Thread by @VladVexler

If you have ME, finding a doctor can be really hard.

Sadly, this is still true in 2021. ME patients joke that the situation hasn't changed much since 1921 or 1521!

I am working on a new relationship with a doctor. Here is a thread with my perspective. 1/16

#pwME

It's a process in time. But, how do I decide if the relationship is workable, or even a success?

My first criteria is to get to a point where common misconceptions about ME no longer recur.

2/16

Yesterday, at the doctor's office, the oft repeated line came up: 'but don't all illnesses have an emotional component?'

Predictably, it came up when I discussed the psychiatric 'take over' of ME, which patients rightly regard as an affront to reality and justice.

3/16

It is of course a true statement on its own: obviously and trivially so.

But as a commentary of the history of ME, it is unacceptable to me. A doctor-patient relationship I partake in needs to get over this hurdle.

4/16

That's to say, as I communicate the history and politics of ME, this conventional retort needs to recede into the rearview mirror.

If I am sure that it won't, I let the relationship go.

If I feel that it will, but that it will take time, I will carry on bridging.

5/16

With my personality, I know the danger is more that I take over the conversation rather than go passive.

I compensate for that and slow down. My hope is, after all, to persuade the doctor and not to silence them.

6/16

And - this is such an important truth - being forceful works so much better once a degree of intimacy has been established.

In this particular case, I asked myself, does this doctor think that ME is physical or bio-psycho-social? I was confident the answer was 'physical'.

7/16

Given that, I decided not to push back.

I smiled with my eyes and said: 'yes, it's true of all illnesses. Emotions matter so much'. (Insert your own translation).

Then I added that the ME controversy wasn't about this.

I was OK with that. Not happy, but OK.
8/16

So, this is one thing I aim to establish - that ME is a physical illness like other physical illnesses.

The second thing I aim to establish is what I call 'conceptualising ME'.

What do I mean by this? 9/16

I mean that with any symptom or health problem, the doctor is able to ask: is this part of the mechanism of ME or not?

What's important here is the question, not the answer.

Let's take an example. 10/16

Imagine a patient complains of a chest pain. A doctor who conceptualises ME will be able to ask - should I think of the chest pain as connected with ME, or should I think of it as distinct? 11/16

If the doc is unable to conceptualise ME, they will approach the chest pain as though an otherwise healthy patient came in with the same complaint. 12/16

Failure to conceptualise in this way produces two problems.

The symptom will only be understood if it happens to be distinct from ME - if it is not distinct, it won't be understood at all. 13/16

The second problem is that the patient will be burdened with the weight of conceptualising the problem themselves.

This is not OK. Ethically, the doctor needs to hold this for the patient. 14/16

And - this is really important - one way for the doctor to hold it is to say: I have no idea if this is to do with ME or not. That, already, goes a long way.

So, this is my second expectation of the doc-patient relationship. 15/x

Let me end by saying that the patient needs to negotiate all of this - and so much more - while feeling unwell and inevitably giving the appearance of being a lot better than they really are.

Thank you for reading!

16/16