I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). In severe cases, the illness shuts down people’s lives almost entirely, causing an extreme loss of energy and a wide range of physical and cognitive symptoms that can prevent patients from working, socialising and, sometimes, even moving or eating. Yet these people have been more or less airbrushed from our minds… More here.

It’s good to see an article like this written in a publication as influential as The Guardian today.

It’s a big problem, and it’s one that’s only getting worse as each new person starts to suffer from this awful illness.

I doubt it will make much difference personally because we’ve seen articles appear before, we’ve seen protests, demonstrations, government hearings, etc. And still to this day, for example, in the UK, roughly 5 million pounds is dedicated to ME research. I think it’s something silly like pounds per sufferer. And it pales into insignificance in comparison to other diseases, many of which will affect a person’s life much less.

I’m finding this now. I’ve been fully diagnosed by my neurologist, my GP and the ME specialist team. And all that’s really available to me is a couple of video calls to join, some leaflets with advice on pacing and a waiting list for what is described as treatment.

The problem is, what treatment really is there besides doing as little as possible and hoping for the best?

Recently I’ve started to develop sensory issues, particularly with sound, but also with light. And it’s come from nowhere because I’ve been doing everything right and I’ve been increasing my efforts to relax my mind and my body as much as possible through meditation and certain techniques.

I’ve done everything I’ve been told to do and I’m doing as little as I can, but the problem with ME is that for many people it will either stabilise and you will stay that way potentially forever, it will gradually get worse, or suddenly one day you just are a lot sicker than you were the day before and you stay that way for some time. I believe only 5% of people get a full recovery and that for the other 95%, it is something that stays with you forever.

Yet the gaslighting continues. The lack of treatment continues.

And what concerns me a lot is that when you have an organisation as large as the NHS, with a variety of ME specialist teams around the country, it feels to me like that’s enough for some people to tick a box and to say, yes, we recognise ME, yes, we deal with ME.

The problem is there’s nothing behind that, absolutely nothing at all, because they can’t offer an effective, workable treatment that will improve a sufferer’s life.

For most illnesses, you can take medication or you can have rehab or physiotherapy, whatever you need, and you will improve. The problem with ME is the lack of research; they’re guessing their solutions.

There is the added problem that in some centres they are still using outdated methods from decades ago that are known to make sufferers even sicker. But that’s by the by.

We know there’s an issue with some doctors, particularly more senior ones, not believing in ME because they can’t see it on a test result. So all the medical intelligence in the world doesn’t necessarily equate to being less ignorant.

But it worries me that we’re in this place where you have multiple ME teams around the country not really able to help any of the patients.

You have hundreds of thousands of people, the majority of whom are not working at all, and the ones left working are almost certainly part-time, like I am currently. And then how many of those people need assistance from the state? So it must be costing billions of pounds each year.

But it feels like there’s a concern that if you acknowledge it properly and if you try to do something about it, it’s as though the floodgates will open and everyone will see the true horror of how little our governments and our medical organisations really care.

It’s just too difficult a problem for them to want to deal with, and it’s almost as if they’ve given up.

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