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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. peggy-sue

    UK people: sign this petition to keep the Human Rights Act to protect us as disabled people

    To be more accurate still, the government wants to be able to decide who is human and who is not, and not to have a court above them to tell them that disabled folk are human too, even when they decide they are not. There. Sorted for you.
  2. peggy-sue

    Examples of extreme pacing or ART

    I sit on a stool to have a shower myself. I have an energy and tangle-saving technique for washing my hair, which is long.:thumbsup: I start by combing it all forwards over my head, upside down. Then I wet it. I get hold of the shampoo bottle, and spread a thin line of it along my hand...
  3. peggy-sue

    Have you had this realization?

    When I was a child of about 8, crossing the Bay of Biscay at night, during a storm, I escaped my parents and got myself up onto the bridge of the ship, outside. I couldn't tell the seaspray from the rain, I couldn't tell the black roaring sea from the black sky, full of blustering winds. I...
  4. peggy-sue

    My recovery story, in case anyone is interested

    I'm absolutely delighted to hear you are recovered!:):thumbsup::angel:
  5. peggy-sue

    Help, Advice? Adjusting to Daylight Saving Time?

    I have dreadful trouble adjusting, both ways. The best analogy I can think of is jet-lag. It is easier for a normal person's body to keep going until the next sleep time and so get very tired, than it is to try to go to bed earlier and adjust the clock "backwards". I have read some research on...
  6. peggy-sue

    Are my problems ME/CFS related? So very very scared its all over for me

    It really does not sound at all like ME/CFS, and I'm afraid it does sound exactly like extreme anxiety. I get that as well, (as having ME/CFS) It's really, really horrible. I go round and round the kitchen table, muttering to myself, my thoughts become completely obsessive. Then I end up with...
  7. peggy-sue

    New era for ME/CFS research as top cytokine study attracts media headlines

    This study also highlights a major failing in just about all psychology research. Complete failure to take into account all confounding variables. :bang-head: Thank goodness these researchers had the basic common scientific sense to "eyeball the data" - the phrase used in labs to describe the...
  8. peggy-sue

    The BPS youtube channel

    I always see them as being completely interchangable.:p
  9. peggy-sue

    Suggestions for specialists in U.K?

    Your gp should be able to get you tested for Lupus. It was one of the few things I did manage to get tested for, although it did help that I had a rosacea like rash on my face at the time. It is done on the NHS. But maybe you should take some dirty sandpaper to your cheeks first - get some...
  10. peggy-sue

    Hornig/Lipkin cytokine study: Foreign language coverage

    I'm so suspicious of what's said that I read the title of this thread as; "Foreign language coverup".:p
  11. peggy-sue

    KCL job ad: "to develop a novel CBT web based intervention to prevent the onset of chronic fatigue"

    Currently, the ball is in a different court regarding review of the NICE Guidelines - the NHS cannot review it, even if they wanted to, until the government asks them to do so, at the moment. I did begin to suspect even during my degree in psychology, that nobody ever wanted to find anything...
  12. peggy-sue

    Medscape perspective on Managing SEID

    @Scarecrow - I wondered what my education had to do with the workings of my bladder too, which is why I decided it was some sort of gp slang warning about me on a personal level. I failed to fall for his flannel about dualism with regard to my being sick. :p He was not happy about that.:grumpy:
  13. peggy-sue

    Medscape perspective on Managing SEID

    My gp was dictating a letter about me to a urologist (nothing to do with ME, I peed a load of blood one morning). In it, he described me as being; "A highly educated lady in her mid-50s..." I did suspect that was gp slang for; "pain in the ar*e who actually knows something, be careful"...
  14. peggy-sue

    Any opinions on Sponaugle Wellness Institute for Lyme treatment ?

    All that has been proven, scientifically, beyond all reasonable doubt? And have the "detoxing" agents been proven to work, specifically for these lipoproteins? Don't worry - I don't need an answer. I have a completely closed brain about this sort of thing.o_O
  15. peggy-sue

    Any opinions on Sponaugle Wellness Institute for Lyme treatment ?

    The place uses a lot of words I see as "quackery alerts". "Wellness" just for a start, followed rapidly by "detox" and in the interests of conserving precious energy, I know I really don't really need to read any more, or bother about details. I reckon anything which uses "testimonials" is...
  16. peggy-sue

    Studies about negative consequences of psychogenic diagnoses - help?

    This is only anecdotal, but a friend of mine lost over 10 years of his life, nearly lost his wife and they lost their chance of having a family, because of a CFS misdiagnosis. It wasn't until he was taken to A&E that it was discovered he had had heart failure and needed a pacemaker, all along...
  17. peggy-sue

    A Balanced View of The Lightning Process

    I think I paid more attention to symptoms when I first got ill - they were so odd and made no sense; and I needed to write them down for the gp. I do my best to ignore them now, they're just part and parcel of being.
  18. peggy-sue

    A Balanced View of The Lightning Process

    Given the psychiatric lot have even been contemplating doing an official study on the "lightening your wallet process", it would appear even they are not well-enough educated to see past PP's silly invented theory. It's just a shame that government is so keen on any sort of business being set...
  19. peggy-sue

    Do You Guys Know ANY Treatment For OCD?

    I've never tried taking anything for it, it's just how I react to being bullied, or rather, it gets out of hand when I'm bullied. It is a personal characteristic that can be beneficial in, (for example), an academic research career. I've been taking zinc (with vitD) for some considerable time...
  20. peggy-sue

    A Balanced View of The Lightning Process

    There is no scientific evidence or justification for PP's excess adrenalin theory. It's just a get-rich-quick-on-the-backs-of the-desperate scheme.:cry: (Disclaimer for legal purposes. This is my not so humble and personal opinion, it should not be taken as a reflection on PR or anybody else...
  21. peggy-sue

    Do You Guys Know ANY Treatment For OCD?

    I get bad OCD when I'm bullied, the only "cure" is to get away from the bully - not always easy if it is your boss or your husband. :cautious: It was all to do with my having no control in the situation - the OCD actions were my attempt to control at least something. I did have CBT for it -...
  22. peggy-sue

    UK General Election in May

    Edinburgh, libdem. Former neighbour of mine although you wouldn't know it. He wasn't the sort to bother saying "hello" or give a nod to a neighbour in the street, no matter how familiar they became. He stared straight through you. (sorry, can't seem to help stirring things today. :p)
  23. peggy-sue

    UK General Election in May

    @Scarecrow, When I'm in Edinburgh, I carry a note around on my person.:) It states that I should be left to die on the streets rather than be taken to the Western.:devil: (I had a terrible, terrible experience there while they were busily ensuring it took a long time for my Dad to die in agony...
  24. peggy-sue

    UK General Election in May

    I think the situation is different in Scotland, we have a different NHS system and we are not bound by NICE - although most gps use it as if we were. We have our own guidelines on the diagnosis and "treatment" of ME, (management, really) but because of the influence from AfME and NICE, they got...
  25. peggy-sue

    UK General Election in May

    I've been emailing my local MP about loads of things recently. All I'm getting back from him is; "I will reply later when I have had time to study the issues you raise." He doesn't bother replying after that. But, he's nuLabour, on a hiding to loosing his seat to the SNP, :p :thumbsup: I...
  26. peggy-sue

    UK General Election in May

    I am not sure why writing to candidates would be of any use. I wouldn't vote tory/nulabour/libdem even if they promised to put ME as a number one priority in their manifesto.
  27. peggy-sue

    Poll on myalgia (muscle pain)

    I'm (slightly) comforted to hear that at least one other person has had the same weird stabbing pains I get as well as the general achiness and tenderness and the joint pains without locus or redness. I'm not pleased they get them at all, just relieved to hear I'm not alone.:p I've never...
  28. peggy-sue

    Fibromyalgia Imaging Study Shows Unique Brain Connectivity

    What is TBI? I've certainly heard of a neural process called kindling, which hypersensitises aspects of pain. There have been studies done on babies who had to undergo serious and severe treatments to save their lives at birth - loads of needles, catheters, tests and surgical stuff. The...
  29. peggy-sue

    More UK government pressure on sick & disabled in prospect?

    The proposal is completely unreasonable. And the details will be the devil's.
  30. peggy-sue

    More UK government pressure on sick & disabled in prospect?

    I'm an addict too and I agree, rehab isn't for everyone. The correct way has to be found for each individual. And it needs to be in place, waiting for the moment they are ready for it, in order to embrace it. It's just a waste of resources forcing somebody into rehab or any other sort of...