Welcome to my fragmented.ME blog and advocacy site, started in 2019.
I will begin with a little introductory bit about me. First, and probably most importantly, I have ME, fibromyalgia, chronic migraine, TMJ, MCS, and lots of other ME related illnesses. I have been ill since 1984. At first I was mild, then moderate, and now moderately severe and sadly moving ever closer to very severe. So when I talk and write about these conditions and related ideas, I am coming from the perspective of the ‘patient’ who experiences the illness.
Designing websites and content is not something new for me, but this is a complete new idea (2019). The site will be an extension of my ever growing Instagram Page and will expand on topics I cover there. Yet now (2022), I am happy to say, fragmented.ME has taken on a life of its own.
In light of my advocacy success on Instagram, the things that I will write about here, in much more detail than is possible on Instagram, will include, but are not limited to, some of the ideas that I also share on that platform. Furthermore, I am also happy to accept your suggestions on things you would like me to write about, just contact me.
I must point out that fragmented.ME is not a charity and I will not be asking you to put your hands in your pockets, unless you want to show appreciation for what I write and to buy ME a latte … 😉 …
Or, more importantly, you maybe want to help, fund my ME treatment, presently (2019) being privately funded and provided by the Yorkshire Fatigue Clinic. This funding was originally refused by my local commissioning group because they felt it could be provided in house at my local surgery, but it really hasn’t been and the care / support I received was lacking and below par. So, I am now (2019) paying for it myself or more correctly my husband is paying for it as I am too sick to earn an income.
You can read more about this by going to ‘fund my healing journey …’ page.
* funding update:
I am presently (2021) on a new NHS referral application and this has been approved for a 12 month timeframe, to be reviewed. I will close my funding page down if it is ever approved without a time limit.
That said, on occasion I may also bring to your attention petitions and / or go fund me pages that may ask for donations, which are nothing to do with me but I feel are important. You are under no obligation to donate to anyone or anything, unless you want to.
More importantly, what I will hopefully be doing though is making people aware of ME and the other related illnesses and I will also be encouraging you to share your knowledge around the condition with others. ME sufferers really need the wider population to understand and know what this illness entails.
The quote below, from an ME specialist, highlights the severity of illness symptoms we suffer:
“My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my [ME] C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families. I split my clinical time between the two illnesses [AIDS and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. Because C.F.S., which impacts a million (to 4 million) people in the United States alone, has had a small fraction of the research dollars directed towards it.” ~ Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami
For me, the most poignant and telling part of the above quote is, if I had to choose between the two illnesses … I would rather have H.I.V. … I find this utterly shocking and also enlightening as to why I always feel like I am on deaths door …
How can that possibly be? Why would a specialist in HIV prefer to have the HIV illness over ME?
And this, my friend(s) and followers, is just what I would like to highlight here in my, sometimes very personal, pages.
So, please read, learn, and enjoy, and most importantly please share what you learn and make people more aware of ME. If want to start on ‘about me’ page and read my personal story in the fly out towards the bottom of that page, it is a good place to start. Feel free to contact me … with any suggestions or discussions. My email is always open, but please be aware it may take me a few days to respond.
Lots of love