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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. elbosque

    Beware of Aiding in the Burial of ME!

    There is no such illness as ME/CFS. There is no billing code for it. In the USA you either bill for ME or for CFS. They are also separated by the WHO. The term ME/CFS is a political construct designed to disappear ME given the lack of success the CDC had with disappearing ME with their creation...
  2. elbosque

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    Survey says ...an overwhelming majority dislike the IOM's criteria and new name, especially amongst those that patients, physicians and researchers who have read the report and understand the implications of their recommendations. The pro IOM lobby likes to make nieve patoents think thay if...
  3. elbosque

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    It is not a seperate issue. The CAA's u critical support of the whole IOM process (not to mentiom their P2P cheerleader role) pretending to speak for patients gave a bad idea and a bad process an air of validity. They don't speak for patients. They don't speak for the expert researchers either...
  4. elbosque

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    Fourteen years later and only the facade changes.
  5. elbosque

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    S/he who pays the piper calls the tune. That not only goes for NGOs like the CAA or Pandora. That also goes for the IOM. Anyone who believes the IOM was truely undependent and unbiased of what the HHS expected is nieve. Government beaurocrats contract out their dirty work to 'expert consultants'...
  6. elbosque

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    As far as i am concerned it is all patients, whether they realize it or not. The CAA has ceased having the authority to speak for patients for a long time, since it started speaking for government beaurocrats. Perhaps the fedetal money has blinded them from their duty and mission. I h seen other...
  7. elbosque

    The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

    I am interested in finding these: "Larger‐scale studies are now being carried out to confirm and further detail these promising results." Anyone know where they are to be found? John
  8. elbosque

    Dr. Ellie Stein MEAO/Women's College Hospital Forum Sept. 15, 2010 "Why Chronic Fati

    Not new but a good resource that some may not be aware of... Dr. Ellie Stein Spoke at the MEAO/Women's College Hospital Forum on Sept. 15, 2010 "Why Chronic Fatigue Syndrome is not a Psychiatric Disease" "ME and CFS Coping and Hoping" Listen and see and print slides...
  9. elbosque

    New Paper from Dr. Eleanor Stein on Practicioner / Patient Relationship

    It is easy when we see "psychiatrist" attached to a name to write them off immediately. I can understand that reflex. But people need to realize that not every psychiatrist or psychologist is out to make ME as part of their physiological or psychiatric treatments turf. The audience for this...
  10. elbosque

    New Paper from Dr. Eleanor Stein on Practicioner / Patient Relationship

    I am not one of her patients but I am sure GET & CBT is not her method of operation.
  11. elbosque

    New Paper from Dr. Eleanor Stein on Practicioner / Patient Relationship

    Here is a new paper from Canadian Psychiatrist Dr. Eleanor Stein... Email from Dr Eleanor Stein This paper, 3 years in the writing, is a contribution towards understanding and improving the notoriously problematic therapeutic relationships between patients with ME/CFS and health care...
  12. elbosque

    New Chronic Illness Clinic in Vancouver

    The book is not finished on the clinic and I do not think it should be so easily discarded on the trash heap. For the 100,000s of people in Canada with ME, the fact that it is getting started at all is a sign of hope and a sign of recognition of our illness where many MDs and other health care...
  13. elbosque

    Sept 10: CDC 'conference call' including Unger and Lipkin

    Will this phone number work for those outside of the USA? I know I tried to call into another conference call some time ago and got a message that the number was not available for Canadian callers.
  14. elbosque

    Complex Chronic Disease Clinic Appoints Medical Director

    For recommendations on an MD or someone who can help you find a good MD, I recommend that you contact Lydia at the National ME/FM Action Network.
  15. elbosque

    Horrifying article in Sunday Times

    I am guessing that the backlash has not hurt his career. I am also not so naive to think that the insurance industry has nothing to do in promoting him and his absurd "science". This could be seen as nothing more than an attempt to relaunch his product. I think ignoring him personally and...
  16. elbosque

    Spanish HIV Experts Give Aid to ME/CFS

    I echo this gratitude of a simple explanation. What i did understand is one of the things my ME/CFS doctor used to help confirm my diagnosis of ME/CFS two years ago. Back then my MD said my CD4 / CD8 ratio showed that my immune system was chronically activated. In successive tests after...
  17. elbosque

    Leaky Gut, IBS, etc & GMOs

    Do you have gastrointestinal problems or know someone that does? If so, you definitely need to watch this video…it could reveal the reason why you are suffering and offer important steps you can take.We’re talking about genetically engineered corn that creates it’s own insecticide. The toxin...
  18. elbosque

    The Chronic Complex Diseases Study - Vancouver, Canada

    I guess I should have been more specific. I just assume that people know that there is more than one CDC in the world. Canada has a federal CDC and the province of BC also has its own CDC. Kati or the others can correct me. I believe that the CCD (Complex Chronic Disease) Centre in BC was...
  19. elbosque

    Our Stories of Stigma and Support from Providers and Others

    I am from Canada. Being sick over 3 years with diagnosed ME/CFS, I can tell you that not only do most health professionals not know anything about ME/CFS, many refuse to believe that it even exists. I have one doctor who specializes in treating ME/CFS & FM. I am luck I live relatively near by...
  20. elbosque

    The Chronic Complex Diseases Study - Vancouver, Canada

    Ember, that is my understanding as well. Shoshana told me their hypothesis is an infectious agent is causing ME/CFS and they have new processes by which they hope to isolate it. I feel confident their intentions are good. Believe me I have dealt with enough medical professionals to get a feel...
  21. elbosque

    The Chronic Complex Diseases Study - Vancouver, Canada

    This study just recently started. I am enrolled in it as an ME/CFS patient. They are still looking for healthy subjects who do not live with and who are unrelated to ill participants. There will be 100 subjects in the study - 25 from each group...
  22. elbosque

    New Video on ME/CFS: "MIND THE ABYSS"

    That is an excellent video. I did have to watch it in pieces as the visual effects in some parts had my head spinning. I posted it up on my Facebook with that one word of warning. It is a great video to share with friends and family.
  23. elbosque

    Immune suppressants?

    I didn't have any positive outcomes on imunovir. I take substantial amounts ibuprofin for pain and inflamation. But I don't think that impacts the immune system. I have now been on this compounded form of vitamin B12 which I injected once per week which can make me sick for a day but then...
  24. elbosque

    What should I expect from immunovir (side effects)?

    I did imunovir for a while. The worst side affect i had was having to get up 3-4 times a night to go to the washroom. Test showed imunovir had no impact on my immune system, so I was taken off it. My doctor said that tends to be the case in about 50% of patients he has treated with it. I...
  25. elbosque

    Sinus Infections Linked to Fatigue

    Same here. I never had sinus problems until I got sick. I was diagnosed with sleep apnea almost a year before i got a ME/CFS diagnosis. I use a very expensive CPAP machine to treat my sleep apnea. I have to do a sinus rinse 2-3 times per day. Plus, I use Flonase and nightime sinus to keep...
  26. elbosque

    How do our chances compare to MS?

    I think we need to be aware that MS and ME/CFS have widely varying degrees of incapacitation that vary from patient to patient and that also vary from time to time for each patient I've a friend whose MS has steadily advanced to the place where he in now in a wheel chair and needs help with...
  27. elbosque

    Does anyone else take ages to heal from cuts'n'bruises?

    I noticed this after I got sick. The other thing is that I became such a klutz that i was always getting burns and cuts. I am not as sick as I was before, but I am still a klutz and injuries still seem to take much longer to heal than before I got ME/CFS.
  28. elbosque

    CFS and vaccination - secret papers deny funding.

    I wish there was a way to take it out of overdrive. I was on one immune modulator for over 3 months. After more blood work showed no change to my immune activation, I was taken off it. My doctor continues to remind me not to take any vaccines. I find it interesting that I have not gotten a...