International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

New Mella talk, exciting reveals

Discussion in 'Other Health News and Research' started by Marky90, Oct 11, 2016.

  1. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,637
    Likes:
    12,508
    South Australia
    You forgot the smilies! :sluggish::sluggish::sluggish::sluggish::sluggish::sluggish::sluggish::sluggish::sluggish::sluggish::sluggish:
     
    MEMum, Webdog, Marky90 and 1 other person like this.
  2. lansbergen

    lansbergen Senior Member

    Messages:
    2,511
    Likes:
    2,726
    Very likely
     
    Johannawj and MEMum like this.
  3. JaimeS

    JaimeS Senior Member

    Messages:
    3,244
    Likes:
    11,982
    Silicon Valley, CA
    Speculation, but I'd say cortisol or adrenaline has got to be related to that jittery feeling, and several studies have found adrenaline to be slightly elevated in ME patients.
     
    MEMum and soofke like this.
  4. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,555
    Europe
    I am wondering if this excessive production of adrenaline ultimately leads to some sort of 'adrenal fatigue', which is (or actually: used to be?) a popular diagnosis, as if it were the cause of our symptoms, when in fact it's just another side-effect...
     
    JaimeS likes this.
  5. JaimeS

    JaimeS Senior Member

    Messages:
    3,244
    Likes:
    11,982
    Silicon Valley, CA
    Had extensive testing at Mayo and other places -- my adrenals are doing okay! It's the H and P part of my HPA axis that are malfunctioning... so, the brain.

    That said, I am 100% certain that for some PWME, their adrenals are kaput. Those who benefit significantly from cortisol supplementation are likely in this category. :)
     
    ZeroGravitas, actup, MEMum and 3 others like this.
  6. CFS_Kristin

    CFS_Kristin Senior Member

    Messages:
    120
    Likes:
    68
    My CFS started after I got my Flu Shot. I had not gotten it in my early twenties for maybe 5 years, was perfectly healthy and then 2 years ago got it in November. All of December I was extremely run down, felt like I was coming down with something. Then I developed a fatigue every morning for a few months. 2 months later I got the flu, and then all hell broke loose. But I 100% know this all started after my flu shot.
     
    Countrygirl, actup, MEMum and 5 others like this.
  7. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,637
    Likes:
    12,508
    South Australia
    I haven't really seen any evidence of adrenals being kaput or benefit from cortisol (beyond the immunosuppression effect) in most patients. All of the neuroendocrine studies I have seen do not suggest adrenal damage is a key issue.

    The exception being those with Addison's disease (which is usually an exclusionary diagnosis).
     
    actup, Marky90, TiredSam and 3 others like this.
  8. Kati

    Kati Patient in training

    Messages:
    5,475
    Likes:
    19,639
    I would really like to have answers on the endocrine side. I have been twice tested for Addison, and I do not have that disease. However my morning cortisol is under normal, and at some point was quite acutely low, but the ACTH challenge test was normal and I did not respond to Cortef (nor did the Cortef made me better).

    I hate the term 'Adrenal fatigue'. This is not a mainstream medicine term.

    I just hope that scientists who are begining to understand this disease most can explain the hormonal imbalances.
     
    Snowdrop, jstefl, JaimeS and 6 others like this.
  9. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,555
    Europe
    I agree, I don't like it either. But for some time it was a term that was being used a lot, even by some doctors, but I've always seen it as just another wastebasket diagnosis for 'unexplained fatigue'. I wonder if it went out of fashion, cause I haven't heard it in a while. I hope so! ;)
     
  10. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,361
    Likes:
    12,329
    U.K
    This talk is fabulous (despite the google translate). So much to think about in there and it seems we are getting closer...unfortunately my 'between the ears' is not working too well, and even though I have just read it I cant remember the interesting points I wanted to talk about.
     
    MastBCrazy, Jan, Snowdrop and 8 others like this.
  11. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    438
    Likes:
    704
    argentina
    I feel worse both with warm and cold weather
     
    Sean likes this.
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,004
    Likes:
    32,328
    USA
    Thanks @Marky90 and I was just curious if they had mentioned more re: the autoantibodies or the work at the Charite or Cell Trend Labs? No kidding about Germany doing innovative research and I am certain it is going to end up helping me if I live long enough to see it through.
     
    MEMum likes this.
  13. Hip

    Hip Senior Member

    Messages:
    10,521
    Likes:
    17,230
    I have just been wading through some of Dr Sarah Myhill et al's original studies on mitochondrial and energy metabolism dysfunction in ME/CFS, and posted a new thread summarizing the findings:

    The ME/CFS Mitochondrial and Energy Metabolism Dysfunction Papers of Dr Sarah Myhill et al

    The Myhill et al papers have not be adequately covered on this forum, for some reason; now with this new rash of studies finding energy metabolism defects in ME/CFS, these Myhill et al papers make very good reading.
     
    merylg, Mel9, lauluce and 4 others like this.
  14. MEMum

    MEMum Senior Member

    Messages:
    435
    Likes:
    2,229
    Could Vit D levels have an influence here? Those able to go out and live in sunnier climes, may do better than those in cloudier/cooler places?
     
    MastBCrazy likes this.
  15. MEMum

    MEMum Senior Member

    Messages:
    435
    Likes:
    2,229
    I found these studies v interesting too.
    ME Association is doing a study in Oxford area, trying to validate the Acumen tests.
    I met a Dr at the IiME conference, who is working on this.
     
    merylg and ZeroGravitas like this.
  16. hixxy

    hixxy Senior Member

    Messages:
    1,166
    Likes:
    1,349
    Australia
    Prevalence of ME in Australia seems to be pretty high and we have no shortage of sun. I actually can't go out in the sun much it makes me feel horribly unwell.
     
    merylg, soofke, Valentijn and 2 others like this.
  17. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    438
    Likes:
    704
    argentina
    I´ve seen many people stating that they're not accurate at all or even a fraud. I personally found them very interesting and worthy of consideration, what do you think?
     
    MEMum likes this.
  18. Hip

    Hip Senior Member

    Messages:
    10,521
    Likes:
    17,230
    There are some very cynical opinions on the work of Myhill et al, which I think are completely unfair.

    I have to admit, like most people on this forum, I did not take much notice of the mitochondria research of Myhill, Booth and McLaren-Howard when it was first published in 2009, some 7 years ago now. For some reason, the idea that ME/CFS could in part be caused by mitochondrial and energy metabolism dysfunction did not really "click" with me at the time.

    I guess that may be because at that time I was more interested in possible viral and inflammatory cytokine explanations of ME/CFS symptoms.

    However, now with the work of Fluge and Mella as well as Robert Naviaux et al finding defects in the energy metabolism of ME/CFS patients, I am looking at Myhill et al's work with fresh eyes, and I think their work is incredibly interesting. The idea that mitochondrial dysfunction plays a major role in ME/CFS suddenly seems to make a lot sense, and ties together some of the facts that we know about ME/CFS.

    I would think that mitochondrial dysfunction may not be responsible for all the symptoms of ME/CFS; perhaps there is also a contribution from inflammatory cytokines disrupting metabolism and the brain.

    But I think it is high time people start to look at Myhill et al's work, because rather inexplicably, it has been neglected and sidelined; my feeling is that Myhill, Booth and McLaren-Howard are definitely onto something — something that in the next few years, and with the aid of further studies, we may discover is the central cause of ME/CFS.
     
    MEMum, paolo, merylg and 2 others like this.
  19. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    438
    Likes:
    704
    argentina
    I concur with you, considering the recent studies pointing to metabolic disfunction, we should pay atention to all studies related to that area of research. At the time the myhill studies came out, I was very interested in them since they not only pointed at possible factors contributing to the disease aetiology buy also proposed a potential treatment based on high dose nutritional supplements aimed at improving mitochondrial function, namely d-ribose, l-carnitine, coenzyme Q10, among others. By the way, could you please explain what "et al'" means?
     
    MEMum and merylg like this.
  20. Hip

    Hip Senior Member

    Messages:
    10,521
    Likes:
    17,230
    While this nutritional approach may be worth trying, my guess is that mitochondria may be dysfunctional in many cases of ME/CFS due to autoantibodies which attack them. So this might explain why rituximab works for some ME/CFS patients. So I think now there should be more research into what might be inhibiting mitochondrial function in ME/CFS, and in particular, what autoantibodies might be involved.



    Et al is a Latin phrase meaning "and others." It's usually used when a paper involves a number of researchers, but you don't want to list everyone's names all the time, so you say Myhill et al, or Booth et al.
     
    MEMum, paolo, lauluce and 1 other person like this.

See more popular forum discussions.

Share This Page