1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

Dimensions of pure chronic fatigue: psychophysical, cognitive and biological correlates in the CFS

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jun 2, 2014.

  1. Marco

    Marco Old blackguard

    Messages:
    1,400
    Likes:
    1,094
    Near Cognac, France
  2. Cheesus

    Cheesus Senior Member

    Messages:
    271
    Likes:
    343
    Showing its relations to different measurements, our study reflects this multidimensionality, in a psychosomatic disorder such as CFS.

    Grammar good not.
     
  3. Cheesus

    Cheesus Senior Member

    Messages:
    271
    Likes:
    343
    It is true that a number of people reap benefits from psychological interventions, myself included. Does that mean we don't have real ME? Hard to say. Does it mean we might have a subset? More likely, I would think. Either way, the fact remains that for some people stress plays a large role in the onset of severely debilitating physical illness and the alleviation of stress can play a large role in the recovery from that illness.

    This is something that even Dr Myhill recognises. The quantity of anecdotal evidence is too large to completely ignore as fluke. To me, the direct experiential evidence is that the mind plays a large role in my illness. I don't need a weather man to tell me which way the wind blows.

    I know I might get a lot of backlash for this, but it is just what I see.
     
  4. user9876

    user9876 Senior Member

    Messages:
    796
    Likes:
    1,963
    I've wondered if stress is an energy use and hence helping people cope with stress reduces the amount of energy used and any effects this may have. Peoples stress levels often seem very different with some people easily getting very stressed others not. When stressed I naturally pace around and my mind is generally active hence my comments on energy usage. There is also a hormonal aspect to stress. So I can see that stress management techniques could be very useful for people who easily get stressed or active when stressed. In this way stress management could be seen as part of learning to pace.
     
    MeSci, Bob and Cheesus like this.
  5. Cheshire

    Cheshire Senior Member

    Messages:
    173
    Likes:
    466
    France
    There's a huge difference between saying that stress is an issue for you and claiming that ME/CFS is a psychosomatic illness.

    I've been so dismissed by doctors that it hurts to read that you're afraid of being backlash for expressing what you feel. I think that those who have been criticized on this forum are those who generalize their experiments to all the others.


    Lots of MS or lupus patients experience worsening of symptoms with stress.

    From the beginning of my illness I have never seen a correlation between stress and my symptoms. But in a way I would have liked to, because I wouldn't have had that impression of being useless, the only thing I can do is pacing.
     
    justy, rosie26, WillowJ and 3 others like this.
  6. Cheesus

    Cheesus Senior Member

    Messages:
    271
    Likes:
    343
    Yes I would agree with that. Furthermore, I have often noticed that I get a disproportionate response from my sympathetic nervous system relative to input. This used to happen to me in the car, for instance, where the vibrations of the car moving would set my nervous system alight in the most excruciatingly horrible way. Similarly, if I have a negative thought like "I bet I've over done it and will feel terrible tomorrow", then I can feel a disproportionately large response in my emotions and nervous system.

    This was brought home to me recently when I had a neurologist appointment. I was shitting myself leading up to it, and my symptoms and energy levels became a lot, lot worse. After the appointment, I balance my mind and my emotions, and thus my symptoms have shown significant improvement. This is a trend I am also seeing over a longer time period too.

    In a similar fashion to continually overburdening the body through improper pacing, constantly activating the sympathetic nervous system prevents the body's return to homeostasis. I have no doubt that there is something seriously physically wrong in my body. To me the question is not what that thing is, but rather what is preventing me from healing as I should be. As I say, I have seen time and again maladptive thought patterns and behaviours are playing a role in that.

    Some people will disagree, though to try and convince me that this isn't the case in my own mind and body will be a difficult task as I have seen it to be true time and again. I don't know you and I don't know your illness. If this means I don't have real ME, then fine, I'm not arsed what the label is. All I know is something seriously odd is going on in my nervous and immune system that is causing me seriously disability and that I have partial access to that disability via my mind.
     
    justy likes this.
  7. Cheesus

    Cheesus Senior Member

    Messages:
    271
    Likes:
    343
    Yes I wouldn't want to generalise to others! Each person is walking their own path, and the apparent heterogeneity of our conditions (and the people underneath those conditions) means that to generalise can be actively damaging to others.
     
    nandixon, WillowJ and Cheshire like this.
  8. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    ME/CFS is only particularly heterogeneous when it's badly defined.
     
    ukxmrv likes this.
  9. Cheesus

    Cheesus Senior Member

    Messages:
    271
    Likes:
    343
    I guess the question then is what are all of those people who don't fit the stringent definition suffering from? Either the definition is too stringent; the people have a different, undiagnosed condition; or, I guess linked to the first point, ME is actually a number of different conditions. I don't know which of these is true, and until there are biomarkers it would be difficult to speculate.

    ETA: Actually I do want to speculate (lol). I would think ME is actually a number of different conditions which perhaps have a similar central dysfunction. That would be my guess.
     
  10. Bob

    Bob

    Messages:
    8,912
    Likes:
    12,628
    South of England
    Personally, I think that CFS (Fukuda) is highly heterogeneous.
    I think Fukuda is only slightly more selective than 'chronic fatigue'.
    i.e. Fukuda just adds a few more symptoms to the mix (e.g. headaches and sleep issues) (post-exertional exacerbation is optional, and not a requirement.)
    Chronic fatigue with headaches and sleep issues doesn't define an illness.

    I think possibly the most pressing research goal is to discover and define subsets.

    The good thing about the study in the opening post of this thread is that it made an unusual attempt to narrow down the cohort by identifying fatigue caused by sleep issues and it then eliminated those patients from the study. Unfortunately, although using Fukuda for selection, the study was focused on chronic fatigue and didn't make efforts to identify post exertional malaise/exacerbation.
     
    Last edited: Jul 2, 2014
    justy and Valentijn like this.
  11. WillowJ

    WillowJ Senior Member

    Messages:
    3,151
    Likes:
    2,854
    WA, USA
    Well they did say:
    Not necessarily the same as PER, but also not TATT or every CF in the world.
     
  12. alex3619

    alex3619 Senior Member

    Messages:
    7,726
    Likes:
    12,655
    Logan, Queensland, Australia
    [Satire] I have solved the problem! We don't have ME. We don't even have ME/CFS! Since the basis for merging them is fatiguing illness, we have ME/CFS/Lyme/Lupus/AIDS/CVD/cancer/endocrine-dysfunction/mitochondrial-disease/depression/keep-adding-more-fatiguing-conditions-till-none-are-left-and-add-new-ones-when-discovered.
     
  13. halcyon

    halcyon Senior Member

    Messages:
    319
    Likes:
    264
    Politics aside, these cytokine results are really interesting to me. What other than an infection could be causing the sky-high IL-8? According to Wikipedia and COPE, IL-8 synthesis is stimulated by IL-1 and TNF-α (both found to be elevated here as well) and is released by monocytes/macrophages and various different tissue cells in response to viral infection, bacterial LPS, and dsRNA (chronic enterovirus, anyone?). I'm not a scientist or doctor, but this seems like an indication of an ongoing tissue infection.

    The low IFN-γ is also interesting. Deficient cell-mediated immunity perhaps?
     
  14. cigana

    cigana Senior Member

    Messages:
    649
    Likes:
    246
    UK
    I've seen 5 of KDM's patients' cytokine profiles and all of them show very high IL-8. My IL-8 levels have been consistently high for years. It would be interesting to know if different labs report different rates.
     
    snowathlete and justy like this.
  15. cigana

    cigana Senior Member

    Messages:
    649
    Likes:
    246
    UK
    For what it's worth I had slow onset but my IL-8 levels are sky high.
     
  16. cigana

    cigana Senior Member

    Messages:
    649
    Likes:
    246
    UK
    If anyone still needs the full text send me a PM :)
     
  17. cigana

    cigana Senior Member

    Messages:
    649
    Likes:
    246
    UK
    Here are the IL-8 results I've seen (Person 1-Person 4 I should keep anonymous):

    Person 1
    IL-8 2391 (0-15)
    IL-8 1156 (0-15)

    Person 2
    IL-8 30 (0,00 - 70,00)
    IL-8 mRNA 151 (0-70)

    Person 3
    IL-8S 11505 (0,00-15,00 pg/ml)

    Person 4
    IL-8 7610 ( 0,00 - 15,00 pg/ml)

    @Thinktank 's results
    IL-8 = 20051 (ref. range 0 to15)

    @justy 's results
    IL-8 Serum = 2394 reference range 0.00 - 15.00

    @acer2000
    "My own IL-8 is one of the most consistently elevated markers"

    @Valentijn
    IL-8, which is 727 pg/mL (0 - 15)

    All of them raised. (and all performed I think by RedLabs).
    -------------------------------------------------------------
    EDIT:

    I've also found 2 normal readings from labs other than RedLabs:
    http://forums.phoenixrising.me/index.php?threads/results-of-cytokine-multiplex-18-report.23929/
    http://forums.phoenixrising.me/inde...il-8-and-il-6-are-fine-with-genova-labs.8175/
     
    Last edited: Oct 19, 2014
    snowathlete and justy like this.
  18. cigana

    cigana Senior Member

    Messages:
    649
    Likes:
    246
    UK
    Attached is a paper which shows IL-8 can be raised by mycotoxins.
    Borrelia can also do this. Personally I've found it a bit of a minefield trying to trace the origin of raised IL-8.
     

    Attached Files:

    Valentijn likes this.
  19. justy

    justy Senior Member

    Messages:
    2,738
    Likes:
    3,081
    U.K
    Yes, to be honest I cant find much info on this. What s interesting is that I keep being told by doctors that my positive iGg results for Cpn and Bartonella cant possibly be chronic infections - they only show prior infection. And yet my IL8 is sky high, my Soluble CD14 is very high (related to LPS and gram negative bacteria - CPn is a gram negative bacteria) my PEG2 is extremely high.

    This is why KDM diagnoses patients like me with chronic infections because he sees the footprint of the infection in the immune system testing. If I am positive by testing for bacterial infections AND have these inflammatory markers, that can be related to bacterial infections of the kind I have tested positive for, then I see the sense in wondering if these infections have become chronic.

    A Doctor told me recently that I didn't have a chronic Cpn as the test was only serum (looking at published studies, this is not an unusual way of testing for this infection), they then said as it was Igg it could only show a past infection - well hello - the research documents and agrees that chronic Cpn, diagnosed by a single Igg result can play a arge role in adult asthma that is treatment resistant (like mine) and in COPD. Why do these Drs not want to look at the whole picture?
     
    cigana, AndyPandy and Valentijn like this.
  20. cigana

    cigana Senior Member

    Messages:
    649
    Likes:
    246
    UK
    Something else interesting regarding these high IL-8 levels. I was once given a very high single dose of amoxicillin and my illness was gone in 8 hours. And I mean gone....I had energy like normal, it was unbelievable.
    Now I've just found a study that shows amoxicillin is effective at lowering IL-8:
    http://www.ncbi.nlm.nih.gov/pubmed/9552221
     
    natasa778 and Bob like this.

See more popular forum discussions.

Share This Page