• 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. persuasion

    A disease with two faces? Re-naming ME/CFS

    You may be right - I think it was a regional thing. I was diagnosed in the 80s also but in London and I never heard the term ME until quite a few years later and I knew a lot of sufferers. It doesn't really matter now. ME has been contaminated. It's partly the fault of it being bound with CFS...
  2. persuasion

    A disease with two faces? Re-naming ME/CFS

    See reply above.
  3. persuasion

    A disease with two faces? Re-naming ME/CFS

    Unfortunately, I am a reluctant expert on ME since I've had it severely for 27 years. But you're right, I think ME was in usage in some parts of the UK and but perhaps not in all. I was diagnosed in the late 80s and it wasn't used for me nor anyone I knew. Perhaps it was a regional thing? I...
  4. persuasion

    A disease with two faces? Re-naming ME/CFS

    I agree. Ramsay's Disease doesn't have the word 'fatigue' in it, which must be good. The label, 'ME' is so stigmatised it's painful to use.
  5. persuasion

    A disease with two faces? Re-naming ME/CFS

    Love the 'elevator' explanation. To strangers and acquaintances, I pretend I'm well. To doctors I use the term ME (which I loathe saying to the point that if I have to see a consultant about another health concern and they ask: are you in good health? I'll say, yes just to avoid saying ME.)...
  6. persuasion

    A disease with two faces? Re-naming ME/CFS

    persuasion submitted a new blog post: A disease with two faces? Re-naming ME/CFS Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ... If there is one thing that is sure to get ME/CFS sufferers riled up, it is the name of our...
  7. persuasion

    ME/CFS: A disease at war with itself

    I think it's just a feeling a lot of ill people get that why should we take up space because we're made to feel so useless. It's hard to feel useful if you're not being useful 'out there.' But why should anyone be useful? Perhaps doing nothing is more useful than doing something? At least no...
  8. persuasion

    ME/CFS: A disease at war with itself

    There is definitely a feeling that ME/CFS patients shouldn't be bothering the medical profession (because they don't take us seriously). But also that not being able to be a productive person in the conventional sense (earning, providing, contributing to society) lowers our self-esteem and makes...
  9. persuasion

    ME/CFS: A disease at war with itself

    There's nothing wrong with voluntary euthanasia per se (though I do think there are question-marks surrounding the pressure the ill and old might feel to get rid of themselves due to the climate of functionality the world seems obsessed by at the moment). I don't think anyone would agree to...
  10. persuasion

    ME/CFS: A disease at war with itself

    Yes, I can see your point JalapenoLuv. The problem is that by dismissing the old or the ill as 'feeble, ineffectual...pathetic,' is that it makes it a lot harder for those who want to carry on (for our own reasons, despite the difficulties, perhaps because we have small children or because we...
  11. persuasion

    ME/CFS: A disease at war with itself

    And another one: http://visitingmrssmith.com/?p=459 which explores why people who are seriously ill consider suicide. These views (in the Atlantic magazine) don't help us at all.
  12. persuasion

    ME/CFS: A disease at war with itself

    I don't know much about US policy makers (being in the UK) but the fact that anyone in a position of authority or power states these views is worrying. I don't care what he thinks in private - that's his business. But it's not 'just an opinion' when what you say actually has a real effect on...
  13. persuasion

    ME/CFS: A disease at war with itself

    Ren, You inspired me to write a response to the Atlantic article. You can see it here: http://visitingmrssmith.com/?p=420
  14. persuasion

    ME/CFS: A disease at war with itself

    Not that he says he will kill himself. Just read the article in full: he says he will refuse all tests and treatments after 75. Hmmm, I wonder...Easy to say when you're fit and healthy!
  15. persuasion

    ME/CFS: A disease at war with itself

    Interesting - I've read these kinds of claims before. I agree with his children that when the time comes, the author of the article will change his mind. It's not easy to kill oneself in cold blood, even when one is severely ill or disabled, never mind when one is in excellent health. What I...
  16. persuasion

    ME/CFS: A disease at war with itself

    Jodi, can you pm me? I'm not sure how to do this myself. Thanks.
  17. persuasion

    ME/CFS: A disease at war with itself

    I know ahmo, it is a lot of work treading through the minefield of everything that surrounds ME. As if we don't have enough to deal with just with the illness.
  18. persuasion

    ME/CFS: A disease at war with itself

    Hi JAM, Many thanks. Interesting that you felt a decrease in negative feedback once you were found to have a 'real' infection. It's all a bit crazy!
  19. persuasion

    ME/CFS: A disease at war with itself

    Thanks NK17. Yes, it is hard to distill the crazy body not working into a succinct message that people will 'get'. I've not managed it yet and veer from hiding it to explaining it. But I'm never really at peace with it.
  20. persuasion

    ME/CFS: A disease at war with itself

    Ruby was 15 so she had a good innings. I'm on the look out for a chocolate as they do look spookily similar, as you say, so getting another mini black and tan might be a little disconcerting...
  21. persuasion

    ME/CFS: A disease at war with itself

    Thank Jody!
  22. persuasion

    ME/CFS: A disease at war with itself

    Thanks xchocoholic, I agree, the trust issue is hard. I think most people with ME do support each other. I think it's more a case that when one is oppressed, sometimes that oppression causes rifts within a community, particularly if that community is already not cohesive due to perhaps...
  23. persuasion

    ME/CFS: A disease at war with itself

    Thanks Desdinova, Very interested to hear that people with other conditions do experience a similar social disapproval or even outrage.
  24. persuasion

    ME/CFS: A disease at war with itself

    Thanks Gingergrrl. Love the Daxie (we had a black and tan mini till recently.) RIP Ruby.
  25. persuasion

    ME/CFS: A disease at war with itself

    Thanks Dreambirdie, I'm glad you liked the 'misbehaving' idea. It took me a while to realise that this is how people often viewed me, as if I was doing something really anti-social just by being ill with this disease.
  26. persuasion

    ME/CFS: A disease at war with itself

    Yes, 'Useless Eaters': a frightening concept.
  27. persuasion

    ME/CFS: A disease at war with itself

    Thanks Simon.
  28. persuasion

    ME/CFS: A disease at war with itself

    Thanks worldbackwards. Guilt and suspicion. It's a very strange experience having this illness!
  29. persuasion

    ME/CFS: A disease at war with itself

    Jody submitted a new blog post: ME/CFS: A disease at war with itself Persuasion Smith shares some thoughts on the stigma that comes with ME/CFS ... We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is...
  30. persuasion

    New on http://visitingmrssmith.com - Bastard Disease: legitimate and illegitimate illness.

    Chronic illness isn't our friend. See it as an enemy that we are able to subdue. Sometimes. Posted about this and what the art of battle in Taoism says about this on http://visitingmrssmith.com