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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. urbantravels

    Reaping the benefits of sickness? Long-term illness and the experience of welfare claims

    Two years? I'd be OVER THE MOON if it only took me two years. I'm past three years and might take another full year.
  2. urbantravels

    Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

    Sodium is part of the standard electrolyte panel. Everybody gets this as part of a routine physical. I'm usually at the low end of the normal range on sodium, occasionally a point or two below the normal range, but nothing worrying. A truly low value is definitely something that would be...
  3. urbantravels

    Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

    I think there's a distinction between the ability to produce a short burst of *energy* versus coordination and reflexes. I'm definitely klutzy since I've been sick - I've broken a lot of dishes and water glasses, walked into tables and chairs, etc. etc. But on a bike for the exercise test I...
  4. urbantravels

    Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

    It's important to define what information you are looking for and why. Since the two-day exercise test is cumbersome, expensive, stressful, and contraindicated for many people, I certainly don't want and don't expect it to become the standard diagnostic test to confirm the presence of...
  5. urbantravels

    Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

    Well, then the reasonable question would be: for those who have had crashes lasting months or longer, how often have they started from baseline (i.e you were at your personal average level of unwellness, not already extra unwell) and been triggered by one single episode of over-exertion?
  6. urbantravels

    Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

    I always tell healthies that I'm actually capable of rapid movement in an emergency, though I couldn't sustain it for long and would pay consequences later. I kept saying "I could run from a bear if I had to" so often that my friend asked me if bear attacks were a big problem in my...
  7. urbantravels

    Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

    That's sort of what I was trying to say in my post - creating a big cushion of rest and recuperation both before and after an expected stressor can help minimize the effects and possibly shorten the crash period. So it's important to be able to do that. I'd hate to have a big exertion and...
  8. urbantravels

    Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

    I had the test for disability documentation. I can't speak to how they did it for clinical trials, but the disability test includes a symptom questionnaire that asks you about symptoms for a week after the test. I did have PEM symptoms for more than a week, but I think a week's cut-off is...
  9. urbantravels

    Has anyone been completely cured of CFS?

    Then the diagnosis of CFS was incorrect, and the person actually had a heart condition.
  10. urbantravels

    Tachycardia -- What are effective treatments?

    Me three on Electromix. I think it must work out cheaper per serving than most alternatives, besides not tasting gooey sweet and/or super fake. I like it with extra dashes of lemon or lime juice. I actually used it for years pre-illness as a sports drink, because I can't stomach fakey stuff like...
  11. urbantravels

    Famous report of 1934 LA outbreak

    Actually, the specific form of localized muscle fatiguability described in the report sounds quite a bit like myasthenia gravis. Which, like Guillain-Barre, is an autoimmune disease that attacks the peripheral nerves that innervate the muscles. Note I'm not saying that this disease WAS...
  12. urbantravels

    I'm curious to know how much sleep most of us need

    I definitely need more than 8 hours. I take a combination of clonazepam and trazodone. Trazodone is supposed to be the best sleep aid for maintaining a natural sleep cycle, and I never wake up in the middle of the night any more, barring a car accident outside my window or something. Since I...
  13. urbantravels

    Famous report of 1934 LA outbreak

    Not all viruses are equally easily transmitted from person to person. And viruses don't necessarily evolve toward higher transmissibility. Some of them just peter out and some become highly transmissible. ETA: This is why new strains of bird flu are always emerging, but only sometimes do they...
  14. urbantravels

    Famous report of 1934 LA outbreak

    Where are you getting that? From reading the symptom profile, the prominent symptoms at onset were pain and muscle weakness in specific muscle groups - for instance, on one side only or in the legs or some such. There is later reference to "easy fatigue," which is never described in a way that...
  15. urbantravels

    Famous report of 1934 LA outbreak

    It's a difficult document to interpret. I haven't gone over it carefully, but from a quick read a few things are apparent. First of all, the enormous, overarching importance of polio at that time and in that place really colored the perceptions of this "mystery" illness. It was seen through...
  16. urbantravels

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Rehabilitation means a return to a former state of good health or good standing. The only difference between "recovery" and "rehabilitation" is that one can happen naturally and the other is a conscious intervention. But they both imply an end point. It wouldn't make much sense to speak of...
  17. urbantravels

    Haukeland Rituximab follow-up study, 21 July 2013: "even higher rates of effect"

    I think Legendrew makes good points. Besides that, one-off anecdotal experiences have extremely limited usefulness. They may suggest questions to be addressed later in proper studies, but they can never lead to any kind of conclusion on their own. This is especially true in a...
  18. urbantravels

    Haukeland Rituximab follow-up study, 21 July 2013: "even higher rates of effect"

    I'll take a well-designed, well-controlled, published and peer-reviewed study over isolated anecdotal reports any day of the week, and twice on Sundays. Crucial translation issue alert! "Just trying to make up" a study is completely meaningless in English, so what did he really say? Trying...
  19. urbantravels

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    "Oh no, I feel worse after this treatment! I must be regressing to the mean!" And as for that "composite measure of recovery" - was that developed post facto or was it in the trial protocol at the start? Because if you decided to custom-blend a "measure of recovery" after your data was...
  20. urbantravels

    Fitbit: ultra-pedometer for auto-tracking activity

    Hmmmm, I just went back and noticed that November Girl is talking about the Fitbit Zip, not the regular Fitbit (currrent model is the Fitbit One.) Different devices. The Zip as far as I know is only a pedometer. But it still doesn't make sense to me that it wouldn't register speeds below 4...
  21. urbantravels

    Fitbit: ultra-pedometer for auto-tracking activity

    Mine counts the small, slow steps I make around the house just fine - I've tested by counting several times. There is no way, no how, I *ever* exceed 4 MPH when walking. I know I never get any "vigorous activity" "very active" minutes; is that what they meant when they said over 4 MPH...
  22. urbantravels

    New Dr Snell paper on exercise and CFS

    Funnily enough, although I haven't fainted since contracting ME/CFS, I did have a tendency to faint now and again when I was an adolescent/teenager. Usually had to do with being somewhat dehydrated in hot weather and having to stand a long time. I have no idea if that has any bearing on my...
  23. urbantravels

    New Dr Snell paper on exercise and CFS

    Well, we don't have treacle here, but I think I know what you mean. I can't multitask or answer things quickly any more...but what I really notice is how befuddled I get when under sensory overload, or standing up, or both at once. I'm functional enough to go for short errands some days of the...
  24. urbantravels

    New Dr Snell paper on exercise and CFS

    I don't know if they still do this - at the time I was tested it seemed like they were phasing it out - but at the former PFL they had some cognitive testing at the end of the day 2 test. I thought it was a little odd that they didn't do any cognitive testing at the outset to establish a...
  25. urbantravels

    New Dr Snell paper on exercise and CFS

    Bear in mind that the Pacific Fatigue Lab Workwell Foundation (dang, I keep forgetting this) has very little money. They are not in a position to conduct multiple-arm studies of patients with multiple other conditions. I don't know the ins and outs of their funding situation, especially now...
  26. urbantravels

    New Dr Snell paper on exercise and CFS

    I can't really say whether it's practical to use the two-day exercise testing protocol as a diagnostic test more widely. It's a large amount of effort and expense, and of course it's very hard on the patient. But I was able to do it. The anticipation was really worse than the reality. I was not...
  27. urbantravels

    New Dr Snell paper on exercise and CFS

    By my notes, this is not actually an "increase in fitness" (one test 24 hours ago is not enough to change your actual fitness levels) but an expected "learning effect". Both healthy controls and other disease groups are expected to show this, at least a little. One test is enough for your body...
  28. urbantravels

    New Dr Snell paper on exercise and CFS

    I'm quoting directly from the report I got after testing at the PFL in 2011, from the section where they assess whether the subject was indeed putting in maximal effort (i.e. not deliberately holding back): Assessment of Maximal Effort As established by the American Thoracic Society and the...
  29. urbantravels

    The Open Medicine Institute: Big Plans and a Sense of Urgency

    Well, shut mah mouth, I should have clicked on the "for more information" link before I started pontificating. It is in fact a FOUR-armed study - control, R alone, V alone, and R+V in the fourth arm. It says "large-scale" but does not specify the exact size of the trial. For $7.65 million I'd...
  30. urbantravels

    The Open Medicine Institute: Big Plans and a Sense of Urgency

    I know others are undertaking or attempting to undertake Rituximab studies elsewhere. But those have not even started yet. We are so, so far from having trialled Rituximab adequately. It seems premature to run a trial on Rituximab + Valganciclovir when the need for study of Rituximab alone is...