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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. L

    Sept 21 - Stanford Working Group Meeting

    Meetings like this one generally involves tossing ideas around, some not really well formed yet, using their colleagues as sounding boards. A real important part of the scientific process, but not really ready for outsider consumption, not even well-informed patients. That may be part of why...
  2. L

    Anyone had luck with center for complex diseases?

    Also, Lawrence Afrin has a book on MCAS you may be able to get through a public library or interlibrary loan: Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity (You can see some pages on amazon; kindle version is 14.99)...
  3. L

    Anyone had luck with center for complex diseases?

    I saw Dr. Kaufman, when he was at Open Medicine. I have a huge amount of respect for him. The problem is, they don't contract with insurance companies (because of the way insurance reimburses, they're not paid for all the time they invest in your care) and that means going to them can be very...
  4. L

    All Things Mast Cell with World-Renowned Clinical Researcher Dr. Theoharides

    There's some really good info about flavonoids dosing - towards the end of the podcast. It's complicated, so it helps to follow the transcript. Relevant part on flavonoids (from transcript): Dr. Theoharis Theoharides: Number one, I never give more than one gram a day, flavonoids of any...
  5. L

    Alpha-gal syndrome: Lone star tick (and other ticks) & allergy to mammal meat: hives, indigestion, anaphylaxis

    This may some people with unexplained sensitivity & hive reactions, especially if you've been in areas of the US where the lone star tick exists (or along beaches in Sydney Australia, where another tick can cause a similar reaction ... article says there are ticks around the world that can cause...
  6. L

    Why is ME energy-related symptomatology so different from diabetes?

    Lucinda Bateman has written about something like this. Essentially, the idea is a CFS patient needs to stay below their personal anaerobic threshold. Where that is varies greatly across patients. See http://www.iacfsme.org/portals/0/pdf/cfsandtheexcerciseconundrum.pdf "There is no doubt that...
  7. L

    Did you have any strange 'episodes' before M.E properly took hold?

    This is an old thread but thought I'd chime in since these things can help others. I had shingles at a fairly young age in 2001. But, others in my family had weird things from that virus: one sibling had chicken pox multiple times (confirmed by dr; this was before the vaccine existed); another...
  8. L

    The state of science publishing: neuroscientist tricks journals into accepting fake paper

    I think it's important to note that they were targeting predatory journals. These are the ones that will simply take almost anything, and often, researchers pay to publish in them. Unfortunately, to be a good consumer of scientific research, you need to have an understanding of the (1) quality...
  9. L

    OMF-funded RBC Deformability Paper Published!

    Grateful to the people doing top-notch research in this field! Looking forward to seeing the paper once it's out. When I looked at the link, I, too, thought that the link went to an abstract. (The abstract also reads more like a conference abstract than an abstract for a paper - which are...
  10. L

    Drinking baking soda (sodium bicarbonate) may treat autoimmune disease

    Afrin has an excellent talk here (from 2016): 2 hours. Beginning is background, biology. Dx criteria in 2nd half hour. 3rd half hour, he goes through long list of symptoms. 4th half hour: answers question. Another Afrin talk here, from Nov 2017, 1 hour: I did screenshots of some of...
  11. L

    24/7 365 chronic brain fog/inability to think, MCAS, EDS 3, GERD, SIBO

    There's a 2016 talk on MCAS by Dr. Afrin here that is excellent. It would be very informative to physicians, if they watched it. I also copied & pasted some of his slides including the diagnostic criteria (2 different proposals; Afrin favors the one labeled 'alternative proposal) and some...
  12. L

    Stanford university looking for participants - white matter evaluation

    This is a bit tangential, but I'll mention that the way they characterize language organization (first paragraph under the heading 'right' vs. 'left'; particularly the first 4 sentences) on the page below is unfortunately misleading and largely wrong...
  13. L

    MTHFR Study is Recruiting Volunteers in North Seattle (info came from Ben Lynch)

    What Institutional Research Board is overseeing this "study"? There's nothing on the clinic's website about this study.
  14. L

    Doctor near Seattle, WA?

    Hi Strawberry, I wanted to ask whether you ever went to OMI & how things turned out. Sorry about the long delay; the last 2 years have been a bit hectic for me.
  15. L

    Psychology Today Opinion piece regarding the IOM release

    Regarding the piece "Chronic Fatigue Syndrome is Back" which has been removed from Psychology Today: at the time, I put it in the internet archive at the time; see link above in the quote if you want to see it. (Note there still is a 2nd blog by Edward Shorter on CFS at Psychology Today, but...
  16. L

    MTHFR test and insurance coverage - what is your experience?

    That's not necessarily true. There could be some other evolutionary advantage that we don't see, or some other role for those SNPs, that perhaps becomes apparent in very different living conditions. What is evolutionarily relatively advantageous in one circumstance may be relatively...
  17. L

    MTHFR test and insurance coverage - what is your experience?

    This is interesting. Although it's really difficult to clearly link most low-level chemical exposures to health issues, that's really because in the US, the policy is to "assume safe unless otherwise shown" and not require manufacturers to do adequate safety testing. I find this interesting...
  18. L

    MTHFR test and insurance coverage - what is your experience?

    Reply to Jonathan Edwards: I guess I have to wonder whether you understand how screwed up the American insurance system is. I just realized you're not in the US so really doubt you do. I mentioned a bit of that in replies to you above, but don't want to go into it now. There's plenty on the...
  19. L

    MTHFR test and insurance coverage - what is your experience?

    In principle, what you say sounds great. In practice, not really do-able. There are plenty of physicians treating patients with CFS and doing their utmost best, who are up-to-date on what literature there is, and who are not trained in conducting research (and some who are involved in conducting...
  20. L

    MTHFR test and insurance coverage - what is your experience?

    Thank you for the feedback. There has been so little funding ($5 million a year, or on a per patient basis, about 2% of what is spent on lupus or MS; this has been true for more than a decade, and in fact, funding (relative to NIH funding in general and funding for most other diseases) for CFS...
  21. L

    MTHFR test and insurance coverage - what is your experience?

    I haven't been able to find research that has been done on the linkage of MTHFR genes to ME specifically. I understood the link may be in that with certain alleles, the immune system functions less well, which due to downstream effects, may lead to a higher likelihood of certain viruses...
  22. L

    MTHFR test and insurance coverage - what is your experience?

    Thank you for your reply. I thought in part the test was to assess issues related to methylation (and subsequent issues related to the body's processing of folate and B-12). There may have been other reasons (I think it's reasonable to say that most patients couldn't adequately enumerate to an...
  23. L

    Evidence of Neurological Abnormalities in ME Suppressed in the IOM "ME/CFS" R

    I'm a little late to this discussion but I guess I don't understand why one would "feel frozen out of IOMs disease" - the IOM report ("Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness") includes extensive discussion of neurocognitive manifestations in ME/CFS (from...
  24. L

    MTHFR test and insurance coverage - what is your experience?

    Edit to add: although this thread went off on a big tangent initially, I'd still really like to hear from people about the information I originally requested. To clarify:- the MTHFR lab test has already been done. I appreciate some of the suggestions others have made about using other labs. I...
  25. L

    "CBT and GET are effective"

    In Lucinda Bateman's talk at the link below, at about the 51:00 minute mark, she talks about "subgroups" of "chronic fatigue" (not necessarily CFS) patients that she has observed in her clinic. Based on her experience (specifically, slide at about 51:25), she thinks exercise is "helpful" for...
  26. L

    Dr. Bateman answers IOM questions from the community: Part 1

    Link to video of Dr. Lucinda Bateman here: http://forums.phoenixrising.me/index.php?threads/dr-lucinda-bateman-new-webinar-iom-diagnostic-criteria.36945/#post-587994 From Solve ME/CFS Initiative. Webinar with Dr Lucinda Bateman. Titled: Will SEID Diagnostic Criteria Improve Diagnosis and...
  27. L

    Dr Lucinda Bateman. New Webinar: IOM diagnostic criteria.

    I made screenshots of the slides presented in the video above. There is also a 10+ minute question/answer at the end of the video (no slides for that). One point Bateman makes is that all the arguing within the CFS field about the name is really non-productive. (Some of the people arguing...
  28. L

    Dr. Bateman answers IOM questions from the community: Part 1

    Thank you for this, and thanks to Dr. Bateman for serving on the committee and taking time to provide these responses. This is very important work, and the review was very well done.
  29. L

    Chronic fatigue syndrome and co-morbid and consequent conditions...

    The above link does not provide free access to the article for me. (It may be that the poster was at a university link or something similar where access was free - or else, it was an error that got corrected). For those who want to see the article: you may be able to go to a major public...
  30. L

    Systemic Mast Cell Disease:

    I just came across this thread ... . I found a PDF that seems to contain the original talk slides at www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf The PDF was too big to upload, but the internet archive has a screen shot of the page at...