arrow13 Comments
  1. nina
    Jun 02 - 8:39 pm

    Yes, yes, and yes. And now what? I want a dx and a drug. I want credibility, validation, legitimacy… and education of the general population of GP’s. I am 62 years old and have grown more and more ill as the decades go by. I will be dead and there will still be no consensus, no validation that I was even ill. AND I SUFFER. Very tired of it.

    • Debbie
      Jun 03 - 6:17 pm

      I am so with you Nina. I live in a state that is know for its schools of higher learning MIT, Harvard and have gone to hear a lecture by a famous Boston doctor who let us know there are over 2,000 peer reviewed studies showing abnormalities in ME/CFS. I have been sick for 15 years and have yet to find a doctor who will even say the letters CFS, it’s getting to the point that I don’t even want to bring up the subject at office visit’s. There is something broken about our medical system when patients don’t feel comfortable having an intelligent conversation with their doctor. If it wasn’t for people like Cort bringing us much needed information I can’t imagine what life would be like for many of us.

      • Cort Johnson
        Jun 03 - 6:37 pm

        If you can help it I wouldn’t mention CFS to doctors at all…I imagine that’s impossible for most people who’ve seen alot of doctors and have that diagnosis stamped on their chart but unless you hit the right person it may hurt.

  2. jimmy
    Jun 03 - 2:13 pm

    Cort, I wrote yesterday concernig my issues with immune dysfunction, and lack of oxygen available that has nothing to do with deconditioning. I also mentioned white matter in the brain. There is a condition called cadasil or cadisil not sure on spelling. My mother and sister have it and so do I based on the fact that the disease is supposed to carry to 50% of offspring. It is a very rare small blood vessel disease with many different sub sets. I believe there is only one doctor in usa who is doing any kind of research on this disease. He is based out of university of penn. It is definitely worth a follow up. It is definitely a heriditary disease with subsets even within the family that has disease.

    • Cort Johnson
      Jun 05 - 11:43 am

      Small blood vessel disease – fascinating, Jimmy…I found a link on it – http://en.wikipedia.org/wiki/CADASIL

      How did they think to look for it in you? I see that it can cause ‘silent’ or transient strokes.

      “with approximately 85% of symptomatic individuals developing transient ischemic attacks or stroke(s).”

  3. Mark Hansen
    Jun 03 - 7:29 pm

    I know that there are at least a few of us who present with high blood pressure…not sure where this fits into the puzzle…have all of the other symptoms mentioned…

    • Cort Johnson
      Jun 05 - 11:22 am

      Yes there are..and I’m not surprised with a wiggy ANS that some people go one way and others the other…I guess it depends on which part is not working.

  4. Amy
    Jun 04 - 9:46 am

    And all the time I thought my cold hands and feet were due to poor circulation from smoking.
    I quit smoking 16 months ago and still have low blood pressure and I’m cold all the time.
    I was originally diagnosed with Fibromyalgia but it seems like the Chronic Fatigue symptoms
    are more noticeable to me. This is just one more thing that confirms it for me. It’s too bad that
    this condition isn’t taken more seriously. So many are suffering.

  5. nina
    Jun 04 - 11:45 pm

    To me, using terms that basically merely point to a symptomology, terms being used as by the medical community as definitionsss of something they made up arbitrarily because they are too dam dumb to
    listen to the patient… is wayyyy past absurd. People who have Parkinson’s are not people who simply have a tremor. Treating a tremor does not cause Parkinson’s to go into remission. It just stops the tremor. The patient stillllll will die of Parkinson’s Disease. I want an etiology and a NAME for what is killing me. My doctor treats me as if I am imagining I am suffering. I hate most doctors now. I hate a system that helps ameliorate the suffering of the rich only.

    • jimmy
      Jun 06 - 1:07 am

      Hey Cort Doctor Levine did the brain scan bout 5 years ago. Now I never new that my mother had this disease called cadisil at that time. Here is the thing cort. As a child I had cold and viruses that would go on for 2 weeks at a time even while home resting. This continued on and off through my life. At about 22 I lost all my wind capacity out of the blue. Funny I always had issues with lifting weights because my heart rate would rise to fast as apposed to a more gradual increase that jogging or other sports. I always felt heart type issues. I also notice if I walk to much or fast my chest area and stomoch feels cold. like not enough blood is getting there. I have classical m.e -cfs with all the symptoms which by the way caused kidney cancer a year and a half asg. I saw that coming. That was definitely a result of my immune system being over active in some areas and underactive in others. also nk cells 2.0 and out of that they are not even working properly.Heart issues including everything you mention in this article are my major issues along with immune system. Doctors thought I had hiv a couple of times. I really think we will be getting great answers soon. we need one or two big celebritys to help out for finances and just to get the word out. Cort if you know anyone who wants to work with me to do that I think I may be able to be successful in that area. Please let me know. Sorry for grammar ect even without disease not my strong suit. LOL

      Jimmy

  6. Aiden Burgess
    Jun 14 - 5:00 pm

    I obtained my undergraduate degree in biochemistry from
    Cornell, graduated from Medical School and was Chief Resident during my Family
    Medicine residency. Gurmar extract may help lower blood sugar and protect kidneys.
    I was first drawn to my great grandfather who died in a house
    fire, I felt I was carrying some part of his experience in me.

  7. Donna Wagner
    Aug 07 - 2:28 pm

    Hi everybody, I’m the Mom of a kid who was diagnosed with CFS at age 14, she’s entering her 5th year with this life-stealing illness. She hasn’t been able to go to school, but through sheer force of will she passed her GED got high scores on her ACTs and is starting her freshman year at a nearby university so she can live at home and I can continue to care for her. She has ALL the low blood pressure/volume symptoms described, it’s given me some ideas on things to do to help her. As you all know this illness is a maze that we have to figure out as we go, even with a great doctor. She’s been harassed by schools and others that call her lazy or malingering etc they don’t see a once vibrant healthy child suddenly NEED 20 hours of sleep every day, please keep me/us posted on ANY new info, because just this low blood volume concept has helped so much! Good luck everybody and plz understand there are MANY people that know this disease is real, it is debilitating and just because medical “professionals” don’t have easy answers or tests or treatments doesn’t make it a real and horrible disease. Thnx for letting me vent, take good care of yourselves :-)

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