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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Poll: What is the next drug / procedure you’d like to see an ME/CFS clinical trial for?

Poll: What is the next drug / procedure you’d like to see an ME/CFS clinical trial for?

  • Suramin

    Votes: 19 44.2%
  • Actemra / Tocilizumab

    Votes: 1 2.3%
  • Rapamycin / Sirolimus / Rapamune

    Votes: 1 2.3%
  • Cosentyx / Secukinumab

    Votes: 0 0.0%
  • Plasmapheresis / Immunoadsorption

    Votes: 3 7.0%
  • Photopheresis / UBI / UVLRx

    Votes: 5 11.6%
  • Ozone autohemotherapy (10 Pass)

    Votes: 1 2.3%
  • Plecenoril

    Votes: 1 2.3%
  • Mifepristone

    Votes: 2 4.7%
  • Autologous stem cell therapy

    Votes: 3 7.0%
  • Metaformin

    Votes: 0 0.0%
  • Vistide / Cidofovir

    Votes: 0 0.0%
  • Dapsone

    Votes: 0 0.0%
  • DCA / Dichloroacetate

    Votes: 0 0.0%
  • Vagus nerve stimulation / anesthetization

    Votes: 1 2.3%
  • ARV / HAART cocktail (Tenofovir / Lamiduvine / Raltegravir)

    Votes: 3 7.0%
  • Bortezomib / Velcade

    Votes: 0 0.0%
  • Dextro-Naltrexone

    Votes: 0 0.0%
  • Xeljanz / Tofacitinib

    Votes: 2 4.7%
  • Mito IV cocktail (Meyers, NAD+, PolyMVA, CoQ10, Aminos, Carnitine)

    Votes: 1 2.3%

  • Total voters
    43

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
RituxME has failed, but many teatments remain to be tested.

Interested to see people’s thoughts. If something isn’t listed feel free to comment below. I’ve tried to keep answer selections in the realm of feasibility (vs something risky like HSCT or infesible like CRISPR editing or organ transplants), and I’ve excluded things that have already had trials trials like Rituximab, IVIG, Ampligen, Interferon alpha / gamma, Valcyte, Hyoerbaric oxygen, Valtrex, LDN, FMTs, Azithromycin, B12, Humira, or Cyclophosphamide.

Tagging @Janet Dafoe (Rose49) and @Ben H in case this is helpful to Ron and his team in deciding what to try next (though of course they have their own criteria).
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Quick primer on how these treatments might help:
  • Suramin - block purinergic signaling to normalize cellular metabolism

  • Actemra / Tocilizumab - destroying IL6 cytokine receptors which may be linked to fatigue and inflammation

  • Rapamycin / Sirolimus / Rapamune - normalizing cellular metabolism by inhibiting mTOR

  • Cosentyx / Secukinumab - destroying the cytokine IL17A to reduce inflammation

  • Plasmapheresis / Immunoadsorption - filtering all antibodies out of the blood to remove pathogenic ones

  • Photopheresis / UBI / UVLRx - resetting T-cells

  • Ozone autohemotherapy (10 Pass) - increasing blood oxygen for metabolic and anti-pathogenic effects

  • Plecenoril - potential enterovirus anti-viral

  • Mifepristone - hard reset of the HPA axis and boosting NKC function

  • Autologous stem cell therapy - systemic immune rest

  • Metaformin - decrease glucose production for metabolic modulation

  • Vistide / Cidofovir - strong CMV antiviral

  • Dapsone - strong antibiotic to target persistent chronic bacterial infections

  • DCA / Dichloroacetate - PDH activation

  • Vagus nerve stimulation / anesthetization - augment cytokine release by vagus nerve into brain

  • ARV / HAART cocktail (Tenofovir / Lamiduvine / Raltegravir) - antiviral combo against some enteroviruses or unknown retrovirus

  • Bortezomib / Velcade - elimination of long lived plasma cells for B-cell mediated autoimmunity

  • Dextro-Naltrexone - selective microglial inhibition

  • Xeljanz / Tofacitinib - interruption of inflammatory cascade

  • Mito IV cocktail (Meyers, NAD+, PolyMVA, CoQ10, Aminos, Carnitine) - high doses of metabolites that may or may not be deficient
 

Gingergrrl

Senior Member
Messages
16,171
Jesse, Forgive me if I've already asked you this but has there been a trial anywhere on the planet of high dose IVIG and Rituximab together? (I know Dr. Scheibenbogen did immuno-adsorption & IVIG together but this is different and I don't believe Ritux was involved).

My doctor said almost no one has tried what I have done (IVIG & Ritux together) and I am wondering why? The insurance piece took a great deal of time and effort which is still ongoing and I wonder if this is the reason? Although in a clinical trial you would not be fighting with insurance like I had to do. Is it the sheer cost that makes it prohibitive (vs. potential clinical benefits)?