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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. LazyLizard

    Tania Puts In Sterling Effort At The 6th Australian Health and Research Medical Congress.

    Sensational effort. What a good idea. And all by her own initiative. :thumbsup:
  2. LazyLizard

    Would you take Rituximab

    I voted yes. I am sick and desperate. Alternative therapies, diets and protocols didn't work for me. They cost me a fair bit and on some occasions I felt worse. Dashed hope every time. I need my life back.
  3. LazyLizard

    The Work Poll

    Financially my story is similar to Cort. As a telecoms engineer I didn't have to worry about money before CFS/ME hit me. (80-90k pa) Now I am at 5-10k pa fixing PCs in the neighborhood when I have a good day. Massive expenses on tests, treatments and potions on top of that. If we ever have kids...
  4. LazyLizard

    Cognitive Therapy

    "... I'd actually be irritated that they didn't stick to their quackery, and let us revel in the absurdity of it for a little longer." I just love this sentence. Nicely said. Their absurdity does, sadly, have an entertaining effect. ----------------------- The PACE trial has done us a...
  5. LazyLizard

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Here's my outlook for the CFS/ME future: Within 2-3 months research teams will jump on Rituximab, run bigger studies to confirm the effectiveness of the drug and how to prevent relapses. It will also point us towards the safest way to deal with possible side effects so we won't have to worry...
  6. LazyLizard

    Chase Community Giving - what other successful groups are doing

    I was thinking the same. Jewish families (esp. orthodox) are huge. I also thought these communities would actively support each other or a cause. So they have something we don't have. They might simply be better at grabbing these funds and it is up to Chase to decide if they want to give that...
  7. LazyLizard

    Chase: We're in 11th place (40,000$), need 86 more votes for 10th place (100,000$)

    Yeah! Why is it so hard to get Facebook friends to vote in the Chase? That's all I have ever asked of anyone. It must seem too complicated and un-cool or something. I have written personal messages with a plea and explanation. Result: Completely ignored the request. All of them!
  8. LazyLizard

    time for a winge!!!

    Hi Heaps! I just responded on the insomnia thread and do it again here because it's my top topic this morning 5am. I am on a roll... I just want to say that I can relate to the winging about being up at night. I gotten so used to getting up between 1-2am after not fallin asleep for an hour or...
  9. LazyLizard

    Insomnia

    They always seem to have something they think is the best. But it's usually not what's on your shopping list and if you insist you're junkie. I forgot to mention that I tried melantonin some time ago with some success but haven't reordered it because it's expensive and expires soonish...
  10. LazyLizard

    Insomnia

    Exactly my thoughts, Moon! I reckon when the immune issues are fixed sleep will improve. But I can't help trying to fix my sleep anyway so here's my med collection: Clonazepam (Klonopin) .5mg works best and such a nice feel. (which is why it is controlled) Aussie doctors are pretty...
  11. LazyLizard

    Irritability / frustration

    Oh yes, full on! Comes and goes. And at this very moment very angry - with the world. After 10yrs of ME/CFS I gotten so bitter and disappointed that every second news report makes me angry. Anyone who is healthy and earns more than the disability support pension is perceived as flaunting and...
  12. LazyLizard

    My Antiretroviral Trial

    Fantastic stuff! Fantastic stuff! Did you have an XMRV test done? I'll check back soon.
  13. LazyLizard

    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    I so fully fit in here, it's not funny. Too much noise, light etc. Ppl speaking too fast and too loud. They have too much energy. I spend heaps of time just lying on the bed alone all quiet gazing into the distance. This helps me re-energise more than anything. The noise of the ducted heating is...
  14. LazyLizard

    Article: Magic wand anyone?

    Hi Mark, Hi Spitfire, Thanks for the thoughts and yes, "LazyLizard" is probably not a good name in a CFS form. I do give people the option to bring their PCs to me. Some do, thats fine. Also, I keep up a nice facade of how busy I am and I "squeeeeeeze" in clients at 2.30pm when in reality I...
  15. LazyLizard

    Article: Magic wand anyone?

    Hi Spitfire! Had a look at your web site. Look awesome. Your are very good at jewelry and the website is great too. I found your post interesting because of the business aspect with CFS. I pretty much violently agree with everything you and markmc said. I myself was an IT guy working overseas...
  16. LazyLizard

    Comment by 'LazyLizard' in 'Eyes Wide Shut'

    Hi, Just a note from me too, knowing you'll hear this rather than read it. I'd like to be able to adjust the computer voice to sound male, middle-aged, European accented and a little exhausted for realism. Well, maybe in the next version of Deskbot. I am not as severely affected by ME but it...
  17. LazyLizard

    Comment by 'LazyLizard' in 'Alone in a Sea of People'

    Hi Carrigon, I am on the same page with what you say. You can purely logically get to the conclusion that you had enough without being depressed. I guess this is something doctors and psychiatrists wouldn't accept either. Who's surprised! You've done right putting it all out here like it is. No...
  18. LazyLizard

    Article: A Visit to Dr. Peterson: Part IV: Spinal Tap, Costs and On the Road Again by Corinne

    Hi, just a note to say thanks. Well written and interesting story. A must read for PWC. The accompanying cartoon drawing is a bit scary though.
  19. LazyLizard

    ? for those who feel "totally healthy" out of the blue

    Same here Oh yes! Same here. Sudden miraculous improvement for a few hours or days without being able to nail it what triggered it. What can trigger it for me is a weather change from cold, wet, windy to warm and dry or a very emotional positive feeling or certain foods. But with the...
  20. LazyLizard

    Simon Wessely's latest

    This has occured to me too. To study medicine you would often come from a well-off background because it needs financial support. You may seek status and financial rewards by studying years longer than other disciplines. To support "complicated" CFS patients and part with mainstream...
  21. LazyLizard

    Where We Stand (mid-August 2009)

    My compliments for organizing this treatment. It seems all well planned and documented. Following patients through a novel, experimental treatment plan with the results for us to see is wonderful. Thanks!