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Resistance to behavioural interventions.

Prejudice is so very strong in within the M.E community.  I don't have a lab or cool stuff to play with, so my attempt to help M.E patients is going to have a behavioural bias. So what?

Just because people suggest behaviour changes, it doesn't mean that they blame M.E patients for being ill.

There is no perfect behavioural procedure for removing yourself from M.E right now, so no-one can be held accountable for failing to follow it!! 

In my experience blame in M.E stems from simple cruelty and perhaps the desire to push broad social problems back onto the individual.  Suggestions for behavioural changes come from a very different place.  In my view they stem from a desire to improve M.E patients' situation.  

Take "Pacing" for example.

Pacing is a behavioural system for managing M.E.  It has been widely adopted and praised.

It is strange to think of pacing as a behavioural intervention, but that's exactly what it is.  Pacing encourages behaviour change, the moderation of mental and physical exertion, the maintenance of limits on energy expenditure throughout the day.  These things are just as much a behavioural approach as Graded Exercise Therapy.

In fact; The importance of behaviour in M.E is built right into patient-centric definition of the condition.  Here we find that the primary symptom of M.E is considered to be Post Exertional Malaise.

When you exert ~ you get ill.  IE:

Your Behaviour matters.  

Through the idea of PEM, M.E patients already accept and know that their behaviour has a radical effect on their physiology.  But why can't it have a positive effect also?

What's concerning here is bias. I remember the founder of yet another M.E charity telling me during our 7 hour meeting:

"I tell doctors, you can't make it better, but you can make it worse!!"

This seems more than a little one sided, for those physicians who promote exercise are doing so, because the ability to exercise is recovery when it comes to M.E.

There are doctors who promote rest, pacing, support groups, and sympathy as a response to M.E, however, each of these behavioural choices have also been linked with a potential downside, a negative effect on health, (Eg: torpor, acceptance, extremism, secondary gain).

Overall; I don't even think M.E patients have a problem with behavioural treatments for M.E per se.  I think that's a red herring.  I think the truth here is simpler:

M.E patients have a problem with exercise.

Unfortunately any recovery or improvement from M.E is going to open the door to exercise and therefore make sufferers liable to receive abuse from M.E activists who are dead-set against it.

The same is true for researchers who suggest exercise as a part of behaviour change. The resistance towards exercise is magnified into a broader rejection of all but pure biomedical intervention and often crosses the line over into personal abuse.

Rejecting behaviourism within M.E removes a vital means of understanding exactly what M.E is.

M.E patient behaviour is like water: It takes the shape of, (and therefore reveals the nature of) its containing vessel, in this case M.E.

When we deny, dismiss or invalidate patient behaviour we lose sight of the nature of M.E and are less able to respond to it.

I refuse to dismiss patient behavioural adaptations to M.E as delusional, misguided, or self-perpetuating.  I think they tell us a huge amount about the condition.  Equally, however, I refuse to reject medicine's constant push towards necessary exercise.  Free exertion, without payback is, and must always be, a central aim in recovery.

Though the issue is muddied and confused by biomedical zealotry, the importance of behaviour and behaviour change is already accepted by both M.E patients and those who attempt to treat them. Exercise, however, will remain a contentious issue within M.E for some time.