Thursday, December 13, 2012

Next letter from Countess of Mar to Wessely

Permission to repost

From: MAR, Countess

Sent: 12 December 2012 10:36

To: 'Wessely, Simon'

Subject: My letter of 5 December 2012

Dear Professor Wessely

I am sure you will appreciate the importance of my letter of 5 December
2012. Please will you answer the central question: do you still believe that
ME/CFS is "perpetuated predominantly by dysfunctional beliefs and coping

The rancour that persists seems to result from the incompatible and,
seemingly, irreconcilable views about why patients with ME/CFS continue to
experience exercise intolerance, fatigue, pain and other incapacitating
symptoms for long periods following a viral infection or other environmental

The psychological model, which you first proposed, argues that these
symptoms result predominantly from physical deconditioning secondary to fear of activity. Almost without exception, this model is not consistent with the experience of patients with a diagnosis of CFS/ME; nor is it consistent with the data from the FINE and PACE trials, as well as a significant bio-medical evidence base, which all suggest that the patients are correct.

It is my hope that we can find a way out of the current impasse; that we
clarify where we agree and disagree, and that we find the means to advance
the science of ME/CFS to the benefit of millions of patients worldwide who
are now living their lives in the shadows of despair.

I look forward to hearing from you soon.

Yours sincerely


* * *
That's certainly my experience.  When I relapsed this time, I went from being able to walk 2 miles to work to needing to take the bus to being so exhausted after walking 2 blocks from the bus stop that I had to rest for an hour before doing any work, all in a matter of weeks.
When I brought it up to a doctor -- regretfully not my own -- he confirmed that it is impossible for a healthy human to decondition that rapidly.
My own doctor avoided the deconditioning argument and instead went for "you're just depressed, you can do more than you think you can" while ignoring that I was still thinking like a healthy person and thought I could do a lot more than my body would allow me to do.

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