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    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    @Brian Hughes @Tom Kindlon this is reality. Whilst I do welcome Keith Geraghty's venture in paediatrics, I have significant concerns re the recording of recovery and the actual diagnosis ( as it is currently a dustbin diagnosis -one can see this from much paediatric research), to have...
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    NICE guidelines and the needs of children with ME

    @Brian Hughes @Tom Kindlon this is reality. Whilst I do welcome Keith Geraghty's venture in paediatrics, I have significant concerns re the recording of recovery and the actual diagnosis ( as it is currently a dustbin diagnosis -one can see this from much paediatric research), to have...
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    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    This needs to be widely disseminated. I am considering sending to my GP.
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    UK CMRC 2018 Conference Dr Nina Muirhead

    What new NICE guidance ?
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    A Systematic Review of Probiotic Interventions for Gastrointestinal Symptoms and Irritable Bowel Syndrome in CFS/ME (2018) Marshall-Gradisnik et al

    After a strong morning coffee i have revisited this. I think this reaction may be tied to specific groups of man made chemicals. As the vit D treatment was part of a course to treat deficiency , the prescription was changed for the next dose with no E104, and there was still a reaction, albeit...
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    A Systematic Review of Probiotic Interventions for Gastrointestinal Symptoms and Irritable Bowel Syndrome in CFS/ME (2018) Marshall-Gradisnik et al

    I had an interesting conversation with ER doctor after they had consulted the on duty pharmacist. My daughter has reacted to different medicines - the reaction in both cases was attributed by the pharmacist ( and one ER doctor) to the colouring in the capsule. Both were E104, which is ( i am...
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    (not a recommendation) What if exercise makes you worse?

    We had a rheumatology appointment last week - trying to rule out stuff as joint pain in particular is worsening. Lovely doctor but clueless. She had a physio in attendance, keen to promote an exercise programme. ......
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    A Systematic Review of Probiotic Interventions for Gastrointestinal Symptoms and Irritable Bowel Syndrome in CFS/ME (2018) Marshall-Gradisnik et al

    Except certain E numbers - not used in food , but commonplace in medicine . The common side effects of many drugs ( itching, rashes, etc) not be the drug itself, but the colouring. Edit spelling
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    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    The fascinating part of the presentation was the analsis of what the enzymes did. There are probably many other genes where function overlaps and it is simply assumed that others within the " group" compensate. Given what has been found - what if they don' t What are the most common of such...
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    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    Cortisol seems important as ( as far as i can tell and i coukd be wrong) it has no " nested control" system as Barry has previously described- perhaps because it is a key player in fight or flight, and hence survival. It also impacts hundreds of other genes and processes , ( including...
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    [Just a registration] Paediatric immune dysregulation disorders - FITNET plus from Elise van de Putte ISRCTN12612526

    Perhaps of interest to @dave30th ans @Mark Vink as it seens to repeat issues highlighted with other paediatric studies.
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    PIP, ESA, and other things I can't claim

    Action for ME have welfare officers who an help advise on this stuff - email welfare@actionforme.org.uk
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    Immunoglobulin for chronic fatigue syndrome (CFS/ME): systematic reference list

    Transcript of Dr. Speight interview https://www.prohealth.com/library/video-nigel-speight-me-in-children-part-2-32465
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    Immunoglobulin for chronic fatigue syndrome (CFS/ME): systematic reference list

    Nigel Speight used this with some success in paediatric cases . I' m sure I saw this in an interview clip.
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    UK CMRC 2018 Conference Dr Nina Muirhead

    Nina Muirhead visited one of the mum's on a parent's forum and came across as caring, supportive and determined to address the inequalities in care and lack of medical knowledge. We need more such medics.
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    Ketogenic diet

    For some reason dairy prompts skin reaction and a bit of gut discomfort. Mainly milk, cream , cheese. Did try ghee last year and seems to be a fise/ redponse thing
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    David Tuller: Trial By Error: My Latest Letter to Archives of Disease in Childhood

    Thank you for responding as i was elsewhere. I had a friend in the late 1980s who was a heamophiliac , was affected and sadly died from from AIDS.
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    David Tuller: Trial By Error: My Latest Letter to Archives of Disease in Childhood

    This is the UK. Generally it seems that if there is a cock up / scandal that we wait until either people are dead, or no longer practising ( retired) before any actions are taken. You only have to refer to recent paedophile scandals and the current very slow progress of the contaminated blood...
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    David Tuller: Trial By Error: My Latest Letter to Archives of Disease in Childhood

    Thank you for your persistence. I think they are secretly hoping that you give up.
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