User:RobinHood70
About Me[edit | edit source]
I'm a gay man in my forties, and I've had ME/CFS since my mid-thirties. I'm very grateful to have had a supportive partner throughout all of this, who has taken up so much of what used to be my roles and responsibilities in the relationship, and who has been there when I needed him.
My general interests include programming, reading fantasy/sci-fi, both computer and table-top gaming, and listening to a wide range of music.
I use the name RobinHood70 everywhere, and while I've found one or two doppelgangers over the years, they don't seem to be active, so if you know a RobinHood70 from somewhere else or you find one somewhere else, chances are it's me. Please feel free to say "hi".
About Me On The Wiki[edit | edit source]
I have a lot of experience on wikis and I'm happy to help out with any formatting or template design. I'm not one to write big articles, but you will see a lot of copy editing and similar such edits. While I haven't currently created an account for it, I also have a multi-purpose bot available should the need arise.
About My ME/CFS[edit | edit source]
The onset of my ME/CFS symptoms is a bit unclear. I normally say that they began in April 2006, since most of my symptoms came on within a couple of days at the beginning of April, but there were some cardiopulmonary issues for a couple of months before that, and new symptoms continued to crop up intermittently throughout the month of April.
My primary 24/7 symptom set includes:
- a weak, jittery feeling in all my muscles
- dizziness, regardless of whether I'm sitting or standing (though sometimes marginally relieved by lying completely flat)
- bilateral tinnitus—there's always a high-pitched sound like an old TV in both ears, but sometimes there will also be other simultaneous pitches in one or both ears, ranging from distant car engine on upwards
- brain fog, ranging in severity from one day to the next regardless of activity, though always getting worse when I am physically or mentally active; I can do burst activity where there are a lot of mini-breaks, like programming or web surfing, for up to a couple of hours on a good day, but sustained activity like reading I can't do for more than about 10 minutes tops
- unrefreshing sleep—unlike some, I do get something out of sleep, but very little, and the difference between getting 4 hours sleep or 9 is almost negligible; while I generally feel at least a little better after sleeping than before, I never feel like I'm truly rested
My intermittent symptom set includes:
- post-exertional malaise (technically, this could be considered a 24/7 symptom, since it always occurs after significant exertion, but obviously it only occurs when I've gone beyond my limits, so I'm calling it intermittent)
- palpitations/arrhythmia
- prolonged shortness of breath (usually more significant during high-allergy periods like Spring/Fall)
- frequent headaches that often last several days; migraines with aura, while still rare (and thankfully mild compared to most people), have also roughly tripled in frequency
- spotty vision like migraine aura, but less distinct and not progressing into a headache
- arthralgias, mostly in my fingers but sometimes in other joints
- insomnia
- feeling flushed/unwell, often getting bad enough that I feel like I'm going to pass out
- memory issues—some days, I can't absorb/retain info pretty much at all; it's been known to happen that I watch an entire movie and can't remember even the basic story or any scenes from it
Ways in which I differ from the typical person with ME/CFS:
- no flu-like illness at onset, nor any significant ongoing flu-like symptoms
- no inflammation of any lymph nodes that I'm aware of
- increased tolerance for short-term activity but less tolerance for long-term—I shower every day and take the dog for a 10-minute walk most days, however trying to get out to an appointment or doing any other kind of travelling makes me feel like I'm about to pass out, with a recovery time of several hours just to get rid of that feeling and a recovery time of days for the myalgia, brain-fog, and other symptoms
- electrolytes noticeably improve symptoms on a bad day, but make only minimal difference on normal/good days, and are certainly not curative by a long shot
About My Use Of ME/CFS Terminology[edit | edit source]
While I usually use the term "ME/CFS" in any relevant context, in day-to-day use, I often choose to use the term "CFS" on its own, for a variety of reasons. That doesn't mean that I don't see all the same issues with it that everyone else does, I just don't like "ME" any better. Why? Because while I think the "myalgic" part is pretty much universal, I'm not aware of any specific criteria that has proven that we all universally have the "encephalomyelitis". Yes, those that have had brain scans where the relevant markers have been found have all had ME by most or all definitions, but the reverse is not true. I know I have all the symptoms of ME, and would be considered to have it by all the common ME/CFS criteria, but I don't know that I have encephalomyelitis because I've never had a brain scan. That same statement can be made for the vast majority of ME/CFS patients. Thus, I don't support the use of the term ME unless you're one of the rare few who has had the brain scan, or until such time as we can prove that everyone with a specific set of symptoms (or better yet, one of the biomarkers that have been proposed over the years) does, in fact, have myalgic encephalomyelitis.
SEID might be a better term, and I could easily be convinced to switch to that, but right now, those criteria are only proposed for use in the US and, to the best of my knowledge, have not been adopted by anybody.
In a similar light, I don't normally make a distinction between ME and CFS because again, there is no proof that there is. The ICC recommend separating those with their criteria from those who don't meet that criteria, which I believe is to distinguish us from those who fall under the overly broad Oxford criteria, but in the broader medical literature, the various terms are used interchangeably to refer to what they believe to be the same disease. Personally, I think that in time, we will discover that there are several distinct diseases—or perhaps manifestations of the same disease—but at this time, no distinction has been proven and I therefore don't separate the terms the way some advocates do. In the end, what it comes down to for me is this: In terms of diagnosis, what's the difference between the two? Has any of the existing research made that same distinction?
