Search results

  1. L

    ME charities' response to the Reuters article

    I may be being naively optimistic but I saw this week as a final mic drop by PACE defenders. Picking up their ball and running home because they're 2-1 down. The strategies of accusing critics of being militants might work when it's patients but if you have to accuse a scientific journal as...
  2. L

    The Guardian - Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be (2019) Frances Ryan

    ...and, to be fair to them, sometimes ME patients and their advocates do use imprecise language that could imply that mental illness is not a 'real' illness.
  3. L

    ME Association: ME/CFS researcher Cara Tomas explains the results from a new study on energy production and mitochondria

    Replication of earlier groups’ results is critical here: there is overlap between results but it is not 1:1. It is especially needed for metabolimics findings which so far have tested a large number of metabolites in a small number of patients, a recipe for inconsistency. The idea that energy...
  4. L

    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    100% this. Also, if we give the impression of stigmatising mental illness it opens us to the charge of opposing BPS-based treatments because we ourselves don't want that stigma. There should be no stigma or shame in mental illness; my objection to BPS approaches is solely due to lack of...
  5. L

    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    I tend to agree with this. I'm actually not a big fan of the ME Association's "It's real. It's physical. It's ME" slogan for those very reasons: We should not imply that a mental illness is in some way 'not real' (I know this is not the case but it can be misread as so by the juxtaposition of...
  6. L

    Rod Liddle in the Times: "Always fatigued — yet they never tire of claiming their malady really is a virus"

    I suppose at least if he's metaphorically attacking the ME/CFS community he's not non-metaphorically attacking his pregnant girlfriend*. Re an IPSO complaint: Liddle thrives on being a martyr. Like a lot of right-wing nationalists, he pushes a message simultaneously of superiority and...
  7. L

    ME Association: ME/CFS researcher Cara Tomas explains the results from a new study on energy production and mitochondria

    I'm impressed with Cara Tomas and the team working with Professor Newton: they seem to be taking a steady, methodological approach to assessing whether energy production is impaired for ME/CFS patients and, if so, trying to locate where in the chain things are breaking down. The findings...
  8. L

    NIH Request For Information: Soliciting Input on How Best to Advance ME/CFS research

    This, this and this again. I'm not wedded to a particular set of diagnostic criteria but the presence of PEM is an absolute must. Only thing I'd add is try and make it a requirement for funding that sub-group analyses are specified openly before data collection.
  9. L

    Hypothesis piece by Amy Proal, a microbiologist with ME/CFS

    Personally I try and avoid all treatments and supplements as I've not seen good evidence for any of them and I'm worried about making things worse. One of my main concerns with a lot of ME/CFS research is that some of the differences found between patients and HCs is down to the former often...
  10. L

    Blog: The real reason I’ve stopped writing for The Canary? Watch this video. by Steve Topple

    If she's been diagnosed with epilepsy (per JE's comment above) then the first bit pre-seizure could be an initial partial seizure (an 'aura'). My OH has temporal lobe epilepsy and virtually all the time she only gets the partial seizure / aura which doesn't develop into a full tonic-clonic...
  11. L

    Cimetidine: An immune modulator that actually seems to be working for me

    Thanks @Woolie, this is fascinating. Long may it continue. I'd also be interested in anybody else's experiences with Cimetidine or Ranitidine over the long-term as one of my half-siblings had a strange illness that seemed to make him immediately allergic to everything, that was resolved (after...
  12. L

    Repurposing large health insurance claims data to estimate genetic and environmental contributions in 560 phenotypes (2019) Lakhani et al.

    I did wonder if that graph - which if I'm reading it correctly suggests that published studies shower a stronger heretibility component to this insurance-based study - could be explained by the lower specificity/accuracy of insurance codings and also, perhaps, publication bias.
  13. L

    Repurposing large health insurance claims data to estimate genetic and environmental contributions in 560 phenotypes (2019) Lakhani et al.

    So, to try and answer my own question, I've had a play with the data and I think what it shows is this (my knowledge of heritability statistics is pretty much nil, so please treat with caution and I'd welcome any comments/corrections): Chronic fatigue syndrome Heritability, h2 = 0.575, p=0.007...
  14. L

    Advice RE claiming UK benefits, paying NI contributions

    Definitely. If you earn more than £1,000 in a year then you must fill out a self-assessment and can be fined for not doing so (even if you had no tax to pay). At that point you can choose to pay voluntary Class 2 NICs at £2.95/week - or if you earn more than £6,200 this would be mandatory anyway.
  15. L

    Repurposing large health insurance claims data to estimate genetic and environmental contributions in 560 phenotypes (2019) Lakhani et al.

    Thanks for posting, Chris. I'd be interested to know how ME/CFS compares with depression on the 'Environment' point - can anybody here who's able to query the data have a look? I would *guess* that MDD would have quite a strong component that varies with zip code - e.g. see the discussion...
  16. L

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Some interesting posts above regarding the definitions we use when we're talking mental/physical/psychological. FWIW (and if this is too far off-topic I apologise to the mods in advance :)), I think there is a million miles between the proposition that ME/CFS is primarily caused by an...
  17. L

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Agreed. To be fair to the authors, the paper itself does make clear that this only *might* be a model for ME/CFS - it is the follow-up reporting which overhypes this. Which is a problem that affects pretty much all scientific research. I just can't help feel that this paper is getting more...
  18. L

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    All what follows is IMHO, obviously: So my view would be no - personally I would just chalk this up as another scientific paper with mildly interesting findings (and to my mind they *are* interesting, even with some of the already-discussed flaws) and a massively overblown press release. Not...
Back
Top Bottom