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    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Exertion is not simply physical. We find emotional exertion is one of the biggest energy rappers, perhaps as it more difficult to gauge and less easy to control / reign in. Mental exertion can as bad as physical and can provoke overstimulatory sensory hell.
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    Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

    If you can't do this as an undergraduate because it us so basically wrong, it shows how badly the process has been corrupted.
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    Is sex worth the pain? Willingness to engage in sexual activity among partnered women with fibromyalgia, 2017, Gullickson et al

    So sorry to hear how,awful things have been for you. The article is perhaps not as bad as a recent one on endometriosis- this looked at the impact of painful sex if you were Male. I have a friend who has endometriosis which took years to diagnose, she sent me a link to the paper with some...
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    Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery - Harland, Crawley et al 2019.

    Given that Sonya Chowdery has , I believe, commented that recovery means full recovery it would be good if @Action for M.E. would comment on this. A tweet/ facebook page comment could be effective.
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    Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery - Harland, Crawley et al 2019.

    We seem to be going through a historical revisionist period in UK. Having redefined poverty many times to provide compliant/ improving spin on figures it should not come as any surprise that recovery is seen as similarly flexible. How on earth would so many psychological treatments work if...
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    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Healthy ? I took that to mean that nothing showed up in tests ( surprise surprise). So Standard medical practise healthy. All had fatigue, sleep issues and other symptoms ( not specified) , which sound familiar. His wife found mitochondrial abnormalities. Charles Shepherd was found to have...
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    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Behan tracked most of them down and found most though I do not know how many ) had recurrent/ lingering illness for the rest of their lives- it is in the youtube clip from Scottish BBCAlba that is on a different thread It may be this one ( no mic on work computer and no headphones with me)
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    Crossing Chiari and syringomyelia off the list

    My daughter has increased facial pain, and headaches. Much of this seems to stem from tight muscles ( very tight) and chiropractor gives relief via trigger point massage. You can do this to yourself potentially for some areas. Sadly muscles are simply getting tighter and relief is becoming...
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    Post-exertional malaise in veterans with gulf war illness, 2019, Lindheimer Cook et al

    Does this then relate to the postulated TH1 v TH2 immune response difference between GWI and ME ? If so could it hone in on the " something in the blood" ?
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    Post-exertional malaise in veterans with gulf war illness, 2019, Lindheimer Cook et al

    24 hours is not peak PEM for us. How and what was measured? Questionnaires or something objective?
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    Pain in ME–what helps you and what can I do?

    Yes you get drops, which also avoids filler/ capsule issues. However if female, you may also have titrate differently to adjust for monthly cycle. If itchy at mid and end cycle it could be ( if pre menipausal) that the estrogen: progesterone ratio is out of whack and this can impact seratonin...
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    Pain in ME–what helps you and what can I do?

    If you are itchy due to estrogen issues you may need to titrate any seratonin modifying drug carefully.
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    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    Timing is usually key - it's a distraction. Usually coincides with conference / publications / to counter positive developments and try to control narratives .
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    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    There is a vote and also an opportunity to comment
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    MEAction: "DEMYSTIFYING THE DIAGNOSTIC CRITERIA FOR ME AND RELATED DISEASE"

    I think vocabulary feeds into this. Over time terms have been bastardised, or their impact/ use has changed with mainstream use. My daughter feels she struggles to get people ( including medics) to understand how it affects her, mainly as the symptoms, such as fatigue, dizzy, etc are not...
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    Body mass in adolescents with chronic pain: observational study - Gauntlett-Gilbert, Bhat,Clinch 2019

    We observe an inverse correlation. Body mass decreases , pain increases.
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