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

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Search results

  1. N

    Anyone know about Berlin Cures BC007/cured Long Covid cases (applicable to ME/CFS)

    https://berlincures.de/pipeline/#:~:text=Pipeline%20and%20BC007%20Mode%20of,%2Dadrenergic%2Dreceptor%2Dautoantibodies. @BerlinCures #LongCovid symptoms disappear after treatment with our #BC007. For many an individual case, for the patient and for us a great success. We hope this will bring...
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    In memory of Carol Sieverling

    Carol was a wonderful, kind and supportive person. I only knew her online, contacting her when I first became very ill with ME, 16 years ago. She helped me to get my first appointment with Dr. Cheney. She was always ready to listen and provide good advice and support. She was a wonderful...
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    Dermorphin Experience - Very Impressive Results

    Is it dependency forming like all other opioids. Where do you get it from?
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    Peptides/Dr. Kaufmann

    I read on FB that Dr. K is starting to treat with peptides. has anyone started working with him using these. I am particularly interested in the Thymosin-Alpha? Thanks.
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    Ronald Tompkins, MD, ScD announced as Chief Medical Officer of Open Medicine Foundation

    Does this mean there are some new clinical treatments or tests to share?
  6. N

    IDO Metabolic Trap Hypothesis Published Today

    What does it mean in terms of potential treatment possibilities to have this paper published. What are the next steps to getting to treatment? Congrats to the team on this great accomplishment. Thanks for all your hardwork.
  7. N

    Thymosin Alpha 1

    @Janet Dafoe (Rose49) Is Dr. Davis aware of this peptide and the positive effect it has had on some patients? Seems like a low impact treatment vs extreme things like CCI surgery.
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    MOTS-c

    I am interested in mots-c also. Can they be ordered online.
  9. N

    BPC-157

    Seven: What is the Oxford Peptide. How and where do you find? Thanks, Lisa @Seven (formerly lnester7)
  10. N

    A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

    The Stanford team has also been using their test to see if drugs can dampen down the electrical response of cells under stress. They have already discovered that one medication in common use does, and hope to start clinical trials soon. What is it?????
  11. N

    Video, Emerge Symposium 2019: Metabolic Traps in ME/CFS - Research Update by Dr. Robert Phair

    Sorry I dont know how to copy this video over here from facebook. It is a very detailed lecture by Dr. Phair about the Metabolic Trap Theory. You can cut and paste address. OMF Facebook Page...
  12. N

    Fundraising for Clinical Study for Potential ME/CFS Treatment

    Almost sure this is to raise funds to continue ampligen which is called a clinical study in another post on the same facebook page. So nothing new here....and not related to OMF.
  13. N

    Fundraising for Clinical Study for Potential ME/CFS Treatment

    @Janet Dafoe (Rose49) @Ben H Can anyone provide more info as to what this means. Simmaron is not Dr. Davis' team; it is Dr. Peterson so what might this drug be....an anti-viral? ampligen? I know Dr. Peterson has a whole slew of drugs/treatments he uses on his patients. Thanks
  14. N

    Cortene trial

    What does OMF think/say about the Cortene trial?
  15. N

    What happened to Dr. Kogelnik?

    Does anyone know what he is doing these days?
  16. N

    How Much Longer? ME Advances: Projected Timeline for Tx or Cure

    arrrrrrrrrrrrrrgh!!!!!!!! god I hope not.
  17. N

    Prochlorperazine

    Trifluoperazine and paroxetine may also be P2X7 inhibitors. @pattismith So does this mean that one of those 2 drugs could help with our ME/CFS symptoms? Thanks (science ignorant)
  18. N

    Abilify- Stanford Clinic Patients

    Anecdotal stories on the Stanford ME/CFS FB page (Montoya Patients): less brain fog, able to do small tasks when were completely bed-bound before, small increases in energy. No-one has been on for a very long time, so stories are based on a short time span on drug. But hey any good news is...
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    Abilify- Stanford Clinic Patients

    @Ben @janet @jamie @HTester Does anyone know why this drug is not being discussed by Dr. Davis and his team if Dr. Montoya's group is seeing success with its use. Thanks.
  20. N

    Prochlorperazine

    Thanks for this useful info. The prochlorperazine is one of only 3-5 drugs I have been able to tolerate since becoming ill. Everything else I have tried has made my symptoms worse. The drugs I can tolerate: Klonopin, lowers the excitoxicity of my nervous system, helps me to sleep and reduces...
  21. N

    Abilify- Stanford Clinic Patients

    1 mg according to patients on Stanford M/E Clinic Facebook page. Read this FB page if you want to see what the patients there are talking about. I posted here to see if any patients here had experience from their medical professionals.
  22. N

    Abilify- Stanford Clinic Patients

    Sorry I dont know the answer to that. I just know what I have read on the Facebook group page about Abilify written by Stanford ME Clinic patients.
  23. N

    Abilify- Stanford Clinic Patients

    Hi Perrier: Yes I know this is the on label use of the drug in normal prescribed quantities but Stanford is using it in micro dosages to deal with brain inflammation.....is what I read on their Facebook page. Some patients are saying it is helping them. I just wonder if any are severe...
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    Prochlorperazine

    Yes, I do have suspected MCAS so this may be why the med is helping. Thanks for your insight. I appreciate it.
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    Abilify- Stanford Clinic Patients

    Hi All: Lately have ready numerous posts on Facebook (Stanford/ME group) about the use of Abilify. Apparently the clinic is prescribing very low dose of Abilify as part of their treatment protocol. Does anyone have any experience using this drug. If so can you discuss the results you had...
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    Anyone seen a Psychopharmacologist?

    Has anyone seen this type of Dr. and been helped. They seem to have great knowledge about all kinds of drugs....not just psychiatric drugs. Any advice welcome. Thanks.
  27. N

    Prochlorperazine

    I was prescribed this for nausea but I'm finding it makes me feel better overall; mellows out my nervous system, reduces pain, helps sleep, increases appetite. Just overall seems to improve all my symptoms a bit. It is a D1 agonist. Does anyone have any ideas at all why this drug may make me...