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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. Holmsey

    Lady Mar writes to Prof Wessely

    Hi Adreno, IMO, objective evidence would be where a result can be reliably predicted from a fixed set of conditions. You take a sample of blood, you treat it with solution x, you examine it with equiptment y, and the result will be a, b, or c depending on whether it's modulated by d, e or f. I...
  2. Holmsey

    Lady Mar writes to Prof Wessely

    Actually Bob, what I said was 'stories are subjective', when you establish a rational argument that proves this statement is false without writing a new dictionary I'll eat my crash helmet, until then read my posts. Beyond that, please supply the post where I do the things you're accusing me...
  3. Holmsey

    Lady Mar writes to Prof Wessely

    natasa778 said: ↑ Oh come on people, we know by now that personal stories do not count as evidence in IVI's world. Given the number of posts now quoting my reply I feel for my own sanity that I have to re-post it as above, in perspective. My feelings when I read Natasa's reply to IVI were...
  4. Holmsey

    Lady Mar writes to Prof Wessely

    I have never doubted, psychologically abused or offered treatments that are useless or dangerous. I object to being answered in such a was as to imply I have, I object to being answered in such terms. You are correct one of the functions of this form is free and open expression, and I have used...
  5. Holmsey

    Lady Mar writes to Prof Wessely

    Something of cross purposes Valentijn, when I said we let them, I meant by not co-operating and by so doing blowing the whole argument out of the water. I'm not suggesting this could ever happen but use it to make my point. Imagine being able to broker this scenario, you go along to a cabinet...
  6. Holmsey

    Lady Mar writes to Prof Wessely

    Ok, all fair enough so attack away, but I don't see where it helps us.
  7. Holmsey

    Lady Mar writes to Prof Wessely

    Forget the figures, forget whethere it's SMC or CBT, if someone imporves that's a plus, if they're cured I'll raise a glass to them, but if not then that's the time to make a fuss and ask why? Right now the Psyc lobby get to hide their figures behind an argument that we're malingering, that we...
  8. Holmsey

    Lady Mar writes to Prof Wessely

    Can't you get them done privately and present them back to your GP?
  9. Holmsey

    Lady Mar writes to Prof Wessely

    :) take care.
  10. Holmsey

    Lady Mar writes to Prof Wessely

    Fair enough, I'm interested in getting well, I can't see how to undo the advice or the research without new research. It strikes me that SW's biggest influence over us now is contributing to a public perception of all sufferers as intolerant, likely barmy, unreasonably angry and occasionally...
  11. Holmsey

    Lady Mar writes to Prof Wessely

    Pain management, being aware of symptom fluctuation so as to spot low points and take appropriate action such as reducing activity levels. You'll also get a check for suicidal tendencies, so from that viewpoint it's a proactive health check. It's talking therapy, if GET is included it's...
  12. Holmsey

    Lady Mar writes to Prof Wessely

    I don't doubt it, I don't think anyone is disputing that SW beleives in the Psyc model of our illness, that's a given, it's whether he's acting from beleif which will eventually be proved wrong or expressing a view that he knows to be false which would appear to determine his character. We...
  13. Holmsey

    Lady Mar writes to Prof Wessely

    You certainly got advice I never got. I'm guessing that at subsequent sessions you'd be given the opportunity to feed back, it was certainly a large part of my participation, it would be good to hear what your therapist said regarding the ice advice, even when healthy it would have hurt me to...
  14. Holmsey

    Lady Mar writes to Prof Wessely

    Please expand, I'm not sure I understand how that can be the whole point, an opposing viewpoint is created, surely the opposing viewpoint must in your mind have a purpose beyond just existing as an opposing view point, if it does not exist simply because an opposing beleif is held and expressed?
  15. Holmsey

    Lady Mar writes to Prof Wessely

    To confuse and bury the truth with disagreement, what is the truth, who is burying it, surely a Psyc could claim the same about all off the biological research, that it's just a smoke sceen no doubt quoting XMRV in the first paragraph. Both sides can make arguments along these lines, it's not...
  16. Holmsey

    Lady Mar writes to Prof Wessely

    Don't worry, save it for a day when you're feeling better, and I accept that we're in different places with it. Yes, I'm sure I would find that difficult. I think it was in reply to one of Bob's posts, I absolutely do not deny you your experience, no one can argue with experience, for an...
  17. Holmsey

    Lady Mar writes to Prof Wessely

    Hi Natasa, I'm doing my best to be honest, considerate and respectfull of all other opinions expressed, to suggest that this wastes your time I find offensive, certainly more so than your earlier critisism of IVI. For the record, I'm highly defensive of subjective experience, no one can argue...
  18. Holmsey

    Lady Mar writes to Prof Wessely

    Don't want to get into word play, in the UK subjective testimony requires at least one peice of corroborating evidence in law, that's the interpretation I was aluding to. If Pace outcomes are 'potentially biased' then potentially false evidence has been provided. Again in law to provide false...
  19. Holmsey

    Lady Mar writes to Prof Wessely

    You are as you say entitled to pursue you beleifs in any direction you choose, whether or not that direction proves usefull to you individually or the advocacy around our illness in general can only be judged against your intended goals. With regards to SW and treatments. SW didn't adopt those...
  20. Holmsey

    Lady Mar writes to Prof Wessely

    I don't, but I've absolutely no doubt I could find them. But lets look at it another way. If you are in a position to argue that none of your symptoms are effected by physical stress then you would have no reason to decline GET, at worst it's just going to take up your time. In a similar way, if...
  21. Holmsey

    Lady Mar writes to Prof Wessely

    Isn't that a double negative, I say you can't make that conclusion and then you say I can't make the conclusion that you can't make the conclusion...I got lost somewhere, so you're saying you agree with the earlier leap but not with my suggesting that it's a leap. I disagree, it's government we...
  22. Holmsey

    Lady Mar writes to Prof Wessely

    Hi Alex, I wasn't making a defence for CBT practiced in either fashion, I was simply trying to establish as best I could that as patients we can't just put all the responsibility for getting well onto someone else. In some cases saying 'make me better' is like saying 'make me taller', that...
  23. Holmsey

    Lady Mar writes to Prof Wessely

    Evidence is objective, stories are subjective.
  24. Holmsey

    Lady Mar writes to Prof Wessely

    But Bob, there is a serious point to what IVI has said, patients are not somehow separate from their illness. Would you not blame a heart or liver diseased patient who continued to smoke for being irresponsible. What about an alcoholic who after being given a liver transplant continues to drink...
  25. Holmsey

    Lady Mar writes to Prof Wessely

    In Britain, and I'm sure elsewhere, there is abuse and neglect in health care for sure, but it's certainly not limited to ME/CFS. I'm not sure how you can jump from that to the psychiatric model of ME being directly to blame, as I said, it's not limited to ME/CFS so there's not direct link...
  26. Holmsey

    Lady Mar writes to Prof Wessely

    Unfortunately this is the reality until something significant changes, the UK Government had just proposed a 1% cap on benefit increases, that's all benefits. Inflation is running at between 3% and 4% on official figures alone. My daughters father in law, only 1 year short of the official...
  27. Holmsey

    Lady Mar writes to Prof Wessely

    I have a close friend who walked out of a supermarket job after what he saw as an attempt at bullying by a manager, he went back to his flat packed a bag and took the next train south to spend some time with his mother while deciding what next. In the interim, a co-worker confussed by his quiet...
  28. Holmsey

    Wessely honoured with a knighthood for his work for GWS and ME

    No Valentijn, my appologies if you though my reference to angry rhetoric was aimed at you, it was a general comment on where almost all conversations on SW end up, strangely this thread hasn't been as bad, maybe it's the feel good holiday factor. Best wishes,;)
  29. Holmsey

    How the government bought off the advocacy movement

    Hi Rusty, that's too big a leap for me I'm afraid, I understand your frustration but things are rarely as they seem. What you appear to be implying is that they've both been bought out, I can only speak for myself but no amount of money would make up for the lack of a cure, how do you even start...
  30. Holmsey

    Wessely honoured with a knighthood for his work for GWS and ME

    Yes I've noted of late that he's rather reluctant to repeat, or even elaborate upon, some quite categorical statements he's made in the past. (COM). My feeling however is, that as a group, we either accept he is now irrelevant and start ignoring what's happening in the world of make beleive...