arrow16 Comments
  1. Elizabeth
    Aug 04 - 1:29 pm

    How are “Perceived Stress Management Skills” defined?

    I have a daughter who I’m sure would define herself (and rightly so) as having good to excellent Perceived Stress Management Skills. Like others with severe ME she has to deal with how mind-numbingly tedious it is to be stuck in a bed all day, needing to rest for prolonged periods after very short periods of extremely light “activity” (which would include listening to a podcast or audiobook), and this going on day after day after week after month, and now, after year – no holidays. Throw in horrible PMS, reactions to foods, medications and supplements, isolation, and not having a clue how long it will all go on for. So when talking about the stress management skills required for a severe chronic illness such as ME, we are talking about Olympic level skills. Stress management in this situation is stressful and requires enormous exertion and self-discipline.

    How does something like Cortef fit in to help alleviate the stress of stress management?

    • Geraldine
      Aug 05 - 4:13 am

      You mention in your post that your daughter has PMS many women with Endometriosis have a diagnosis of ME/CFS/FMS and might be worth looking in to.

    • Cort Johnson
      Aug 06 - 6:41 pm

      I agree with you Elizabeth and you put it better than anyone I know; we are talking about Olympic level stress management skills for many with ME/CFS – which is probably why many don’t find it that effective. It can seem puny compared the challenges facing people with ME/CFS.

      A Lenny Jason article suggested that a subset of the more ill are doing lots of and pacing stress management and not getting that much benefit from it.

      One of the questions in the PSMS went something like this “I can use visualization to reduce my head pain”….I’m afraid I don’t know any more of them.

  2. OM
    Aug 04 - 1:49 pm

    Hi Elizabeth,

    You asked about Cortef and I can tell you from my own experience that Adrenal Cortex Glandulars, not whole adrenal, and or Cortef, help a lot! I have both low thyroid and low cortisol along with ME/CFS and taking both natural thyroid hormone and Cortisol has helped me a great deal to feel better each day and avoid some serious problems from having low levels of the most important hormones in the body. To test Thyroid you need to have FREE T4, FREE T3, and thyroid antibodies as well as the TSH which is the only test usually done. To test Cortisol you need either four times a day saliva testing or early morning blood cortisol levels. If low an ACTH stim test should be done. If either hormone tests low replacing them with bio-identical natural hormones can make a world of difference. LDN also helps many as does testing and treating any MTHFR issues present. Best wishes to you and your daughter.

  3. Tim
    Aug 04 - 4:18 pm

    I take cortisol and have been for about 7 years now, as I produce no cortisol on the long synatcthen test.

    While it is very true in my experience that if you take an adequate dose of cortisol you have much better stress management skills, I can’t personally see how you 1st get good stress management skills if your cortisol is already low or lowish, and then this will give you more cortisol, as this study is suggesting.

    If you have lowish cortisol you have worse stress management skills period.(as well as worse tolerance of the stress of heat, cold, exercise, illness etc not just emotional/mental stress). The best way to rectify this is to take cortisol or a diet or supplement that will increase cortisol IMHO.

    So this study is suggesting if you get better stress management skills 1st you will then produce more cortisol. I don’t get it. I ‘ve never heard of it working both ways, this is new to me this one I’ve gotta say. I’ve never heard of this on any of the Addison’s/ Hypoadrenalism websites but maybe I’m wrong.

    It’s just I don’t see how you will get better stress management skills in the first place if your cortisol is already low, other than being an eternal optimist, and having a never give up attitude, which most of us already are living with this illness day to day. Don’t see how it gives your an increase in cortisol though, everything I have been taught is that an increase in stress is what will increase your cortisol. Therefore a better percieved stress management coping mechanism would mean less stress and therefore less cortisol.
    That is the conventional wisdom in endocrinology anyway.

    Tim

  4. Darden Burns
    Aug 04 - 7:34 pm

    My symptoms of adrenal exhaustion both experientially and as measured by cortisol levels resolved after a year and a half of doing LENS neurofeedback training. I was originally diagnosed with adrenal fatigue in 1990 and treated with hydrocortisol and DHEA. I felt better taking these hormones at first but their benefits decreased over time. I spent a couple of years taking Chinese herbs and doing acupuncture but had a similar experience. I benefited from learning a biofeedback relaxation skills but my cortisol levels as measured by saliva Adrenal Stress tests over a 18 year period remained low with the exception of when I was taking hydrocortisol. I started doing LENS neurofeedback in 2008 and during that time was not pursuing any other therapies or taking any supplements. In 2010 my cortisol levels were within normal range and stayed there when I retested in 2012. LENS (www.ochslabs.com) is particularly effective in treating trauma by reversing adaptive stress patterns in the brain. Treatment involves very short (a few seconds per session) feedback of the dominant frequency the brain is producing at an offset. This results in the brain jumping out of its existing patterns and breaking up dysfunction. Adrenal exhaustion contributes to the fatigue experienced by many people with CFS and FMS but it is only one part of the puzzle.

  5. Matthias
    Aug 04 - 11:52 pm

    another “who gives a shit study” that moves things no further forward.
    Cort – when can we expect results on the Norwegian rituximab study?
    We need a game changer, and these researchers – however well meaning – aren’t going to deliver it.

    PS I’m getting good results from nicotine. Nicotine reduces microglial activation.
    More research in this area, PLEASE.

    Brain and autoimmunity…that’s where focus is needed

    • Cort Johnson
      Aug 06 - 9:15 am

      :)

      I think it’s going to be awhile – at least a year – on the Norwegian Rituximab study. I don’t know for sure but I remember being surprised at how long it was going to take.

      I think of “who gives a shit” studies as pointing out ways to help some people maintain until the real goods are delivered. I certainly understand where you’re coming from though….

      Interesting about nicotine…..can you take nicotine without having worries about addiction?

      • Matthias
        Aug 07 - 2:48 am

        Well I am sorry to be blunt but Klimas et al have been around this for 20 years or more and this is what we get….we need some anger
        …we need some fire in the belly…its just not good enough

        • Cort Johnson
          Aug 07 - 3:36 pm

          Believe me. this is a very small part of what Dr. Klimas is doing. She has a major program going and she has far-reaching plans and I’m going to report on them soon. :)

          • Matthias
            Aug 08 - 12:21 am

            I hope you are right Cort, I really do.

  6. Angela
    Aug 05 - 11:03 am

    I’m bedridden yet have high cortisol levels at all 4 points during the day on the saliva cortisol test. My PEM is horrible and my inflammation is through the roof. So, for me, this study is nonsense.

    • Cort Johnson
      Aug 06 - 9:13 am

      Maybe it’s more accurate to say this study doesn’t fit you? Low cortisol is, after all, common in ME/CFS. High cortisol, of course, isn’t good either; for one thing it means you are suppressing your immune system big time (but doesn’t seem to be helping your inflammation). ME/CFS is definitely a heterogenous illness.

      I’m not really clear how important the low cortisol found in ME/CFS; it is after usually mildly low. I suspect other factors will have much more of an impact.

  7. Fiona
    Aug 06 - 6:16 pm

    Thanks for a terrific article, Cort :-) I’m particularly interested in the findings about the cortisol awakening response – something I’d never heard of till I read your article.

    I’ve had CFS for four years. From the outset, I was freezing cold, had no stamina at any time of day (but particularly in the mornings, when cortisol levels are supposed to be the highest), and unrefreshing sleep. I also had zero ability to handle even mild stress – physical, emotional, financial etc.

    A salivary cortisol and DHEA test in 2012 showed low cortisol across most of the day (duh!) and low-normal DHEA. The doc put me on hydrocortisone for months, but it didn’t do any good. He also tried DHEA, but with negligible results. This was disappointing and puzzling. That’s when I began to realise that maybe something higher up the endocrine chain – like the pituitary gland – was misfiring somehow.

    In saying this, maybe the concept of CAR helps explain why I didn’t respond to hydrocortisone. No point supplementing your overall levels if the mechanism that ‘wakes up’ your cortisol in the mornings isn’t working! I’d love to know more about the CAR, what mechanisms are supposed to drive it, and how they might not be working properlly in CFS. Any chance of a follow-up article?

  8. NeverAgain
    Aug 07 - 8:04 am

    I was a participant in this study. Since that time, I have decided I will no longer participate in any study Dr. Klimas does that relates to mental/emotional issues. It all comes from this Dolores Perdomo – you’ll see cited on the study – who is a mental health specialist and who, from my discussions with her, does not understand the first thing about our disease. She said things to me like “use it or lose it” with regard to our brains when I was in the office for cognitive testing in only my first year of the illness – as if my poor cognition was my fault because I had given up trying to think! No, actually, I was heavily engaged in a mentally challenging job and the illness hit and THAT’s when my brain stopped working well. But I never gave up trying. Anyway, this woman has an agenda, and everything I’ve seen her behind pushes the old idea that our illness is in large part the patient’s fault due to being insufficient at skills or not trying hard enough, and actually her ideas of what is helpful stresses out all the patients and exacerbate symptoms. (Like for instance she recommended progressive muscle relaxation, which is excessively painful to patients because of the overflow of lactic acid already built up in those muscles such that when you tense them , you can’t release them again.)

    Others noted how completely unscientific and unspecific this study is – there are no clear definitions, all results are self-reported, and I personally find the data to be skewed because one self-reports without any context for when symptoms improve or worsen. For instance, often my symptoms got better but it was due to new medications and supplements, or better sleep, and there was no place to explain that – they assumed it was due to “stress management” – their stress management techniques were usually conducted in a very stressful way though, and actually agitated me as well as other patients I talked to more than without them (such that many people quit the study).

    I will never ever do anything associated with Dolores Perdomo again, and I am through answering questionnaires or participating in studies at Dr. Klimas’ office that relate to mental health. I do think mental health and stress management are very closely tied to ALL peoples’ health – that is obvious and already proven. I just think it is a total waste of patient time and resources to keep doing studies like this just to placate one person, when we know so little about the disease as the study mentioned. Come on, you were an AIDS researcher for 20 years, you’re a highly skilled immunologist, focus your time and effort and funding on questions that HAVEN’T already been answered and stop wasting time trying to make friends happy who don’t know the first thing about this illness!

    I’m glad you posted this Cort, because we do need to keep apprised of what is happening in our community and with our funding dollars, and perhaps there are patients out there who were unaware that they had issues with Cortisol or how it can affect the body. So it’s good to post it. But we as patients need to be informed enough not to participate in these studies simply because we want to keep our doctors happy or we think there’s no harm, and we need to stop coddling favorite researchers and pressure them to stop wasting time on things that are already proven and not really significant or part of their specialty, in a time when every single day counts and more and more of us die due to a failed body, or suicide. There is no more time to waste on life skills that all people, in any position in life, benefit from. Let’s focus now on what makes OUR patient community medically DIFFERENT from others!

    • Cort Johnson
      Aug 07 - 3:39 pm

      I detect a little frustration here :)

      Dr. Klimas has a very wide ranging research program – which I’m going to report on soon. I talked to Dr. Broderick at length about it in San Francisco – I just haven’t posted it. I think you’ll be pleased.

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