• 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

    Join the National PR Campaign for ME: Power to the Patient (P2tP)

    "Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high-profile policy maker. To be blunt, most Americans don’t know the...
  2. M

    CDC Conf Call-Follow-up Poll: Would YOU do 2-day CPET if in CDC Multi-Site Study?

    I have traveled to have the 2-day CPET done. I would not participate in a CDC Study for a 1-day test no matter what. A long term relapse compared to a 10-20 year debilitation with no understanding of what is the "Core" pathology is a "No Brainer." For me, knowing early and all about what is...
  3. M

    Did CFSAC's 'High Priority List' Illegally Bypass Public Input?

    My point is simply that the dialog that we see and hear during these hearings are not carried through in respect of the members who make recommendations on our behalf. There is a lot of work for all of the people setting around that table. It would be a kind gesture if the members earnestly...
  4. M

    Did CFSAC's 'High Priority List' Illegally Bypass Public Input?

    Sparrow, I agree with many of your thoughts here, but from a slightly different perspective. When you are trusting of any Organization, Government or otherwise, you become vulnerable to what they want you to know. For example, you state you are content having 1 out of your 58 major symptom...
  5. M

    Did CFSAC's 'High Priority List' Illegally Bypass Public Input?

    Has anyone discovered why Galien Marshall, Jr., was seated as the Chairman of the CFSAC and not Steven Krafchick as was designated when Christopher Snell ended his term of service from the Board in November of 2011? It seemed to me that on June 1, 2012 I was as stunned as Mr. Krafchick when...
  6. M

    Saying hi to the group

    I am wondering what subjects this group has discussed regarding this illness and Christian Biblical beliefs? I ask because I have a some questions that I wonder if other ME Christians may be able to offer some insight for me"
  7. M

    Medical forum making fun of ME/CFS patients

    Thanks to whomever picked up on this "nastyblogagram forum"! We wonder why we don't get anywhere with our health care......Now we know. What we do not know is if their prejudice and denial of our reality, is pure ignorance, personal bias, or part of mandated training by their Government's...
  8. M

    Article: Ottawa Conference Reports III: The Most Expensive Disorder: Clauw on the Fibromyalgia and C

    Cort, Is there any correlation between the suggestion of using anti-depressants for pain and other off-label illness with this suggestion of sickness behaviors from the You are all somatic DSM 5 Researchers? Then there was the interesting sidebar mentioned that the Pharmaceutical...
  9. M

    Article: Ottawa Conference Reports III: The Most Expensive Disorder: Clauw on the Fibromyalgia and C

    How many ways can stress be stressed for our condition? I agree with Snow Leopard regarding this business of blaming it all on the stress issue! Nobody was trying to blame stress for my success to earn 2 MBAs, while being an abandoned single parent, and working 2-3 jobs? I never...
  10. M

    Comment by 'Molly' in 'Denial 101: I don't need a cane! What am I, crippled?'

    A long while back, I found a "Teenager CFS Blog" in which the young man explained several devices he has learned to use to help him "accommodate" his misery. His one suggestion of learning to lean on this device, truly intrigued me at the time? Following my struggles to work and manage to...
  11. M

    Article: Researcher Confesses, Implicates Dr. Mikovits in Theft of Materials From WPI

    This is messy to say the least! However, professional ethics are the foremost responsibility in any professionals career. Once we cross the line with the ethics, we become subjective to be discredited in our endeavors to find the true answers we so desperately need. I will hope that Dr. Judy...
  12. M

    Is there some crazy conspiratory going on to make ME/CFSers look bad?

    Justinreilly, you must have missed my statement: "I may be most verbal to extinguish the notion of CBT & GET interventions as helpful". How do you know that I have not been working toward getting distance between ME/cfs and Wesselyian propaganda? I have also been busy fighting a...
  13. M

    Is there some crazy conspiratory going on to make ME/CFSers look bad?

    I am confused by the term "trollish behaviors"? Do you mean one how looks at the chats but then does not contribute? Or something else? Also, how does one express their disdain for the multitude of Doctors, and Researchers who are persistent to sabotage the earnest work of the truly committed...
  14. M

    Comment by 'Molly' in 'Transferall to Dr Sarah Myhill'

    It is difficult to know how much you have lost over 11 years when you consider it was essentially because a physician did not take your well-being seriously. However, if you have a chance to get the testing, you may find out something that Dr. Myhill can address to get your future ignited. It...
  15. M

    Article: Looking Forward: Dr. Peterson on ME/CFS Research, Treatment Options and Hope for the Future

    This second question is in regard to the terminology by which we become "labeled"? The key ingredient in this disorder, Dr. Peterson believes, is something called sickness behavior, which he agreed was a terrible name for a serious, biologically based problem. Sickness behavior refers to the...
  16. M

    Article: Looking Forward: Dr. Peterson on ME/CFS Research, Treatment Options and Hope for the Future

    The high level of intelligence of this ME/cfs Illness Group never ceases to astound me! It is no wonder the medical world is intimidated when their Patients are so well informed on the deepest understanding of the illness! You All are amazing? I have a question from the discussions I...
  17. M

    Comment by 'Molly' in 'Parallel Processes'

    Extremely well stated clarification of what is going on in the medical & scientific hierarchy. This persistent selfish bickering is wasting precious $$$$ and time on professional self-edification rather that using everything available to keep people from suffering for 20-30 years, or to the...
  18. M

    Comment by 'Molly' in 'ohh i caused a scene in the supermarket due to the disablity discrimation'

    Well that event may have been a lesson in how to make an "invisible person" clearly understood! So sorry for your grief and suffering afterward, but So grateful that you will not be slighted by any of the store agents the next time you shop there!!
  19. M

    Comment by 'Molly' in 'Volunteers Requested to Evaluate Physician Review Software for ME/(CFS)'

    Cort, I would be more than happy to work with you on this. Just tell me where to get started?
  20. M

    Comment by 'Molly' in 'update.. met another with ME/CFS today from the society'

    I recently had a one-on-one conversation with my "new State Senator". I presented my med list of 29 "palliative" drugs with the breakdown of the overwhelming costs. I explained that all this medication only provides for 4-6 hours of functional activity in my life, and the rest is "rest". I...
  21. M

    Comment by 'Molly' in 'New ME/CFS Blog www.cfsnovel.com/blog'

    What a "novel" idea, being up front and honest in reporting reality! Excellent post, well worth the the entertainment to re-read, and laugh at the obsessive nonsense that takes away from truly helping improve our demise. I look forward to reading more of your requests for retractions!
  22. M

    Article: What Science Giveth Science Try to Taketh Away: Science Journal Asks WPI To Retract XMRV CF

    $$$$$$ & Politics; Politics & $$$$$. Who really cares about those who suffer the misery of ME/cfs? Until......it becomes them!!
  23. M

    Comment by 'Molly' in 'Laughter, Thorns, and Roses'

    What a wonderful perspective, Dainty! I have heard myself laugh out loud a few times, each time it has caught me totally off guard, but it makes me feel alive when it happens. How much I wish I could understand, like how I could have such severe hearing loss, with 2 hearing aids, then develop...
  24. M

    Comment by 'Molly' in 'me or cfs...what do you say?'

    "Until this disease is a recognized medical and political illness, I have nothing to say." Julia, I meet 1:1 with my State Senator Thursday. If he should ask, I will follow your recommendation that I have a highly debated, unrecognized epidemic "medical and political illness" with extensive...
  25. M

    Do you tend to feel worse at a particular time of day?

    I feel horrible all day, and the "flare-ups" correlate with time to take meds, or drink water, but mostly "head down-feet up". Strangely, after 8:30 p.m. I feel great with minor flares and can go all night. The insomnia just encourages this till about 3 a.m.!
  26. M

    Comment by 'Molly' in 'Less than two days left to give ME/CFS Worldwide Patient Alliance (MCWPA) PSA's!'

    I think the second PSA is the best of all. I realize they need to be short and to the point, but, we also need to have something that compels medical professionals as well as community compassion. What really motivates a doctor's interest?
  27. M

    Comment by 'Molly' in 'I removed my blog post....'

    Nico, you list a great number of activities you enjoy. I believe there is a balance in enjoying those interests, developing new interests, and staying on top of your Illness. I find the time spent learning about the overwhelming losses in my life, I can be control of some factors and develop...
  28. M

    Article: Empty Sella Syndrome and CFS: A patient study

    Is it a Lumbar Puncture that proves the "Empty Stella" or something on the MRI?
  29. M

    Comment by 'Molly' in 'I broke my wrist'

    Carrigon, I hope you are a fast healing person with these sorts of injuries. I believe you make a good point that we who suffer chronic illness, will not get good acute medical treatment by an unbelieveing medical professional. I am grateful that the Dr's. legal fears overrode the nurses...
  30. M

    Article: NIH Steering Committee Wants Your Input!

    I agree that the quality of sleep is an issue. However, the disease is what causes the symptoms. I think focus on the Post-exertional process is an essential factor. It just seems that the lack of oxygen production, slowly takes us apart one major organ at a time. We need a direct...