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    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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Search results

  1. D

    Dr David Tuller: My Follow-up Letter to Mahana Therapeutics’ CEO

    David, suggest that they employ CBT in the treatment of leukemia !!! The CBT approach as the prime therapy in ME CFS is reckless We are attacking the insomnia problem in ME CFS . 78% of our patients suffer from unrestorative sleep, we are setting up a study using CBD DEREK ENLANDER MD
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    Where to buy GcMAF (KDM’s patient)?

    GcMAF is not available in New York , we have substituted MAF878 which is a probiotic series which replicates in Yoghurt or agar solution to produce an activating factor. I think it is available in London also.
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    MAF 878 Available - Anyone already using it?

    Easy preparation...new version takes 3 days to replicate in yoghurt (or in Agar solution for those lactose intolerant)
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    MAF 878 Available - Anyone already using it?

    I do not use Facebook much so I am not aware or the MAF 878 comment on Facebook. MAF 878 if a probiotic series that when the probiotic replicate a activating factor is produced.
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    Immune system treatment of the methylation cycle

    yes we realize that ME CFS is multisystem, and patients have GI symptoms, Dr Chia has studied this in depth. Chronic constipation is a problem in some patients, it should be treated. Other patients have the reverse problem , diarrhea which indeed can cause problems including dehydration. MAF878...
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    Immune system treatment of the methylation cycle

    did you contact Jonathan in South America? The St Georges Hospital were disgusting when they refused to give him tenure. Basically taking his job away, I offered him a job at Mount Sinai in New York.
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    Immune system treatment of the methylation cycle

    We are in the process of expanding the methylation cycle research, deriving patients who have and have not a genetic MTHFr mutation. The supplement protocol for both groups is slightly different. Patients will use the supplements based on Rich van Konynenburg protocol . Patients will be obtain...
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    ME Association Ramsay Research Fund invests in new study to examine dysfunctional immune system

    good news, we believe that the immune system is afflicted in ME CFS. We have shown that the natural killer (NK) T cells , the macrophages, are reduced in number and in function. Controversial research by Yamimoto in the 1990's suggested Macrophage Activating Factor (MAF) acted positively on...
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    1:16 titer for Coxsackie B; should I be concerned?

    Past exposure of viruses are frequently seen in ME CFS. Most commonly the five viruses that have been studied in ME CFS are EBV, HHV6, CMV, Coxsackie B, and Parvo B19. Historically coxsackie virus was considered by Dr Melvin Ramsay as the possible cause of ME in 1955 when he used the term...
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    Rich Vank's Simplified Methylation Protocol Poll

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    Immune system treatment of the methylation cycle

    We have believed for many years that ME CFS is related to an immune system dysfunction. We worked with the Late Rich van Konynenburg on the methylation cycle the work suggests a supplement protocol which also addresses MTHFr genetic abnormalities seen in our work with Jonathan Kerr many years...
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    Virus titer results from Dr. Chia... what does it mean?

    the tests show prior exposure to the viruses which in turn afflict the immune system Derek Enlander MD
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    Are you totally convinced you have CFS?

    have you doctor test the immune system and five common viruses Natural Killer cells (NK cells) T cells.... CD 4 and CD 8 Viruses... EBV, HHV6, CMV, Coxsackie B. and Parvovirus ( the virus tests may show prior exposure which then afflicted the immune system) Derek Enlander MD
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    Just got diagnosed.

    The late DR Lerner , a physician not a psychologist used Valtrex as a treatment for many years. Some patients were helped. We were unable to reproduce Dr Lerner's results but the side effects are minimal if the patient is not allergic. The thought is that valtrex may combat a virus that is...
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    Northern Ireland neurologist(Dr Watt) under investigation

    The work at the ME CFS centre at Mount Sinai New York Continues, we believe thatME CFS is an immune system dysfunction. The late Rich van Konynenburg spoke at a conference which I chaired and related some of the immune system methylation cycle abnormalities. We developed a supplement protocol to...
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    The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS

    very exciting, fits with the thinking that the epigenic tag on DNA is related to the methylation cycle which we believe is dysfunctional in ME CFS Derek Enlander MD
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    Confused about Lyme

    The bacteria Borrelia Burgdorfi is a spirochete treatable for at least three by oral doxicycline or if that does not work by intravenous rocephin. Try and find a receptive physician to prescribe treatment. Then we would proceed to other approaches or diagnoses. Side effects of doxicycline are...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    It is clear that your surgery was not Chiari surgery but vertebral fusion. Not every case of ME CFS has vertebral instability, obviously this possibility should be examined, most physicians are unaware of the instability.
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    LDN is an immunomodulator; should it be pulsed?

    WE Use Hepapressin which seems to act well on the methylation cycle in the immune system Derek Enlander MD
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    Help with reading results

    the EBV Titers suggest past exposure retest EBV IgM which tests for acute infection also test for other ME CFS related Virus HHV6, COXSACKIE B, Parvo B19, CMV T Cell subset CD 4 , CD 8, NK (NATURAL KILLER) CELLS Serum AMINO ACID TAURINE the focus is to derive viral exposure, methylation...
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    Was my advice good advice?

    I am frequently asked about whether a patient should or should not go to a family or friends party because they will suffer thr next day or there after. My advice is ,if they can, go and enjoy the party. We know there may be consequences later, however balance the little enjoyment with the PEM...
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    PACE trial funding: FoI requests

    Did the insurance companies and disablity insurers contribute?
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    PACE trial funding: FoI requests

    Did the insurance companies and disablity insurers contribute?
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    Northern Ireland neurologist(Dr Watt) under investigation

    As a Belfast native now practicing in New York with an interest in ME CFS I am saddened by this news. However ME CFS has been "overlooked" by the Ulster authorities for many years, I seem to remember patients were referred to an ME CFS center at the City Hospital . The ME CFS center was at the...
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    Anyone have a copy of Gupta or DNRS they'ed like to sell?

    ME CFS is a physical condition, probably affecting the methylation cycle and the Macrophage maturation in the immune system. Is there secondary depression in the condition..... yes, but it does not cause the problem. CBT and these other methods are portrayed to "cure the imagined problem"...
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    what was the outcome of the surgery? I hope it was successful. It should be noted that the surgery is not performed routinely in ME CFS and is applicable to a particular abnormality in the skull and cervical vertabrae
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    The Chiari syndrome was in vogue about 10 years ago, when patients were advised by a neurosurgeon that the brain was herniating through the foramen magnum, the "hole" in the skull allowing the brain to make contact the spinal cord . The surgery was NOT minor, it involved enlarging the foramen...
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    David Tuller: My brief encounter with Prof Crawley

    What lab is doing these
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    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    The cytokine study confirms work by Nancy Klimas and adds support to the theory that there is an Immune dysfunction in ME CFS. There is still the unknown problem...... what causes the dysfunction? is it a virus, is it genetic predisposition, is it a combination of both? We are working on this
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    Scientists trade insults over ME (JHP special issue)

    Even if you take the PACE research as a proper scientific study, which i question, the results published by the authors do NOT show impressive positive results. The results are marginal at best. This should suggest major questions about the trial and the imposed treatment.