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  1. dangermouse

    How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

    It's always the same for me - lower energy and weakness. When bad, add to the mix a feeling of being really sick (as in unwell, food poisoning or norovirus or bad flu weakness). That's how it is for me.
  2. dangermouse

    How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

    Pre ME - I had severe food poisoning whist on holiday abroad. I was so weak I had to lie on the floor at the front of the aircraft on flight home. I didn’t have strength to sit upright. I had to have a wheelchair from aircraft to airport & around airport to taxi. I was bedbound for a while...
  3. dangermouse

    Psychiatry Advisor: Addressing depression in ME/CFS, 2018, Cindy Lampner

    Just a point of interest as to how mood can be affected etc: A good friend recently had a bereavement, she is normally one of the happiest and bouncy (Tigger-type) people that I know but this bereavement shook her and changed her - in a bad way. She had intense sessions with mental health team...
  4. dangermouse

    Psychiatry Advisor: Addressing depression in ME/CFS, 2018, Cindy Lampner

    It's difficult to explain. Especially with a fogged up mind .. but I'll try: I don't get what I understand of as clinical depression, I tend to experience a fluctuation of mood. My mood (brain chemistry) is definitely affected by my fluctuating hormones and I can normally tell that kind of...
  5. dangermouse

    Psychiatry Advisor: Addressing depression in ME/CFS, 2018, Cindy Lampner

    This. How is it not obvious? Who are these people? It’s not rocket science is it. :mad:
  6. dangermouse

    PEM is associated with greater symptom burden and psychological distress in patients ... with CFS (2019) May, Fletcher, Klimas et al.

    I’ve not read the article, what stands out to me is: We (ME patients on forum(s)) are aware of PEM being a hallmark and telltale factor of this illness and the BPS guys have often chosen to ignore it. What a great tool they have here to play with - in essence they could now embrace PEM as a...
  7. dangermouse

    Swollen area on upper thigh

    Hi everyone, I have good news. I finally (and fortunately, as my scan results were going to be left to be reported on for another week till I mentioned the fiasco I've endured and the NICE guidelines stating that my scan should have been urgent and within 2 weeks and I'd had to wait 5 weeks)...
  8. dangermouse

    Pain in ME–what helps you and what can I do?

    There’s nothing really that takes my pain away, but the thing that helps me most is heat. Like a hot water bottle or a warm bath (if it’s manageable). Gabapentn didn’t suit me and effects were not long lasting. Acupuncture wasn’t something I could tolerate, I was too sensitive in the areas...
  9. dangermouse

    Does PEM contribute to POTS?

    I’m due to have a 24hr blood pressure monitor done (for hypotension episodes) well I’m rearranging as I’m not up to all the energy sapping appointments at this time - but, yeah my cardiologist has referred me to see if anything gets recorded, if needed she’ll prescribe something to help?? Not...
  10. dangermouse

    'They think disability is almost worse than being dead' - fibromyalgia article on BBC website

    This really needs to change and the public be made more aware of the spectrum of complexity that makes up disability.
  11. dangermouse

    MEAction: "DEMYSTIFYING THE DIAGNOSTIC CRITERIA FOR ME AND RELATED DISEASE"

    This. And, I (when I have PEM or relapsed or having brain fog for whatever random reason) forget all the symptoms (of which there are many that flare up). I long for a day when (just like established diagnosis' that the public pretty much have an idea about, or if they don't they believe it)...
  12. dangermouse

    PEM for those who are, or were, mild sufferers, how would you describe it?

    That is my experience - and especially after I had pneumonia.
  13. dangermouse

    Gary Burgess - The ME show, and updates about Gary's health.

    @Gary Burgess I am SO sorry to hear this news. Thinking of you and wishing you all the very best with your treatment xx
  14. dangermouse

    Very quick survey on anti inflammatories

    I’ve done it. :)
  15. dangermouse

    Podcast: CBT for Chronic Fatigue Syndrome: Dr Lucy Maddox, Trudie Chalder

    How offensive, back to patient blaming - again. I have really wanted to be cured, still really really want to be cured .. I’ve given my all to try and be well. :mad:
  16. dangermouse

    Effects of mirthful laughter on pain tolerance: A randomized controlled investigation, 2019, Lapierre et al

    Hmm, just when you thought you’d seen it all .. this is a joke, right?
  17. dangermouse

    Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

    Social media involving asking ie: ME Association, Carol Monaghan, @Tom Kindlon to help out. I know one person directly who has ME but avoids forums and patient community because of how long she's had ME and how many times she got her hopes up, or to avoid the nasty BPS narrative that is very...
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