• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. FoxgloveFever

    HHV-6/EBV testing UK? / Remitting symptoms on Molnupiravir?

    Can anyone recommend a private UK clinic that offers testing and treatment for underlying EBV, HHV-6 etc infections? Has anyone else experienced a lessening of ME symptoms after taking Molnupiravir or any other Covid treatment? I've had ME since 2006, varying from mild to severe across the...
  2. gbells

    Request for Help. Maribavir, Artesunate drug pilot trial for ME/CFS patients with a history of EBV, HSV 6/7 with or without CMV

    Attention All ME/CFS patients seeing integrative medicine doctors Maribavir, Artesunate pilot drug trial for patients with a history of EBV, HSV 6/7 with or without CMV There is a new combination drug therapy that may help ME/CFS patients with a history of Epstein Barr virus (EBV) plus Herpes...
  3. SWAlexander

    Epstein-Barr virus reactivation is not causative for post-COVID-19-syndrome in individuals with asymptomatic or mild SARS-CoV-2 disease course

    Abstract Purpose Post-COVID-19-Syndrome (PCS) frequently occurs after an infection with severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2). However, the understanding of causative mechanisms is still limited. Aim of this study was to determine the PCS rate among SARS-CoV-2 seropositive...
  4. X

    Balooning Waist size Help

    Hi forum members, sometime back I had posted on how its been increasingly difficult for me to loose weight being hypothyroid. Well I did manage to loose around 7-8 kgs since than. I was around 106kgs for my 189cms height, and I am currently 98-99kgs. The one main change I made was cutting off...
  5. SWAlexander

    Persistent endothelial dysfunction in post-COVID-19 syndrome and its associations with symptom severity and chronic inflammation

    This is a very long paper. The most important part: Excerpt: Discussion: PCS patients with CFS exhibited a more severely impaired retinal microvascular integrity in our cohort. Even though this association was weaker after controlling for confounders, this aligns with recent findings...
  6. gbells

    HSV-6 EBV superinfection theory for SEID CFS

    First I'd like to say that I'm extremely frustrated at the lack of progress being made in discovering the pathogenesis and effective treatments for SEID (CFS) and now long covid. In my own case, I have a good history of what triggered it. First I contracted EBV then during the convalescent...
  7. SWAlexander

    A new way of thinking and searching

    Hello everybody I was reluctant to report a new and old discovery since many in this forum are low on energy or already overwhelmed with information. Nevertheless I thought, it is important and maybe another way to think about ME/CFS or find one other virus than EBV. Since 2015 I had a hint...
  8. C

    EBV/HHV-6A dUTPases contribute to Myalgic Encephalomyelitis/Chronic-Fatigue-Syndrome pathophysiology by enhancing TFH cell differ... (Cox et al, 2022)

    EBV/HHV-6A dUTPases contribute to Myalgic Encephalomyelitis/Chronic-Fatigue-Syndrome pathophysiology by enhancing TFH cell differentiation and extrafollicular activities Authors Brandon S. Cox, Khaled Alharshawi, Irene Mena-Palomo, William P. Lafuse, Maria E. Ariza Abstract Myalgic...
  9. MarkRichardson

    Negative IgM means no active infection?

    I’m a bit confused. Does having a negative IgM on a blood test for a virus usually rule out an active viral infection? For instance on my EBV blood test I have positive IgG, negative IgM and positive Lytic antigens (T-Cells). I’ve spoken to four different doctors about this, three of them...
  10. Thehealthofholly

    Labs for Epstein-Barr Virus (EBV)

    I’m going to get my labs done again (I have a PCP who will run anything, but does not have specialized knowledge of CFS). Am I missing anything for labs? Should I request anything more specific for EBV? I am 90 percent sure I had a reactivation of Mono this week. Fever, swollen glands, massive...
  11. SWAlexander

    Mast Cell Activation Syndrome (MCAS)

    Mast cells are found throughout the body and play a complex and critical role in immune response and keeping people healthy. However, when these cells become altered or activate inappropriately to specific triggers, they can create symptoms throughout the body. While mast cell activation...
  12. Pyrrhus

    Predictors for Developing Severe ME/CFS following acute EBV (Jason et al., 2022)

    Predictors for Developing Severe ME/CFS following Infectious Mononucleosis (Jason et al., 2022) https://www.rehabiljournal.com/articles/predictors-for-developing-severe-myalgic-encephalomyelitischronic-fatigue-syndrome-following-infectious-mononucleosis.html A study from Lenny Jason that...
  13. RyeRyeBread

    Reactivating EBV v.s. ME Symptoms?

    I'm seeing a new doctor on Wednesday, and I'm trying to prepare for anything he can throw at me (lmao). My [suspected and most likely] ME started with mono, probably EBV, and I'm curious: What are the differences between recurrent/reactivated/chronic epstein-barr and ME? Specifcally the...
  14. godlovesatrier

    [Study] Clonally Expanded B Cells in Multiple Sclerosis Bind EBV EBNA1 and GlialCAM 2022

    https://www.nature.com/articles/s41586-022-04432-7 Having some difficulty extracting the abstract to paste it in. If someone else is able to that would be great. Another fascinating article about multiple sclerosis and EBV. Makes me wonder what equivalent studies could be done for ME if the...
  15. BrightCandle

    Epstein-Barr Virus Found to Trigger Multiple Sclerosis (ScientificAmerican)

    https://www.scientificamerican.com/article/epstein-barr-virus-found-to-trigger-multiple-sclerosis/ I think this is a very interesting finding, EBV is clearly not mostly benign anymore and ME/CFS has some interesting similarities to MS and doctors often struggle to rule it out early on in...
  16. nerd

    Early Growth Response Gene Upregulation in Epstein–Barr Virus (EBV)-Associated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    This isn't the newest study of all but it hasn't been discussed yet and I think it deserves a separate post. It's a review of the existing evidence on latent EBV pathology in CFS/ME. Author: Jonathan Kerr Published: 26 October 2020 doi: 10.3390/biom10111484 Abstract
  17. 2

    Long COVID and severe COVID-19 infections associated with Epstein-Barr virus reactivation

    "“We ran Epstein-Barr virus serological tests on COVID-19 patients at least 90 days after testing positive for SARS-CoV-2 infection, comparing EBV reactivation rates of those with long COVID symptoms to those who never experienced long COVID symptoms,” says lead study author Jeffrey E. Gold of...
  18. nerd

    The immunological inconsistency in the IDO trap theory

    There is one thing in the IDO theory I can't figure out - the inconsistent piece that actually makes me suspect that there is something more complex going on. Here is the story, extending what I wrote in the original IDO post, if you aren't familiar with the Ron Davis research yet. As a...
  19. nerd

    POLL: CC allele in rs9557195

    Considering the causal significance of herpes-viral infections, especially EBV, I'd be interested in the prevalence of the CC allele in CFS/ME patients (10.1111/bph.15395). This SNP determines the EBI 2 expression on lymphocytes and EBI 2 is a key pathogenic post-viral driver, though it...
  20. gbells

    Epstein Barr virus causes megaloblastic anemia (methylation related)

    I was troublesheeting a high MCV on CBC labs and learned that Epstein Barr virus causes it (megaloblastic anemia). It is a deficiency of activated folic acid and activated B12. I am heterozygous for MTHFR deficiency but never had a problem with it before EBV infection in 2008. Post infection...
  21. Pyrrhus

    Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study (Jason et al., 2020)

    A recent, significant, publication from the team of Leonard Jason. What makes this study significant is the fact that they started out with average university students, followed them to see how many of them caught an acute Epstein-Barr Virus (EBV) infection, and then followed those people to...
  22. P

    Role of EZH2 in ME/ CFS and POTS

    Hi, I have been a silent reader of this forum for many years. During the past couple of months, I often had to think about a study from Australia. There, it is said, that POTS (at least in a subgroup) is caused by an epigenetic malfunction of the NE-Transporter. This epigenetic malfunction can...
  23. Murph

    Cytomegalovirus, Epstein-Barr Virus and Human Herpesvirus 6 Infections in ME/CFS

    J Med Virol. 2020 Mar 4. doi: 10.1002/jmv.25744. [Epub ahead of print] Cytomegalovirus, Epstein-Barr Virus and Human Herpesvirus 6 Infections in Patients with Myalgic Еncephalomyelitis/Chronic Fatigue Syndrome. Shikova E1,2, Reshkova V3, Kumanova А1, Raleva S1, Alexandrova D2, Capo N4, Murovska...
  24. pattismith

    Molecular mimicry between Anoctamin 2 and Epstein-Barr virus nuclear antigen 1 associates with multiple sclerosis risk

    Molecular mimicry between Anoctamin 2 and Epstein-Barr virus nuclear antigen 1 associates with multiple sclerosis risk Katarina Tengvall, Jesse Huang, Cecilia Hellström, Patrick Kammer, Martin Biström, Burcu Ayoglu, Izaura Lima Bomfim, Pernilla Stridh, Julia Butt, Nicole Brenner, Angelika...
  25. ShepherdK

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Hu

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Human Herpesvirus Infections Full Text...
  26. PallasKat

    Side effects from Famciclovir ?

    Hello Everyone~ I haven't posted for a LONG TIME. I recently started on Famciclovir after finding out I that I have high levels of EBV. I have had ME/CFS/Fibro for approximately 10 years. I am taking 500 mg daily, it's been about 3 weeks. I am having trouble figuring out if these are actual...
  27. Hip

    Might the Marshall Protocol be an effective treatment for EBV ME/CFS, but not other forms of ME/CFS linked to other viruses?

    The Marshall Protocol devised by Professor Trevor Marshall is designed to treat chronic diseases such as sarcoidosis, ME/CFS and several other illnesses. Trevor Marshall proposed that these diseases are all caused by L-form bacteria which create an intracellular infection inside cells. Trevor...
  28. M

    Help with understanding EBV acute infection antibodies test?!

    Can someone help me understand the purpose of an EBV acute infection antibodies test and also how to interpret it (or point me towards a good resource). I sort of new to this so trying to learn and understand better. The four categories of the test that I have done are EBV Ab VCA, IgM EBV...
  29. gbells

    Giving Infectious Disease MDs one more try (no 3). The Lupus vs SEIDs Saga

    I thought I'd throw this experience out there. Yesterday I drove one hour to a remote infectious disease MD outside of the Raleigh Durham triangle (NC). The MD accepted Medicare (my insurance) and was recommended by a lyme disease group. I had previously seen infectious disease doctors at...
  30. gbells

    SEIDS patients, What viruses have you tested positive for?

    See poll below