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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. J

    Nov. 2011 CFSAC Videos Posted

    You are doing the opposite of what you say and just acted it out. The solution would be to educate on ME. Changing codes will not matter. The disease definitions determine the dx and treatment and the literature on CFS determines the evidence base used. Patients have wanted to get rid of a CFS...
  2. J

    Nov. 2011 CFSAC Videos Posted

    We should trust and work together, when (you) these groups en masse have banned and censored and tried to change federal policy behind our backs.
  3. J

    Nov. 2011 CFSAC Videos Posted

    Bob, These same pple go all the time, which is their prerogative, but they should not monopolize everything. This is what phone testimony is for as many are too sick to attend. CFSAC advertised that they would prioritize those who have not spoken. They did not. These same people were given...
  4. J

    Nov. 2011 CFSAC Videos Posted

    Posting testimony doesn't do much good. They claimed they would give priority to new people who had not commented before and it was ALL the same Pandora, Coalition pple, Mary Schweitzer, who has spoken at every meeting since I can remember. I had a spot reserved by phone and they said they...
  5. J

    Letter to NCHS

    Just for clarification, he is a licensed physician and uses the same ICD and CPT codes for dx, reimbursement and benefits and works in a clinic with medical doctors where diagnoses often are treated in tandem. The system and applications are still the same and have the same ramifications.
  6. J

    Marly Silverman nominated for Jewish Heroes Award--possible $25,000 or PANDORA

    This is sad. Being involved in changing federal policy behind the backs of the majority of the patient community, which will eliminate a legitimate diagnosis. Hardly deserves an award.
  7. J

    Medical School lists CFS as a mental disorder

    Well it can be. Reality check. Even Fukuda def can include pts with psych problems. CFS does not strictly define a neurological illness and does NOT describe ME. So if this Coalition proposal goes through, all will be inclusive. So get used to it.
  8. J

    Next CFSAC meeting date has been announced for November 8, 2011

    Either way, CFS fits nicely. If this proposal goes through, ME will go along with it.
  9. J

    Guess we (ME patients) lost

    Sorry, nothing new. The Coalition 4 ME/CFS apparently won. We can't even go to Congress. This was foisted on us by the so-called patient groups. Same mixed cohorts. Garbage in-garbage out. Keep writing petitions for fairness and apologies. ------- NIH grant proposal...
  10. J

    (Anon poll) How many ME/CFS+related groups have you voted for in ChaseCommunityGiving

    Aileen, I agree with what you are saying and understand the problems with the terminology and confusion. You have to call it something! But you try to sort it out and solve it, not make it worse. I am referring to the groups of a small # of unqualified patients/lay pple who tried to influence...
  11. J

    Next CFSAC meeting date has been announced for November 8, 2011

    In medicine it is not about deciding or which you prefer, it is about what you have. If you do not have an accurate dx then you are sunk and will not get proper treatment. We have proven that. ME patients will not get proper care with a CFS dx. But these people have taken it upon themselves to...
  12. J

    Next CFSAC meeting date has been announced for November 8, 2011

    Ember, yes, sorry, that is what I meant and you captured the different connotation. Just happy hour and a few glasses of wine...
  13. J

    Next CFSAC meeting date has been announced for November 8, 2011

    Moderator: Insulting and inflammatory post removed.
  14. J

    Next CFSAC meeting date has been announced for November 8, 2011

    Well if the definition is bad enough it is NOT ME. this is the case. You are saying it is supposed to be ME - but it is not. The ORIGiNAL CFS definition did not really describe ME, so really never was. Definitions have to describe or match what it is they are referring to. None of the CFS...
  15. J

    Next CFSAC meeting date has been announced for November 8, 2011

    That's OK Ember. You are correct. It may have started as an update but then took it to the mat. It clearly rejects ME/CFS and the CCC was an ME/CFS def.
  16. J

    Next CFSAC meeting date has been announced for November 8, 2011

    "What I was clarifying was that it is not an update of an ME definition. It is actually an update of an ME/CFS definition. It is Step 2 of Plan B. And it is based on research and clinical experience of ME/CFS experts from around the world." They updated the ME/CFS def and abandoned fatigue and...
  17. J

    Next CFSAC meeting date has been announced for November 8, 2011

    My husband actually wrote. Gotta hand it to him. He explains it very well. ----- November 17, 2011 Donna Pickett RHIA, MPH Medical Classification Administrator National Center for Health Statistics -? CDC 3311 Toledo Road Hyattsville, MD 20782 Via email: Donna Pickett <dfp4@cdc.gov>...
  18. J

    Next CFSAC meeting date has been announced for November 8, 2011

    Wrong. ME-ICC is an ME definition. The Coalition misinterpreted and misrepresented this (also). It clearly rejects the use of ME or fatigue or the combination term using fatigue; thus ME/CFS. The ME-ICC is the antithesis of this proposal to make them the same via ICD codes.
  19. J

    Next CFSAC meeting date has been announced for November 8, 2011

    But it has been viewed as or combined with CFS. We have CDC separating them and the ME-ICC, an updated ME def, so we go backwards and combine them officially via ICD codes. So we wonder why there is no progress, take what has not worked for the past 20 yrs and make it official policy...
  20. J

    Letter to NCHS

    Yes, my husband actually responded! He does not get involved in advocacy per se but this has crossed the line into the medical arena and can affect patient diagnosis, treatment, reimbursement and disability issues. Today it the deadline for comment to NCHS. November 17, 2011 Donna...
  21. J

    (Anon poll) How many ME/CFS+related groups have you voted for in ChaseCommunityGiving

    I will not vote for or support ME/CFS groups. There is no such thing as ME/CFS. ME/CFS is a made up term that can mean anything. Research on ME/CFS will be the same mixed cohorts or worse and will yield the same meaningless conflicting results, and for which there will be no biomarkers or...
  22. J

    Next CFSAC meeting date has been announced for November 8, 2011

    Andrew, If they do not have ME or fit the ME-ICC criteria then they can have CFS if they meet the criteria. CFS is very harmful as a dx for those with ME. We just want ME recognized as separate from CFS, which will not happen if they are connected and coded as the same ICD code.
  23. J

    Children and ME

    For children with ME, a CFS diagnosis can be disastrous. Not only does the general public not get it, but if you look at the various department of social services guidelines for recognizing abuse and neglect, it includes many of the symptoms associated with or even used to define CFS. Major red...
  24. J

    Next CFSAC meeting date has been announced for November 8, 2011

    ME is diagnosed. And the point should be to educate on ME, not keep it mixed in with CFS as this proposal does. Suddenly you want to redefine CFS. So sure, go ahead. But do not take ME down the fatigue black hole as you do it. Mary wrote - "Regarding ME - it is in the ICD-9-CM index as...
  25. J

    Next CFSAC meeting date has been announced for November 8, 2011

    Think issues should have been clarified beforehand. If this proposal does go through, ME will not exist as a diagnosis so ME definitions will not apply.
  26. J

    Sample letter to NCHS

    Sample letter to NCHS Dear Sir/Madam: I am an ME patient and have an ME diagnosis or - as a patient/family member/stakeholder in this matter, I strongly object to the combination of ME and CFS under ICD code G93.3. NCHS has coded ME and CFS accurately and separately in the original...
  27. J

    Next CFSAC meeting date has been announced for November 8, 2011

    Hijacking threads? They hijacked an illness via misinformation. There are ICD codes for ME and planned for ICD-10-CM.
  28. J

    Next CFSAC meeting date has been announced for November 8, 2011

    The US still uses iCD-9. ME is coded as 323.9 under "6. Diseases of the Nervous System and Sense Organs(320-389); Inflammatory Diseases of the Central Nervous System(320-326)."
  29. J

    Next CFSAC meeting date has been announced for November 8, 2011

    It would be difficult to respond to this politely.
  30. J

    Next CFSAC meeting date has been announced for November 8, 2011

    "The Incline cohort is the cohort that was assigned the CFS name. It defines the illness. Any other cohort that does not match this is not a real CFS cohort." It was assigned the name but CFS did NOT accurately define the illness. "Wrong again. Both the Canadian and International definitions...