• 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.

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  1. L

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    I'm actually laughing out loud. Unbelievable! Our taxes pay for this stuff..They're measuring each other....'The Oldenburg Burnout Inventory' !!!!!?!
  2. L

    Chronic Fatigue Syndrome: Cognitive, Behavioural and Emotional Processing Vulnerability Factors

    When I think back to when I was first ill ...I was desperate not to be seen as lazy. I eagerly characterised myself as a hard worker... I feels so sorry for the poor people having CBT at King's with Chalder and Co, (as I did) desperately trying to make sense of why they feel like absolute...
  3. L

    Chronic Fatigue Syndrome: Cognitive, Behavioural and Emotional Processing Vulnerability Factors

    I know @TiredSam...! They were absolutely clueless.
  4. L

    Chronic Fatigue Syndrome: Cognitive, Behavioural and Emotional Processing Vulnerability Factors

    Ha ha....I took part in a 'study' a few years ago led by Kate Rimes ( the above author). It was to test the effect of Mindfulness on CFS..... Lots of rating your 'fatigue'.....1 to 10. At the first session we had to see how many times we could stand up and sit down in a minute. At the end...
  5. L

    UK thoughts please

    Can you see a cardiologist and get a Tilt Table Test perhaps. ?
  6. L

    UK thoughts please

    Thank God for the internet!!!!!. I really don't know what I would have done without PR and other similar sites. @Braveheart.....do look into the POTS. (Wish I had done so much earlier)....especially if you're dizzy when upright.
  7. L

    UK thoughts please

    I would concur with @Jenny TipsforME. If you have heart symptoms, dizziness, blood pressure issues, palpitations etc.......looking into POTS could be fruitful.....Having an official POTS diagnosis has helped me. There's a year's waiting list to see the specialist ( in London) But in the meantime...
  8. L

    cystoscopy.

    Sorry to hear you gave to deal with this just before Christmas....If it's any reassurance, when I had my cytoscopy they saw some patches of inflammation and I too had to have a CT scan and biopsy. When I came to have the biopsy done under General anaesthetic, four months later the patch had...
  9. L

    cystoscopy.

    I've also got Interstitial Cystitis.....get bleeding and patches of inflammation in my bladder that apparently come and go.... I drink bicarb of soda when its bad....
  10. L

    cystoscopy.

    Yes I've had three!....one under General Anaesthetic....
  11. L

    My experience with Mickel Therapy

    Do you think that all these therapies, especially the ones with a relaxation/mindfulness type componant, like say the Gupta programme would be more likely to work with any PWME who had a hyperadrenergic componant to their illness. Could any benefits just be because they were a bit calmer?
  12. L

    Do you still have POTS symptoms whilst laying down?

    My blood pressure goes up when lying down and my palpitations are at their worst. I can't get relief......upright bad.....lying bad....but in a different way.
  13. L

    E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

    We do have Tilt Tables Esther. And doctors to use them. How many of these youngsters have POTS and could be treated.?
  14. L

    E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

    There is a kind of chasm that those with our kind of illnesses fall. I recently had patches of inflammation and bleeding from my bladder. This was investigated by cytoscopy to check for cancer....apparently all was OK. After infection was also ruled out. I asked what could cause such symptons...
  15. L

    Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

    I noticed also in the Guardian they are not allowing comments under their ME article.
  16. L

    Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

    Crawley's on BBC Radio 4 Today Programme at 8.10 apparently......Can't bear to listen myself.
  17. L

    Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

    Crawley's on BBC Radio 4 this morning.....Today Programme at 8.10. Not sure I can listen.
  18. L

    Poll: Do you have an exaggerated startle reflex or response?

    During my Tilt Table Test the doctor said I had an exaggerated startle response....I imagine it's all part of having a dominant Sympathic Nervous system?..and being hyperadrenergic...? ..(mind you, being strapped to a table and dosed with nitroglycerin would be enough to startle anyone!)
  19. L

    Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

    He's back @Mrs Sowester....
  20. L

    Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

    I tried....@Mrs Sowester.....not a very good retort I'm afraid .
  21. L

    Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

    I'm Hamster100. ....will join you @Mrs Sowester .
  22. L

    Mitochondria (including Naviaux): what are the implications for resting schedules?

    The problem for me is that I have....the POTS overactive Sympathic nervous system. This is, I assume, the 'wired but tired' state. If the parasympathetic nervous system can't be immediately switched on during the 15 minutes then the resting will not be happening. Those surges of adrenalin just...
  23. L

    "PACE Trial Participants – were they exploited?" (September 10) by Peter Kemp

    I wonder if the participants were told where their own results lay within the data. I had CBT at Kings I think just after the trial itself but didn't participate. I always wondered how my own results were quantified....Was I deemed to have been a success.?
  24. L

    Science Media Centre - "CBT - does it really work?"

    CBT was a bit like talking to a nice, sensible friend.....who in retrospect you realised had their own secret agenda.
  25. L

    Science Media Centre - "CBT - does it really work?"

    I suppose it depends how you define 'works' ! I did it at King's Collage under Chalder. But wasn't part of the trial. Being urged to believe symptoms are not physical caused me to ignore what turned out to be diagnosable and (maybe) treatable POTs.....thus saving money for the NHS....
  26. L

    Treatment implications of the Naviaux study (PNAS, August 2016)

    Are they still thinking in terms of anti purinergic therapy do you think? Suramin etc (Have to say I'm in awe.....there are some clever people on PR. Imagine what they'd be like without brain fog!!!)
  27. L

    The complexity of diagnosing postural orthostatic tachycardia syndrome...

    I'm much better after having drunk my coffee about an hour after getting up. Tachycardia worse but feeling more human. Able to do stuff for about an hour then downhill all the way. I know POTS people aren't supposed to drink it but it makes my life doable, if only for an hour a day.
  28. L

    relapsing /remitting is this normal?

    Same for me.....10 years now....but the exact opposite (season wise)...
  29. L

    relapsing /remitting is this normal?

    I am the same.....a few years ago in s good patch, I climbed a mountain with no ill effect or PEM, six months later I was struggling to walk to the bathroom. Each 'relapse' lasts about 9 months then a couple of months of near normal where I can forget all about ME. I'm always worse in the...