CFIDS Research

we don't die, but we don't live either.

Welcome

This website is a collection of summaries and analyses CFIDS research articles. I hope to eventually create a somewhat complete overview of all relevant results.

For articles that I have created a text-to-speech podcast, you will find a player with the audio version of the text underneath the article.

Why yet another CFIS blog?

I can’t think of any other group of patients who rebel against the treatment the government recommends (for CFIDS in most countries this is CBT – Cognitive Behavioral Therapy – or GET – Graded Exercise Therapy).

There is one very simple reason for patients getting so angry: the recommended treatment does not work. And more and more it’s getting clear why this treatment doesn’t work – there are a lot of things going biochemically wrong.

When I have a cold, I know I have a cold. When I sprain my ankle, I know I have sprained my ankle. When I see kaleidoscopic triangles and a blind spot I know I will have a migraine (and not a brain tumor or a stroke).

Why should someone suddenly doubt my ability to feel that something is wrong with my body, just because there is no diagnostic bloodtest/biomarker (yet)? It’s not obvious from the outside that from the inside it  feels like I’m being poisoned, and that something is seriously malfunctioning when it comes to available energy.

If I could think myself better I’d be back to doing what I did before – travel, study medicine at uni, play four kinds of sports, have a job, and go out with friends  – instead of being stuck at home.

I am so very tired of reading yet another article on how people with CFIDS  are too perfectionistic, probably had a traumatic childhood,  and GET/CGT is the miracle cure. It’s such an enormous waste of  money, and the only ones helped by those types of articles are the researchers, NOT the patients.

And to make matters worse, it’s history repeating itself  – Strange collection of symptoms? Don’t know what’s wrong? Can’t find an obvious cause? Can’t test it? Then it must be somatization…

The way CFS patients are treated today used to be how MS patients trying to fight the demyelination, or Parkinsons patients balancing their dopamine were treated. Imagine doctors telling them today it’s all in their head, or that they’re not trying hard enough or that everyone gets a little tired at times.

The first CFS outbreak was in 1934.
It’s time to stop wasting money and start focusing on solid biomedical research so that there will be happy patients because of a working treatment (or maybe former-patients and even a cure?).