Don't Downplay CFS. CFS Was ME Until The CDC Changed The Name

Many CFS patients (unless completely misdiagnosed) ARE Me Patients. CFS patients are not as severely ill with inflammation of the brain and spinal cord. Already the fMRI's at Stanford are indicating different severity levels in connection with how compromised the brain is on the images. Many illnesses have stages and severity or even types. Lupus, MS, Parkinson, ALS, cancer, etc. There are 10 different types of breast cancer but all are breast cancer. Even ME patients don't seem to have the illness come on the exact same way and the theory being it can be brought on by different viruses, toxins, illnesses, etc. or any combination of these. ME is of course inflammation of the brain and spinal cord and there is no doubt more than one way to inflame the Central Nervous System. I have been diagnosed with CFS but most definitely suffer from post exertion malaise/fatigue. I may not be able to bathe for 3 days after a doctor appointment and can take up to two weeks before getting out again. Several times I went up to two weeks without being able to bathe. But I also know that I am not bedridden or in a wheelchair and can still drive on a good day so an ME diagnosis was not given to me. Don't count us out of the ME/CFS fight because we are helping to fund documentaries and do all we can to educate and inform family, friends and our own health care providers.

Showing 4 reactions

  • Fibro '73 ME/CFS '79
    commented 2015-02-10 22:24:30 -0500
  • Fibro '73 ME/CFS '79
    tagged this with Good 2015-02-10 22:24:30 -0500
  • Mary Ann Kindel
    commented 2015-01-01 20:24:20 -0500
    If you have post exertional relapse (it sure sounds like you do), you have ME despite having a CFS diagnosis. I fall into the same category as does every other ME patient in the US, as ME is not recognized in the US and has been incorrectly mixed in with CFS. Nobody is leaving these patients behind. This advocacy project is, in fact, specifically designed for them.

    Treatment for CFS is the same as treatment for psychological illness. This is totally inappropriate for ME patients. By separating ME out, with a true ME definition, we can begin to figure out who actually has ME and who doesn’t and then get them the appropriate treatment.

    For those with milder forms of ME, the International Consensus Criteria has a category called atypical ME. This should be included in the final definition that comes out of this process. There are also many fibromyalgia patients with post exertional relapse who actually have ME. But we will never figure this out if we don’t get ME recognized, get the definition straight, and get increased research funding.
  • Fibro '73 ME/CFS '79
    published this page in Suggestion Box 2015-01-01 19:11:25 -0500