CBT and GET in cancer and rheumatoid arthritis as an adjunct for pain control, it’s not because we see this as a mental health condition”. A previous study from the Medveczky laboratory showed that HHV-6 is unique among human herpesviruses; during latency, its DNA integrates into the structures at the end of chromosomes known as telomeres. “Payback”: post exertional malaise defined as worsening of symptoms after excess exertion. It's not uncommon for those with chronic fatigue syndrome (CFS) to consider natural treatments like vitamin B12, ginseng, L-carnitine when working to find a regimen that works. “However, when ranking the severity of fatigue (mild, moderate, severe), fatigue reduction after intervention in the amantadine group was significantly higher than ondansetron.”. He drinks a watered down electrolyte beverage everywhere he is active and he insists this helps him tremendously. In Anna’s case, she experienced mild symptoms from the age of 16 but only began suffering severely after a fever while travelling in India at the age of 21. Patient groups have responded angrily, saying that it implies the disease is psychological and are disputing the data (Queen Mary University of London is currently fighting a freedom of information request for patient level data to be released). PLoS One 2011;6:e26358 doi: 10.1371/journal.pone.0026358, [6]Fluge Ø, Risa K, Lunde S et al. Four and a half months after treatment with rituximab, she too experienced major relief of her symptoms. But larger studies are needed before conclusions can be drawn.