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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. JohnCB

    Mrs Sowester's Magic Beans

    I think it's a developmental phase everyone has to go through. How old did you saw you are?
  2. JohnCB

    Mrs Sowester's Magic Beans

    Me too. I can feel them killing me already. At first I thought I was just exhausted after having a bath, but I realise now the pills were having an effect on me before I even saw the advert.
  3. JohnCB

    Mrs Sowester's Magic Beans

    Who has been playing in their new graphics app?
  4. JohnCB

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    Thanks for keeping me updated on this. I have now set up an annual direct debit with gift aid.
  5. JohnCB

    "Pioneering treatment or quackery? How to decide" (2011)

    Can anyone confirm if this is the same Dorothy Bishop who published in Nature with Stephan Lewandowsky -Research integrity: Don't let transparency damage science "Stephan Lewandowsky and Dorothy Bishop explain how the research community should protect its members from harassment, while...
  6. JohnCB

    What gives you joy every day?

    My cat prefers to be outside a curry. She will happily lick clean microwave trays from creamier style ones. She enjoys korma and chicken tikka masala and there is another one but the name has gone AWOL from my head. Not so keen on hotter ones but she is quite happy with mildly spiced food. I...
  7. JohnCB

    What gives you joy every day?

    I regard a footstool as essential. Height is pretty critical and surface size is important for good support. I did have a "proper" footstool, but currently I am using an occasional table, the middle one from a stacking set of 3 is just the right height once it has a cushion on it. Actually...
  8. JohnCB

    Excellent article that explains why your local MECFS doctor probably doesn't publish in Journals

    I haven't followed the link to the full article. I read the paragraphs you quoted. My immediate reaction was "good". I got the immediate sense that this was a rant about PC gone mad. He is complaining about regulations put in place to protect patients after the harm done to them taking the same...
  9. JohnCB

    MEA website survey on Weight Change with ME/CFS (September 2017)

    I added a comment to the MEA site
  10. JohnCB

    Mental health and behavioural conditions account for nearly one-in-three known fit notes

    The point of my post is that I did have sick notes but not a diagnosis of ME/CFS. Many people wait a long time for a diagnosis and they may well, like me, have had to progress into the ESA system. It means that many people who get a diagnosis of ME/CFS will never show up in records of sick or...
  11. JohnCB

    Mental health and behavioural conditions account for nearly one-in-three known fit notes

    By the time I had a formal diagnosis, I had long stopped getting sick notes as they used to be known. By that stage I had been interviewed for Incapacity Benefit and the GP didn't have to keep filling them out. My early sick notes described by condition as "general debility". I had TATT written...
  12. JohnCB

    Fleas- How do you pet owners deal with this?

    It may, but I think it would depend on how many joins are in the flooring. I don't think traditional floorboards would make a great difference. If the floor is well sealed and continuous then it may well help. However the eggs are very small (about half a millimetre) and very loose. The are...
  13. JohnCB

    Fleas- How do you pet owners deal with this?

    I think once you suffer an infestation, you need to throw everything at it and then remain vigilant. The techniques are treat the cat, spray the floors, vacuum and vacuum, cat combing. Once you see fleas around you are going to be having to deal with them for some while. For ten years I did not...
  14. JohnCB

    Lancet - editorial - 'a proper place for retraction'.

    Oi, Mr/Ms Lancet. Of course the conclusions are at issue. The conclusions are at issue because they were justified by poor interpretations of incomplete results generated by poor methodology of a poorly designed study with moving goalposts that looked to all intents and purposes to have...
  15. JohnCB

    Crawley: Natural course of CFS/ME in adolescents

    She will cite it in her future papers and those glancing at the references won't know any better. Eventually these "results" will become part of her folklore.
  16. JohnCB

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    I was interested in the sentence you quoted from the study as it reminded me of the post on Andrew Gelman's statistics blog (many will remember that he commented on the deficiencies of Pace a while back) which I saw earlier today although it is dated yesterday...
  17. JohnCB

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    I'm not a fan of the Daily Mail and probably never will be, but we do need to judge this article on the basis of its content. I'm delighted to see the article and I am pleased it's is in a high circulation paper. I am a little intrigued that a new (to me) concept has arisen in this thread -...
  18. JohnCB

    Economic evaluation of multidisciplinary rehabilitation treatment versus CBT for patients with CFS

    Regarding themselves as being a couple, in a relationship, but maintaining separate households. I think it is more common in middle aged couples who are already economically independent and choosing to keep that while being committed to each other in other respects.
  19. JohnCB

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    If you ain't dead, it ain't serious. Or the long version, it's CFS and that isn't serious, it's just tiredness, so any pathology found cannot be serious either. Why cite anything when you can just gloss over and regard it as a statement of the bleedin' obvious?
  20. JohnCB

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    I've just added mine to take it up to a round 9,000. The childlike pleasure in making it tick up from 8,999 has made my day.
  21. JohnCB

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    The Eskimos have a hundred words for snow, the Greeks have a hundred words for love and the English have a hundred words for rain. Doctors have a single word for a hundred different ways of feeling ill and awful - fatigue. I used to know fatigue as the feeling I had when I was active and...
  22. JohnCB

    Cleanliness in between showering

    Perhaps you are thinkinf of a loofah? They used to be common in English bathrooms when I was little. https://en.wikipedia.org/wiki/Luffa
  23. JohnCB

    Scientists trade insults over ME (JHP special issue)

    But if it's a choice between "yuppie flu" and "chronic fatigue" and I think I actually prefer yuppie flu!
  24. JohnCB

    Losartan -- TGF-b Inhibitor for ME // Any success?

    I have been on Losartan Potassium 50mg/Hydrochlorothiazide 12.5mg 1/day combination pill for a long time. This replaced the candesartan that I had been taking for years prior to that. I have never felt aware of a specific effect on my ME. On the whole, I am taking a bunch of pills for various...
  25. JohnCB

    Scientists trade insults over ME (JHP special issue)

    I think this is the best piece The Times has every written about our problem. Previously they have followed an establishment line. The Sunday Times gave Wessely a platform and The Times had the former head of the MRC (Colin Blakemore? I am having trouble recalling the name) was given an opinion...
  26. JohnCB

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    This looks very much like playing the man, not the ball. He has little of value to say so he goes for a contributor with innuendo. And another ad hominem remark. And more innuendo. Editted to sort out my use of QUOTE.
  27. JohnCB

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    This paragraph, quoted on its own, as you have done, struck me as being exactly the style of an ennobled psychiatrist. It reads as if it could have been dictated.
  28. JohnCB

    Hidden herpes virus may play key role in multiple sclerosis, other brain disorders

    So our favourite psychiatrists are saying that ME may be triggered by a virus but insist that it cannot be perpetuated by a virus but must be perpetuated by psychiatric means. Meanwhile proper biomedical researchers are saying that a particular virus HHV6 does not trigger MS, a comparable...
  29. JohnCB

    The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS

    Thanks for posting as I had not seen this. I had to give up on that other thread some dozens of pages ago. I do wish I could keep up. It really is astonishing that GDS should give that as a reason when he is supposed to be such a great scientist. Instead it does seem very partisan. I think...
  30. JohnCB

    Trial by Error continued is PACE a case of research misconduct

    When you posted this, you quoted a post I made. However you seem to be replying to a different post as what you have written does not seem pertinent to what you quoted. I do have cognitive difficulties and it is difficult to follow an argument when there is this kind of disconnect. Such things...