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  1. M

    INIM (NSU Institute for Neuro-immuneMedicine) webinar - 'Understanding ME/CFS Today: A Clinical & Research Approach' May 2020

    I don’t even want to watch it. Also, environmental approach- geez. If environmental doctors do not even touch the most ‘environmentally-related diseases’, why is it that ‘some’ doctors claim ME and FM are environmental illnesses? It simply stigmatizes these diseases further. When sick with ME...
  2. M

    Patient's experiences and effects of non-pharmacological treatment for ME/CFS - a scoping mixed method review - 2020 - Mengshoel et al

    I am not bothering to read the paper, but I have a comment on non-pharmacologic treatments of illnesses in general. What is considered non-pharmacologic? Physiotherapy, CBT, alternative medicines, supplements, coping, that sort of thing. Would these modalities be recommended as main treatment of...
  3. M

    Tenofovir prodrugs potently inhibit Epstein–Barr virus lytic DNA replication by targeting the viral DNA polymerase

    Note: these are in vitro tests, and not tested in humans as of yet for the effect they have mentioned, autoimmune disease and oncology.
  4. M

    Tenofovir prodrugs potently inhibit Epstein–Barr virus lytic DNA replication by targeting the viral DNA polymerase

    Significance Epstein–Barr virus (EBV)-associated diseases represent a major cause of morbidity worldwide, accounting for at least 1.5% of the global cancer burden, and contributing to autoimmunity. Viral reactivation from latency is associated with an increased risk of EBV-driven cancers, and...
  5. M

    Has anybody with ME not contracted Covid-19 even when a household member has had it (or is suspected to have had it)

    From my understanding with ME is that for several years the immune system is hyper-activated and you don’t get colds and flus. Until it crashes and then you are susceptible to said cold and flus. i got a really bad flu last year,crhe second time i got such flu in my life. Fevers and rigors for...
  6. M

    Judy Mikovits

    CNN has a full segment on this. They have not named her by name, just showed pictures.
  7. M

    Judy Mikovits

    Man, that is bat sh*t crazy.
  8. M

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    You make an important Point, what does ‘improvement’ mean? Also, what significance does it have research wise? What conclusions can we make? We still do not have an understanding of what ME is. We do not have a biomarker. We are not absolutely certain that the cohort is homogenous. From your...
  9. M

    United Kingdom: Optimum Health Clinic (Alex Howard)

    Eeeek. That stinks. Unfortunately, quacks seems prolific in convincing desperate patients that they will get better, though their wallet will be lighter.
  10. M

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    There is more serious adverse events involved with Cyclophosphamide, notably the neutropenia which makes patients vulnerable to all kinds of opportunistic infections, which can be deadly. It is not a casual drug and i know Jonathan that you know that, something that can be difficult to grasp for...
  11. M

    New Research Studies Posted at CFS/ME Registry

    The website link from post 1 does not seem to work. Anybody has access to the correct link to the registry? thanks!
  12. M

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    Correct, already on the market, but indicated for other diseases, most of it being cancer. You still have to test safety in the ME population, the ideal dosage, the regimen, the effectiveness, against a placebo, and insuring a representative patient population. Then you need to factor in that...
  13. M

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    It take in average 17 years to put a drug on the market- this includes all trial phases, testing for efficacy and safety. These studies are necessary and should be done rigorously. It’s difficult (and expensive) in the best of example to put a drug on the market. Consider level of...
  14. M

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    1) Agreed with extreme caution in not seeking this drug outside of clinical trial and without close supervision of a physician knowledgeable with this particular drug. 2) With all chemotherapies, there is a chance of contracting other cancers such as leukemia or lymphomas, not just bladder...
  15. M

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in ME/CFS - 2020 - Schreiner

    Interesting that such study has been done. My muscle biopsy performed within 3 years of onset showed slow-twitch fibre atrophy, which is type 1 and not type 2 as the quoted study found. Though muscle biopsy is invasive and not that pleasant, in my view we would gain knowledge by studying a...
  16. M

    The iatrogenic power of labeling MUS: A critical review and meta-analysis of “diagnosis threat” in mild head injury, 2020, Niesten et al

    "Damn patients don't want to get better" (quote from Pace Trial worker) How horrible that all patients with symptoms that affect the quality of their lives are vilified and presumed to be malingering and exaggerating their symptoms.
  17. M

    CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

    How about playing music for all the folks getting cover? :rolleyes::rolleyes::rolleyes: Force em in rehab and impose group CBT to learn about unhelpful beliefs and definitely not listening to your body because the message you get from your brain are not always correct :banghead: and yes folks...
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