Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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An Update on ME/CFS Research with Ronald W. Davis, PhD

Discussion in 'Latest ME/CFS Research' started by Ben Howell, Feb 21, 2017.

  1. TreePerson

    TreePerson Senior Member

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    I had low blood pressure at the start 24 years ago. Now it is at the high end of normal. I also have low sodium which I think may have come on over the course of the disease. It was first flagged up to me about 5 years ago.
     
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  2. Alvin2

    Alvin2 Senior Member

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    Interesting, though these results suggest a subset have changes, not universal in ME/CFS
    https://www.ncbi.nlm.nih.gov/pubmed/26399744
    My point is unchanged, this does not prove ME/CFS is caused by excess ACh, nor do people on ACh raising drugs appear to have increased incidence of ME/CFS, nor does increasing ACh worsen ME/CFS.
     
    Last edited: Mar 19, 2017
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm typing up my health diaries, and have reached July 1999, when I still had blood pressure 110/70. I had had ME for about 4-5 years. I think I was starting to get low sodium, but may have had tendencies to this before.

    I take Nebivolol for high b.p. now, having had bad experiences with ACE inhibitors (seriously low sodium). Have to keep an eye on my sodium all the time now.
     
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  4. TreePerson

    TreePerson Senior Member

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    I was the same 110/60 from 1994 for quite a few years. I can remember getting a higher reading for the first time in 2000. I had wondered if it could be connected to the three year switch over thing from having high cytokines to low. My sodium not very low but it is out of normal range and they made me get it retested but seems to be stable where it is. Are sodium and bp connected? I have wondered if my vasopressin is low because I now need to get up to the toilet about 5 times a night. That's got worse it used to be more like two.
    The disease definitely changes over time.
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Maybe best to search for "sodium" and "pressure".

    I found this from @Countrygirl - but don't know if it's relevant;

    "My ME consultant before he retired warned me not to let the GP treat the high BP as ordinary hypertension as, he said, she would make the situation worse. She did, she is, and it has." That's from this thread: http://forums.phoenixrising.me/index.php?threads/long-term-me-and-cardiac-problems.49653
     
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  6. Jan

    Jan Senior Member

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    I can't take ACE inhibitors either MeSci, I have a leaking aortic valve and they tried me on two different types, the first made me feel dreadful, I imagine it could have also been due to low sodium, no tests performed though. The second gave me severe chest pain, my GP wouldn't believe it at first, until I showed her it was in the list of known side effects. I now take Bisoprolol, but only a low dose normally. Too high and I will be nearly passing out from low blood pressure.

    My blood pressure was too low for many years with ME, it varies a lot more now.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I could't even tolerate 1.25 mg of Bisoprolol.
     
  8. Jan

    Jan Senior Member

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    Neither can I, lol. I usually only take half a tablet, it seems to help stop the palpitations that would otherwise keep me awake. When I first took them they made me very dizzy and I'd nearly pass out if I bent down. Now I only take them at night, sometimes I'll take another half if the palpitations are particularly bad.

    Strangely though when I was going through hell with my family I was needing to take several a day, the stress must have been affecting my blood pressure a lot to enable me to take that many.

    I wonder if I'd be better off taking what you take?
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I think we all vary. I don't get as much reduction in systolic pressure as I would like - sometimes it's alarmingly high, and I sometimes get a lot of reduction in pulse, sometimes below 60.

    I think we'd be better discussing this elsewhere!
     
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  10. wastwater

    wastwater Senior Member

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    Is this similar to a bioimpedance machine,I had a go on one of those and while it reminded me of a place you're finger in the slot fortune telling device it seemed strangely accurate flagging up areas for me,high brain glutamate,systemic inflammation,fast metabolism and oxygen usage and gut inflammation
    I see earlier in posts comparison to the workings of a car,I think it might be everything is working fine but clutch plates are extremely worn,so engine is redlining just to produce any drive at all and slipping through every gear.
    Or maybe like driving with handbrake on all the time
     
    Last edited: Mar 30, 2017
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  11. keenly

    keenly

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    Dr Yasko recommends plain L Carnitine for this reason.
     
  12. Alvin2

    Alvin2 Senior Member

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    because acetyl carnitine is bad for CFS?
    Odd that i see it preferentially recommended.
     
  13. keenly

    keenly

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    It is not ideal for Certain genetics. due to it being the acetyl form.
     
  14. Alvin2

    Alvin2 Senior Member

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    do you have more information on this?
     
  15. keenly

    keenly

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    Too many Acetyl groups can be an issue for certain individuals.
    Dr Amy suggests L-carnitine first( basic mito support) then adds in acetyl carnitine and carnitine fumarate based on testing and or genetics/. Some people can have issues with low acetylcholinesterase so that they end up with elevated acetylcholine.
     
  16. RL_sparky

    RL_sparky Senior Member

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    @Janet Dafoe (Rose49)
    Is Stanford / OMF still planning to offer a Metabolomics test or has that been put on the back burner for now?
    Thanks
     
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  17. lnester7

    lnester7 Seven

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    There is so much cross over between CFS and and OI (POTs) I wonder what is the implications of the ( POTs cause research bellow) for CFS. Do we have the same protein issue or has to be related to what is going on with us in some way, as to why such a big cross over.


    The CCS scientists discovered chemical marks on the NET gene responsible for repressing or turning the gene off. They delved further and found that a repressor protein called MeCP2 together with a non-coding RNA (let-7i) was critical in the gene silencing.
    In another exciting development, the researchers, collaborating with the Baker Institute’s Professor Murray Esler, demonstrated that the NET gene could be re-activated by using the FDA approved drug Vorinostat in blood cells derived from POTS study participants.

    http://neurosciencenews.com/fainting-disorder-neurology-6293/
     
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  18. Belbyr

    Belbyr

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    Bingo. You think like I do.
     
  19. Dechi

    Dechi Senior Member

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    I don't have POTS and apparently it showed in my SPECT scan. I have moderate to severe hypoperfusion, and the part of the brain asociated with POTS is not affected, in my case. So even before I did the prolonged table tilt test that came back negative, my doctor knew I didn't have it.

    So my thought is POTS depends on a certain area of the brain being well supplied with blood and oxygen, or not.
     
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  20. lnester7

    lnester7 Seven

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    That would be a good test: is the POTs lack of blood flow to brain or cfs has the chemical signature same as regular POTs. And can we call it POTs if the mechanism in Cfs is different ?!
     

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