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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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Search results

  1. Ravn

    Whole Genome Sequencing companies

    The problem with Dante is that while their prices are very tempting many people have been waiting for their data for a very, very looooooooong time. I ordered in May 2018 (yes, that's 2018), got partial data about 6 months later (the promise was 50 business days for full data) and I'm still...
  2. Ravn

    Dante Labs offer for father's day (ends June 17)

    Add me to the list of disgruntled customers. I did get my VCF-file results after 4 or 5 months or so. The VCF-file is pretty much useless though. I uploaded it to Promethease and Enlis and it's showing just about as many No Calls as 23andme. Which would indicate that either there is something...
  3. Ravn

    Abdominal pain?

    Costochondritis may be worth investigating. It's no fun being in pain - and that's an understatement. Good luck!
  4. Ravn

    Just terrified.

    That does sound terrifying @acouchy! While it's true that ME can do all sorts of strange things to heart rythms, gut, fainting, etc. a significant change like yours should be checked out properly by a doctor, especially with you having a history of heart issues. :hug:
  5. Ravn

    Does Iron help?

    Possibly an ok strategy for other - more harmless - supplements but not for iron. As @pamojja and @valentinelynx have already pointed out, it really is a very bad idea to supplement with iron without first having a test. There is a condition called haemochromatosis that's quite common in the...
  6. Ravn

    Otago University (NZ) is fundraising for Prof. Tate's team's ME research

    The University of Otago is currently asking for donations (NZ & International) to support the work of Prof. Tate and his team: https://alumni.otago.ac.nz/donate/myalgic-encephalitis If you can't contribute financially, maybe you could share the link on your FB, Twitter, etc. The website above...
  7. Ravn

    Wilshire and Kindlon respond to Sharpe, Goldsmith and Chalder in BMC Psychology

    An excellent reply by Carolyn and Tom to the feebly argued attempt by Sharpe, Goldsmith and Chalder to defend the indefensible (aka the PACE trial). Well worth reading in full.
  8. Ravn

    NZ - Community Health Council wants patient input (not ME-specific)

    From an announcement by the Community Health Council (CHC) covering the Southern DHB area (don't know if other areas have similar initiatives). Not ME-specific but there may be an opportunity here for some input? Some of the stories can be seen here, all are short videos, around 2 minutes...
  9. Ravn

    Alcohol tolerance before ME/CFS

    Could have 1 small drink/day, maybe 2 if sipped over several hours and with food. Too much and first the drink would start tasting unpleasant, kind of bitter and metallic. Second I'd get IBS type symptoms. Can't recall any other effects but my last drink is quite a while ago now.
  10. Ravn

    RH NEGATIVE

    Also negative.
  11. Ravn

    Hypertension, POTS, and White Coat Hypertension

    The white coat effect is a Thing so your high readings could very well just be a reaction to the situation, and not your normal BP. But since you'd want to be sure - and reassured – your idea of testing at home is a good one. The wrist devices aren't quite as accurate as the upper arm ones but...
  12. Ravn

    Is artemisinin + iron effective treatment for CFS?

    Be really careful with iron: too much is toxic so only ever supplement it if you have tested positive for a deficiency. Even people who don't eat meat can have excessive iron if they have the haemochromatosis mutation for example. So don't just guess, get tested. Anecdotally there seem to be...
  13. Ravn

    Mystery - high blood sugar and fat levels but I'm already on low carb/sugar eating plan ...?

    You may find these interesting: https://www.cell.com/cell/abstract/S0092-8674%2815%2901481-6 (paywalled) This longer article discusses the study: https://www.cbsnews.com/news/huge-differences-even-when-people-ate-the-same-foods/ This shorter article also discusses the study and has an...
  14. Ravn

    Dr David Tuller: A Q-and-A with Leonard Jason on Case Definition

    Excellent. I do hope your comment will eventually appear. I see @Valentijn made a similar and very good comment:
  15. Ravn

    Dr David Tuller: A Q-and-A with Leonard Jason on Case Definition

    Totally agree with the gist of the interview: we need good case definitions to get good research results. No argument. But there's a very strange statement in this paragraph (bolding mine): This is effectively saying that “ about half the people with a variety of medical and psychiatric...
  16. Ravn

    Doing a Whole Genome Sequencing (WGS)

    Have you received your results? And do you know if you can get the data in a format that you can use in Promethease or Enlis or similar?
  17. Ravn

    Does anyone think they could have something else?

    It's very reasonable to wonder about the possibility of misdiagnosis. According to these two articles it's very frequent indeed. From the UK: http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/ From Australia...
  18. Ravn

    Now very severe HELP

    Wishing you strength and courage @MartinDH, @MichaelK and also all your friends and families. Unable to read the whole thread so may be repeating earlier posts. I did see somebody warning of eating disorder misdiagnosis. A very valid concern though it's worth remembering that the word...
  19. Ravn

    low iron?

    @outdamnspot Your suspicion is correct, coffee can interfere with iron absorption, so can tea. Best not to have either close to a meal. Vitamin C, on the other hand, is thought to help iron absorption so it's a good idea to have a good dose of that with your meals. Also, iron tests can fluctuate...
  20. Ravn

    Cortene Peptide for MECFS? "Curative"?!

    Based on the info available it looks like it will be one of the better-designed trials. They'll be using CPET and looking at PEM. And the involvement of the Bateman Horne Center should hopefully ensure trial participants will actually have ME rather than just some sort of undefined fatigue...
  21. Ravn

    I have been reading some wonderful books

    For those who find books too much, the author also blogs: https://www.psychologytoday.com/blog/turning-straw-gold Note: While the blog features on Psychology Today the author believes ME to be a physiological illness and that the function of psychology and philosophy is to help patients cope...
  22. Ravn

    Should I start a ME/CFS clinic?

    A great idea. It would likely (I don't know the situation in Brazil) fill a gap. Best to do it in partnership with one or more healthy colleagues so you never have to choose between compromising your own health or letting patients down. A sick doctor is no use to anybody. Hopefully you'll never...
  23. Ravn

    In memory of anonymous victims of ME

    Thought it would be good to have a thread for those who wish to acknowledge a friend lost to ME but who cannot post the name or identifying details out of respect for the wishes of the family. This was prompted by the recent suicide of a good friend (not a member here) who suffered decades of...
  24. Ravn

    uBiome results

    I don't know but I think it would be useful. An example, if I search my Ubiome report for e.coli I come up with nothing. This could theoretically be due to 2 reasons: 1/ Their methods are incapable of detecting e.coli. In this case a nil result tells me nothing. I may have e.coli or not. 2/...
  25. Ravn

    uBiome results

    That would be great, thanks. Though I fear they only put what they found in the report, not what they didn't find (that seems to be what they do with the bacteria, does anyone know for sure?) so you never know what you may be missing, for better or worse.
  26. Ravn

    uBiome results

    Anyone know what sort of viruses and fungi are included?
  27. Ravn

    Which tests for iron overload / iron toxicity?

    The only thing I know of is venesection, and since you don't have a haemochromatosis diagnosis you may find it a struggle to get those. For most people venesections will lower both the iron and the saturation. And although your own iron levels are normal they are high enough to lose a little...
  28. Ravn

    Which tests for iron overload / iron toxicity?

    Agree with @Learner1 : you don't want to ignore high iron levels, they really can do damage. Before you panic, tests can fluctuate a bit, so don't freak out because of a single out-of-range result - but do monitor regularly. There's a lot of disagreement about what constitutes dangerously high...
  29. Ravn

    Which tests for iron overload / iron toxicity?

    The only symptom I get is sore knees in the week or two before I'm due for a venesection. A couple of days after the venesection the knees are fine again. I don't know why the doctors insist on taking blood tests to check my iron levels, I can tell them exactly what they are just going by my...
  30. Ravn

    Which tests for iron overload / iron toxicity?

    Your saturation isn't super-high and may just be a one-off. But if you want to be on the safe side ask for a repeat of the iron panel plus the genetic test for haemochromatosis. There's a subgroup of haemochromatosis patients with normal ferritin but high saturation (I'm in it, more extreme...