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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Adrenal Fatigue: A Possible Element of ME/CFS?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 2, 2012.

  1. Ema

    Ema Senior Member

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    Hydrocortisone will not fix ME/CFS and should not be administered without appropriate testing. If anyone expects a miraculous recovery from hormone replacement, they will likely be disappointed. But for me, significant reduction of symptoms such as fatigue and pain and a return to life out of bed have been *enough*.

    There are no well designed current studies aimed directly at this issue. No one wants to fund them because there are no financial benefits.

    No one wants to talk about the benefits of low dose (defined by conventional medicine as less than 40 mg of HC per day) steroids because everyone gets nervous about adrenal suppression. But doctors ARE using them in their practices because they realize that it is a Goldilocks problem - too little is just as much of a problem as not enough. And other doctors are trying to treat the underlying brain dysfunction, and other doctors try to use herbal remedies to avoid the stigma of steroids.

    It would be amazing to have a one-size fits all solution, but it is unwise in my opinion to discount the anecdotal evidence of many patients who have been helped by steroids by discounting them based on antiquated research that is limited in scope at best.

    DHEA has been shown conclusively to benefit patients with Addison's when levels are low. I personally have also benefited from raising my DHEA levels from 6 to around 150. My eyes were so dry that I spent a fortune on drops before DHEA. I rarely use them anymore and that is just one benefit.
    heapsreal likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Theres little evidence on dhea because theres little research being done on it as the pharma companies cant patent it. I dont agree with taking these things blindly but if tested low then supplementing these to get them to a normal level i think is sensible. DHEA is quite safe if taken for the right reason and it doesnt have any negative feedback issues like alot of hormones like prednisone etc.

    Low cortisol i think can be improved with other tretaments, i use pregenolone which has no negative feed back issues like dhea and for me can help increase cortisol and energy. hydro cort probably should be only used if other treatments have failed. there might not be alot of evidence for increasing cortisol but for those who have low levels, improving their cortisol to normal seems to help alot of people. Its not a cure but a piece of the puzzle i think. Also about balancing hormones back to normal.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yes and no, problem is they arent taught anything about these issues and there are no specialists to refer us to. I suppose just dont put your hand up to build buildings u dont have experience with. All this is why many of us become our own doctors. Doctors can get in trouble for treating beyond their scope of practise, probably because it makes the bad docs look even worse??

    We do agree alot on things dont we :thumbsup:
    Ema likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I agree they cant be expected to know everything but so many doctors deserve getting bagged as they arent honest at all about that medicine dont know everything and they go around acting like Gods and not listening to those who are experiencing illness.
    heapsreal likes this.
  5. Ema

    Ema Senior Member

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    Most people with ME/CFS related adrenal issues would do better with a low dose stim test. This will still miss about half of the people with secondary adrenal insufficiency but it is a better choice than the full dose test. You can google ACTH stimulation test. The Wikipedia article is pretty reasonable in this case.
    Enid likes this.
  6. taniaaust1

    taniaaust1 Senior Member

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    For me with low dose hydrocortisone.. the answer is no I didnt feel any change at all (even thou my test results showed out of normal range low cortisol). There is a possibly thou that maybe I wasnt put on a high enough dose of hydrocortisone.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Agree, i have more respect for i doc thats say they dont know then one who just makes crap up pretending to know better.
    merylg likes this.
  8. caledonia

    caledonia

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    "For most of us with ME/CFS, our adrenals are structurally fine. They simply do not process signals from the brain appropriately. "

    I believe this is true. Rich Vank said that the signalling is lost because of glutathione depletion in the hypothalmus and pituitary (which control the adrenals). This is due to a partial methylation cycle block. Restoring methylation and raising glutathione should restore adrenal signaling.

    Case in point - my adrenals have been flatlined on adrenal saliva tests for many years. However, I can't tolerate any amount of any kind of adrenal supplement. Everything is too overstimulating. The best I can do is replace the salt and magnesium that are massively lost due to this problem.

    Last year I went through horrible SSRI withdrawal. Within a few months my adrenals went from almost zero across the board, to extremely high across the board. I had to take Relora to lower them back down! If my adrenals were truly "fatigued" there would be no way this could happen.

    I have been tested and do have methylation problems. I'm currently working on methylation treatment in the hopes that this will ultimately fix the adrenal signalling and a multitude of other problems.

    This is not to say that some people may not have actual adrenal fatigue. I don't know how you tell the difference because on an adrenal saliva test, they look exactly the same -maybe by how they respond to glandulars? Some people do tolerate and get benefit from them.
    heapsreal likes this.
  9. LisaGoddard

    LisaGoddard Senior Member

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    This article made shocking reading as I identified with many of the symptoms. I always wondered wondered why in the early evening, around 6ish, I suddenly felt better for a while.
    I did try pregnenolone which helped my cognitive function but made the inflammation much worse so had to stop.
    Does anyone know if 7 keto DHEA would be an option? I don't know if it helps the immune system as DHAE does?
    I am highish risk of breast cancer so am a little reluctant to take DHEA.
  10. Mattman1

    Mattman1

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    I also wonder, did Rich ever get to do tests on normal, non-CFS patients in relation with those who have CFS concerning the Methylation block? Wanted to know the ratio of the block and severity of it in relation with 'healthy' people.
  11. nanonug

    nanonug Senior Member

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    As far as I know, no.
  12. AFCFS

    AFCFS Senior Member

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    Has anyone had this checked, or heard other studies of similar content?

    Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study.

    "The right and left adrenal gland bodies were reduced by over 50% in the CFS subjects indicative of significant adrenal atrophy in a group of CFS patients with abnormal endocrine parameters."
    Enid and Little Bluestem like this.
  13. nanonug

    nanonug Senior Member

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    Psychosom Med. 2005 May-Jun;67(3):433-40.
    24-hour pituitary and adrenal hormone profiles in chronic fatigue syndrome.

    Di Giorgio A, Hudson M, Jerjes W, Cleare AJ.
    Source

    Department of Neurological and Psychiatric Services, University of Bari, Bari, Italy
    Abstract

    OBJECTIVES:

    Disturbances of neuroendocrine function, particularly the hypothalamo-pituitary-adrenal (HPA) axis, have been implicated in the pathophysiology of chronic fatigue syndrome (CFS). However, few studies have attempted to measure blood levels of pituitary or adrenal hormones across a whole 24-hour period in CFS, and those that did so have used infrequent sampling periods. Our aim was to assess 24-hour pituitary and adrenal function using frequent blood sampling.
    METHODS:

    We recruited 15 medication-free patients with CFS without comorbid psychiatric disorder and 10 healthy control subjects. Blood samples were collected over 24 hours and assayed for cortisol, corticotropin (ACTH), growth hormone (GH), and prolactin (PRL) levels on an hourly basis during daytime hours (10 am to 10 pm) and every 15 minutes thereafter (10 pm to 10 am).
    RESULTS:

    Repeated-measures analyses of variance were undertaken using hormone levels averaged over 2-hour blocks to smooth curves by reducing the influence of sample timing relative to secretory burst. For ACTH, there was both a main effect of group, suggesting reduced mean ACTH secretion in patients with CFS over the whole monitoring period, and a group-by-time interaction, suggesting a differential pattern of ACTH release. Post hoc analysis showed reduced ACTH levels in CFS during the 8 am to 10 am period. In contrast, there were no significant abnormalities in the levels of cortisol, GH, and PRL in patients with CFS over the full cycle compared with control subjects. Cosinor analysis found no differences in the cortisol circadian rhythm parameters, but the ACTH rhythm did differ, patients with CFS showing an earlier acrophase.
    CONCLUSIONS:

    Patients with CFS demonstrated subtle alterations in HPA axis activity characterized by reduced ACTH over a full circadian cycle and reduced levels during the usual morning physiological peak ACTH secretion. This provides further evidence of subtle dysregulation of the HPA axis in CFS. Whether this dysregulation is a primary feature of the illness or instead represents a biologic effect secondary to having the illness itself remains unclear.

    PMID: 15911907
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  14. MishMash

    MishMash *****

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    Adrenal fatigue is not a "possible element" in my opinion. It is a huge factor. It is as true as the day is long. Unfortunately, we do not know why.
    GracieJ likes this.
  15. jimells

    jimells Senior Member

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    The medical industry never hesistates to use this as an excuse for inaction. I don't think it holds much water. If all I knew about computers came from the programming school I attended in 1974 - 75, I'd still be using punched cards. Is there much demand for punched cards today?

    I find the phrase 'adrenal fatigue' to be problematic, and about as useful as the phrase 'chronic fatigue syndrome'. It doesn't really tell us anything. I suppose one could say that a heart with blocked arteries is tired, but I have never seen this described as 'cardiac fatigue'.

    I have many of the symptoms associated with a screwed up cortisol cycle. For reasons that were unclear to me (the cortisol blood test was 'normal') an endocrinologist ordered the ACTH stim test. The results didn't show a problem. The endo never investigated potential problems further up the HPA axis, and simply wrote a report claiming I was 'seeking attention' and needed antidepressants.

    My personal opinion is that I don't have 'adrenal fatigue', but there is an HPA axis problem. I've just received the supplements for the Simplified Methylation Protocol, and I'm hoping that will help.
  16. Enid

    Enid Senior Member

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    Well different problems at different stages and this was one of mine. Check it all out.
  17. globalpilot

    globalpilot Senior Member

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    No, but the lab that runs the test - Health Research and Diagnostics - did. He refers to it in his paper.
  18. nanonug

    nanonug Senior Member

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  19. valentinelynx

    valentinelynx Senior Member

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    Actually I believe the studies showed the opposite. Looked this up a while ago when I started on low dose hydrocortisone (5 mg twice a day - which has helped my tolerance for stress signficantly). I did find this letter which summarizes some of the results well, it is from THE LANCET • Vol 353 • May 8, 1999, p 1618.

    "Sir—Anthony Cleare and co-workers1 report that the use of low-dose hydrocortisone (5 or 10 mg daily) is associated with substantial reductions in self-rated fatigue and disability in patients with CFS. Their regimen was not complicated by suppression of endogenous adrenal glucocorticoid secretion. McKenzie et al,2 however, obtained less impressive results with daily doses of 25–35 mg of hydrocortisone in CFS, and their doses led to endogenous adrenal glucocorticoid hyposecretion. These workers2 refer to Jefferies’ report3 in which 371 patients were treated with 20 mg or less hydrocortisone daily in divided doses and at maximum intervals of 8 h. They summarised the findings of Jefferies as follows: “Low- dose glucocorticoid replacement, defined as 20 to 40 mg of hydrocortisone in divided daily doses, was felt to be safe, to cause no symptoms other than occasional gastric distress, and to benefit patients with chronic fatigue”. The dosages McKenzie et al used were larger than Jefferies recommended. Also, none of Jefferies patients were treated for CFS, hydrocortisone was used for up to 9 years, and patients withstood major surgical procedures and acute severe illnesses uneventfully without change in dosage.3 The findings suggest an adequate stress response.
    The features of CFS and fibromyalgia overlap greatly,4 and these two conditions may well be different presentations of the same illness.4 Cortisol secretion is reduced in both
    CFS1,4 and fibromyalgia.4 Adrenal androgen secretion is as impaired in fibromyalgia as in CFS, as shown by reduced serum concentrations of dehydroepiandrosterone sulphate (DHEAS), and this decrease probably contributes to fatigue and pain in fibromyalgia.5 Serum DHEAS constitutes a more sensitive indicator of adrenocortical hypofunction than glucocorticoid secretion. Hydrocortisone at dosages of 20 mg daily (or even less) suppresses adrenal dehydroepiandrosterone secretion.3 These data implicate the beneficial effects of low doses of hydrocortisone in CFS as being attenuated by their suppressant effect on adrenal androgen secretion. The potential role of adrenocortical hypofunction in these often disabling conditions could be examined in a controlled trial of hydrocortisone in combination with DHEA supplementation in patients with CFS or fibromylagia, or both.
    *Patrick H Dessein, Edward A Shipton
    *Rheumatology Unit, Milpark Hospital, Johannesburg 2109, Republic of South Africa; and Department of Anaesthesiology, Baragwanath Hospital, Pain Relief and Research Unit, University of Witwatersrand, Johannesburg
    1 Cleare AJ, Heap E, Malhi GS, Wessely S, O’Keane V, Miell J. Low-dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial. Lancet 1999; 35 3: 455–58.
    2 McKenzie R, O’Fallon A, Dale J, et al. Low- dose hydrocortisone for treatment of chronic fatigue syndrome: results of a placebo controlled study of its efficacy and safety. JAMA 1998; 280: 1061–66.
    3 Jefferies WM. Low-dose glucocorticoid therapy: an appraisal of its safety and mode of action in clinical disorders, including rheumatoid arthritis. Arch Intern Med 1967; 119: 265–78.
    4 Buchwald D, Fibromyalgia and chronic fatigue syndrome: similarities and differences. Rheum Dis Clin North Am 1996; 22: 219–43.
    5 Russell IJ. Neurochemical pathogenesis of fibromyalgia syndrome. J Musculoskeletal Pain 1996; 4: 61–92."
  20. Shell

    Shell Senior Member

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    The place of Hydrocorisone in HPA-axis interests me a lot. Now that my POTS is finally to be investigated it willmost likely be hyperadrenergic pots I am landed with (or combo).
    As a kid and teenager I was frequently given IV hydrocortisone in hosptial because of status asthmaticus. I spent a lot of time on antibios and oral prednis due to repeat chest infections.

    Even these days I find that once I've kicked the worst of the infection I feel so much better generally when on pred.
    But - have all those high steroid doses over the years kicked my HPA into the gutter, or did it help put off the inevitable?

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