The impossibility of CBT and GET for a Severe ME Sufferer

You cannot make a body that is malfunctioning, function by trying to change your thoughts or by forcing it to move when it is unable, or on the brink of being unable :

  • You cannot think when your brain won't work.
  • You cannot process information when there is a malfunction that is blocking it. 
  • You cannot find mental energy you do not have in order to think positively at whim.
  • You cannot engage in a therapy if you are so physically and mentally lacking in energy  and so neurologically ill that you cannot cope with the interaction.
  • You cannot attend a therapy session of 1.5 hours, when you cannot sit up in bed even, when you cannot cope with normal light  and cannot attend a clinic because you are noise-sensitive and in constant pain..
  •  Any one severe ME symptom, when exacerbated ,  is  enough to put you in bed for weeks, if you have managed to get out of it in the first place.
  • You have to take into account the after-expenditure of energy and the impact of adrenalin that will be released under pressure,  helping you cope in the moment but causing you to relapse once it has run out 
  • You cannot deny your reality, just because someone does  not believe in the truth of the neurological basis of your illness.
  •  The concept of "rest" is difficult to determine for those severe ME sufferers who move closer to disability and paralysis the closer they get to the resting/sleep state. Rest is the supposed key to pacing, but it is much more complex in people with severe ME. Sleep does not bring restoration of the normal. Even relaxation techniques could be deleterious for someone with severe ME. 
  •  You cannot increase your activity to order, when you only have a minute amount of energy.  People with severe ME have at best 20% functional ability. You cannot go beyond what you have just because someone demands it.
  •  You cannot exercise for a certain, controlled length of time when you cannot predict the worsening of the various different symptoms that you have or because you will it to be so. 

Linda Crowhurst

Comments

  1. As CBT involves convincing a sick person that they aren't sick and GET involves a gradual increase of an activity known to make the sickness worse, I suggest extending their application to other conditions: Graded nut eating for nut allergy, Graded cigarette smoking for lung cancer, Graded double- chocolate bun eating for obesity, Graded sugar consumption for diabetes, even maybe Graded accident therapy for people with broken limbs. I'm sure researchers could be found who could create evidence that these treatments are 'safe' and 'effective'.

    ReplyDelete
    Replies
    1. You really highlight, in an innovative way, how ludicrous it is to suggest CBT or GET as a treatment for ME, as you say they are almost certain to make the person more ill, extremely, devastatingly ill in some cases, with nightmare long term consequences. If only professionals would open their eyes. Thank you so much Nancy ! xGreg

      Delete
  2. Thanks, Greg! I would love to explore the conundrum Linda raises about the problems involved in 'rest' for the severely ill. As you may remember, we've communicated about this a couple of years ago. I'm fairly fanatical about muscular exertion being somehow implicated in the disease process itself, and advocate Ramsay's recommendation of complete rest from the outset, but clearly for the severely ill it's not that simple, so I need to be educated...

    ReplyDelete

Post a Comment

Popular posts from this blog

25% Group and Stonebird Response to BACME article on care provision for severe ME.

Hoping for a post-PACE world

Severe ME : THREE VERY BASIC CONCEPTS THAT CARERS NEED TO GRASP