This is a draft of a piece which might be targetted at the medical and academic media calling upon healthcare professionals to understand ME. The proposal is that it would be used alongside descriptive writings about ME to help the reader understand what ME is like and why change is needed. I’m open to comments about the piece and suggestions of specific outlets to target.

What is ME like? Well, that’s a very good question and one which we can answer relatively easily for the benefit of medics and the public alike. But, importantly, why should we explain what ME is like to the medical professions? Why? What’s the point? That’s a really important question, I think.
It’s not for pity, that’s for sure. Not for what psychiatrists call “secondary gain”. There is no secondary gain with this ghastly disease and pity achieves nothing. No, we don’t want pity.
Until recently science has offered very little in the way of insight into ME. There has been a prevailing attitude of “We don’t know how to treat you: I’m sorry, there’s nothing we can do.”
This assumption (which, by the way, is no longer valid) has frequently been tied to another, unspoken, assumption:
“It’s not a very serious disease anyway: if it was serious I’d have heard about it.”
Nothing can be done but nothing really needs to be done. That’s the assumption, the misunderstanding, which has perpetuated the status quo. That’s the bubble which needs to be burst.
Let us suppose that a doctor did undertake to hold a clinic, once a week, for ME patients. What would they learn? The first thing they’d establish, very quickly and unambiguously, is that this is not a trivial disease. It’s a devastating one. Many patients would ask for an online appointment: they are too sick to attend in person. And so the hypothetical clinic has already achieved one thing: it may have done nothing for the patients but it has opened the eyes of the clinician. And that is, by far, the most important single step.
The clinic runs for several months and our unfortunate doctor is, admittedly, unable to do anything meaningful, at least to begin with. Patients come and go and it all looks a bit ineffectual and gloomy. But any doctor worth their salt will soon begin to see trends, similarities, phenomena and symptoms which are familiar: changes in sleep patterns, limited energy, pain, diminished executive function… The list goes on and on and it’s a very long one. And it won’t be too long before our once-gloomy physician decides to try something which helps in another branch of medicine: antihistamines, antivirals, an MRI scan…. Sure, most of these efforts are dead ends, and that’s disappointing, but it’s a lot better than doing nothing. A lot better. And eventually things will emerge which offer some help in some circumstances. The seed of medical science has been planted and has started to sprout.
And then we get to the important argument around risk and benefit. If we argue, from a position of unintended ignorance, that ME is not an especially serious illness then the off-label use of medications isn’t really justified. And since there’s no “on label” treatment available the doctor is stuck. Their new insights from their hitherto gloomy clinic has, however, dramatically altered the balance: given the burden imposed on the patient by such a debilitating disease suddenly the use of experimental approaches is much more justifiable. “Let’s try this and see how it works…” The first leaf of scientific enquiry uncurls under the light of new knowledge.
But without understanding what ME is like none of this can happen.

Stoo Brown, June 2024