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    Short Synacthen Test

    My daughter is having this test next week - I'll let you have feedback re how she found it afterwards.
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    Researcher Interactions Science for ME Q&A with Dr Montoya, 16th January 2018 question collection thread

    Could we ask what his diagnosis process is - as it is a process of exclusion what testing is done and which tests would be "core" given post glandular fever onset with stress prior Can he define the differences between CF and CFS in a paediatric setting (it tends to be interchangeable here) For...
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    Researcher Interactions Science for ME Q&A with Dr Montoya, 16th January 2018 question collection thread

    Given paediatric issues , could we ask about diagnosis process , PEM and PRS - it would be useful to have perspective from an expert
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    Esther Crawley's presentations (excluding the 2017 TEDx talk)

    Do the rest of the speakers adhere to same world view?
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    Jen Brea comments on Esther Crawley's behaviour

    There is much to continue to be concerned about as @Countrygirl may be able to confirm, EC has drawn up diagnostic criteria for PRS or PAWS ( persistent arousal withdrawal syndrome) which has PEM as a symptom ....
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    Elevated brain natriuretic peptide levels in chronic fatigue syndrome associate with cardiac dysfunction: a case control study, 2018, Newton et al

    If energy provision ( ATP provision via Mitochondria) is compromised then would this not account for some of the issues
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    Ranitidine (Zantac) for its IL6 inhibitory properties

    Yes, may try this however PPIs are no good long term.she was on omeprazole, clarithromycin and metrodiazole (?) I think she may have felt better as she could benefit from diet and supplements- we had been feeding a large microbiota rather than her!
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    Ranitidine (Zantac) for its IL6 inhibitory properties

    My daughter felt better whilst on H Pylori protocol of drugs - perhaps similar effect. GP and paediatrician both at loss.
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    Insecure Attachment and Unexplained Illness, A therapist's map - 21 April 2018

    Funnily enough, those i know with ME are the most emotionally resilient people i know.
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    Pain poll

    I looked into referred pain ( picture was on british arthritis website) and the area on back where pain was sorest for my daughter corresponded to stomach. Subsequently found H Pylori - may or may not have been coincidental . Chiropractor found slightly tilted and rotated pelvis which was...
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    Pain poll

    My daughter ticks all the boxes. Recently she has described her joints as being " cold on the inside" and having " too much air inbetween". She is still growing - achey knees have always been a sign of growth spurts. Having had chickenpox, shingles and glandular fever and what seems like a...
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    Breathlessness and air hunger in ME/CFS

    My daughter has a feeling that " the air disn' t get all the way down". This is worse with PEM. She had spirometry test at GP surgery which was not consistent enough to show anything - the practice nurse simply didn' t believe that she could not inhale/ exhale for a long enough period. No follow...
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    Tutorial: The Practical Application of Longitudinal Structural Equation Mediation Models in Clinical Trials (2017) Chalder et al

    For as long as they can get away with it
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    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    Given the insights into her childhood she shared on her TEDx talk, i think there is a whole other level informing her actions.
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    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    Wow! Shame our own media are not up to the task
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    Esther Crawley

    http://mentalhealthdaily.com/2015/05/13/delusions-of-persecution-causes-symptoms-treatment/
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    Contribution to science of Regius Professor Sir Simon Wessely: a thirty year retrospective

    https://w.soundcloud.com/player/?url=https%3A%2F%2Fapi.soundcloud.com%2Ftracks%2F337782649&color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false# Pandora' s Lab - when science gets it wrong. Apt
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    Contribution to science of Regius Professor Sir Simon Wessely: a thirty year retrospective

    https://w.soundcloud.com/player/?url=https%3A%2F%2Fapi.soundcloud.com%2Ftracks%2F337782649&color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false# Pandora' s Lab podcast - what happens when science gets it wrong
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    Petition: Approve the use of IV saline for treatment in PoTS and M.E for NHS Scotland patients

    I think timescale and quantity may be different ( but i don' t know). My aunt is bedbound and juggles dehydration with hydration. She is limited to the quantity of liquid she can drink . Even peeing is knackering
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    Petition: Approve the use of IV saline for treatment in PoTS and M.E for NHS Scotland patients

    If you are bedbound , drinking copious amounts of salty water brings other issues
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