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  1. Jonathan Edwards

    2022 Guardian: "How to move: exercising with chronic fatigue syndrome" and related articles

    This lady works for a private rheumatology clinic in Oz called BJC. Not hard to see why she has an article in Guardian Aus looking at her blurb: Sarah is the manager of our Allied Health team at BJC, and also heads up our Marketing team. She has also been a director of BJC Health since 2018...
  2. Jonathan Edwards

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

    I think this article raises some important issues. The vagueness of FII is a concern that I know Nigel Speight has strong views on. My impression from listening to the president of the RCPCH is that the establishment view is very blinkered and simplistic. On the other hand I think there is a...
  3. Jonathan Edwards

    Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study, 1999, Scott et al

    Ah, yes, I saw that one. Quite a lot of doubtful citations there.
  4. Jonathan Edwards

    USA: InCellDx Dr Patterson - New lab service offering cytokine tests to Covid longhaulers

    I am thinking of inventing an organisation called nonaQ. This is for people who didn't think anything shifty was going on but discovered that there was - sort of stsiroeht ycaripsnoc.
  5. Jonathan Edwards

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

    But surely nobody actually wants to go into a rehab unit unless there is no alternative? GPs referring to specialists for outpatient care is the ideal situation. The problem is just that there isn't much to offer. I wouldn't compare to head injury. Most people with head injuries in rehab units...
  6. Jonathan Edwards

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

    I am in two minds about this. I agree with what you are saying. On the other hand my experience of 'care plans' is that they are used to dump the responsibility on the patient. There was a care plan for my wife when she was ill which just meant that I had to spend hours trying to contact...
  7. Jonathan Edwards

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

    The problem is that professionals working in rehab units have a belief that exercise is good for everything. If following the ME/CFS guidelines means anything useful it is being pragmatic and advising people on the basis of experience gathered from patients without any beliefs about exercise. As...
  8. Jonathan Edwards

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

    It seems pretty bizarre that a service for an illness should say it cannot deal with severe cases! It is a bit like a surgical service saying they are happy to see patients but they don't do operations. Maybe the proposals on implementation from NICE will make things a bit clearer, maybe not.
  9. Jonathan Edwards

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

    After quoting NICE to OT who was bewildered about a ‘care plan’ the manager takes me on and writes letter (no care plan) to my GP. Referred to The Brain Charity but looking like they will offer counselling only. Told come back only if you want to accept the three seminars. I never expected...
  10. Jonathan Edwards

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

    There is a geezer called Giza who thinks there is but the literature is mostly limited to reviews by him or sports journals. It sounds like pseudo stuff to me. What Nicola C-B say is interesting. I agree that viral reactivation is speculative. On the other hand it may be at least that in PEM...
  11. Jonathan Edwards

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I think we should wait and see what comes on Monday. It may be a lemon.
  12. Jonathan Edwards

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

    I agree that it is highly plausible that 'post-concussion syndrome' is ME precipitated by relatively limited head injury. Exertion intolerance could be used to apply to respiratory or cardiac failure but it has acquired a 'term of art' status such that it makes sense to restrict it to the sort...
  13. Jonathan Edwards

    UK Dr Anna Chellamuthu, GP and Lightning Process practitioner, and her article in a GP journal

    Interesting. What a lot of unhappy bunnies! I was also interested to see that Gerada is not flavour of the month with many colleagues. Things worked quite well in the 1980s when we could send out nurses and do our own domiciliary visits from hospital units, as well as being able to cross-refer...
  14. Jonathan Edwards

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

    I am not clear what 'services' (i.e treatments) you are referring to. Dispensing drugs does not require a rehab unit. Moreover, there aren't any drugs specifically for ME. Sleep medicine units may provide a diagnosis service but I don't know what treatment they can offer. There is no agreement...
  15. Jonathan Edwards

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

    I am a bit unclear as to what is being raised here. Rehabilitation units exist, mostly for strokes and head injuries but the same units also see people with ME and give them exercises. The Royal College of Physicians (actually Dr Turner-Stokes) has complained that the guideline does not...
  16. Jonathan Edwards

    [FND]: Extending the diagnosis to other disorders, and proposing an alternate disease term—Attentionally-modifiable disorder, 2022, Mark

    My tinnitus is attention dependent My carpal tunnel symptoms are attention dependent My postural kyphosis is attention dependent My sciatica is attention dependent My melancholy is attention dependent (when its there) My scalp itching is attention dependent My eye floaters are attention...
  17. Jonathan Edwards

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I received this from NICE: Dear Jonathan You will be aware that following the roundtable workshop held on October 18th 2021, which you attended on behalf of Science for ME, Gill Leng, in summing up, stated that NICE would work with system partners and stakeholders to explore: Issues around...
  18. 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 went to Curry's yesterday to see if me daughter's inkjet printer (under guarantee) was mended and ready for pick-up. Curry's apologised and said that Canon had not even come to collect it. So they offered me a free replacement. Maybe we should get a free replacement on this review?
  19. Jonathan Edwards

    UK Dr Anna Chellamuthu, GP and Lightning Process practitioner, and her article in a GP journal

    It is interesting to read that column of comments. I don't think RCGP can hope to compete with NICE. The power structure would not allow it. But I think things are changing. I think GPs are beginning to realise that they are in an anachronistic and moribund branch of the profession. Much of it...
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