12th May. International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)

In CIND are included FM (Fibromyalgia), ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and GWS (Gulf War Syndrome). See also these pages on Pinterest and Facebook. I have not really used those two, since I am not a member of either site.

There is a wealth of information about these diseases on the web, but the quality varies. The medical profession is also often quite ignorant about these chronic diseases, or rather dismissive about them. Much research is needed, but there is not much resources spent on them.

I know mostly about ME/CFS, as that is what I have had for 11 years, with the first ten years without diagnosis. That is sadly not unusual at all. Many go for years without diagnosis, treatment or help. Or even understanding or sympathy from both doctors and family and friends. ME/CFS is generally believed to be an auto-immune disease, set off by infections. A rather typical history is a series of flu or other infections that the body never really manages to get rid of. Lyme disease is probably one possible cause. Human parvo virus B19 is maybe a cause, too. That is the only infection doctors found I had had. B19 is a very common virus, that for almost all, does not cause any chronic problems. For me it started with a sudden (unknown) infection that caused inflammation of my hands and severe pain of my hands and feet. I have never gotten rid of those problems, although they vary over time, sometimes from one hour to next. Yes, it is that weird. For a few patients, ME/CFS started with a vaccination, such as the one against swine flu. The purpose of vaccinations is to carefully provoke the immune system. It is not strange it in some cases fails and the result is a chronic auto-immune condition.

The most characteristic symptom of ME/CFS is feeling ill after exertion, and not being tired, as that would be the normal reaction. Some get fever, such as 39 C, even after a short walk. I never have fever, but have in periods had a feeling of parts of my body is burning. I can take walks (at least short ones), but I can't really exercise. I avoid travelling. But some have it much worse. There are patients with ME/CFS that are bedridden all or most of the day. It can be a hellish disease.

The amount of pain ME sufferers have varies much. Quite many also has the diagnosis FM, fibromyalgia. I do not, thankfully. Both FM and ME/CFS are much more common in women than in men, although that may partly be a matter of diagnosis. The gender imbalance might also explain the lowered interest for research and finding cures. The typical onset age is 40+, but young people and even children have been diagnosed with it. Some struggle with keeping a job, but most after some years just have to give that up. To push things and just try do as much as one can worsens the condition. Training is not good advice. Pacing is essential. More about that in another post.

Brainfog is also a very typical symptom. It is a rather funny name on a not very funny problem.

Now you, dear reader, might think that many of these odd symptoms are subjective and maybe "only" is depression or some such. To that I can say that is so revealing to meet others that have many similar symptoms, symptoms that one has had for years and never met anyone before with similar histories. That is a typical experience of ME/CFS sufferers: after 5-10 years of not meeting a single person with the same bloody problems, and then, if joining a patient organisation, discover others more or less just like you. It is both releaving and, in a way, saddening. It is then not learnt subjective impressions. And it is not demons either.

Science needs to get working more on these diseases. Auto-immunity is a common health problem, but quite poorly understood. Auto-immunity can probably say very much about our immune systems. It may not be profitable to understand our immune systems better, because a better understanding might give a bigger weight to environmental factors and what we eat and drink. The individual "sensitivity" to get a buggered up immune system is probably in part due to genetic factors, but I believe not only that.

Please just give a thought if you know anyone with any of these diseases, or other chronic diseases. Or if you know anyone with chronic problems without diagnosis. It might not be depression (a serious condition in itself of course), or whining, or laziness, or hypochondria. It might be something that has a physical cause.

If you live in Sweden, RME is the organisation for ME patients, or anyone interested.

There is also a European umbrella organisation, European ME Alliance.

Now I am too tired to write anything more on this page. I hope it is readable. 🙂

Edit 2014-05-12: Clarified a few things, corrected some spelling mistakes and added a link or two.

4 Comments

  1. Thank you for taking the time to express this – I feel I understand the condition much better than I did before. I hope your health improves, or at least you find a good way to live with the symptoms.

    • Thanks for the kind comment 🙂
      I never really felt like writing about it here. Now when I kind of got over that hurdle, I might come back to it. There is a lot to be said about it. And this post is a bit bits-and-pieces.

  2. I can only echo mcnalu’s comment, above. I can imagine that this would be a difficult post for you to write but it does help me understand a little better what you have to deal with.

    And I certainly hope you keep on coping 🙂

    • Thank you for the kind comment 🙂

      Coping is the right word, but one must never give up hope there could be better help and even a cure. 🙂

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