Discussion in 'ME/CFS research' started by hixxy, Mar 23, 2018.
Link doesn't seem to work for me? I get:
Comprehensive Nutritional and Dietary Intervention for Autism Spectrum Disorder-A Randomized, Controlled 12-Month Trial.
I found this link so far: https://content.iospress.com/articles/neurorehabilitation/nre172245
I just went through VNG testing and I am waiting for the results. I am definitely having balance and unsteadiness issues and I think I have stumped them. They were supposed to get back to me a week ago and I called and they said the results are still not posted.
Why not just measure balance deficits in CFS vs FM vs CFS/FM? Why bother with anxiety scales etc - are these not byproducts? And why can't they call CFS ME/CFS?
Regardless, the study flies in the face of n-1, me, as I have ME/CFS and not FM and I have significant bilateral vestibular damage.
Link fixed. Sorry
A couple of quotes from Melvin Ramsay, circa 1986.
This is exactly how it started for me. In my case it was not "spinning" vertigo, but rather a failure of the balance system which made me feel "drugged," intoxicated, or had had food poisoning - sort of as if I was seeing the world through a distorted, fish-eye lens. It was also a constant "bobbing" sensation that did not go away even when I sat down or lay in bed. Because reclining did not help, I don't think it was related to low blood pressure. I had experienced this kind of "drugged" sensation a few times as a child when, ill with a high fever, just walking to the bathroom became a weird, dreamlike challenge.
About six months after onset, I was tested at a prominent ear research clinic/institute. I was told I had a bilateral deficit of 30% in my balance centers. They had no idea why. They said that they sometimes saw this in patients who had restricted blood flow to the inner ear due to the constriction of the tiny blood vessels there. So, as in systemic low blood pressure, the inner ear was thought to not be getting enough blood.
They suggested that I try niacin because of its capacity to dilate blood vessels. I gave it a shot for a while, but all it did was cause my skin to flush severely, which seemed to actually drop my blood pressure and sometimes made me feel like I was going to black out. Pretty much the only relief I found was to lie on a lounge swing as it swayed back and forth. It didn't eliminate my dizziness, but it created a context in which the feelings of motion seemed to be appropriate.
I had that severe vertigo very early on, but it passed after a few months.
I suspect that this was a key part of the diagnosis for me. One day, in the dim and distant past, when ME was unknown to all but specialists, the consultant asked if I had vertigo. I said no, it was not quite that, and after a lengthy pause suggested unbalanced. I am sure my friends here will agree with the assessment.
I had the impression that this was a eureka moment.
ME was also known as epidemic vertigo. Over the years, I have suspected that CFS+FM is actually ME because the fukuda definition does not cover the excruciating pain that often goes with ME. Myalgic/ myalgia, how do they decide exactly how they differ especially since the number of points to diagnose fibro has been reduced. It was in the US after CFS was invented that fibromyalgia was linked with it and it is hard to believe doctors take that much care. So fatigue syndromes, post virals, and such are CFS, and the joint disease is ME.
So much about ME is a mess. Vertigo is common with POTS and that is often a symptom of ME. Vertigo was one of my first symptoms and it has waxed and waned but never gone away.
Same here: vertigo was the first symptom and very sudden at that. One moment I was fine and then suddenly it was as if the ground beneath my feet had moved. The colleague I was walking down a corridor with at the time noticed it because I had to grab the wall to stop myself falling over.
My main question with this study (I only read the abstract, so sorry if this is covered) is whether the split between CFS and CFS+FM was as part of the planned statistical analysis or just found via a post-hoc subgroup analysis.
The vertigo started about a year and a half after onset (or 18 years after, depending on how one dates my onset). Initially it was brief bursts of intermittent vertigo that went away after a couple of weeks, which was diagnosed as labyrinthitis. The vestibular torture -- er, I mean testing revealed a sort idiopathic nystagmus. Eventually it settled into an almost constant bobbing sensation as @Forbin mentioned above for a few years. Now the bobbing is intermittent, and I think related to PEM.
I had a balance problem during my first year and needed to grab for the wall too. At the time I still had a horse. Fortunately she was very smooth gaited and cooperative; also we had a ring to use on that property. So I limited my riding only to slow, careful riding in the ring by ourselves. After that year I gave up riding entirely as I felt unable to do it safely anymore, in addition to the new muscular fatigue and aching that I was experiencing. Yes, this was a significant loss but what I remember was the year of grace with that sweet old mare.
I also couldn’t make even one turn while dancing and not feel dizzy, sick and risk falling. Before, riding and dancing had been two very valued activities. I had also still enjoyed jumping from rock to rock across streams like a child, but after two very hard surprise falls, I gave up this sort of thing too.
It seemed the vertigo stabilized/I adjusted to it, after that early period with ME. But more recently with aging and worsening hypotension, my balance has gotten worse again. I have reason to fear being knocked over on the sidewalk or slipping or tripping, so am very, very careful. I understand I might look drunk or drugged and always move slowly now. Movement is essential to life, however, to whatever extent it is possible at all, so I do whatever I can—consciously.
A distinct deterioration in my balance was one of the very first symptoms I noticed, within hours of onset.
Yep. Vertigo and lightheadedness started when I was about 14. I used to beg not to have to go to school, but my mum had two jobs and thought I was putting it on, so I wasn't allowed time off. I felt nauseous and poisoned and waking up was so hard. I started doing meditation but always fell asleep during it. That's when I first noticed my sleep becoming broken.
I got dreadful dizziness at beginning, especially if I went from sitting to standing...has become worse in last couple of years, I can stumble when walking for no apparent reason.
I had problems with spacial orientation right from the beginning. I was always lightheaded and often off balance.
I was having random vision problems also (including spells of tunnel vision) and temporarily lost hearing as well, a couple times. Lost spells of time, too.
Later told this would be due to encephalitis (with other reasons also), which was not diagnosed that way at the time (but I also didn’t tell anyone how bad things were).
This author/group always tries to differentiate from anxiety and/or depression, I believe because primary care doctors are not trained to diagnose these correctly and make haphazard diagnoses and can’t tell the difference between various different things they don’t know how to diagnose.
CDC used to claim it was difficult to tell the difference between depression and “CFS.” Well, clearly, if you don’t know how to diagnose either one and you think on the one hand that chronically tired people (very common) with reduced activity due to fatigue and/or mood plus some combination of mostly-vague symptoms (but symptoms assessed only over a short time) is “CFS” and on the other hand that lots of symptoms is a red flag for depression.... then yeah, you’re going to really struggle with differential diagnosis and make a world of errors—many more than just two diagnoses.
They need to train in differential diagnosis a whole lot better.
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