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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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  1. M Paine

    Is a history of ME linked to increase risk of long covid, or relapse?

    Unfortunately I tested positive for Covid, and I have a history of ME which has thankfully cleared up. I'm worried about relapsing, and I wonder it there are any papers which look at the risk factors for either ME relapse or acquiring long covid for those with a current or previous history of...
  2. M Paine

    20 patients now found positive for CCI / AAI, there must be many more...

    Just going to weigh in here with a personal anecdote. I have had issues with bladder urgency, shoulder and back pain, and of course ME/CFS. Personally I do find that addressing my back issues has correlated with general improvements in my health. Some of those improvements seem very short term...
  3. M Paine

    ME/CFS in the Era of the Human Microbiome: Persistent Pathogens Drive Chronic Symptoms...

    Well, of all the descriptions that come to mind when seriously talking about wrapping ones head in materials with similar properties to tinfoil to improve ones health, 'nonsense' was the most polite. No one is likely to bother attempting to replicate that bogus tinfoil hat study, but they should...
  4. M Paine

    ME/CFS in the Era of the Human Microbiome: Persistent Pathogens Drive Chronic Symptoms...

    This is why we need randomised clinical trials and better biomarkers. It's a leap of faith to expect this protocol to work. Anecdotal evidence isn't enough. I am however interested in the radio frequency radiation sickness that's mentioned on their site. Legit, I'm going to make a little...
  5. M Paine

    ME/CFS in the Era of the Human Microbiome: Persistent Pathogens Drive Chronic Symptoms...

    Honestly, this vitamin D protocol sounds dubious. I'm going to put it on the shelf right next to methylation.
  6. M Paine

    Cure to Treat African Sleeping Sickness Approved

    Just to clarify, I'm really unsure what the status of Mady Hornig and Columbia is currently. It was fairly public that she was/is suing Ian Lipkin and the department over sexual discrimination.
  7. M Paine

    OMF: Learn firsthand about the exciting Second Annual Community Symposium

    I was asking about Columbia and Stanford. Mostly because of the commonality between their Kynurenine findings. Mady Hornig seemed to be driving some of that research from what it seemed like, presumably she's no longer working in Ian Lipkin's Lab, as she is suing Ian Lipkin for sexual...
  8. M Paine

    OMF: Learn firsthand about the exciting Second Annual Community Symposium

    I was meaning Columbia, not Cornell... or am I missing something?
  9. M Paine

    OMF: Learn firsthand about the exciting Second Annual Community Symposium

    I'm curious, is there a working relationship between Columbia and Stanford?
  10. M Paine

    OMF: Learn firsthand about the exciting Second Annual Community Symposium

    Thanks @Ben H (and any others) for summarising the symposium. Is there a video version of the talk from Dr Phair, or the closing remarks from Ron? On the Kynurenine note, I recall Dr Hornigg was very interested in the pro inflammatory role of Kynurenine in the gut. I recall that Columbia...
  11. M Paine

    Latest from Fluge and Mella: ME/CFS Immunosignature Identified

    Finally got around to reading the paper... "These 256 peptides are positioned throughout a phylogenetic tree derived from the complete 125 k-peptide dataset (Supplementary Figure 11 in Online Resource 1), indicating the signature is comprised of diverse peptides and is not reflecting any...
  12. M Paine

    Latest from Fluge and Mella: ME/CFS Immunosignature Identified

    Peptides are short chains of proteins. Generally speaking, peptides are often a small section of a much larger protein. In humans, there are two major parts of immune surveillance which identify foreign protein peptides. 1. Random proteins found inside a cell are chopped up and presented on the...
  13. M Paine

    Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

    Yes, it seems correct that CFS patients may have real issues producing and maintaining a "normal" immune response to EBV Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome "when analyzing the EBV-specific memory B-cell reservoir in vitro a diminished or...
  14. M Paine

    Comment by 'M Paine' in 'Being a mother with this illness'

    Thanks for posting this. I'm a new dad, and this breaks my heart. I know the struggle of grieving for what you want to be, but I can tell that you also have a similar determination to be the best that you can be under the constraints you are forced to live under. Best of luck to you and your...
  15. M Paine

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition (PLoS ONE)

    They address the cause vs effect question in the paper, here's an excerpt: CFS is an agnogenic disease, whose symptoms involve many systems[15] and systemic inflammatory factors[18]. Thus, CFS patient oral microbiome alterations may be only one clinical index of CFS pathogenesis. It may be that...
  16. M Paine

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition (PLoS ONE)

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function https://doi.org/10.1371/journal.pone.0203503 (Link to Paper) Abstract Host–microbe interactions have been implicated in the pathogenesis of chronic fatigue syndrome (CFS), but whether the...
  17. M Paine

    Search for biomarkers in ME/CFS using Raman spectroscopy - ME Association (UK)

    Raman spectroscopy... mmmm... I feel like some asian noodles all of a sudden.
  18. M Paine

    CFRSC+OMF 2nd Community Symposium registration!

    Rude... would be an understatement.
  19. M Paine

    Loss of TRPM3 ion channel function in natural killer cells from CFS/ME patients

    I wouldn't suggest trying Thapsigargin as a treatment... I mean, it doesn't even work by itself in the paper (PregS was required as a co-treatment in their experiments). That's not even taking into account all the other risks and problems with that treatment strategy. I don't mean to take a dig...
  20. M Paine

    Loss of TRPM3 ion channel function in natural killer cells from CFS/ME patients

    Reading this groups last paper (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5217865/) I recall being one of the most difficult paper's to follow and understand. I just tried to refresh my memory of it, and quite honestly I still don't follow parts of the experiments. Particularly why PregS...
  21. M Paine

    ME/CFS researcher Derya Unutmaz's hypothesis on cause of ME/CFS....

    There are a lot of anocdorsl reports of fecal transplant leading to temporary relapse. It seems like repopulating the microbiome isnt enough, like there is some other process occurring which leads to dysbiosis. Same goes for antibiotic use. People report brief relapse after antibiotic use...
  22. M Paine

    ME/CFS researcher Derya Unutmaz's hypothesis on cause of ME/CFS....

    This is the thing, it's not clear what "leaky gut" is caused by. We know for example that there are many cytokines which alter epithelial and endothelial barrier function, including the epithelium of the gut, or the blood brain barrier. We also know that the immune system plays a large role in...
  23. M Paine

    ME/CFS researcher Derya Unutmaz's hypothesis on cause of ME/CFS....

    LPS should trigger certain toll like receptors, such as TLR4. IL12 should be increased as a result, and a quick pubmed search for cytokine studies of CFS patients brings up studies where they do see elevated IL12. Can't say I feel confident about what causes translocation of microbial products...
  24. M Paine

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    I don't know what I was expecting, but a powerful magnet probably wasn't on the list... don't they use MRI scanners at over ten times that strength? Quite often on the brain specifically? Food for thought I guess.
  25. M Paine

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    I'm not quite sure what you mean here, the outcome of a double blinded trial isn't affected by patients who have an obvious response. So long as they aren't sure, and their practitioner isn't sure which arm of the study they belong to, then it's anyone's guess what that response was caused by...
  26. M Paine

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    Sounds like an interesting story on both counts... particularly what you thought led you to get ME/CFS, and what/why you were experimenting to start with. If you ever do start a thread, I'm sure it would be an interesting read.
  27. M Paine

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    @Hip ... I would like to see some sort of history of all the things you have ingested, rubbed, drank, injected, inhaled, sniffed, or any other potential treatments that fall outside those delivery methods. I'm sure it would be an impressive list. Don't take this as a dig at you, I personally...
  28. M Paine

    Mono Virus Discovery - Implications for ME/CFS?

    I feel like I have a quite 'basic' understanding of auto-immunity, and because of that it's easy to make 'basic' conclusions about how this might happen. If a qualified immunologist were to stop by, perhaps they would have a much more nuanced view of things. Thanks for the kind words, but I hope...
  29. M Paine

    Mono Virus Discovery - Implications for ME/CFS?

    Hi @Daffodil, Yes, I would tend to agree with you there. It's like with HIV, there are very, very few cases where complete eradication has been observed. In latent state, infected cells are basically not visible to the immune system. In order to clear all infected cells, every single infected...