ME/CFS

This page was added in January, 2018.

When I was first floxed in March 2010, the very first rheumatologist I saw during the acute phase of my reaction said “this looks like it’s going to end up being a ME/CFS type of thing”.    I had never heard of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), but whatever they were or it was, I was pretty sure I didn’t want it.   And I didn’t believe him.   Unfortunately, that rheumatologist was right.

Even though there is often so much symptom overlap with ME/CFS and FQT/FQAD, it took me a while to see ME/CFS in myself, to understand it as it pertains to my own case, and even longer to accept it.

ME/CFS appears to be triggered or caused by many things, such as viral infections, bacterial infections, fungal/mold exposure, trauma or stress, hormonal disruptions, and toxins (which would include FQs).    In my case, I have FQ-Induced ME/CFS.    This diagnosis is in addition to FQT/FQAD and Hashimoto’s Autoimmune Thyroid Disease.

The main focus of this website is about my adverse reaction to a fluoroquinolone antibiotic, and how that appeared to also adversely affect my thyroid hormone and iodine production and/or utilization ability.   So I’m not going to place a focus on ME/CFS here on this website.   However, I did want to include a separate page dedicated to ME/CFS on this website, because 1) I now have the condition, and 2) a fluoroquinolone antibiotic appeared to trigger or cause it.

As I wrote on this very long page with the equally long title of “Is it Lyme’s Disease, Sjogren’s Syndrome, Mitochondrial Disease, Chronic Fatigue Syndrome, Fibromyalgia, Fluoroquinolone Toxicity Syndrome, or . . . The Commonalities of Post-Viral, Post-Bacterial, and Post Fluoroquinolone Syndromes”,  FQ ADR’s appear to cause, trigger, or mimic many other “Chronic Invisible Illness” symptoms, including ME/CFS.   So I think ME/CFS is an important diagnosis to consider for those of us suffering from some or all of these long term permanent constellation of symptoms.

It’s also important to be aware that ME/CFS can be a co-morbid diagnosis along with other diseases and conditions.   For example, just as a person can have thyroid disease AND diabetes, someone can have ME/CFS along with other diagnoses.   In my case, I have FQT/FQAD, Hashi’s, and ME/CFS.   In one of the ME/CFS recruiting studies being done by the Institute For Neuro Immune Medicine, a list of ME/CFS inclusion criteria and acceptable co-morbid diagnoses are provided, along with examples of excluding active disease processes.   This particular study I am citing is for men only, but I’m providing it as a good example of what current inclusion and exclusion criteria are for ME/CFS in general.

I also discuss ME/CFS a bit, including general symptoms and the importance of participating in genetic studies on the page Update June 2017: ME/CFS and Genetic Study.

Below, I provide some ME/CFS links for those interested in learning more.

 

 

Documentaries

Each of these documentaries is noteworthy by themselves.   I found watching all four to provide an interesting and more comprehensive and historical perspective of ME/CFS, ranging from the personal, medical, scientific and political points of view.   I provided Amazon links; some of these may be on YouTube in full as well.  There may be additional documentaries that I’m not aware of; if this is the case, I apologize for not including them.

Unrest (2017)    

What About ME (2017)  

Forgotton Plague (2015)

I Remember ME (2000)

 

Research Organizations

The following are the organizations located within the US that I tend to follow. There are additional organizations, within the US and internationally as well.  Do an internet search on “ME/CFS Research Organizations” for more.

Open Medicine Foundation  

Solve ME/CFS Initiative   

Simmaron Research

 

ME/CFS Patient Websites and Forums

These are the websites I tend to follow.   However, I believe there are many more, and probably a lot of Facebook groups as well.  You can probably find them via these websites or searching on the internet.

Health Rising

Phoenix Rising

ME Action