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  1. adambeyoncelowe

    Any experiences with chronic sinusitis?

    I get sinusitis a lot too. Some sprays are okay for long-term use, others aren't. Antihistamines and antidepressants, which many of us use for sleep, seem to dry you out and that may make them worse. Dehydration is under the side-effects usually. But I get intense allergies with my ME sometimes...
  2. adambeyoncelowe

    Forward ME Group minutes from meeting 7th February 2018

    I like Jane. She tells it as it is! Perhaps someone could reword the letter for Forward-ME? There are other publications to try, too.
  3. adambeyoncelowe

    Use your Amazon Smile to fundraise while shopping

    Oops. You're right. That's what I meant.
  4. adambeyoncelowe

    Use your Amazon Smile to fundraise while shopping

    I changed mine the moment I could! I've been wanting the ME charities to sign up to this for a while, since many of us rely on Prime for when we can't get out. That 0.05% soon adds up! Also, folks, you can get VAT refunded on items used for your ME (aids and adaptations only). Amazon makes it...
  5. adambeyoncelowe

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    Having spoken to others, it looks like that very palatable PEM study was used as the basis for joining the dots between functional movement disorders, CFS and non-epileptic attacks under a wider 'functional neurological disorders' category. They're certainly using very clever language, but my...
  6. adambeyoncelowe

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    It's a different study. The link I gave you shows an end date of September 2018. It seems very much at odds with the PEM study, but people go where the money is. I'm very concerned by this, because even his peers don't seem aware of what he's doing.
  7. adambeyoncelowe

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    Some bad news to temper the excitement: Dr Neil Harrison is a researcher on the MRC's new £662,000 'functional' study: 'A Unified Mechanism for Functional Neurological Symptoms'. That doesn't bode well. I hope this isn't a stitch up to replace the old model with a 'functional' one that still...
  8. adambeyoncelowe

    Esther Crawley

    Apparently her new study isn't too far from her last. Coxsackie B has been linked to appendicitis and ME! https://www.ncbi.nlm.nih.gov/m/pubmed/4964128/ Maybe she's coming at it through the back door?
  9. adambeyoncelowe

    How many hours of sleep a night do you need? - Now with Poll

    9-10 hours. I used to sleep closer to 12 hours. But when I use a Fitbit, it actually shows I'm only sleeping for 8-9 of these with frequent stirrings, and if I don't take drugs I don't get any REM or deep sleep (it's all light).
  10. adambeyoncelowe

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    It's a pity they didn't stop the bullying of children and their families by doctors and researchers they've supported for years...
  11. adambeyoncelowe

    Dr Myhill’s complaint to GMC about PACE authors.

    Very useful. It's a shame they don't do this. I find pacing with a HR monitor really useful.
  12. adambeyoncelowe

    (Oxford,UK) Recruiting: A study looking into energy status & MRS in CFS

    You're quite right, of course. I looked at the study with excitement till I read the 'functional' stuff. I was being unnecessarily flippant.
  13. adambeyoncelowe

    Update on Jarred Younger 'brain temperature' study

    Yes, it's surprising he's using Fukuda. It doesn't bode well for his 'three main subgroups' theory.
  14. adambeyoncelowe

    Esther Crawley

    First they'd have to rename and redefine the lightbulb. Then they'd have to mix it in with a wide range of newly rechristened 'hanging electric items' for their high-quality, totally open-minded study into lightbulb changing. While shouting 'STOP!' at the resultant assortment of lightbulbs...
  15. adambeyoncelowe

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    Well his bio talks about the 'common mental illness' he calls 'chronic fatigue'. I doubt he got top marks at school for accuracy or thoroughness... It's not a great indication of his intentions (or capabilities).
  16. adambeyoncelowe

    (Stanford, California, USA) Recruiting: Brain MRI and Immune Profiling CFS

    I was excluded because I take Imunovir, but apparently LDN was fine (I take both). I understood why though (Imunovir may raise NK cell function, according to Hyde). I'm not sure why LDN is allowed though.
  17. adambeyoncelowe

    (Stanford, California, USA) Recruiting: Brain MRI and Immune Profiling CFS

    Possibly because migraine causes its own brain changes? IIRC, ME has shown small, punctuate subcortical white matter hyperintensities on MRI. Migraines may cause small lesions too. I'm guessing they want a 'pure' sample where they can be sure the brain changes are from ME alone. This is good...
  18. adambeyoncelowe

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    Bristol must be so embarrassed by her already. Surely they can't have promoted her? :P I'm cautiously optimistic. But could/would they get involved with NICE? If they have significant clout and truly want to promote biomedical approaches, they can start by asking for a warning against GET in...
  19. adambeyoncelowe

    (Stanford, California, USA) Recruiting: Brain MRI and Immune Profiling CFS

    It's almost certainly because left-handed people use different parts of the brain. Looking at past brain studies, using more or different parts of the brain is used as evidence of slowed or altered brain function. Naturally, left-handed people may skew those results. Presumably, after they've...
  20. adambeyoncelowe

    Update on Jarred Younger 'brain temperature' study

    It sounds interesting. Perhaps he doesn't mention PEM because, like 'fatigue', 'malaise' is generally a meaningless term. Arguably, illnesses like MS also have their own kind of PEM, which isn't the same as ours (people with MS get worsened fatigue after exertion, but they don't get all the...
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