The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Standing difficulty score stratifies ME/CFS symptom severity and analyte detection.

Discussion in 'Latest ME/CFS Research' started by Murph, Apr 14, 2018.

  1. Murph

    Murph :)

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    Weighting of orthostatic intolerance time measurements with standing difficulty score stratifies ME/CFS symptom severity and analyte detection.
    Richardson AM1, Lewis DP2, Kita B3, Ludlow H4, Groome NP4, Hedger MP5, de Kretser DM5,6, Lidbury BA7.
    Author information
    Abstract

    BACKGROUND:
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is clinically defined and characterised by persistent disabling tiredness and exertional malaise, leading to functional impairment.

    METHODS:
    This study introduces the weighted standing time (WST) as a proxy for ME/CFS severity, and investigates its behaviour in an Australian cohort. WST was calculated from standing time and subjective standing difficulty data, collected via orthostatic intolerance assessments. The distribution of WST for healthy controls and ME/CFS patients was correlated with the clinical criteria, as well as pathology and cytokine markers. Included in the WST cytokine analyses were activins A and B, cytokines causally linked to inflammation, and previously demonstrated to separate ME/CFS from healthy controls. Forty-five ME/CFS patients were recruited from the CFS Discovery Clinic (Victoria) between 2011 and 2013. Seventeen healthy controls were recruited concurrently and identically assessed.

    RESULTS:
    WST distribution was significantly different between ME/CFS participants and controls, with six diagnostic criteria, five analytes and one cytokine also significantly different when comparing severity via WST. On direct comparison of ME/CFS to study controls, only serum activin B was significantly elevated, with no significant variation observed for a broad range of serum and urine markers, or other serum cytokines.

    CONCLUSIONS:
    The enhanced understanding of standing test behaviour to reflect orthostatic intolerance as a ME/CFS symptom, and the subsequent calculation of WST, will encourage the greater implementation of this simple test as a measure of ME/CFS diagnosis, and symptom severity, to the benefit of improved diagnosis and guidance for potential treatments.
     
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  2. Murph

    Murph :)

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    This is a study run by an Australian researcher, using patients from the clinic I go to, in Melbourne. It seems to bundle POTS and MECFS together to make standing difficulty a measure of ME/CFS severity.

    > All 17 healthy controls stood for 20 min, with difficulty scores ranging from 0 to 3 (one study control participant had a > standing difficulty of 8, but did not fulfil the Canadian criteria for a ME/CFS diagnosis).
    >
    > Thirty-one (31) of the 45 ME/CFS patients stood for 20 min, with difficulty scores ranging from 1 to 9. The remaining > 14 stood for between 2 and 18 min with difficulty scores of 12 or 14, depending on whether standing was achieved > for less than or greater than 10 min.

    > The weighted standing time combines standing time (ST) with a subjective assessment of standing difficulty..

    The study does two things.

    1. Proposes a new measure of standing difficulty, by combining how long you could stand with how hard you reported it was (especially useful if you could stand right til the test expired at 20 mins.) This bundles a subjective and objective criteria together. Nice idea maybe but not sure how useful it would be across cultures.

    2. Finds that a range of analytes correlate with this measure of standing difficulty.

    It's not an especially wonderful study, I'd say, but it does find a few things that correlate with severity, which is interesting. They are; Urine volume (p = 0.0009), URINE CREATININE (p = 0.0092), monocytes (p = 0.0129), lymphocytes (p = 0.0250) and white cell count (p = 0.0381).
    --
    Perhaps people who don't have POTS will find this completely useless but as someone with standing difficulty I think it's intriguing at least.
     
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  3. dreampop

    dreampop Senior Member

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    Last edited: Apr 15, 2018
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  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  5. dreampop

    dreampop Senior Member

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    I'm not sure about the actual study since it conflates OI severity with ME/CFS severity. Therefore what correlates with their definition of ME/CFS severity is actually doing so with OI.


    However, there is still the Activin B result. One of the concerns in the thread for the original study was that Activin B might be elevated in POTS or OI, but I couldn't find any study of it being elevated in other diseases.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Murph Thanks for posting this study and I was not sure what they meant by "a range of analytes correlate with standing difficulty"?

    I find it intriguing as well and I think there must be differences between people who do and do not have POTS. I don't see how there couldn't be!
     
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  7. Strawberry

    Strawberry Senior Member

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    i'm also very curious in understanding this study if others more knowledgeable could chime in. Standing is now my worst symptom.
     
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  8. Murph

    Murph :)

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    I believe they mean that if you have high standing difficulty you have abnormal scores on the molecules they're analysing (analytes); low standing difficulty, more normal scores.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    @Strawberry It’s good to see you but am sorry to hear that standing is now your worst symptom (like it was for me for almost 4 yrs). Do you have any idea what changed in your case?
     
  10. alex3619

    alex3619 Senior Member

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    This is looking at only two or three parameters, and only one of those is properly objective.
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    What does that mean? I wish I knew how to properly read all these studies!
     
  12. alex3619

    alex3619 Senior Member

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    Hi, they are looking at standing time (which is partly objective) and how difficult it is (objective) and activin B. Its one (or two or three) facets of the problem, so we don't know how it fits with other data or issues.
     
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  13. Strawberry

    Strawberry Senior Member

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    @Gingergrrl I've been like that for 3 years now, got there by moving my house and then my office back to back (moved both in less than 3 months). Also a hike to the beach that is next to my house that I never should have done. I thought it would go away with the MCAS treatment, but now I am able to eat anything I want without reactions, including M&Ms and Skittles with no tachycardia or throat tightness. But I still have to use a cane seat to go pick up my meds at the pharmacy because I can't stand for more than 2 or 3 minutes without getting very shaky. It seemed I would get mildly better after a few weeks rest after overdoing (and find myself able to stand a little better), so I kept up the "push crash" thing. I had to take my cat to the vet on March 6, and I have not improved since, even with taking 3 days vacation to do nothing more than rest. Thinking it might be a permanent dip downwards? Laundry and cooking are almost impossible now. 6 weeks might be too soon to say...

    To all: (@Murph @alex3619 )
    I am wondering if these "analytes" would be worth looking into? Or is this just a curious effect with no idea the function at play, or if there is a reduction of symptoms/analytes with medication? I do have 3 positive on cell trend test (plus one "at risk") so maybe that is enough proof for doctors?
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    How do they determine which is objective vs. subjective? After reading what you wrote above, I would think that standing time is more objective (b/c it can be measured with a watch) vs. level of difficulty is more subjective b/c the patient is self-reporting it. I'm not sure what "Activin B" is but assume it is one of the "analytes" that they are measuring? (I just Googled Activin B but still have no idea what it is)!

    I don't think I realized that and am so sorry! Do you use a wheelchair when you go out or inside your home?

    Wow, that is amazing! I can also eat anything I want without reactions but I have not yet tried any food or med with an artificial dye. It is possible I could tolerate it but for now, I just don't want to rock the boat so continue to avoid them.

    I truly understand re: the trips to the vet and my dog had back surgery at the beginning of April and it's been brutal caring for her while she can't walk! For me resting doesn't change anything vs. bending and lifting her can trigger an instant POTS episode if I am not super careful (and even when I am careful, it can still trigger it).

    If you don't use a wheelchair, can you do these things seated? I can cook and do laundry standing now BUT if I have to bend to pick up something from the floor (like my dog's bowls or truly anything) then I do it from a seated position in wheelchair. So I have the chair with me when I am cooking or doing laundry, even if I don't need it, but then if I do, I can sit in it to bend to get something out of a lower cabinet, etc.

    I am wondering this, too, but you asked the question much better than I did! I am positive for 7/9 on Cell Trend but I have no idea if autoantibodies are considered "analytes"? They are proof of Autoimmune POTS for my doctors who believe in them, and on the flip side, they are not proof for doctors who do not believe in them. I personally believe in them (but I do not know if they are an "analyte").
     
  15. alex3619

    alex3619 Senior Member

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    An analyte is just something being analysed so far as I can tell. That could be almost anything, so long as there is a test.

    Standing time is probably altered by perceived issues, with an exception for standing until collapse. Its not likely to be very reliable. Its a clue, but not a great one. Now if the underlying issues were identified and measured, such as blood pressure, blood pooling in the legs, brain activity etc., then that would be more objective.

    Activin B is a regulatory protein, I think at higher levels in women as its tied to the hormone cycle. I wonder if the finding holds in males with ME or CFS?
     
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  16. Strawberry

    Strawberry Senior Member

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    No I don't have a wheel chair. I just don't go anywhere that I have to be standing for more than 3 minutes or walk for more than a block. Pharmacy is my only exception, every thing else is delivered. I've thought about something that I could use in the house, but it would have to be motorized and very small so I haven't looked.

    I wouldn't either. You had some VERY serious reactions!

    I do as much seated as possible. I have a chair in the laundry room for sorting, but I do have to stand putting things into the dryer as the washer and dryer are on opposite sides of the room. I have a bar height chair in the kitchen, and a foot stool that I use for cleaning the kitty litter box or getting something out of lower cabinets. But the "in between" steps all adds up rapidly....

    I don't think I have POTS as tachycardia went away with MCAS treatment, so I'm not sure what this qualifies as. I probably need to fly to California and have Dr K. test me but I'm not up to flying there!

    I hope your puppy gets feeling better soon, we definitely put ourselves at risk taking care of our fur babies! (or in my case, feathered babies too).
     
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