• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Kati

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    What if the doctor billed for a specific billing code that has not been approved for a specific disease such as ours, and what if he could not bill for that code because he is not a specialist, he is legally a general practitioner? That would be a question of eligibility to that billing code...
  2. Kati

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    If he could have, he would have retained a lawyer, etc. But he agreed with the college’s finding.
  3. Kati

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    This was beyond charting. There were ethical issues, privacy issues, overcharging issues and more. And he admitted to that.
  4. Kati

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    For the grey area of practice, there are guidelines that are suggested. For instance, here are the recommendations for physicians in regards to the use of cannabis for medical use: https://cpsbc.ca/site-search?search_api_multi_fulltext=Cannabis Telemedicine...
  5. Kati

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    Where are the peer-reviewed publications? And I am not saying there was nothing good in Dr Hyde. I am saying that the investigation of the college were fair and seemingly accurate because he agreed with its results. i am so very sorry. We deserve competent care. It starts with building...
  6. Kati

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    I defend the right to competent care based on evidence and science. I also believe all professionals should follow guidelines and standards for safe and ethical care. We are in desperate need for science here, validated biomarkers that are based on consensus rather than only available from one...
  7. Kati

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    Here is a publication from the College of physicians of Ontario about professionalism: https://www.cpso.on.ca/admin/CPSO/media/Documents/physician/polices-and-guidance/practice-guide/practice-guide.pdf the proof of the burden is explained in detail. There would be other concerns I am sure, and...
  8. Kati

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    Take a good look at the charges- they are not subjective charges. It can all be proven. Then, at the bottom, this: Dr Hydes pleads guilty to the charges. And while many patients felt they had a great doctor, this doctor did not obey the rules of his profession, such as maintain adequate...
  9. Kati

    My experiement with Nancy Klimas' protocol- Etanercept and Mifepristone

    Here would be the reasons why Dr Klimas did not answer you: 1) She is not your doctor. She is not responsible for you. She doesn’t know your case. She hasn ‘t prescribed this medication to you. It would be medical malpractice if she encouragend patients to take dangerous medication on their own...
  10. Kati

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

    Diet would not affect something like this: http://jaha.ahajournals.org/content/7/8/e008351 Which by the way, is hot off the press.
  11. Kati

    Seeking information on long-term outcomes with Dr. Kaufman

    And there are a number of us who are not celiac and do not nee to worry about gluten. This is not a slam dunk celiac deal with ME. You seem very keen to wanting to provide reading for me to get educated. I am good in that department thank you. i know my brocoli. I also know my tomatoes.:rofl...
  12. Kati

    Seeking information on long-term outcomes with Dr. Kaufman

    So thankful for Dr K for not buying into everyone’s pet theories without checking them out for himself and without checking his patients from head to toe individually. He is a no nonsense kind of guy. Only science will determine what is helpful and what is not. We must have different disease...
  13. Kati

    Seeking information on long-term outcomes with Dr. Kaufman

    This is an interesting statement, considering that he has been involved with the MTHFR study from OMI which has funded by OMf. The study is unpublished and i am not invovled in any way with this study. But i remember it was discussed by OMF a couple of years ago. You seem to suggest that Dr K...
  14. Kati

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

    Placebo response would be my first guess. It usually takes 30 minutes for a drug to be absorbed when taken orally. That may make you mad for me to suggest this, and I apologize. It’s just that many of us have tried supplementation and have not found instant improvement upon popping the pill or...
  15. Kati

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

    Dear @Learner1 drs Davis and Hanson’s children are still sick. At least one of them is tube fed and unable to communicate. If it was this easy, we’d have people leaving this forum and living their lives. It is important in my eyes that patients hear about the lack of evidence of diet influence...
  16. Kati

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

    I think the recommendations of the dietician was eat a balanced diet. Eat food of all food groups. Then Dr Davis previously said that diet is not likely to cure ME. I wish people stopped foicusing so much on food. This is not a nutritional problem. It has been made very clear.
  17. Kati

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

    He's going to have to make up his mind. Where did his enterovirus theory go?
  18. Kati

    Rituximab Phase III - Negative result

    Thank you for sharing this news, despite it being a negative study. I would also like to thank the research subjects who submitted to either receiving the drug or the placebo. I would like to thank Drs Fluge and Mella for giving it a try. I hope they will continue researching us. Only through...
  19. Kati

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    That’s interesting, as they seem to backtrack on the issue. Wasn’t it David Tuller who made a FOI asking Bristol University whether they have had any kind of complaint of harrassement towards any of their staff, and they said no?
  20. Kati

    Prof James Coyne exposing Dutch Health Council misinforming Dutch Parliament

    Thank you Lou. This is concerning. Let us know what happens next.
  21. Kati

    How do you market a disease to researchers?

    When you mention mind-body connection, you are basically saying that the mind ( our thoughts and emotions) are causing disease. It is basically a nice way to say “it’s psychosomatic”. Too many physicians are keen to go that route, and profit from interventions based on the psyche, including...
  22. Kati

    Do you get body-part-specific PEM?

    Thank you for explaining. i am very glad you got a PCP that looks over things for you. i am sorry you could not ask all the questions you needed to ask the neuro, they were very reasonable questions especially considering the fact you were told on the phone. Personally during the course of my...
  23. Kati

    Do you get body-part-specific PEM?

    Hi @nettle_tea I am so very sorry you are struggling with just getting a clear diagnosis after over 2 years of illness, despite being significantly limited in your activity and mobility. I wonder whether the MRI you had focused on the lower spine or was it for your brain too? Secondly, if...
  24. Kati

    Brain Imaging study needs funding

    Michael VanElzakker (Boston) and his team deserve to be funded! Every dollar counts!
  25. Kati

    OMF progress

    @Janet Dafoe (Rose49) thank you so much for the snippets of what life is like at Stanford. Every snippet is important to maintain hope. Science and funding process is so slow. There seems to be no sense of,urgency unless you are either a patient or a family member- but there are a few exceptions...
  26. Kati

    MRI shows no signs of MS, but...

    Hi @nettle_tea, i am so very sorry you are going throuh this. You do not mention in your post whether you have been seen by a neurologist specializing in MS as it sounds like your GP ordered the imaging. It would be worthwile in my mind that you get referred in neurology or even simply talking...
  27. Kati

    What would be considered Normal level of Aldosterone?

    Hi @Peyt seemingly you are within range for aldosterone, and it would be abnormal if it were over 30. I haven’t looked particularily into this one hormone, however since the normal range seems so wide, it could vary through the day or from the amount of salt you ingest. A quick google search...
  28. Kati

    11/2/2017 at 3:0O pm (EST) - CDC ME/CFS Stakeholder Conference Call

    Hi @Inester. To sum it all, it was business as usual. Things are moving very very slowly in the ME world especially at the government level. Dr Unger mentioned there will be a talk at a national public health conference where Dr Lily Chu, Dr Montoya and her will speak, I believe it is sometime...
  29. Kati

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    @Aspie Lymie XMRV was a lab contaminant and the WPPO paper from Lombardi has been retracted. Should there be labs testing for XMRV, it would be fraudulent and irresponsible to take money from patients in order to test and give a result from that.