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ME/CFS is a "slush diagnosis"

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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
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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

Comments

Hi Mats, I just thought I would suggest that your wife sees Prof De Meirleir in Belgium (I think he sometimes sees patients in Norway and Sweden too). He actually diagnoses ME patients with recognised diseases such as Lyme and Yersiniosis (my diagnosis) and then treats accordingly.
 
Hi Mats I'm glad to hear you want to be an advocate for your wife and others with ME in Sweden. It's certainly needed and will help fight the stigma and wrong/misinformation about ME. You might be interested to know that there is a discussion thread here on PR about whether ME is one disease or many.
 

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