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  1. Jonathan Edwards

    Lightning Process study in Norway - Given Ethics Approval February 2022

    I never got a reply from Mrs Floptop and PG Tips. Maybe I forgot to put on the address @Planet.Zog.com
  2. Jonathan Edwards

    Amino acids and energy production

    It seems that proline is a weak glutamate receptor agonist but I don't see how this would change to produce an acquired intolerance.
  3. Jonathan Edwards

    Amino acids and energy production

    I cannot think of any possible mechanism for becoming sensitive to proline. The immune system would not respond to it. I don't think any receptors are going to respond to it abnormally. It is an interesting concept but I find it hard to believe it could be validated.
  4. Jonathan Edwards

    Long Covid in the media and social media 2022

    The really amazing thing is that they know what will be definitive in 7 months time when the book is released.
  5. Jonathan Edwards

    UK: Specialist Rehabilitation Medicine Services for ME/CFS and Long Covid

    I am getting a bit confused between your own plans and discussion of policy. The hope is that practices will change with the new NICE guideline. The guideline suggests care should occur in the sort of environment we call a fatigue clinic rather than a rehab unit. Although at the round table it...
  6. Jonathan Edwards

    UK: Specialist Rehabilitation Medicine Services for ME/CFS and Long Covid

    I am not sure what referral to a rehab centre is expected to achieve? If there is an ME specialist then surely they should manage care? They should have the skill set? The skill set is mostly understanding how little we know about ME and having practical experience of patients' accounts of how...
  7. Jonathan Edwards

    FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What..., 2022, Gullon-Scott and Long

    Weak muscles do not make a very big difference to joint stability. Muscle tone doesn't really exist. 'Tone' as assessed in a neurological examination is a specific reflex response to passive motion. Yes, people who are very weak may fall but by and large the people who I have looked after with...
  8. Jonathan Edwards

    FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What..., 2022, Gullon-Scott and Long

    Nobody is doubting the need to listen. What is at issue is how that is then interpreted in terms of disease categories. Clinging to disease categories that do not apply can reasonably be seen by medical personnel as unhelpful. I am not justifying safeguarding orders but I think it is very...
  9. Jonathan Edwards

    FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What..., 2022, Gullon-Scott and Long

    We are clearly going to disagree, @Tilly. I base what I say on having worked alongside a hyper mobility clinic most of my working life, having read published population studies showing no clear relation between ME and hypermobility and discussion with paediatric colleagues involved in these...
  10. Jonathan Edwards

    Preprint: Prevalence, determinants, and impact on general health and working capacity of PASC 6-12 m after infection..., 2022, Peter, Kern et al

    I think what they mean by rapid physical exhaustion is the sort of thing you get with heart failure or respiratory failure (or my mother aged 100) - becoming unable to continue, with shortness of breath, after a minute or less of walking or climbing stairs. After ten minutes rest the problem has...
  11. Jonathan Edwards

    Traumatic brain injury - similarities with and differences to ME/CFS, including PEM

    The structural level of injury can vary, yes. In Alzheimer's the injury is microscopic (until the brain actually shrinks). In boxers the changes are at a fine level. But there is nothing about ME that suggests injury to me. I am trained in clinical neurology. I have looked after many people...
  12. Jonathan Edwards

    Traumatic brain injury - similarities with and differences to ME/CFS, including PEM

    I think there is a confusion here. injury means structural damage - more or less. In ME we see no structural damage so as far as we know it is not an injury of any sort. Similarity of symptoms is irrelevant because very similar symptoms will occur either from injury to something or from...
  13. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Not according to Mr GRADE - Gordon Guyatt. His handbook for GRADE indicates that different people can come to different conclusions and it is not objective. On the other hand he has also said in the BMJ that there is a right way to do GRADE and it would disagree with NICE. I fear this is not a...
  14. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I think this is a useful discussion because it relates to how Cochrane might defend itself in the face of the sort of criticism being made. I think two different things are getting confused. I think most people would regard the central purpose of Cochrane as providing reviews that accurately...
  15. Jonathan Edwards

    Paul Cheney seminar on oxygen toxicity in ME/CFS

    Welcome to posting here @mikecunn11. An awful lot of research for ME is poor quality and the general view of this particular work is that the methods used are not reliable enough for it to be meaningful in terms of clinical care. None of it should be taken as reliable guidance. Work on the...
  16. Jonathan Edwards

    Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation

    An interesting point is that nowhere in this implementation document is there any mention of which specialty clinics should come under (other than paediatrics).
  17. Jonathan Edwards

    Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation

    I remain concerned about the literature put out by Doctors for ME. The Educational material e.g. 'What is ME' is way off balance. It is likely either to mislead both patients and doctors or to give doctors a good reason for being sceptical about the whole 'physical illness' story.
  18. Jonathan Edwards

    Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation

    A couple of initial thoughts. Firstly it talks of LP no longer being recommended. I hope it never was. It describes Doctors with ME as the international professional association for post-viral disease .. Whether this is appropriate I am not sure.
  19. Jonathan Edwards

    Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation

    I hope people can access the document. I would be interested to know what they think.
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