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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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  1. S

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    It's a different room. When I arrived at the Sheraton Palo Alto yesterday night, I found that one of their ballrooms had been booked for the scientists' meeting. Today is at the Paul Brest Hall at Stanford.
  2. S

    Rutherford Ph.D. Thesis: Investigating the biochemical basis of muscle cell dysfunction in CFS

    But this is good. No research project or dissertation is perfect. This young scientist is having her work actually read with an attempt at understanding by a larger number of people than most (maybe 8 people have read my dissertation, if I'm lucky). Hopefully our critiques will be read to...
  3. S

    Rutherford Ph.D. Thesis: Investigating the biochemical basis of muscle cell dysfunction in CFS

    I'd originally edited out a comment about how that's been part of what's so compelling about Ron Davis's work - both because that's the area where he really advanced genomics, and also because that's why he himself regularly processes samples late in the evening. I'm really looking forward to...
  4. S

    Rutherford Ph.D. Thesis: Investigating the biochemical basis of muscle cell dysfunction in CFS

    Likely lack of an established lab protocol or workflow for taking patient samples, processing and then immediately testing them. It's a weakness in practically all biomedical research, because attempting to test samples immediately requires greater resources (transport, experiment prepped and...
  5. S

    "something in the serum"

    From the Theorell et al discussion thread, there is the finding that after the nk cells have been cultured, there's no alteration in cytotoxic capacity of the cells: Unperturbed cytotoxic lymphocyte phenotype and function in myalgic encephalomyelitis/chronic fatigue syndrome patients Jakob...
  6. S

    Muscle injections with lidocaine improve resting fatigue and pain in patients with CFS

    My lidocaine injections were intramuscular, close to the trigger points, though the description of the location for the gluteus maximus injections in the paper puts the ones I received in the same vicinity. Look up trigger point injections for myofascial pain for additional info.
  7. S

    Muscle injections with lidocaine improve resting fatigue and pain in patients with CFS

    For the limited value that anecdotal evidence has: I've done this twice: once in my early 20s and once in my early thirties. Both times, it reduced my pain and allowed me to resume a schedule of running for fitness after it had become to painful/refractory to do so. In my case, the effect...
  8. S

    Join us for a Community Symposium on the Molecular Basis of ME/CFS! Incredible opportunity!

    Interesting that Neil McGregor will be coming in all the way from Melbourne. I missed getting a chance to meet him years ago when I was interviewing with Tim Roberts and Hugh Dunstan to join their lab in Newcastle, AU.
  9. S

    Join us for a Community Symposium on the Molecular Basis of ME/CFS! Incredible opportunity!

    Done. I look forward to some interesting discussions!
  10. S

    Economic evaluation of multidisciplinary rehabilitation treatment versus CBT for patients with CFS

    I'll stand by my original statement. The aim states that MRT is more effective over the long term than CBT. The unspoken assumptions, then, are 1) that CBT is an effective treatment and that the objective measures are of a degree that 2) a cost effectiveness analysis can be meaningfully...
  11. S

    Economic evaluation of multidisciplinary rehabilitation treatment versus CBT for patients with CFS

    The fundamental hypothesis is flawed. If neither method is consistently effective, then the default best treatment for a cost effectiveness analysis is, quite literally, do nothing. It can only become useful when comparing two proven effective treatments. Concluding that CBT is more likely...
  12. S

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    Herpesviruses are well known to go dormant in cells for periods of time - the same way cold sores disappear to come back in the same place years later. When the virus is active, blood tests can detect viral proteins in the blood from cells that have lysed, and antibodies being used to combat...
  13. S

    The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

    WARNING: Wild supposition ahead while I'm short on sleep. It might also be possible to make a murine model of this. I have no idea how (or even if) EBV has any effect on mice, but one might inject herpes virus-infected lymphocytes to the relevant area and see if/how symptoms are replicated...
  14. S

    Distinguishing CFS - New Zealand Research

    Though it takes weeks to recover for many CFS patients, I'd still like to see this become a standardized test. That dropoff doesn't reproduce in deconditioned or elderly controls. I'd imagine it would be a relief to a lot of folks to be able to point to something for LoA/disability paperwork...
  15. S

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    I really should see if I can get a chance to get in some shop talk with the Naviaux lab now that I'm relocated to San Diego. I'm impressed by their transparency and professionalism.
  16. S

    Development of a recumbent isometric yoga program for patients with severe CFS/ME: A pilot study

    The goal is worthy: development of an excercise program which CFS/ME patients can do to generate some of the benefits of exercise and minimize deconditioning without aggravating symptoms. Are they there yet? Probably not. It was worth trying and reporting the results, though. With regards to...
  17. S

    How is it to be an adolescent living with chronic fatigue syndrome/myalgic encephalomyelitis?

    At first glance, this seemed like absolute nonsense to me. My off the cuff estimation was that a 10x higher risk for depression in adolescents with CFS vs those without would equate to a greater than 100% risk. The abstract of the Crawley paper that the author of this paper cited for depression...
  18. S

    OMF-Linda Tannenbaum and Prof. Davis NSU Panel Video

    @Ben Howell - are you planning to post here with the address when the database goes live? There are already so many publications out there that it is nearly impossible to keep up with any given field via journal articles alone. There is also the issue that in "big name" journals such as Nature...
  19. S

    Needed: ME/FM Grant Application Reviewers

    Biochemistry from the graduate school of biomedical sciences at the University of Texas Medical Branch. That plus 11 years industry experience as a research biochemist might get me a seat at the table.
  20. S

    Needed: ME/FM Grant Application Reviewers

    I'll throw my name in the hat. This newly minted PhD ought to be good for something.
  21. S

    New CIHR (Canada) ME Catalyst Grant Competition

    Grants like these actually bother me quite a bit. The only way it could fund any biological research is if it is awarded to a completely outfitted lab which already has patient samples stored and staff paid for, and is only looking to cover consumable costs. There is no small scale...
  22. S

    Nature-Translational Psychiatry: Different protein expression in saliva of people with/ without CFS.

    I find it a little odd that the non-CFS twin questionnaire results weren't included, as this might be more useful than the comparison of the twin to other CFS controls. No, it just means that there was 2.2 times as much of that enzyme in the CFS twin. The actual conversion rate is dependent...
  23. S

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Dear god, I come up for air after a week of manuscript and dissertation writing to find 37 pages of comments on the Naviaux article between this thread and other one. After a couple hours of digesting all this, here's where I'm at regarding the article results: 1) Hooray for a PNAS article...
  24. S

    Chi et al: Metabolic mechanism of a polysaccharide from Schisandra chinensis to relieve CFS

    Imprecision of speech on my part. I know you've dug into MTHFR to find no statistical difference between pwME and population controls. I've edited for clarity.
  25. S

    Chi et al: Metabolic mechanism of a polysaccharide from Schisandra chinensis to relieve CFS

    As a biochemist whose work (non-CFS related) sits at a similar interface, I find it easy to understand that reviewers of the article would be focused on the bioanalytical techniques used and data collected, and gloss over the animal model. Without understanding the etiology of the disease for...
  26. S

    Gender differences in chronic fatigue syndrome

    I think they mean anxiety disorders.
  27. S

    Gender differences in chronic fatigue syndrome

    Fig. 1 seems pretty pointless without a comparison to non-CFS controls for both genders. Interesting that only 9.1% of their CFS population was male, as I thought the gender balance for prevalence was closer to 2/3 female, 1/3 male.
  28. S

    Loy et al: Effect of Acute Exercise on Fatigue in People with ME/CFS/SEID

    No, simply that their conclusion that future fatigue trials should be performed with additional control groups is a poor recommendation, especially given the state of funding for CFS/ME, and that there are papers well within their search parameters that should have been considered as they...
  29. S

    Loy et al: Effect of Acute Exercise on Fatigue in People with ME/CFS/SEID

    So it's a review of literature, stating that an inclusion criteria for the CCC is, in fact, present in the ME/CFS population? But that it's difficult to replicate the results with a single acute bout of exercise? Great, thanks guys... did you perchance read Keller et al. 2014 about using a...
  30. S

    Disability Adjusted Life Years - graph source / citation?

    Australia's DALY calculation for CFS from 2003: http://www.aihw.gov.au/publication-detail/?id=6442467990 And a nice bonus link to the spreadsheets with YLL, YLD, etc: http://www.aihw.gov.au/bod/bod_summary_sheets/aus.xls DALY will be very tough because of disagreements on incidence...