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  1. Simon M

    Office of National Statistics: Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: Updates

    not really. Most researchers believe that long co-is likely to be many different things. This still isn't the research to demonstrate that ANY of it is definitely ME/CFS, though it certainly looks that way (decodeme will be looking at the genetics of people who meet ME criteria after Covid...
  2. Simon M

    Use of whole genome sequencing to determine genetic basis of suspected mitochondrial disorders: cohort study, 2021, Schon et al.

    whole genome sequencing remains very expensive at around £1000 per person. Decodeme only has funding to investigate DNA differences at close to million locations in the genome, which is very different. It plans to store part of the saliva sample (where people give consent) for future whole...
  3. Simon M

    Webinar: Massachusetts ME/CFS & FM research update - 23 October 2021

    Six significant findings? Following a migraine interlude, I'm now focusing on what looks to me to be the most interesting findings and I will be interested to know if others agree with my choices. Metabolomics 1. PEM-linked metabolites. Dr Maureen Hanson highlighted work by Dr Arnaud Germain...
  4. Simon M

    Improving images used to depict ME/CFS

    Merged thread There has been a lot of coverage of ME today with the release of the guidelines and a lot of really crummy photos illustrating articles, each one creating the impression that ME/CFS is a pretty trivial illness. I know there have been many attempts to tackle it on par in the past...
  5. Simon M

    Webinar: Massachusetts ME/CFS & FM research update - 23 October 2021

    3,500 words, when I copied into Word so I could print and read more easily! Clearly, all of us here are very grateful to you for sharing your notes and thoughts. Thank you too to @Michiel Tack (and Evelien?) I have taken the liberty of summarising here what struck me as the most important...
  6. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    Veronica is on a roll - she's just had another poem published, called Patient. It is about resilience: Patient, by Veronica Ashenhurst I felt muzzled in those flat, troubled years, A desert tortoise who knew secret burrow, Quiet’s heft, modest earth: I learnt the view from bed. ... She...
  7. Simon M

    A Comprehensive Examination of Severely Ill ME/CFS Patients, 2021, Chang et al

    Comments on the Severely Ill ME/CFS Patients Study (SIPS) In a nutshell: SIPS looks at patients who are much more severely affected than any other study I know of. The impact of their quality of life is more than most other illnesses. 1 – Background and 'how severely affected?' The idea of...
  8. Simon M

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    A friend of mine who is severely affected has just had a poem published about medical misogyny. Some excerpts are below but I hope people will visit the site for the full version. Tarnished idol, whom I sought to revere: ... You favoured male cell lines, male mice; blithely sent us home with...
  9. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    This thread contains excerpts from and links to all of Veronica's published poems. Veronica Ashenhurst, a friend of mine who is a Canadian lawyer and now severely affected, wrote this poem about medical misogyny based on her experiences and beyond. It has just been published in the poetry...
  10. Simon M

    What are the best coronavirus masks?

    Look for FFP2 masks (also N95, I think) which are higher grade filtration and protect the wearer as well as others.
  11. Simon M

    DecodeME - UK ME/CFS DNA study underway

    Parcel collection: I think one of the issues was Covid and post men women having to collect a package with a biological sample. I think individuals can choose to book a parcel collection themselves, but that the postie is free to refuse to take the parcel. And for that reason, it didn’t seem...
  12. Simon M

    DecodeME - UK ME/CFS DNA study underway

    I can't understand where they got that idea from. The whole aim of DecodeME is to find root causes as the critical first step to getting drug treatments (v hard to develop a drug if you don't know the biological problem). From the website: "The study should help us understand the disease and...
  13. Simon M

    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome, 2021, De Bellis, Montoya et al

    :) 1. Standard answer to "this is a main cause of ME/CFS". In theory, a GWAS is likely to show a signal, e.g. for the metabolic trap hypothesis. However, there is scale issue. To avoid false positives, GWAS use fierce statistical correction (instead of p<0.05 = 5 x 10^-2, GWAS use p<5 x 10^-8...
  14. Simon M

    COVID-19 Infection and Subsequent Psychiatric Morbidity, Sleep Problems & Fatigue: ... an English Primary Care Cohort, 2021, Chalder, Chew-Graham

    I haven't finished reading it yet, but I really like this study, which seems to me to be done well. The hypothesis was that Covid would cause psychiatric morbidity. But they came up with a design to give that hypothesis a good shakedown. from the "research in context" box The key point was...
  15. Simon M

    NLS Pharmaceutics Announces the Appointment of Eric Konofal, M.D., Ph.D. as Chief Scientific Officer (ME/CFS is mentioned)

    Robert Dantzer (who is an expert on sickness response/behaviour, a biologically-driven process) talked about orexin and its potential role in fatigue at the 2014 CMRC conference. My write up of his talk appeared on Health Rising (Cort decided to add a few bits of his own). Orexin – The key to...
  16. Simon M

    Lipopolysaccharide shock reveals immune function of indoleamine 2,3-dioxygenase 2 through regulation of IL-6/stat3 signalling, 2018, Yamamoto et al

    Abstract Indoleamine 2,3-dioxygenase 2 (Ido2) is a recently identified catalytic enzyme in the tryptophan-kynurenine pathway that is expressed primarily in monocytes and dendritic cells. To elucidate the biological role of Ido2 in immune function, we introduced lipopolysaccharide (LPS)...
  17. Simon M

    Central Sensitization Phenotypes in Post Acute Sequelae of SARS-CoV-2 Infection (PASC): Defining the Post COVID Syndrome, 2021, Bierle et al

    Interesting that they didn’t talk to any of the patients or collect data systematically. Instead, they reviewed their medical records and decided if, in their opinion, the patients symptoms supported the researchers’ opinions of the illness. I believe a similar approach was used in assessing...
  18. Simon M

    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    I am a bit puzzled by all this. On the one hand, we have a study that appears to have impressive results. The effect sizes are fairly large. They are also seen across a range of behavioural and biological factors. So, for mice injected with IgG from patients (compared with controls)...
  19. Simon M

    New Scientist - Long Covid: We have ignored post-viral syndromes for too long, 2021, Le Page et al

    Wow, free access to New scientist, thank you - that's a great tip.
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