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  1. Jonathan Edwards

    NICE Guideline stakeholders workshop Jan 2018

    Good work. Hopefully we can get a ticket for the meeting although it sounds as if it may be heavily subscribed. If there is no room it looks as if patient interests are still going to be well represented, but it would be good to be directly involved.
  2. Jonathan Edwards

    Metabolic shift induced by systemic activation of T cells in PD-1-deficient mice perturbs brain monoamines & emotional behavior

    I doubt the result has anything particular to do with T cells. It shows that a large number of unregulated cells - most typically seen in cancer - eat up nutrients. People have observed cancer patients becoming cachectic for centuries. Many of these engineered mice have huge numbers of the...
  3. Jonathan Edwards

    Tuller / Trial By Error: The Crawley Chronicles, Resumed

    David knows the meaning of due diligence. Impressive.
  4. Jonathan Edwards

    UK Biobank doing an Ask Me Anything thread this Thursday, pre-event thread.

    We had a Biobank Steering Committee meeting today. A number of the above questions came up and others have been discussed in the past. If anyone misses the chance to get questions answered live I can respond, if necessary having checked details with the team. The appeal fund is up to £11,000...
  5. Jonathan Edwards

    Lecture by Emily Beardall of Action for ME

    This is what worries me here. The implication is that once you have listened to this video you will know all about ME/CFS and be able to happily continue in the delusion that you can safely and effectively look after people with the condition. The speaker might be qualified as a patient to...
  6. Jonathan Edwards

    Lecture by Emily Beardall of Action for ME

    I am afraid I agree with Esther12 that you are arguing a circle here Valentijn. If the data are all based on bad methodology then the most we can conclude from LTFU is that the outcome is neutral. patient surveys are anecdotal too - or at least wide open to reporting bias. I don't think we are...
  7. Jonathan Edwards

    Which autoantibodies would you test for?

    That was not really what I was meaning. What we need to know is the immediate physiological cause of OI. Is it low blood perfusion of the brain, as in a faint, or is it signalling from a baroreceptor that is firing in error? Or has it nothing directly to do with the autonomic nervous system? We...
  8. Jonathan Edwards

    Which autoantibodies would you test for?

    I am not sure in what sense you think things are disturbing. I agree that it is a major problem that we are not further ahead with understanding ME/CFS. We may suspect autoimmunity in ME/CFS but so far there is no clear evidence for it being relevant. It may well not be. We cannot criticise...
  9. Jonathan Edwards

    Which autoantibodies would you test for?

    I think your family doctor may be right, Josie. I interact regularly with ME/CFS researchers from a dozen different countries. I think they would all agree that testing is a waste of time unless you have something specific clinically to link it with. In general in ME/CFS we don't. There are no...
  10. Jonathan Edwards

    Clare Gerada: influence on UK medical practice and ME/CFS management

    Yes, I blame Milburn. But the GPs had the option of refusing. They could have resigned on the grounds that they could not fulfil their responsibilities - as I did in 2010.
  11. Jonathan Edwards

    Article, UK: "Is it time for our universities to fight back against profiteering publishers?"

    I think the universities have brought this on themselves by 'measuring' research in terms of publications. There is a very simple solution. We already all have college websites provided by the college IT department. Anything we want to publish can be uploaded on to the college site. The college...
  12. Jonathan Edwards

    Clare Gerada: influence on UK medical practice and ME/CFS management

    Indeed, and on a more general note the policy of treating complex disease when you are not qualified to do so, as GPs like to do, is simply unethical. It is people like Gerarda who are responsible for GPs continuing to fail to treat people for conditions that require specialist expertise to look...
  13. Jonathan Edwards

    The Elephant on the Couch: Side-Effects of Psychotherapy (Berk & Parker, 2009)

    The real problem looks to me to be in the first sentence - the assumption that there is something called a 'cognitive schema' that 'causes...' or that there are 'cognitive assumptions'. It is time psychologists admitted that nobody knows what these terms mean. But I guess the full article is...
  14. Jonathan Edwards

    Which autoantibodies would you test for?

    Generally speaking there is no point in testing for autoantibodies unless it is reasonably clear what sort of tissue malfunction they might explain. So the physician has to go from symptoms to working out what is wrong with a particular organ system before there being any point in testing for...
  15. Jonathan Edwards

    Investigation of mast cell toll-like receptor 3 in CFS/ME & Systemic Mastocytosis using novel application of autoMACS..., 2017, Balinas et al

    The abstract is confusing. It seems that they found evidence that PWME do not have systemic mastocytosis - which is not very surprising. There is no comment about the comparison between ME and controls.
  16. Jonathan Edwards

    Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

    He seems to be suggesting that the Lightning Process is a way of delivering CBT. I wonder if Dr Chalder would agree. David T has had some more thoughts on the trial - he summarised the sequence of events in SMILE very well when we last met for dinner. I think we will hear more.
  17. Jonathan Edwards

    Petition: Approve the use of IV saline for treatment in PoTS and M.E for NHS Scotland patients

    Desmopressin will certainly reduce the rate of urine production but it is dangerous in the presence of hyponatremia, as it makes it worse. I agree that salt and water balance is complicated but I think that bit is fairly straightforward.
  18. Jonathan Edwards

    Open (MA, USA) “Brain Scan Study [PET-MR] of ME/CFS, 2023, VanElzakker

    As I indicated, PET scans can measure almost anything you like. 'A PET scan' is a bit like 'a blood test' or 'a cerebrospinal fluid test'. Blood tests for calcium may be very useful but blood tests for platinum levels may be a waste of time. So if you have had a PET scan the question is what it...
  19. Jonathan Edwards

    Petition: Approve the use of IV saline for treatment in PoTS and M.E for NHS Scotland patients

    In general terms hyponatremia has nothing to do with hypovolemia. It is very unusual for them to occur together I think. Low sodium usually indicates inappropriate antidiuretic hormone secretion. Desmopressin would be strictly contraindicated there because it would further lower sodium...
  20. Jonathan Edwards

    Petition: Approve the use of IV saline for treatment in PoTS and M.E for NHS Scotland patients

    The effect of exercise on muscle strength is much more complicated. The equivalence of IV and oral saline is much simpler. When you drink saline the water and sodium go into the circulation, just like IV. When IV saline infusions are given they tend to be a litre over about half an hour minimum...
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