• 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. M

    ME/CFS Phone Support Group

    Yes, brain fog sucks. I am of the opinion that most of us who have that symptom have it due to brain inflammation... which might be true even if some people are dealing with Fibro only, or another type of chronic illness. A number of conditions come with this confusion and sense of constant...
  2. M

    ME/CFS Phone Support Group

    I am almost in tears, because people are being so nice! I appreciate it. I was worried I would say something that would offend. Maybe I just met all the wrong people, but I have been connected to various forums and sources of patient community almost since I first got sick, and I rarely find...
  3. M

    ME/CFS Phone Support Group

    Thank you, that was very kind. I am still awake (for now!) and was thinking more on this subject - something I've never been able to share with others because I didn't feel they would understand. The hardest part about me being ill is not actually that I am ill. The hardest part by far has been...
  4. M

    ME/CFS Phone Support Group

    Wow, great info, frog*! My mind is kind of blown! (I really could have used this for other things) I have an Android but it is older and does not follow the instructions above. Instead, it is: Settings > Call Settings > All calls > Show My Number > and click on "Hide" ------ Unfortunately I...
  5. M

    ME/CFS Phone Support Group

    One other note. I searched this number on the internet, and it is linked, among several other things, to a number of phone-in prayer circles, and homeschooling support. Now, prayer is not necessarily a bad thing. But I am not a Christian, nor will I ever become one. So I would not be comfortable...
  6. M

    ME/CFS Phone Support Group

    I am so glad for this! I have been very isolated from this disease and typing is usually hard for me too - plus sometimes you just want to hear other people's voices. A note for those who have trouble on computers, you can turn the brightness all the way down (on my Dell laptop it is Fn key +...
  7. M

    What do you think of the IOM's new name for ME/CFS? VOTE!

    But that means nothing. The "patient community" in the poll are self-reporting, without any formalized study or requirement to show diagnosis, nor to have uniform diagnostic criteria. It is already clear that people lumped into the US category of "CFS" have multiple diseases, which have been...
  8. M

    What do you think of the IOM's new name for ME/CFS? VOTE!

    I will not use anything with "Chronic Fatigue" in the title. I never have, since I became ill 5.5 years ago, and I never will. It is not a meaningful symptom, it is not measurable, and it is not distinguishable from other diseases. Moreover, it has a long-established and very negative...
  9. M

    What do you think of the IOM's new name for ME/CFS? VOTE!

    OK, I think I have one we can all get behind: *Very Serious Disease (VSD)* I personally would vote for that TODAY, if it was offered as an option. Screw trying to pin it to a cause or biomarker since there is so much more research to be done. It would never have to be changed even when we do...
  10. M

    What do you think of the IOM's new name for ME/CFS? VOTE!

    Autonomic Dysfunction NeuroImmune Disease (ADNID) Autonomic Immune Multi-Systemic Dysfunction Disease (AIMSDD) Chronic Autonomic Immune Dysfunction Disease (CAIDD)? I sooo wish they had asked the community to brainstorm and take polls first, if they were going to use such a vague and...
  11. M

    What do you think of the IOM's new name for ME/CFS? VOTE!

    I hope we all take a moment in our hearts to at least appreciate that a name change has been officially proposed. That alone is a sign of respect for patients, and for the disease, even if the name selected may be lacking. Truthfully, I would not have had as much problem with the original...
  12. M

    What do you think of the IOM's new name for ME/CFS? VOTE!

    If we're going to stick with naming it for symptoms, how about: I Feel Terrible Disease (IFTD) or Never-Ending Flu Disease (NEFD)? On some days, I might also favor Leave Me the F Alone Until You've Found a Cure, I'm Too Sick for this Endless BS Disease (LMTFAUYFACITSFTEBSD)... :) or...
  13. M

    What do you think of the IOM's new name for ME/CFS? VOTE!

    It's still just describing a symptom. I prefer a name that uses medical language, or that points to causality (although I know that's pretty hard to do at this point in our research. But it sounds really vague, and unprofessional... pretty much like "We Don't Know WTF is Wrong Disease." Maybe we...
  14. M

    A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research

    THANK YOU! This is so obvious, it has been a source of great frustration that so many years have been wasted lumping millions of people together based on one symptom - fatigue. There are adrenal people, GI/yeast people, immune/NK function people, HHV6 and other Herpes people, thyroid people...