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Published Manuscript About Extremley Severe ME/CFS

I’m happy to announce that I wrote a 23 page essay (or manuscript as it is technically called) about the experience of living with extremely severe ME/CFS and it was published in the "MDPI Journal of Medicine: Healthcare".

- Here is a link to my essay -

I wrote as much as they would allow (and more, they made an exception for the length) about all of what I perceive to be the most significant aspects of life with extremely severe ME/CFS. I go into detail about many of my experiences and challenges to try to help readers fully understand the nature of our suffering and what causes it.

I worked hard on the manuscript and put all of myself into it. I knew it was an important opportunity and did not want to take it for granted. Getting it into a format that was publishable took a lot of time but it passed peer review and is now published in a journal about extremely severe ME/CFS alongside research papers.

It is significant because many of the experiences I describe have never been understood or even known before. Doctors and researchers will be able to read what it is actually like for us to be so sick and it will hopefully inform their work. Many doctors are never actually able to see their patients. It provides significant evidence that all of the symptoms we face from ME/CFS are physical and need care and treatment - not therapy or CBT/GET. It is a peer reviewed, published manuscript which means it can be quoted as a legitimate reference in other papers, talks and documentation about ME/CFS.

Hopefully it will not only help educate the medical and scientific community about this illness but allow our experience to permeate and spread through these communities in various formats via citation.

It also gives patients a thorough document of the illness to know what they need to prepare for and if they are already severe (but able to read), knowledge that they are not alone in their experiences.

And it gives caregivers and parents explanations for what is happening to their children/clients so they can care for them better and help keep them from overdoing it or crashing. And so they know their child’s/client’s behavior is being caused by ME/CFS and is not an emotional response, character flaw or relationship dynamic. Reading this will show parents and caregivers that what they are seeing is actually a series of calculated defense tactics patients have developed to protect themselves from the onslaught of this disease. I know that when I could no longer talk or write or even communicate in any real way, my parents thought I was angry at them when in fact I was just trying to communicate in the only way I could. I explain experiences like this in depth.

It will give patients and families something to give those who don’t understand - including family, friends, doctors and psychiatrists - a legitimate medical manuscript of the experience of ME/CFS that cannot be easily refuted or denied. I wish I had something like this to give my friends when I became housebound. At least they would have had the option to educate themselves instead of just judging me.

I sincerely hope I did you all justice.

With love,


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