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    Orthostatic intolerance

    Sorry to take this off thread- mods move elsewhere if appropriate. On the Facebook page for Dr Myhill ' s supporters there is one lady who has being doing a vagus nerve experiment with an adapted tens machine ( based on the Australian project) . She has had ME for 28 years with no...
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    Orthostatic intolerance

    It may depend on severity but there are a variety of meds that appear to improve function . Beta blockers seem to be the go - to for initial treatments, with others if these don't work out. I know of a teen whose life was transformed by POTS meds as it seemed io be a huge component of his illness
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Not giving up on potential uses for those specialist clinics and treatments easily are they ?
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    Parkinsons - Trichloroethylene exposure proposed as a risk factor

    Link to press article with Trichloroethylene bring a known risk factor for developing Parkinsons disease. Given other chemical associations with ME ( eg orgsnophosphates) this may be one to watch...
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    A pilot study of oxidative pathways in MS fatigue: randomized trial of N‐acetyl cysteine, Krysko, 2021

    It's a precursor to glutathione which can seemingly be low in ME/ CFS. It may be that the initial dosage boosted glutathione enough for body to adjust to a different state? Might just chase any imbalance elsewhere as a knock on from that ?
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    Lack of Skeletal Muscle Serotonin Impairs Physical Performance, 2021, Falabregue et al

    Does this relate to the metabolic trap hypothesis ? If the rate limiting step is tryptophan then does lack of it or too much of it impact muscles and ability to exercise? ( seratonin and estrogen relationship have been linked to pain too )
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    Covid-19 vaccination experiences

    From friends there seems to be a correlation between being on HRT and worse reactions . Totally anecdotal but interesting.
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    New draft NICE guidelines for chronic pain emphasises exercise, CBT and acupuncture over medication

    Perhaps you have to be colour blind to participate? ETA or perhaps they swop cardigans halfway through....
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    Adolescents with functional somatic syndromes: Symptom profiles, illness perception, illness worry and attachment orientation, 2021, Kallesoe et al

    BDS moving into paediatrics. FII will no doubt have a strong association . ... ETA tagging @Tilly
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    Relationship between Cardiopulmonary, Mitochondrial and Autonomic Nervous System Function after an Ind. Activity Prog, 2021, Newton,Morten

    How was the CFS cohort assessed/ selected ( given the known high rate of misfiagnosus)?
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    opthalmology appointment

    thanks trish - much appreciated
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    opthalmology appointment

    My daughter has an opthalmology appointment coming up - postponed from last April. We had a lovely young optician who was very concerned about headaches and refreed us on to get further checks done. Eyes are worse now , but this probabaly reflects worsening overall . Eyes are unrefreshed...
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    Trial By Error: CBT and Irritable Bowel Syndrome

    Does prescription only imply that it could gave a yellow card system?
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    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    I sat in an educational.psychology parental workshop and listened to the head of service suggest CBT for a non verbal autistic child in response to a parent asking how her son could be supported ... you can't make this stuff up ETA spelling
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    Effect of Melatonin Plus Zinc Supplementation on Fatigue Perception in ME/CFS: A Randomized, Double-Blind,Placebo-Controlled Trial,2021,Castro-Marrero

    Kids get melatonin via prescription in UK.
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    Effect of Melatonin Plus Zinc Supplementation on Fatigue Perception in ME/CFS: A Randomized, Double-Blind,Placebo-Controlled Trial,2021,Castro-Marrero

    Mm. We have high levels of serum B12 ( minimal supplement in a multi vit powder) and high MMA on organic acid test. Something is out of whack. I tend to think pwME are outliers on blood tests . Bodies are incorporating all the feedback loops they can to function. Looking outwith serum may give...
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    Cervical (neck) lymph nodes poll

    My daughters glands are not necessarily always swollen but they are always like rocks. On flares groin glands are problematic, but generally we can do a gland physiology dot to dot....... ,head and face, neck, armpits lungs, stomach .... before this I just thought they were armpits and throat !
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    Cervical (neck) lymph nodes poll

    My daughter says she feels no difference (but seems to complain about the left side more) ETA left glands mostly drain via thoracic duct right glands via lymphatic duct the thoracic duct seems to cover more glands
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    Left to themselves: Time to Target Chronic Pain in Childhood Rare Diseases, 2021, Sieberg et al

    A new CBT market?
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    If they were sued and lost ? If Dr Myhill' s GMC crusade found in her favour ? ????
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