• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. R

    Peter White (PACE) in the Guardian

    Would it be worth asking the Guardian for a right of reply?
  2. R

    Creepy posts by James Coyne to Jeanette Burmeister

    Yep, you at no point drew a comparison with Nazi propaganda. Oh wait, you did.
  3. R

    Creepy posts by James Coyne to Jeanette Burmeister

    Except that you only use an example of one outcome where the people needing help eventually lost everything. You've called him a dictator. That's a strong word. Dictators use violence to crush dissent. In fact dissent is simply not allowed. Last time I looked people can and do criticise Coyne...
  4. R

    Creepy posts by James Coyne to Jeanette Burmeister

    I think you're seeing a classic case of the tail thinking its wagging the dog here. Whatever he says, he's doing it because he's now on a mission to down the PACE crew and their spawn. I'd also suggest that even if his claim is genuine, would you rather he didn't try to prevent MAGENTA? Not the...
  5. R

    Creepy posts by James Coyne to Jeanette Burmeister

    Aaaannnddddd you lose as well. And I can also promise you that as soon as people from outside the group to which those involved in the discussion belong see mention of Hitler they role their eyes and walk away. As abhorrent as government policies have been towards the sick and disabled, making...
  6. R

    Creepy posts by James Coyne to Jeanette Burmeister

    Mate, he's an American psychologist whose only weapon is to call people names on the Internet. The comparison was absolutely ridiculous.
  7. R

    Creepy posts by James Coyne to Jeanette Burmeister

    Is his help being actively 'sought' now though? He's just trundling along on his chosen path and he's too far down the line to countenance walking away from challenging PACE. Plenty of previously disinterested academics and researchers are watching from afar to see what the outcome is and it has...
  8. R

    Creepy posts by James Coyne to Jeanette Burmeister

    Here's my concern with this. There are quite a lot of academics, particularly in the US, who have recently been drawn to our cause, or certainly to the cause of re-evaluating PACE. This is important, because the stereotype of us as deluded extremists in denial about the true nature of our...
  9. R

    Creepy posts by James Coyne to Jeanette Burmeister

    Ok, but again, what do you want us and the wider patient community to do?
  10. R

    Creepy posts by James Coyne to Jeanette Burmeister

    And by the way, I did not say that they are equally guilty. That's a straw man. In fact I offered no criticism of Jeannette B at all, because I've never interacted with her and only read about her work in passing. She's a lawyer like me, and gains my respect for that. And I also did not say...
  11. R

    Creepy posts by James Coyne to Jeanette Burmeister

    It's a fair point. Does that extend to pleas to take sides against individuals?
  12. R

    Creepy posts by James Coyne to Jeanette Burmeister

    Nielk, I agree that some of Coyne's behaviour has been appalling. Indefensible. So please don't think that I'm defending his character. I don't like the man and I think that some of his crusades have been misguided and petulant. I condone none of it. My point was that neither side is perfect and...
  13. R

    Creepy posts by James Coyne to Jeanette Burmeister

    If they contact me I'd happily pass on my suspicions.
  14. R

    Creepy posts by James Coyne to Jeanette Burmeister

    James Coyne is a quandary for ME patients. On the one hand he has helped to expose the scandal that is PACE and his continued advocacy has value. However, he does seem to be an egotist who on occasion behaves appallingly. I've received his DMs before, instructing me as to what I should and...
  15. R

    Thyroid issues - TSH

    Thanks @whodathunkit. I guess my fear is that it's the meds, because I can't stop it and can't stop the meds as life isn't liveable without them. I was in a dark room before them, unable to tolerate sound, light, touch, movement, in constant agony. I have two young children who I couldn't see...
  16. R

    Thyroid issues - TSH

    Hey, thanks so much for this!
  17. R

    Thyroid issues - TSH

    I've been having symptoms not related to my ME which seem to point to a thyroid problem. Particularly I've gained a lot of weight (2 stone) without eating too much (I was 11 stone a year ago at 38 and there was no change in diet or activity, but a significant and noticeable loss of appetite when...
  18. R

    Chronic fatigue syndrome/myalgic encephalo-myelitis – pathophysiology, diagnosis and treatment

    The irritant in this paper for me is the recommendation of CBT for the severely affected. Above they demand the highest possible evidence for any other theory or treatment then declare that CBT should be used in this group and that it is safe despite an appallingly weak evidence base. It's...
  19. R

    Here's an annoying review/CBT cheerleading exercise

    We demand high grade evidence for other hypotheses but are happy to recommend CBT for the most severely ill patients and declare it safe despite there being no appropriate research on that patient group whatsoever. Have they ever actually seen someone who is unable to tolerate sound and light...
  20. R

    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    What were the comments from Van Der Meer to Jonathon Edwards @Mark ?
  21. R

    Lidocaine infusions

    Thanks for the reply. Yeah, I've been told the risks. Much like you I'm at the point where I no longer care. It's great that it really helped you. How long did the benefits last? Did you have repeated infusions?
  22. R

    Lidocaine infusions

    ive been to the pain clinic today and have been offered this for my neuropathic and muscular pain. Has anyone has this done or is there any literature/studies I can read about this approach?
  23. R

    Queen Mary's appeal ICO decision on PACE data

    Will this be a court appointed solicitor?
  24. R

    Rehabilitative treatments for chronic fatigue syndrome: long term follow up from PACE trial

    I doubt it's going to be tolerated. A number of people including myself have made official complaints. I wouldn't have thought that NHS Choices can ignore this one.
  25. R

    UK Research Collaborative Conference in Newcastle: 13th - 14th October

    I'm absolutely certain that with a correct and early diagnosis and with the right advice (rather than the 'just get on with it and exercise as much as you can' bobbins I did get) I would have recovered. Indeed, I improved in the first 2/3 months as it was the summer holidays from university and...
  26. R

    "Time to swot up on chronic fatigue" - New Statesman

    Yes, but I don't think one person leaving several footbprints is going to influence that one way or the other.
  27. R

    "Time to swot up on chronic fatigue" - New Statesman

    Hits are only important to the bean counters. Comments add to or detract from an article's credibility.
  28. R

    Scientists post open letter to Lancet on Virology Blog - call for independent re-analysis of PACE

    Great letter. It'll be ignored, of course, but it could hopefully draw more like minds out of the woodwork. Only so many voices can be dismissed. Thank you to @Jonathan Edwards and the others involved.
  29. R

    Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome

    Amen brother. I think she thought she was being helpful because she was correcting Liddle's misreporting of the conclusions (as written by the authors) of the PACE follow up paper, which wasn't suggesting that ME is not a chronic illness after all, as he suggested, or piffling, as the overall...
  30. R

    Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome

    This is definitely the case with CFS/ME. If the attitudes and beliefs of those who mentor you, or those who mentor them etc are that it is a psychological illness and that patients are unreasonable and threatening then you I'll believe that to be the reality and that will pervade your own...