• 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. Snowdrop

    FY19 Funding for ME/CFS restored

    Not luck so much as hard advocating work.
  2. Snowdrop

    An Urgent Question

    This situation is very distressing for your friend and for all of us who know that this is not a new or unique situation. Although it's not at all helpful he has my sympathies. This should not happen to anyone. From the above posts it sounds like his family will never be persuaded by anything...
  3. Snowdrop

    Can Anyone Explain the Difference Between OI and POTS?

    There is this site: http://www.dysautonomiainternational.org/page.php?ID=34 If you scroll down the Learn more there is more info and this: https://forums.phoenixrising.me/index.php?threads/dysautonomia-and-pots-an-overview.28370/
  4. Snowdrop

    Exercise intolerance - non-classic PEM?

    You can read about the various categories of symptoms of PEM (referred to as PENE by ICC) here: https://me-pedia.org/wiki/International_Consensus_Criteria PEM is not about getting tired after exertion.
  5. Snowdrop

    An idea on how we might advocate for ourselves

    If you're interested in moving things forward/advocacy why not contact #MEAction? They already have a lot going on and infrastructure in place to do things. I'm sure they'd be happy to hear from anyone wanting to help. Although before presenting any ideas I'd take a beat to get up to speed...
  6. Snowdrop

    What’s up with this? - [Faulty Cell Receptor in Immune Cells]

    Here is a write up about the research of Marshall-Gradisnik and Staines: https://www.meaction.net/2017/03/16/calcium-channel-ion-defects-research-from-australias-griffith-uni/ There are links embedded in the write up to other info about drugs that they think will target the problem.
  7. Snowdrop

    Are you totally convinced you have CFS?

    https://www.frontiersin.org/articles/10.3389/fimmu.2018.01028/full http://me-pedia.org/wiki/Natural_killer_cell https://www.s4me.info/threads/association-of-t-and-nk-cell-phenotype-with-the-diagnosis-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-rivas-et-al-2018.3785/
  8. Snowdrop

    Are you totally convinced you have CFS?

    Hopefully in the not too distant future there will be a definitive diagnostic test to determine ME/cfs. To read about the research see here: https://med.stanford.edu/news/all-news/2017/07/researchers-id-biomarkers-associated-with-chronic-fatigue-syndrome.html
  9. Snowdrop

    Brain fog and exercise research

    Hi @Trillian This document has a section on exercise research: http://www.meaction.net/wp-content/uploads/2015/05/ME2FCFS-RESEARCH-SUMMARY-Jamie-Seltzer.pdf Also, a comprehensive list on energy metabolism studies in ME can be found here...
  10. Snowdrop

    Help with activity pacing

    My suggestion would be to get one of those wrist monitors if you can. Like a fitbit for example (I have a Garmin) You then can know in a more direct and specific way when your heart rate goes high or how many steps you've taken in a day. That way there is some feedback as to when to stop an...
  11. Snowdrop

    Odd topic - robot vacuums - has anyone tried them?

    Yes. Sometimes new technology does progress and updates may work better but sometimes a model a few years old has proved itself if it still works well and can be cheaper. And sometimes the price goes down with newer models for a time as the tech becomes easier to manufacture. I don't have one...
  12. Snowdrop

    Odd topic - robot vacuums - has anyone tried them?

    There's a previous thread that might have some helpful info: http://forums.phoenixrising.me/index.php?threads/who-has-tried-robot-vacuum-cleaners.31700/
  13. Snowdrop

    Can anyone condense the latest research that we know?

    There was just a huge amount of information disseminated on twitter from the Conference in Montreal Cda with screen shots of some of the findings shown in the presentations. If you're on twitter see: #MECFSconf18 or see here...
  14. Snowdrop

    International Canadian ME/CFS Conference May 3-5, 2018

    For any PR people on twitter they can follow the science presentations at #MECFSconf18 (that's ME CFS conf 18)
  15. Snowdrop

    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    Jen also set up (with others) #ME Action/MillionsMissing advocacy to further awareness of ME as a serious disease and get governments/philanthropists and researchers to provide more funding and do the bio research needed for treatment and a cure. See: https://www.meaction.net/
  16. Snowdrop

    anyone try celery juice for POTS?

    @datura There is an interesting new thread on POTS research here: http://forums.phoenixrising.me/index.php?threads/pots-rising-research-advocacy-producing-breakthroughs-in-neglected-disease.58985/
  17. Snowdrop

    Scientists trade insults over ME (JHP special issue)

    There are most certainly major questions with regard to this trial. It is the focus of a great deal of scrutiny. David Tuller has done a brilliant job of blogging on the PACE trial and other related issues to the point where many people who knew nothing about ME have been informed and have...
  18. Snowdrop

    If only we knew a time frame

    Don't know what part of the country you're in but in Ontario I was diagnosed with ME and that is the term used for billing and diagnostics. Dr. Alison Bested, a Haematologist Pathologist who works with patients seen in the Environmental Health Clinic at Women’s College Hospital, sees patients...
  19. Snowdrop

    If only we knew a time frame

    For more on the history of how we got here and why it's taken so long to even get the notice we now have see: https://www.meadvocacy.org/introducing_mary_dimmock_s_summary_thirty_years_of_disdain It is just one more difficulty with this illness that there is not an end in sight. It adds to...
  20. Snowdrop

    low manganese diet - further serious effect of Mn has been confirmed

    Well, we all do what we have to to try and make this bearable. For me, I'm putting my efforts into awareness so that more researchers might start to get interested and Dr's get educated etc. And I consider it a synergistic thing. The more people in the community that speak up the more we're...
  21. Snowdrop

    low manganese diet - further serious effect of Mn has been confirmed

    Obviously I have nothing to say regarding the book you highlight @pamojja since I don't know anything about it. Except I can say this. The title talks about Cancer. Cancer is not a monolithic thing. It is coming to light that cancers are very different from each other. So I am left...
  22. Snowdrop

    low manganese diet - further serious effect of Mn has been confirmed

    If you wish to be scientific about it you should try taking time off from any supplement (perhaps a month) and see how things are. Perhaps you are recovering anyway regardless. If you are in recovery that is a very good thing and to be thankful for. For me the problem is in suggesting...
  23. Snowdrop

    low manganese diet - further serious effect of Mn has been confirmed

    https://www.huffingtonpost.com/jennifer-raff/how-to-read-and-understand-a-scientific-paper_b_5501628.html ETA: People often tend to think things are more likely and make emotional investments in thinking certain things are true. In other words we are often not sceptical enough. I don't think...
  24. Snowdrop

    low manganese diet - further serious effect of Mn has been confirmed

    An example of correlation does not equal causation. The study in no way shows definitively that Mn is a causative agent.
  25. Snowdrop

    ME 'help'

    This so called 'help' is the FITNET trial by Esther Crawley --both the trial and EC are discussed at length here at PR and elsewhere. Here http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ is what one of our respected advocates David Tuller has said about...
  26. Snowdrop

    Researching research in USA

    Hi @1gooddog Sorry I hadn't read any of your other posts so was not sure what knowledge you did already have. Getting older with this disease is brutal. I'm getting rather tired at the moment (I'm in Toronto) so will leave you with I hope that we all see better days ahead.
  27. Snowdrop

    questions

    Hi @Galewind I'm from Toronto also. I am house/bed bound and very limited in my energy but there is @ScottTriGuy from Toronto also and he is very active as a local and National advocate for ME with http://www.millionsmissingcanada.ca/ I'll try to answer your question. There is no...
  28. Snowdrop

    Anyone heard of two siblings with ME?

    Former members here Trishrymes and MrsSowester both are ill with daughters that also have ME. There are others but can't recall all off the top of my head. Justy maybe as well. Graham and his son. Though there are also many who get ill early in life and are too ill to start families too.
  29. Snowdrop

    Researching research in USA

    One thing that people who get sick with this illness realise very early on is as you mentioned -- this is no ordinary fatigue. It might interest you to know that when first identified this illness was called ME. Changing the name was a political move. Somewhere in the depths of the many...
  30. Snowdrop

    Researching research in USA

    Well, there's this: http://forums.phoenixrising.me/index.php?forums/latest-me-cfs-research.15/ and https://www.s4me.info/threads/news-in-brief-march-2018.2754/ https://www.s4me.info/forums/science-library-read-only.67/ Not sure if that helps.