ME / CFS is a "slush diagnosis"

Discussion in 'Treatment' started by Mats Lindström, Jul 12, 2015.

  1. Mats Lindström

    Mats Lindström Active Member

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    Imagine you suffer from a disease that makes you have flu symptoms, every day, year in and year out. You are going toup to the health center and a doctor sitting and looking in another direction. He/she does not understand why you are sick. You have received a "slush diagnosis". They have decide that you have ME/CFS with a limited number of samples which sometimes have little evidence value. There are more tests to take, but few have skills enough to know which samples are relevant to take.

    Some believe that you are mentally ill. Most doctors do not even know what it is for the disease you have. Most often confuses those diagnosed with depression and others. You go home, get a letter from the Social Insurance Agency which require you to come on a visit. Your employer is not interested, they have been tired long ago as a long-term sick just creates problems. You have also received a letter from the Employment Service. It is now time to consider you for other employment. Maybe there's a job you can do with your "disability". You're used to want more than you can handle and head there. The officer understands quite soon that you actually are not able to do a thing. You will be sent home again.

    You visit the doctor again, maybe after a couple of months. The doctor seems stressed and do not know what he/she should say, the doctor does not know what you are suffering from. Could it be psychological? It must in any case be tested. You get a referral to a psychologist. The week after, you use your last forces to bring you to the psychologist. The psychologist talks to think positively and just do things that you enjoy, set goals for each day and happy to do little more than what you feel you can manage, to develop yourself. You might even get a CD with soft music, or a voice talking about how to "scan your body" to learn to know it better. Total final are you home and are feeling disappointing and sad. You try to think positive, but you realize there is no one in the world who understands you. You're sick - for real! No one understands you. Perhaps your husband/wife if you have someone who dried remain at your side.

    Everything is repeated periodically. You're visiting the health center and maybe get to meet a new doctor. Again, you sit there, no question how you feel. Hopefully you get your prescription, and extended sick leave. You go home, lie down in your bed, put in earplugs and has obviously seen that the roller blind is pulled down and the light is off. How is your life like, day in and day out. Your eventual family suffers obvious, but it bothered you barely, for your heart just by yourself. Years go by and nothing happens. No one comes up with new ideas. You can lie there and wither away. You may try to endure everyday, weekends, summer festivals in your bed, while life runs as usual for everyone else.

    ME / CFS is a "slush diagnosis" because that health care can not ascertain which diseases you have. They use simply a poor exclusion method. Obviously, you have multiple diseases and stress. The problem is that those diagnosed rarely have exactly the same loads. It is enough with one, or two heavy loads for ME/CFS should be developed. Most are likely to have more loads than that. Most people who are diagnosed with ME/CFS can be treated medically - absolutely! I have read virtually all studies available on ME / CFS and shown in numerous posts on my website that there are solutions. There are a variety of examples in which the majority feel significantly better for various therapies. Still, the healthcare barely do anything.
    I will shortly publish a book in which I will take up the Swedish healthcare total failure in terms of the ability to both respond to and treat a large group of seriously ill with a "slush diagnosis". Most are treatable. It's all about the will and knowledge! I as well-informed layman is willing to contribute to it, if someone wants to listen.

    Mats Lindström
    Sweden
     
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  2. Edie

    Edie Active Member

    Hi MATS. Your story was my story until I sought the help of a Naturopath Doctor,
    here in Canada. Though I'm not totally cured, my quality of life has improved by 80% because he treated me for everything he found had gone wrong as a consequence of this illness. A book called "THE FATIGUE AND FIBROMYALGIA SOLUTION" by DR. JACOB TEITELBAUM MD. would be of great help to you and your Doctor. Let us know how you're doing in the future. Watch for my story under the care of an ND. coming soon on Health Rising.
     
    Merida likes this.
  3. Folk

    Folk Well-Known Member

    According to the last rituximab trial published, and if the bigger trial shows similar results then your theory is wrong.

    ME/CFS might still englobate a variety of diseases, but not such a big variety. Or they might just be treated the same way, which in the end is what matters.

    Is your book, by any chance, going to be free?
     
  4. Mats Lindström

    Mats Lindström Active Member

    @Folk
    I do not think my theory is wrong. I'm very interested in the rituximab study in Norway. But, what I understand they haven't, in this study, with 152 patients (where 20 are placebo) selected patients, if you compare with the last study. Dr. Fluge etc do not think that 2/3 will be better. They hope that 50% gets better. It does not relieve that several may have other loads in combination with autoimmunity. I would guess that about half do not have autoimmune disease.
     
    Merida likes this.
  5. Merida

    Merida Well-Known Member

    Mats,
    Yes, this whole scenario is so discouraging. Yes, watching others live life, while every part of daily living is an effort for us.
    I think personal history of the development of CFS is critical, as well as family history. Thank you for contributing your ideas and thoughts.
     
    Mats Lindström likes this.
  6. Merida

    Merida Well-Known Member

    Folk,
    I think that a big part of the 'problem' is that doctors give this CFS ( or FM dx) without ever doing the exhaustive studies that are needed to determine if the thyroid is truly normal, if all parts of the immune system are normal, if we might have one of the over 50 MRI negative myelopathies. And what about the potentially dozens of stealthy, infective organisms - maybe some that haven't even been identified yet? Also, what about blood flow in the neck? Haven't met anyone who has had an MR angiogram. What about spinal fluid flow from the base of the brain into neck? You need a CINE MRI flow study for that.
    Gee, then there is the question of mitochondrial/ metabolic abnormalities.

    This is truly a nightmare of possibilities - with a price tag of many thousands of dollars to start exploring all of it. So, all we have right now are theories, based on some evidence. Nothing is even close to 100%. Geez. That makes me feel discouraged. Still, I think it is valuable that patients keep thinking and sharing. Who knows????
     
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  7. Folk

    Folk Well-Known Member

    Ok, so, again, is your book going to be free? (or free PDF download)
     
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  8. Merida

    Merida Well-Known Member

    No free book, but I have a free, published article - 2008, Fibromyalgia Frontiers: " Pelvic and Sacral Instability: A Facet of Fibromyalgia? " Note the question mark :). Nevertheless, a heavily referenced article from many disciplines - including neurosurgical research. Still think that the pelvis holds importance information, and may be a key to the reason why women significantly out number men in the diagnoses of CFS/FM.
     
    Mats Lindström likes this.
  9. Merida

    Merida Well-Known Member

    Gee, all this discussion as spurred me on to look more carefully at things. In particular, I have always been interested in how structual anomalies ( like scoliosis, spina bifida occulta, vertebral anomalies, etc) might be linked to the immune system. Well, well . . .I found a book, 1976, edited by some Harvard researchers, David H. Katz/Baruj Benacerraf that comments the region on chromosome 6 that codes for HLA antigens is regionally close to the loci that control spinal development, and contribute to spina bifida occulta and other spinal defects !!!!!!
    What !!!! Also related to genes on chromosome 6 : ALS, autoimmune Addison disease, celiac disease, Ehlers-Danlos syndrome, Hashimoto thyroiditis, MS, and much more !! ( from the NIH site : ghr.nlm.nih.gov ).

    Has anyone else done 23andMe ?? I did it years ago and chromosome 6 is very interesting for me. Even though I am 99.8% European, I have markers for Ashkenazi and sub-Saharan African ancestry right next to each other on chromosome 6. Hmmm
     
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  10. Folk

    Folk Well-Known Member

    Tag team
     
    Mats Lindström likes this.
  11. Merida

    Merida Well-Known Member

    Folk - No understand "Tag Team?"
     
    Mats Lindström likes this.
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