Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 26, 2014.
* I gave each sentence its own paragraph
Not sure I've any major observations on this. Here are some more minor ones
This may be so, but it misses lots of people: only 9 of the 24 POTS patients have ESS ≤9 and OGS ≥9, while only 37 of the 155 non-POTS patients have ESS >9 and OGS <9.
I don't understand why anybody wants to put patients into groups depending on something as vague as having one particular symptom or not.
I used to have POTS.
I don't have it now. I don't know what helped it, I do know that I was in severe and protracted PEM when I had it, it went as I rested and recovered slowly.
This disease is variable, it changes as the years go by. What bothered me at the beginning isn't what bothers me now, my disease has progressed over the 10 years I have had it.
It does seem that, for some patients, POTS treatment can lead to real improvements. Well worth identifying this imo, compared to the alternatives available for CFS patients.
Treatment for POTS if present, yes absolutely Esther.
Fainting everywhere is very inconvieneint and likely to result in injury.
It certainly did in me.
I simply don't think it is useful to differentiate sufferers into subgroups on whether they have this or not.
I know I was in a very bad PEM when I had it; I know that being put on 10 mgs of amitriptyline (to help with sleep) made it a heck of a lot worse, and that worsening was exacerbated by stopping taking it. It was quite a while before I recovered from that pharmacological assault.
My next point (I just had my dinner) was to raise a similar point: the paper doesn't discuss this issue which I was disappointed by. Although I was never formally tested for POTS, I think I may have had it when I was younger but don't have it now. My orthostatic intolerance seems better these days than when I was younger. The POTS group were younger: mean (SD) of 29 years old (12) versus 42 (13).
I am slowly coming to terms with the seeming "lowest common denominator" progression of defining new disease. It seems for large disparate groups to come to an agreement that has any chance of becoming mainstream the focus is at first very narrow, then later more inclusive. It just upsets a lot of people seeing their symptoms ignored.
Fibromyalgia, for example, had to have 11of 18 tender points among other things for diagnosis. I knew of many people whose full-spectrum symptoms indicated fibro, but because they had few or no tender points, the diagnosis was missed for years. The points are no longer included in the criteria.
@Graham and a few others may be interested in the info on the Chalder fatigue scale
It looked in the Table that they planned to give the percentage who scored the maximum but they didn't do it.
They said they used the 14-item version of the Chalder Fatigue Scale. However, that's rarely used and there are 8 items on the physical fatigue subscale so I presume they used the 11-item version.
Any idea what this means for us given that they used the crappy 1994 CDC definition of CFS? Doesn't this paper simply distinguish fatigued people with POTS from fatigued people without POTS without much regard for ME/CFS? That is, it might identify POTS as a factor in some forms of fatigue, but doesn't say much about ME/CFS (the CCC/ICC defined illness), does it?
Note: they use the two-minute test for POTS. I've seen longer tests e.g. 10 minutes, being used.
Standing, or TTT? Neither daughter nor I have POTS by the 2-minute standing test, and I don't think we're unusual among PWME in that. We both have clear OI of some form, though. It shows up on a TTT or longer standing tests.
This particular paper is looking rather sloppy to me. To me, the accurate conclusion to this research looks more like "Some people with fatigue have missed diagnoses of obvious POTS."
2 minutes standing:
Thanks. So not the TTT, which is the more standard way to test for POTS, but the crude, catch-the-worst-cases rough estimate test that is sometimes done in a GP's office. Again I say, sloppy. Sloppy patient selection, sloppy methodology, and resulting sloppy conclusions.
With that level of sloppiness, I'm not sure there's much validity to their conclusions about age, depression, level of fatigue, or daytime sleepiness.
Their points about the discrepancies between the FIS and Chalder Fatigue Scale are interesting, though.
I think the Chalder Fatigue scale is a car crash at either end. For healthy people there isn't enough of a range of scores to determine a "normal function", and for people with ME the scale doesn't have enough items at the severe end to show bad patches or deterioration. It's rather like having a car's speedometer only functioning between 40 and 60mph: useless for monitoring the situation in towns or on the motorway. If there isn't a reasonable range of values that healthy folk can have, then you can only use the scale to define a lack of fatigue, and not, as PACE did, to define normal function.
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