An alternative model for understanding the PACE issue. #pwme

Some people tell me the pace trial is flawed, others tell me it's fraud.  I think it is something more interesting than either of these options.

The 10,000 strong patient led challenge to pace is, I think, scientifically and medically valid.  It is founded on huge talent and experience, and much work has been done despite huge disability through illness.

However, the authors of the pace trial do not appear to me to be anything other than extremely intelligent men and women.  Their work cannot be simply written off.

Peaceful settlement to the pace question seems unlikely while one side of the issue talks of gross errors and potentially nefarious intent, while the other talks in terms of delusion and extremism.

I offer another way of thinking about the issue.  I will express it in the form of an analogy.  I do not offer to debate it, nor do I advocate for its application to the pace question, I have simply been asked to try to provide an alternative model for what I think could be happening here.


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I give my brother £5.  In his absence I go into his room and place the money onto his desk.  My brother, however, is a liar.  He comes to me.  What lies could he choose to tell?

He could lie about unrelated things and entirely ignore my gift.

Alternatively my brother could claim not to have received my gift and in response, I might choose to re-make it.  This would be to his benefit for he would receive twice the amount I intended.

But instead my brother comes to me irate.  He tells me that I stole £5 from him.  If I am bullied into agreement I may end up paying the original gift, another £5 to re-make it and a further £5 to make up for the money I apparently stole.

After a number of similar instances I start to dispute his version of events and we argue.  My brother tells me he has an old film camera above his desk.  It takes a picture every couple of seconds:  We have a means to prove who is lying and who is telling the truth.

I am content, for I know I am telling the truth and I know my brother's story will soon be exposed as either flawed or fraud.

I hold the strip of film up to the light.  The images run side to side from left to right.  In the first you clearly can see my hand, holding a £5 pound note.  In the next I am putting the money onto his desk and in the final image I withdraw, as I should, empty-handed.

"There! Do you see?!"

But slowly the true horror of the situation reveals itself.

From his side of the filmstrip, from his left to his right, my hand in the first frame is seen to be empty, then in the next it is seen to be taking the £5 note and in the final frame it makes off with it: Bold as brass!

The order of events in time has changed.  From his side of the filmstrip, my gift looks like a theft.  

Neither of us can use this filmstrip to prove to you the reader, that we are the brother who tells the truth.


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To some within medicine pace was a gift to people with M.E, who then reacted to it with incomprehensible, delusional, anger.  To some within the M.E community pace was a theft; it took away credibility, fair treatment and the chance to rest.

Out of all conceivable explainations for CFS and M.E, UK medicine selected "Deconditioning" as the maintaining factor for the illness.  "Deconditioning theory" is simply the primary symptom of M.E, Post Exertional Malaise, reversed in time and presented as Pre-Exertional Malaise.

The very same simple reversal of the direction of cause and effect occurs across UK medical and patient perspectives on issues such as fear-avoidance; requirement for social care; sleep disturbance, and social withdrawal.  In each, patients see the negative as an effect of their illness, while UK medicine tends to see it as a cause.

I think a profound and perfect difference of perspective may have been the cause of much misunderstanding and suffering here within both medical and M.E communities.  Resolving this difference would be non-trivial but it is, I think, possible.  If however, British medicine will not seek to moderate its methodological bias, M.E patients will have no choice other than to reject UK mainstream medical research, and make progress towards fair treatment through legal challenge and independent research projects.  Likewise, if M.E patients lose sight of the humanity within their opponents there is a danger that they will seek vengeance as opposed to fair treatment.


@batteredoldbook
00:58 02/11/2016