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

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  1. Woolie

    Grey and white matter differences in Chronic Fatigue Syndrome

    Yes, I agree that differences in white or grey matter volume - if they were found to exist based on reliable evidence - would not imply 'no physical basis'. But the thing is, I suspect there aren't any. The research standards in this area are really poor. Its so easy to get a false positive...
  2. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    I think this is a very good point. I also suspect that psychological states have little direct effect on long-term physical health, but can indirectly affect it via our behaviour - as you say, people under stress might smoke more, sleep less, etc. But these relationships could also be largely...
  3. Woolie

    PR Collapse

    Really, user? Can't believe that. You never said anything really inflammatory. Just good solid argument. I think its time for me to pull out too.
  4. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    @Mithriel, the trouble with this is that the next paper that comes along will very probably report a positive effect. This is because its very easy to obtain positive associations between illness and childhood adversity for all sorts of spurious reasons. What are we going to do then? Just...
  5. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    Well now that you ask, @char47, it just so happens I do! Childhood Adversity and Adult Chronic Disease by Gilbert et al (2002, American Journal of Preventive Medicine) This paper is a large population study (over 50,000 participants) and looked at all sorts of diseases, including asthma...
  6. Woolie

    What causes lack of emotion?

    Oh, righto, @Daffodil. Its just that your earlier post implied your doc thought serotonin was affected in CFS in general.
  7. Woolie

    What causes lack of emotion?

    This is the line they use to justify giving you antidepressants. Antidepressants in the SSRI group function by increasing serotonin. Nobody really knows why this works for depression. But I'm pretty sure there's not strong evidence for "serotonin depletion" in depression, or MECFS or any...
  8. Woolie

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Some Neurology is good. But Neurology researchers happily call on psychoBS whenever it suits them, and without questioning it. Grab a Freudian term here, assign an awkward subclass of memory disorders to the psychogenic bin there.
  9. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    No, you're right, @Cheshire. It shows that on top of all the usual limitations of this type of design, depression is a further problematic confounding factor that may be driving positive effects.
  10. Woolie

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Yes, that would be adhering to the intention-to-treat principle. Which is seen as the gold standard. Ideally, you'd present results both ways. You'd present the intent-to-treat results first (as explained above). Then you'd present the per protocol results. Per protocol looks at what people...
  11. Woolie

    PR Collapse

    Actually, user, I wouldn't mind creating a copy of my content from the public forum, just in case. I can do it manually, by wading thought the 'Your content' pages, but it you know off hand of an easier way, I'd love to know it.
  12. Woolie

    Terpenes = reduced PEM

    You know, I was a bit bemused earlier, but now you've got me wondering. A couple of springs ago, I got quite bad hay fever. It lasted about 6 weeks and was the best period in my life healthwise in the past four years. Almost as if the hay fever somehow 'distracted' my immune system or something...
  13. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    Yes, you're quite right. I should have said, I'd already moved on the generalisations about the whole enterprise without explaining. Still, some of the CTQ questions are a bit, well grey. Things like whether your parents demeaned you.
  14. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    Absolutely, good point. Its a total and utter discombobulated mess. Social class is the elephant in the room in any study looking at lifestyle/health practices and health outcomes. The health practices that are supposed to be linked to better health outcomes - cheese, red wine, coffee - are...
  15. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    Oh, and researchers, don't try to excuse yourself for not having a proper theory. You can't just say 'we didn't need a theory, because we were only doing an exploratory study'. That's two faced. You've chosen to look at childhood adversity - as opposed to, say, how many chicken pies the patient...
  16. Woolie

    What causes lack of emotion?

    That's an interesting thought, @thijs. I wonder if its something like that for me? I think I've also become so accustomed to the control of my life suddenly being ripped out from under me at short notice, I've learned just to submit to fate's whims. So now I don't get wound up about anything...
  17. Woolie

    What causes lack of emotion?

    Thanks, @Starsister. It was so sad reading your post here. What you're describing does sound a lot like depression to me. So many say they don't feel sad, they just don't feel much at all. We're social animals, we're supposed to have company. What could be more normal than feeling depressed...
  18. Woolie

    What causes lack of emotion?

    Its interesting you should mention this @drob31. I've been concerned about the same thing. When I first came down with this illness, I was a ball of emotions. But now I feel pretty middling to okay about most things. For me, its not a negative thing - I don't feel numb or uncaring or anything...
  19. Woolie

    PR Collapse

    Just to clarify, are we talking about RAG 1.0? Or "Organising Admin"? Or both?
  20. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    I'd add that even in depressed persons, we can't assume childhood adversity had anything to do with causing their depression. They're depressed, FFS, of course they put a negative slant on things - whether it be the past, present or future. That's literally what depression is.
  21. Woolie

    Rethinking childhood adversity in chronic fatigue syndrome

    We've got ourselves into such a mess with childhood adversity. Here are some of the other problems: Open Interviewing (interviewer not blind to person's illness): Obviously, this won't work. As @Londinium points out, if you question a patient enough, its not difficult to find something...
  22. Woolie

    Terpenes = reduced PEM

    So you just sniff them? And they are nice to smell? And that in itself is enough to reduce PEM?
  23. Woolie

    Mrs Sowester's Magic Beans

    Oh great! The sign that you feel worse is a definite sign that the treatment is working. That's the herxheimer reaction, as everyone here knows. A dog that doesn't love the smell of farts? I think his energies need aligning.
  24. Woolie

    Mrs Sowester's Magic Beans

    Yes, Mrs S is definitely not in it for the money. She just wants to help people and share her wisdom. All those negative people and haters - whose only desire is to shut her down and see her fail - should step off.
  25. Woolie

    Mrs Sowester's Magic Beans

    If I'm cured on your beans, can I pay a lot to undergo training as a qualified magic beans counsellor? Then buy 2,000 bottles from you to resell on to my customers - as you say there is an enormous market out there. Its such a good investment.
  26. Woolie

    Mrs Sowester's Magic Beans

    I'm sick from laughing so much! :rofl::rofl::rofl::rofl::rofl: Yes I would like the bleach-detox option too. These days, I just can't tell if my liver is really clean any more. Didn't some British guy narrowly escape death recently from eating cherry stones? Probably a made up story by some...
  27. Woolie

    Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

    That is mental (if you'll excuse the pun). Actually, if you look carefully at @Cheshire's quote, its the same sort of doublespeak that gets thrown at us: It doesn't say that recovery is staying in control of your life, etc. What it seems to be saying you can forget "real" recovery as you...
  28. Woolie

    The requested thread could not be found

    Is @adreno leaving? Oh no. We need a place where we can keep track of members leaving.
  29. Woolie

    Very Sad

    Who has pulled the plug already?
  30. Woolie

    Very Sad

    I do hope people share their contact details with other members they trust before pulling the plug. So we can all stay in touch.