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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Potential biomedical cures and hope

Discussion in 'General Treatment' started by Jesse2233, Jun 8, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

    Southern California
    Bed bound recovery stories like Mike Dessin, Julie Rehmeyer, Joey Tuan, and others on this fourm show us the damage is not permanent even if it affects the brain and CNS (and even if those patients later relapse).


    Hey everyone,

    I'm relatively new here so I make this thread with humility and respect for those suffering a long time. I've been feeling down lately and I've noticed a lot of other people feeling the same. So I wanted to put together all the potential biomedical treatments / cures that give me hope in the desire that others will benefit as well, and invite anyone else to add on with anything I've overlooked.

    I'll start with some broad trends, then focus on specific treatments, and close with a heartening real world example.
    1. Research. There is now more research than ever before. NIH funding has doubled. Prominent new researchers are coming into the field. And a very talented group of world class scientists and doctors are assembling at OMF in Palo Alto, California. Yes more funding is needed, but the momentum is very positive.

    2. Advocacy. Jen Brea, Congressional briefings, NIH, the demise of PACE are the headlines here as well as all the other advocacy groups building steam. This wasn't true several years ago.

    3. Broad scientific and medical advancement. There are new medical and scientific breakthroughs happening at an increasing rate. Broader trends abound as well: big data, precision medicine, gene therapy, stem cells, nano technology, metabolomics are just a few examples of ways humanity is galloping toward a brighter future with less suffering and more cures for complex and poorly understood diseases.

      One example: gene therapy can now cure leukemia and sickle cell.

    Now on to the tangible treatments and cures:
    1. A pathway for existing drugs.

      may pick up steam in Argentina and Europe demonstrating to the new (more lenient) FDA it's effectiveness for the post-viral cohort. Remember that Ampligen has brought about bed bound recoveries for many, including members of this forum.

      is looking likely to clear Phase 3 in Norway which means big money for Genentech and an option for the autoimmune cohort. Yes there is mixed anecdotal evidence for RTX in the US, but remember it has created long term remission for at least 5 Fluge / Mella patients with CCC diagnosis.

      There are other monoclonal antibodies that may also prove effective such as Bortezomib and Tocilizumab or immunosuppressants such as Cyclophosphamide and Rapamune. Additionally HSCT is becoming safer and more refined as an almost total cure for many autoimmune diseases.

      The African sleeping sickness drug Suramin showed promising results in a pilot autism trial and may soon end up treating ME/CFS metabolic pathology at its core.

      Ron Davis is using his impedance assay to test every FDA approved drug (the assay is also a potential biomarker). There are drugs like Suramin out there that have never been tried before. And given the success of Rituximab for some of the autoimmune cohort there is great reason to believe some of these drugs will be beneficial.

      A huge amount of research and focus is being done on microbiota. Refinements in fecal matter transplants and probiotics are occurring rapidly.

    2. New drugs on the horizon

      There are new, better monoclonal antibodies being developed that can precisely target aberrant auto-antibodies while leaving the rest of the immune system in tact.

      On the antiviral side, drugs like DRACO are being developed to eradicate all viruses. Shorter term, a team in Rega, Belgium is working on a chronic enterovirus cure codenamed Compound 17 that is already eradicating Coxsackie B4 from the brains and organs of mice without major side effects.

      Jarred Younger is working on a new version of LDN that can be taken at higher doses and bring down microglial inflammation (brain fog / fatigue) to an even greater degree.

      And a precision nutrient delivery system called Endotherapia for hard to treat long standing illnesses is being developed in France.

    This may all sound abstract. What would a cure (or excellent treatment) really look like and is such a concept possible? Yes and we don't have to go all the way back to Penicillin. Let's look at the amazing example of a drug called Sofosbuvir (aka Harvoni).

    For decades certain strains of Hepatitis C (a chronic virus in some ways similar to enteroviruses such as CVB and herpes family viruses such as EBV and CMV) had no cure or good treatment. People would often suffer devastating symptoms including organ failure, fatigue, weight-loss, jaundice, and cognitive impairment. Additionally hundreds of thousands would die each year. Treatments weren't great and had very bad side effects.

    Then sofosbuvir came along, with a total cure rate of 90%. This may still sound abstract, so let's look at actual patient reports:




    These are real people freed after years (or in some cases decades) of suffering. Dr John Chia thinks the aforementioned Rega Compound 17 will be much like Sofosbuvir.


    There is hope, and it's real

    Attached Files:

    Last edited: Jun 8, 2017
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  2. sjaakafhaak


    Yes, definitely more hope, but it's a marathon. But as they say, we overestimate what we achieve in 2 years, but we underestimate what is achieved in 10. It will be a different world by then.
    MEMum, Jesse2233 and keenly like this.
  3. knackers323

    knackers323 Senior Member

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  4. AdamS

    AdamS Senior Member

    I know it's extremely hard not to be down almost 24/7 with this illness @Jesse2233 but you're one of the most proactive people i've ever spoken to, I find your ideas/contributions to this forum very interesting, keep going! Thanks for putting this thread together :)
    Aroa, eric_gladiator, MEMum and 4 others like this.
  5. Jesse2233

    Jesse2233 Senior Member

    Southern California
    Mold avoidance
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  6. Hip

    Hip Senior Member

    As we know, ME/CFS is an awful illness, and so ME/CFS patients tend to think that when their mood drops, or they start to get some depression, this is a result of their life circumstances. But that may not be the real cause: many neurological diseases are known to cause depression by neurological mechanisms (rather than life circumstances / psychogenic factors).

    Thats not surprising really, given how neurological illnesses can affect the neurochemistry of the brain. So if the low mood is caused by the illness affecting brain chemistry, you may want to consider taking some supplements that have mood boosting, antidepressant effects, such as:
    • 5-HTP 100 mg
    • High dose inositol (1 or 2 heaped teaspoons daily)
    • Spanish saffron 100 mg (several studies have found saffron to be as potent as antidepressant drugs such as Prozac)
    • Amantadine 25 to 50 mg is a antidepressant and antiviral drug that is often of benefit in ME/CFS (at low doses no higher than 50 mg). 1
    I personally find that the methylation protocol supplements B12 methylcobalamin and folinic acid have antidepressant effects (although unfortunately they don't seem to help my ME/CFS symptoms).
    Last edited: Jun 9, 2017
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  7. Murph

    Murph :)

    Ive found st John's Wort can be a good mood enhancer. It has been shown in (some) clinical trials to be as effective as normal medicines for depression and there are some signs it can work on anxiety too. It's cheap and has a moderate side effect profile.

    Mayo Clinic:
    "Human research suggests that St. John's wort is more effective than placebo and equally as effective as TCAs and SSRIs in the short-term for mild-to-moderate depression. Although St. John's wort has been shown to have fewer side effects than SSRIs, it should be used with caution and guidance of a medical professional."
    Jennifer J, Hip and Jesse2233 like this.
  8. Joe Smoe

    Joe Smoe

    @Jesse2233 Jesse whats good my dude. Add Sirolimus to this list. It's your boy from the Queensbridge Houses. RIP Prodigy. Good to be here.
    Jesse2233 likes this.

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