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  1. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    My impression is that he should not be on a learning curve. He is right in the middle of Cochrane and should be very aware of the problems with the GET review. If he is not then Cochrane's claim to quality control and internal audit is a joke. Not his fault, maybe, but shouldn't he be aware...
  2. Jonathan Edwards

    The Times: Chronic fatigue syndrome: ME families accused of child abuse

    I agree with Philipp and others that this is potentially a complex issue with two sides. I have taken the view that I do not necessarily know enough to judge the balance. However, the quote: “Very occasionally, some parents have been reluctant to, even with support, supervise and encourage...
  3. Jonathan Edwards

    Clinical History Segment Extraction from Chronic Fatigue Syndrome Assessments to Model Disease Trajectories , 2020, Chalder et al

    Fair fa' your honest, sonsie face, Great chieftain o the GIGO-race! Aboon them a' ye tak your place, Painch, tripe, or thairm: Weel are ye wordy o' a grace As lang's my arm.
  4. Jonathan Edwards

    August 21, 2020 IACFS/ME Virtual Conference

    Merged thread Just to flag up that this meeting is now being run online. Anyone interested in registering, possibly with concessional rates should look at: https://www.iacfsme.org
  5. Jonathan Edwards

    low pressure in brain

    Iamafraid I don't know the answer that @lunarainbows
  6. Jonathan Edwards

    low pressure in brain

    That now makes sense, although I was taught that inversion of the optic disc - so called cupping - was chiefly a sign of glaucoma. This may be something a bit different.
  7. Jonathan Edwards

    The biology of coronavirus COVID-19 - including research and treatments

    I agree I think this is just Arne Akbar bidding for money for his research programme into immune system ageing. A sideshow.
  8. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    I believe there is a general assumption that both types twin tend to share environmental factors to an equal extent. So environmental discordance will have an effect but if concordance is more common for monozygotic that must be genetic. I have to say that I think this is debatable. Monozygotic...
  9. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    You may be right.I think the problem may be the statistics. The number of gene variants is very high, so probabilities of links being real have to be adjusted down. The number of gene variant combinations is far higher and may make the problem intractable. That said, if you know that certain...
  10. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    Yes, if monozygotic twins both have an illness more often than dizygotic the usual interpretation is that this is good evidence for a genetic component. So a screening for risk genes should find some. But it seems that you don't necessarily find risk genes that confer the expected level of risk...
  11. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    My understanding is that the chances of a false negative for genuinely significant predispositions in the normally understood sense is remote. If anything, my experience of genetic predispositions is that they show up with smaller numbers. But there is something lurking the background that is...
  12. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    It cannot show nothing. Even if there are no gene associations at all that would be a crucial piece of information. It would also be a very important thing to explain, since there is evidence for a genetic component from epidemiological studies. The great thing about a study like this is that it...
  13. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    Sticking to just UK subjects is to my mind crucial to the science for purely technical reasons. Even if people have similar ancestors a spurious result could very easily come out of the trial just because of a slightly different racial mix. If it really proves hard to recruit 20,000 from the UK...
  14. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    I agree that the Guardian does not seem to have made any stupid mistakes this time, but the contrast with the photo in the Times is telling. The Times has real people and you can see they are real people. The Guardian presents a fantasy through a veil of its own preoccupations. The piece is so...
  15. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    Very well done all those involved. It has been easy to think that nothing changes, but it has. Things have changed out of all recognition since the days when I first learnt about the ME world in 2014. An awful lot of people we know have contributed to getting this realised by persevering in the...
  16. Jonathan Edwards

    e-coli infection and leaky gut

    Do you know your CRP goes up if you reduce steroids (poor to the current episode that is)? There is a need for an alternative anti-inflammatory to steroid for PMR/GCA. I tried rituximab and it probably works but the patient I treated developed a lung complication. Another obvious option would be...
  17. Jonathan Edwards

    DNA methylation and BDNF expression account for symptoms and widespread hyperalgesia in patients with CFS and Fibromyalgia, 2020, Polli et al

    The actual BDNF levels in serum and plasma must be the same because serum is just plasma that has been cleared of fibrinogen by clotting. Diurnal and sex variation will apply to both. What may be different is reliability of the assays though. The only caveat to that is if BDNF can be released...
  18. Jonathan Edwards

    e-coli infection and leaky gut

    Yes, particularly in sorting out unresolved problems like this.
  19. Jonathan Edwards

    e-coli infection and leaky gut

    The first thing I would say is that someone who has been on 10mg prednisolone daily for ten years at age 70 is at significant risk of getting gram negative (E. coli) septicaemia without any other particular explanation. Assuming that the relapses were associated with fever and rise in CRP level...
  20. Jonathan Edwards

    e-coli infection and leaky gut

    Are you diabetic , @Graham ?
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