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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Low Cortisol Hampers Treatment Effectiveness!

Discussion in 'Latest ME/CFS Research' started by Cort, Jul 18, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    This is an important study I think. I hope to get the whole paper at some point.

    It found that people with low cortisol had trouble responding to CBT; ie there's a physiological reason some people just do not do well with that type of therapy or I would suppose mindfulness exercises (Amygdala??, meditation) etc.

    This is so important in several ways. For one it really breaks the myth that CBT is it in this disease. The professional community basically knows that but the governments do not. Now a chief proponent of CBT is basically saying it doesn't work well in a sizeable portion of ME/CFS patients.

    For all the people who did not respond to CBT well - we have one answer. (CBT, by the way, has been shown to be helpful in several diseases including AIDS).

    But now what to do about this low cortisol? None of these people think taking cortisol is the answer. Yet low cortisol is important. Are there any other ways to get that cortisol up?

    Ashok Gupta believes the low cortisol is caused by amygdalar dysfunction. Is his program strong enough to break the hold low cortisol has on patients?

    This is the second study to find this by the way; Lenny Jason's study suggested that low cortisol hampers all sorts of behavioral/mindfullness exercises in ME/CFS.


    http://www.ncbi.nlm.nih.gov/pubmed/19607750?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
     
  2. Jody

    Jody Senior Member

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    Cortisol is manufactured in the adrenals is it not, along with adrenaline?

    This is my understanding, anyway. Due to various causes of stress, the adrenaline gets depleted, and the cortisol then gets used as a substitute. Eventually even the cortisol can get low, and then the pituitary tries to pinch hit which then involves more of the endocrine system being out of balance.

    (Some information reverse what I said about the adrenaline and the cortisol, there isn't total agreement there, but the outcome is the same -- depleted adrenals and a hit on the whole endocrine system.)

    The direct approach would be to build up the adrenals. Adaptogens do this.

    So, no, don't take cortisol. Take adaptogens, they make the cortisol and the adrenaline. (I think.:))

    At least, this is what my naturopath is doing with me.
     
  3. lcollins64

    lcollins64

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    Adaptogens

    Hey Jody,
    By Adaptogens do you mean products like Adrenal Cortex Fractions or what?
    Thanks!
    Lane
     
  4. lcollins64

    lcollins64

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    Jody,
    I see your location is Ontario, Canada. Do you see Dr. Byron Hyde by chance?
     
  5. Jody

    Jody Senior Member

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    Ooh, you've got me there, Lane.:D

    I have NO idea what those are. If you tell me what they are I can tell you if I meant them.:)

    I was talking about things like ginseng (a few different types), rhodiola rosea, ashwaghanda, cordyceps, borage, licorice, and reishi and shitake and maitake mushrooms. I expect there are more but these are the ones I can think of offhand.

    I used to take a tincture that contained the three types of mushrooms and licorice; I have tried ginseng (not so good for me but good for my son with cfs and for my husband with fm) and ashwaghanda. My son is having a good response to a borage combination tincture. And I have licorice tea.
     
  6. Jody

    Jody Senior Member

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    Lane,

    I think he is in Toronto, isn't he? Not sure. I've read some of his stuff and I think he's really sharp. I like what he says, from what I've read.

    He's many hours drive away from where I live. So, no, I don't see him. Just my naturopath down in the same area where I am. Nobody else I've seen in 17 yrs has made a dent in my cfs.

    Have you seen Dr. Hyde?
     
  7. Cort

    Cort Phoenix Rising Founder

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    From what I hear he's VERY expensive; over $10,000 to see - I like the idea of doing adaptogens though. Never tried them - certainly will try them.
     
  8. Jody

    Jody Senior Member

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    Cort,

    I think they'd definitely be worth a try.

    I think it could be a pretty safe guess that your adrenals are a bit depleted and could use some help.:)
     
  9. Sing

    Sing Senior Member

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    On Cortisol

    Hi Everyone,

    I haven`t posted yet on this site but have emailed a few times with Cort. Like his name, I wrote to him about cortisol, and the best brand of it, Cortef. I was prescribed this by a very helpful Family Practitioner, Michele Moore, for all my symptoms of CFIDS which included the profile for low adrenal functioning too. She gave me the ASDI test, a saliva test which is very precise when you follow all the rules for it. It tests cortisol levels throughout the day, instead of just the standard 8 am blood level that most doctors would prescribe. I was about a third down from normal and was very low activity through the day, spending a lot of time lying down, and if I exerted myself too much, I would start to go into flu-like symptoms of the sore throat, aching, malaise, etc. If I didn`t rest right away, I would get sick. Anyway, I started taking 5 mg of Cortef, about 10 am (when my level would drop down), then again between 3 and 4 pm, another 5 mg. That has been my regime for 10 years, and it has restored some normal functioning ability to my life. I can`t recommend it enough, if you have symptoms of hypoadrenia--trying it with your doctor as "a clinical trial". There is a very thorough book, written for doctors by an endocrinolgist, Dr. William Mackenzie Jefffries (Jeffrys?), called SAFE USES OF CORTISOL. Our situations are ones he would include as appropriate for this treatment.

    What an under-functioning HPA axis means is that the hypothalamus isn`t signalling the Pituitary enough/appropriately when there is a need for its hormones, and then the Pituitary isn`t signalling the Adrenals. So, there may be nothing wrong with either the pituitary or adrenal glands, just that they aren`t getting the message...

    Got to run!

    Cecelia
     
  10. Sing

    Sing Senior Member

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    Dr. Byron Hyde

    Dr Hyde is in Ottawa. He only diagnoses--doesn`t treat.
     
  11. Jody

    Jody Senior Member

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    Hi Cecelia,

    Welcome to the forums.

    I'm glad to hear you've found some things that have helped you.

    Confusing thing, this HPA axis. And so hard to know if you have it by the right handle. All we can really go by, ultimately, is whether or not it is working for us.

    I am glad to see so many people on here posting about the different trials and treatments they've had. Some of it is bound to make a difference for others. And maybe something posted by someone else will help for you ... or for me. :D

    And thanks for the info about Dr. Hyde. I've only read a bit of his stuff on line, and didn't know this.
     
  12. Sing

    Sing Senior Member

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    Dr. Byron Hyde

    Dear Jody,

    Thank you for welcoming me to the Forums. Dr. Hyde has a good website www.nightingale.ca (if I am remembering correctly). He calls his outfit the Nightingale Research Institute. He has been researching and meticulously diagnosing ME since around 1984 or 86, exclusively, and co-authored a big text book on the subject in the 90`s. I wish he treated too, but what I also wish is that doctors and patients would read and digest what he has learned so far, as a very strong basis for proceeding with new research and treatment ideas....Because, what I see over and over is that researchers (doctors and patients too) seem to fail to grasp the basics of what this illness involves and keep squandering money and time pursuing dead ends or covering old ground. We need to find intelligent life in this universe! Cort has created an excellent site here for just that purpose and I am grateful to find you all--

    Best,

    Cecelia
     
  13. Jody

    Jody Senior Member

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    Hi Cecelia,

    I have read some of Dr. Hyde's stuff a month or so ago. Found him during a google search, trying to find anything in my geographical area in the way of support groups or, anything really, and found nothing. But I did find an article of his which I found fascinating reading. I like that guy. :)

    I think it was in that article though (it's a while ago and I DO have a cfs brain so don't quote me on it) a view that I had not heard before.

    He said (I think :)) that there is cfs and there is myalgic encephaolmyelitis and they are not the same. Now I'd heard other opinions that touched on this before but they only confused me. He was very detailed and concise and explained it thoroughly.

    If I understood him correctly he was saying that with ME, abnormalities will show up in CT scans and other brain scans, etc. They have a definite and specific brain and nervous system malfunction.

    CFS, he said, was just as real, but a different malfunction that seems to present in a similar way but it is a completely different condition. It is a syndrome, that is to say, people have a combination of physical dysfunctions (each can be different from the next guys).

    If this is correct, I have cfs but I don't have ME. My CT scan and MRI showed a healthy brain. I have a syndrome, made up of food allergies and sensitivities, and resultant insulin resistance and syndrome X. Probably also bad reactions to shots, exposure to chemicals in the area I used to live, mold in a house I used to live in, exhaustion from too much stress, having too many babies :) and too many worry problems after my husband's injuries at work ... et cetera and et cetera.

    I found this very interesting. He says one big problem with finding solutions, is we're mixing apples and oranges (CFS and ME)and so research can't possibly get anywhere definitive.

    And he said, CFS as it is presently known in the medical and research community can't possibly lead anywhere at all, because CFS is a phantom condition, that is to say, "they" have decreed that if it can be a different disease, then it isn't CFS. Which if you take their hypothesis to its logical conclusion is saying that CFS doesn't actually exist because if you can put your finger on it ... it ain't CFS.

    Fascinating read.
     
  14. Jody

    Jody Senior Member

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    A little more on Dr. Hyde's article.

    If what he says is true, then ME people need one type of treatment and the cfs people need detoxing and more alternative, naturopathic treatments to remove the bad and build up the deficiencies they've developed.

    I know that this last seems to be true for me. That is what my naturopath is doing with me and it is most definitely working ....
     
  15. Jody

    Jody Senior Member

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    Yet another Postscript on the Dr Hyde / CFS thing. :D

    Sorry this is so broken up. I'd just wakened up from a nap when I started posting my other TWO posts on this.:eek:

    Forgot to add to the list of things that are part of the syndrome that Hyde says is CFS. Toxins, deficiencies, food issues, etc. PLUS (and I guess this is what makes it CFS and not something else) the final virus that became the hallmark for each of us, that was the final straw that knocked down the shaky house of cards of fragility and sent us spiralling.

    Don't know how I forgot to add that to the earlier list. Think it's been an important factor for many of us ... including me ...

    There! I think I am done. :)
     
  16. Sing

    Sing Senior Member

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    More on Dr. Byron Hyde

    Hi Jody,

    I think you are very smart and that you remember a lot and apply it very well--based on what you are writing here--just so you know.

    I want to add, re. Dr. Hyde`s material on CFS and ME and their distinctions, that what I think he is writing about is definitions. CFS, according to him, was delineated by a group of physicians who didn`t all know it well, and a few, barely at all. Some were most oriented towards Epstein-Barr virus effects, and what that clinical picture looked like to them. So it was a group definition by people who hadn`t closely studied it. Dr. Hyde, on the other hand, has exclusively devoted himself to studying and working out how to diagnose ME. People who think they have it, who may describe themselves as having CFS or ME, go to him and he does a very detailed history and an array of testing. A number of these tests are different than the standard ones, or have to be done differently, I understood, so that a standard brain scan, for example, might not do the trick. CFS right now, in my reading of him, is a composite description of a "syndrome" in need of further, and more accurate delineations. In addition to ignorance, there has also been politics, as we have seen to our misfortune, come into play. The skewing of CFS towards a psychiatric problem requiring anti-depressants and other psychiatric drugs, etc. was one of these; another was the dismissal of CFS and/or ME as non-existant, unreal. So Dr. Hyde is trying to work out the science, the facts, and then go from there. This makes sense logically. Even that he doesn`t do treatment. Logically, first there needs to be accurate delineations of what the condition (s) are and then ways to test them, before proceeding on to effective treatments.

    However, naturally, those of us suffering with these difficulties and limitations need to attend to our needs now, as well as we can figure out. So right now, people are trying all kinds of things and coming up with some helpful approaches, here and there. The solution hasn`t been found, but then there may be many conditions here, not just one to be treated.

    So, as poor as our cognitive functioning is at times, we have to do some careful thinking!

    Best to you,

    Cecelia
     
  17. Jody

    Jody Senior Member

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    Thanks Cecelia,

    I got the impression that he is at the same time, a businesslike, scientific man who is also extremely compassionate concerning this illness (or illnesses). And unlike many in the research community he is also quite down to earth and common sense in his views.

    I found him fascinating and a breath of fresh air.
     

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