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  1. Sid

    Esther Crawley

    One way to avoid having to follow the 2021 NICE guidance on ME/CFS is to diagnose new people who come through the door with FND instead. Problem solved, ME/CFS disappeared.
  2. Sid

    Open US: Brain Donor Project

    They should have been doing postmortem examinations of brains and other tissues since the 1980s clusters. Better late than never I guess.
  3. Sid

    Chris Armstrong - Melbourne ME/CFS researcher, research updates and general chat

    Same here. It's a reliable indicator of what the rest of the day is going to be like.
  4. Sid

    Electroconvulsive Therapy

    More women get ECT for the simple reason that more women get depression than men. It’s a 60:40 split. There’s no conspiracy. The activists are trying to spin this into some women’s rights issue.
  5. Sid

    Electroconvulsive Therapy

    300 ECT sessions is far beyond the normal standard of care. I don’t know what NZ was like in 1994 but in 2024 Europe MRI is done routinely. The article also mentioned that the surgery for the benign cyst caused a stroke. The fake expert quoted at length is a known psychologist and ideological...
  6. Sid

    Mitochondrial structural alterations in fibromyalgia: a pilot electron microscopy study 2024 Israel et al

    Hopefully these findings are not an artefact of obesity and low physical activity levels often seen in FM.
  7. Sid

    Trial Report Prediction of myalgic chronic fatigue syndrome disorder with machine learning approach, 2024, Yagin & Georgian

    Machine learning with n=26 will result in an overfitted model that likely won’t replicate elsewhere.
  8. Sid

    Family healthcare patterns as a proxy for transgenerational transmission of functional somatic symptoms in early childhood... 2024 Hogendoorn et al

    What a disgusting study, implying that the families are somehow causing the condition due to increased healthcare utilisation. Of course "FSS" runs in families, it's probably heritable.
  9. Sid

    Thesis Characterising the Electrophysiological Properties of Cells in Health and Disease [on ME/CFS], 2024, Clarke

    Hopefully they will submit something for publication so we can read more details about how they recruited controls. Sometimes healthy controls are not so healthy as in the case of the NIH study where the healthy controls were relatives of patients and in many cases had orthostatic intolerance.
  10. Sid

    Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+

    In Table 2 they report the median number of seizures in each group at each timepoint (baseline, 6 months, 12 months). As you can see, despite randomisation there was an imbalance between the two groups in terms of the median number of monthly seizures at baseline which is problematic because one...
  11. Sid

    Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+

    Good question. No, the way they analysed this is they simply counted the number of seizures in the past month in the CBT group vs SMC group at 12 month follow up. They asked people at 12 months how many seizures did you have in the past 4 weeks and calculated the median in each group. The median...
  12. Sid

    Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+

    I was also taken aback by this sentence. I guess they’re saying that if you carry out 40+ statistical tests at 6 and 12 month follow-ups, as they did in the initial Lancet Psych paper + various follow-up papers, you get some significant results so it’s not all “negative”. Of course, trials don’t...
  13. Sid

    How to best move the understanding of ME/CFS forward (and the forum's role in that)

    PD patients tend to be older adults who lived full lives prior to being struck down by a well-accepted neurodegenerative disease. Lack of stigma and impending death means there’s little incentive to waste precious remaining life years on futile discussions about biology. ME strikes people in the...
  14. Sid

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Makes sense. The sensitivity analysis carried out by people upthread, with the single responder included, showed that the effect was changed (in favour of the null hypothesis). This means that the main analysis was not robust.
  15. Sid

    Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+

    Exactly. How is a person ever supposed to move from disability/unemployment toward employment if they are continuing to have the same number of seizures as before the treatment? CODES trial participants had a very low rate of employment at baseline (34%) so clearly the condition was disabling...
  16. Sid

    CAR-T therapy

    Successful use of anti-CD19 CAR T cells in severe treatment-refractory stiff-person syndrome https://www.pnas.org/doi/full/10.1073/pnas.2403227121 There's a pre/post video of the person's gait in the link provided. SPS is the autoimmune condition that forced Celine Dion off stage by the way.
  17. Sid

    Efgartigimod (Vyvgart) - what could the trial data possibly tell us?

    Two high profile trials for long covid failed in the space of one week. I think it's weird companies are launching these expensive clinical trials without doing any preclinical work to figure out what mechanism needs to be targeted. We have no idea what's wrong with these patients or what POTS...
  18. Sid

    Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+

    All of their behaviour starts to make sense when you realise that the primary objective of such research is to reduce healthcare utilisation, not to eliminate the symptoms (which is currently not possible). The goal of treatment is to convince the patient that nothing is seriously wrong and to...
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