August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Discussion in 'General ME/CFS Discussion' started by bertiedog, May 9, 2014.

  1. bertiedog

    bertiedog Senior Member

    South East England, UK
    For those of you who live in the UK, I don't know if you watched the BBC programme on Wednesday evening, 7 May at 9 pm. It was called "Vertigo Road Trip" and it filmed 5 sufferers with a severe phobia of heights. Professor Jennifer Wild from Oxford University was the expert who helped these people address their fears by exposing them to different situations which would trigger their phobia ranging from climbing a glass encased staircase of a high building in London to going to the top of the tallest building in the world which was in Dubai (I think).

    What stood out for me (and yes I do have a phobia of heights as well as ME/CFS) was how she told the sufferers to IGNORE the signals being sent out by their bodies. Not to tune in to these feelings at all because they were just the flight and fight hormones kicking in and were unimportant. She got one of them to jump up and down on the spot when he mentioned he had very weak and wobbly legs.

    This got me thinking about the Psychiatrist's approach to ME/CFS. I guess this is what they try and do when using a CBT approach and we would complain about our legs being unable to move anymore and our CNS would be screaming at us to stop what we were doing.

    I can see that there might be some benefit in this type of approach if one was simply trying to calm the central nervous system which would be pouring adrenaline into our systems when doing something physical but I know myself if I use this type of approach when walking my dog in the park and I am not on a good day I will get so dizzy and probably panicky I would almost fall over and my body would be like lead for hours afterwards. (I am lucky in that I have an oxygen concentrator and this would probably eventually get me over it sometime later.)

    Personally I have found it impossible to ignore those messages if I am just not good on a certain day but I do think that sort of approach can help if I am feeling stronger and my CNS starts to try and stop me from doing some exercise. Also I find that a low dose betablocker helps me a lot if I take it at least half an hour before going out for a walk or going shopping.

    I think I suffer with the hyperPOTS syndrome so I might well be different from a lot of other ME/CFS sufferers. Also I am able to have exercise on most days, stuff like a bit of light shopping or walking my dog in the park. But all this changes if I have a virus or throat infection, then I really struggle to do anything physical and just have to rest.

    What I wondered, are there studies which show what harm can be done to a ME/CFS sufferer who consistently ignores the signals their body is sending out because I would have thought one could end up much sicker.

    Dr Wild's approach did work for these sufferers with a phobia of heights but I cannot see that it would cure a person with true ME/CFS in any shape or form.

  2. A.B.

    A.B. Senior Member

    This technique works when the fears are irrational. In ME/CFS they are not: impaired recovery from and abnormal response to exertion has been found in several studies studying different parameters. Besides, fear and physical pain, discomfort, and symptoms are not the same thing. Don't let psychiatrists frame ME/CFS as some sort of fear of exertion.
    Last edited: May 9, 2014
    Indigophoton, Tito, Cheshire and 7 others like this.
  3. A.B. is correct
    If you get your leg broken, ignoring the pain and walking on it is about the WORST bloody thing you can do
    *same thing with ME*
    which is why I want those "Lightning Process" gits facing prosecution.
    completely reasonable to try and help folk cope with problems, but not to ignore/bullshit/worsen them!


    "Don't worry, we can help! Here, throw some petrol on it!"

    Countrygirl, heapsreal, Min and 2 others like this.
  4. SDSue

    SDSue Southeast

    Like many of us, I presume, I did try to ignore my body signals when I would have been considered a moderate case of ME/CFS. That's what got me to the severe level.

    I was going to beat this. I was smarter than those who would have warned me. I was stronger and more determined. I would show others that my sheer will was better and could prevail.

    I was wrong. So very wrong. And so are these whack job psychologists.
    greebo, taniaaust1, Sean and 3 others like this.
  5. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Allyson and Wildcat like this.
  6. vamah

    vamah Senior Member

    Washington , DC area
    I don't think that a person who was hanging off a cliff by one hand would be told their fear of heights was irrational and they should ignore it. Just saying.
    Allyson, taniaaust1, rosie26 and 3 others like this.
  7. ME patient shouts out to psychiatrist hanging from a cliff by one hand:

    "Scratch your arse, it's all in your mind!" :p
    Cheshire and taniaaust1 like this.
  8. bertiedog

    bertiedog Senior Member

    South East England, UK
    I agree with everything that has been said regarding the way Psychiatrist's look at ME/CFS but I do now understand why they use the approach of ignoring your body's sensations and continue to push on regardless because they so obviously do not see ME/CFS as a physical illness. Very obviously they just regard it as a mental health issue which is so ignorant and damaging to so many sufferers.

    Its probably the reason why I have never gone to see a Psychiatrist and why I have never sort any treatment through the NHS.

  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    Reminds of a joke. The definition of agony, a one armed man hanging off a cliff with itchy balls. Lol. Maybe the same joke but u cleaned it up hehehe.
    SilverbladeTE likes this.
  10. Heapsreal
    yup! ;)
    another one of the many hilarious "definition of agony" ones is:
    "a fly sliding along a razor blade using its balls for brakes" :p
    heapsreal likes this.
  11. Allyson


    Australia, Melbourne
    I think a lot of what seem to be Psych symptoms are really due to POTS/OI ( not all but namy)

    how to tell the difference.....

    if you lie down in a dark room, drink lots of electrolytes and put on compression clothing - esp round the abdo - the symptoms disappear within a short time - works for :anxiety: and the black dog feeling of the dog anyone?

    that will be $250 thanks...and see you next week...... lol



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