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    Our chronic fatigue syndrome/encephalomyelitis service is nice (?!), but is it patient friendly? experience of going beyond audit

    It would be good to know the split between cbt/ get within the 73%
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    Higher prevalence of ‘low T3 syndrome’ in patients with chronic fatigue syndrome: A case-control study (2018) Ruiz-Núñez et al.

    If you have thyroid panel values, this is the research software used - see link below. From the other place- there are a couple of threads on it and intracellular resistance http://spina.sourceforge.net/download.html I have a feeling this software may be for healthier folks, but it may throw...
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    United Kingdom: Science Media Centre (including Fiona Fox)

    From twitter
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    What is Action for ME's current (March 2018) position on the PACE trial?

    Generally appeasement is not a good tactic- history shows it dosn' t end well
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    BBC: Chronic fatigue trial results 'not robust', new study says

    By the way it' s not my child- my post reads badly.
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    BBC: Chronic fatigue trial results 'not robust', new study says

    The one posted here previously. A taste of the alternative reality. My daughter is wrll named.
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    BBC: Chronic fatigue trial results 'not robust', new study says

    My daughter's year head emailed yesterday( at 07.21) She has not been at school for 2 years. Ostensibly he was emailing as A had transferred to adult services in NHS and he was enquiring re consultant details , but he knew this happened in January . He had seen the BBC article and perhaps a...
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    Telegraph front page: Wessely photo wth Duchess of Cambridge & BPS back pain treatment

    MUS rollout....
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    United Kingdom: Science Media Centre (including Fiona Fox)

    I am hoping that this is not one of the children mentioned pre Christmas :(
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    United Kingdom: Science Media Centre (including Fiona Fox)

    May be off topic but this is why countering the narrative is so important
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    Higher prevalence of ‘low T3 syndrome’ in patients with chronic fatigue syndrome: A case-control study (2018) Ruiz-Núñez et al.

    "Euthyroid sick " Suggestions of receptor resistance . This is not new ground -it's been suggested for at least a decade, but as highlighted above, thyroid is poorly understood/ treated in UK Studies are also ongoing for glucocorticoid receptor resistance (Dr Bansal I think is involved in this)...
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    Higher prevalence of ‘low T3 syndrome’ in patients with chronic fatigue syndrome: A case-control study (2018) Ruiz-Núñez et al.

    this could link to hypometabollic state? see also potential for ROS activation- https://www.ncbi.nlm.nih.gov/pubmed/9633610- 3,5,3'-triiodothyronine induces mitochondrial permeability transition mediated by reactive oxygen species and membrane protein thiol oxidation...
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    How to challenge Pervasive Refusal Syndrome

    From the fitbit type monitor my daughter uses it' s clear that there us very little " deep sleep". Perhaps this is a function of " unrefreshing sleep" as it may be during this phase that the restorative processes are undertaken? I suspect however that this is a favourite questionnaire item....
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    How to challenge Pervasive Refusal Syndrome

    How were the children assessed? What tests were run?
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    How to challenge Pervasive Refusal Syndrome

    I' m sure Dr Nigel Speight would have a succinct opinion on this having treated severe paediatric ME.
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    Stem cell transplant 'game changer' for MS patients

    My aunt is sure she watched a tv programme where someone with ME had rhus ( she thinks it was in Newcastle)?
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    Dr Myhill’s complaint to GMC about PACE authors.

    Check out @MyhillNews’s Tweet: Sad and angry.
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    Protest against IAPT therapies - March 21st 2018

    Having seen the effect of the CBT sausage making machine on half a dozen adolescents i would definately concur. One size fits all actually fits noone well.
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    Low mood, poor quality of life and high symptom impact in adolescents with chronic fatigue syndrome/myalgic encephalomyelis, 2018, Neale et al

    If this was to be taken seriously at all, there would have to be a group with another chronic illness as a comparator.
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    Low mood, poor quality of life and high symptom impact in adolescents with chronic fatigue syndrome/myalgic encephalomyelis, 2018, Neale et al

    @Action for M.E. This is the kind of study that requires to be addressed. Many children have more than enough to contend with without this narrative continuing. As a charity part if your remit is education and representing your members. Perhaps this would be a good starter for 10.
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