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    #MEAction: Enrolling: Stanford School of Medicine Brain Tissue Bank

    I wonder if UK biobank could extend its remit to facitating this?
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    Simon Wessely: ‘ECT is in my own advance directive’

    It i am woefully uninformed re ECT, other than the effects it had in this instance. It was not effective for this woman. Would two teenage boys in their first year of university have lost their mother if another approach had been adopted - we will never know. Would ECT have been proposed if...
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    Simon Wessely: ‘ECT is in my own advance directive’

    I only know of 1 person who had ECT. They were an ex employee of my aunt who fell into a deep depression after her second marriage ended ( her first husband died of cancer when her twin sons were young) . It offered a brief respite - she took her own life the folliwing year . Therefore whilst it...
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    Metabolic features and regulation of the healing cycle—A new model for chronic disease pathogenesis and treatment, Robert K Naviaux, 2018

    Here it is reserved for thise whose test results indicate issues - to check extent of damage. You do mot have a hope in hell of one on the NHS if tests are within nirmal ranges and they are not that prevalent privately in our location. It seems to be that there is no clinical significance...
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    Hydrocortisone

    You are welcome. I hope that you can find and access something that helps .
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    A new approach to find biomarkers in (CFS/ME) by single-cell Raman micro-spectroscopy, 2018, Morten et al

    The BH4 angle might tie this into Rich von K ' s theory re folate availability. If folate availability is poor , homocysteine can form methionine via BH4 , this may compromise its availability for other reactions ?
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    Hydrocortisone

    De Vega has done a number of papers on glucocorticoid function - they are all listed on ME-Pedia, with text access : the epigenetic paper of 2017 may be of interest given you have your WGS https://me-pedia.org/wiki/Wilfred_de_Vega The low T3 paper suggests a hypometabolic state ( perhaps a...
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    Hydrocortisone

    Sadly people can get " parked" on them
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    Hydrocortisone

    The adrenal issue is key. From posts here and the other place adrenals seem a poor cousin to thyroid issues, yet failure to address adrenal issues will screw a lot up.UK does not seem a wonderful place for endocrine problems, though i' m sure there must be some good consultants and it may be the...
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    Hydrocortisone

    Didn' t work for my daughter. Set her back 6 months , but she dosn' t have POTS. There are glucociglucocoid sensitivity issues for some. Check out papers by de vega (?) You could perhaps x reference genes from your WGS to see it you may be affected.
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    David Tuller: Trial By Error: FITNET-NHS Recruitment Ad Promotes ''Recovery''

    Perhaps the use of a third party for recruitment may highlight issues with recruitment...
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    Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome, 2018, Burgess et al (inc Chalder)

    One for Carol Monaghan's Science and Technology committee. Who funds these kind of studies? Again peer review and journal assessment seems wanting. These are the kinds of studies that charities really need to comment on. It is not acceptable for such poor methodology to continue to flourish...
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    Pharmacogenetics

    Hopefully your doctor will be interested too ..
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    Hyperintense sensorimotor T1 spin echo MRI is associated with brainstem abnormality in CFS, 2018, Barnden et al

    when clicked to twitter message is that page does not exist
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    OMF update - Research on red blood cell deformability.

    I tried to argue for a fibroscan - ( we are now under an endocrinologist as key consultant) ; weird issues with herpes viruses, onset following glandular fever, detox issues/ drug sensitivities , H pylori ( i believe this can be linked to liver function) but his view was that there was...
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    Pharmacogenetics

    Since my daughter experienced side effects from drugs that " have no side effects" ( vit D) , and also glucocorticoids with doctors not really interested in digging deeper, i am interested in how genes and environment may affect responses. We have not done 23and me ( mainly because i don't...
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    Association between cytokines and psychiatric symptoms in chronic fatigue syndrome and healthy controls (2018), Groven et al

    I definitely did the wrong course at uni. Oh to be rewarded for churning out crap
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