This is a happy blog and I am a happy man. You wouldn't necessarily know it at this point because I have to talk about a lot of really very awful things.
M.E is awful. It really is. It is a disease that whacks you around the head every time you work, every time you try: a condition that smothers your life.
And, you know, the social treatment of M.E patients is awful too. In the depths of illness I considered the stigma, abuse and neglect that M.E brought to me to be exactly as bad as the crushing steamroller of the M.E symptoms themselves. And M.E activism is awful too. I know, a lot of patients haven't worked this out yet. They should ask more questions of those who stand to represent them.
So you see; I know there is a whole lot of misery and sadness and awfulness that I relate on this blog. But I have to show people what M.E is truly like.
Though this blog is currently mired within sadness it knows where it is heading...
This blog is about what I learned while I recovered from M.E
I present terribly sad glimpses and vignettes but only in order to re-direct patients and doctors towards the road to recovery.
Recovery is brilliant. Getting out of the house after M.E is like a psychedelic trip. The colours are so vibrant. The world so endlessly fascinating. Of course I had to take 4,000 photographs and of course I have to share them here with you. M.E patients consistently tell me that they love the photographs. They love the glimpse into the world that I now inhabit. It is very generous of them to be so kind, for I know that it is so hard to watch others living life while your own energy ebbs away.
Recovery is brilliant. I've walked almost 3 million steps in the last 6 months. No PEM. I am able to regain fitness. The virtuous circle of exercise and increased fitness has been restored within me. My muscles grow strong. My body has successfully just healed two broken arms with only a minor dent in my daily mileage.
But in recent years recovery has become a dirty word in M.E. In the absence of a biomedical magic bullet recovery stories strongly suggest that behaviour choices matter and this is then processed as an attempt to place blame: The idea that it's your fault that you are ill.
A behavioural key to extracting all patients out of M.E has not yet been developed, so patient-blaming cannot be justified.
I believe M.E patients and doctors should patch up their differences, come back together and work on the problem of M.E. The war serves no-one. I look at it the current situation like this:
I think that M.E patients and their physicians' common aim to climb over the prison wall of M.E is thwarted by their refusal to work together.
In another article I will discuss how these ladders are not a lofty analogy, the rungs set out are actual therapies and procedures. Yeah, I got the position of the top and bottom three rungs slightly out, but it's not a biggie. You get the idea I am sure.
I hope you can feel my sadness. The diagram affords the idea of strapping the two ladders together and making your escape. And this is what I did. This is how I recovered to the point that I am training for the London Marathon.
To be stuck in M.E is one thing, but to be stuck here due to a dumb, endless, war between doctors and patients is quite another. To me it was unacceptable, but for others, sadly it was not.
As time has gone on a double tragedy has developed. M.E advocates and activists found problems within medicine's route out of M.E. The science did not appear to stack up. And so activists took issue with medicine and this happened:
It is fair to record that medicine did appear, to M.E patients, to be attacking their ladder. The "Pace Trial", a controversial study into the relative merits of behavioural interventions in M.E, found no evidence to support pacing, acceptance and rest, the traditional M.E patient responses to their condition (the approaches that the lower rungs of the patients' ladder represent). And I think it is fair to say that medicine was hostile to the patient view and that this is reflected in historical funding disparity and bias within information hand outs.
However this predictive text isn't about the past. It's about making an awful prediction for the future. What an awful thing to have to do. I'd do better sitting in the last rays of sunshine.
Right. Okay, I've done that. Here's the prediction. I am sorry to be the bearer of bad news.
M.E patient activists will destroy *both* ladders out of M.E.
This process has already started. Acceptance of the disease is now changing to denial and the stripping away of M.E patients' diagnoses. If you get better, you never had M.E.
The rung representing "Rest" is being trashed - M.E patients are increasingly expected to stand out in the cold and protest their national health authorities, to serve the cause of activism on social media by attacking dissent. and to devote their meagre energy budget and funds towards the fight for biomedical research.
Pacing, the management system designed by advocates to help M.E patients avoid extreme symptoms is attacked on the basis that it doesn't and cannot cure the disease.
Even the traditional primary symptom of M.E, Post Exertional Malaise has been attacked.
Malaise, though a perfectly correct description, is too subjective a term for biomedical zealots. And worse, episodes of fatigue after exercise have been smudged together to create the idea of a M.E being a generalized fatigue - the very thing that M.E patient advocates fought so hard to prevent medicine from doing!
There is a point where the intelligent pursuit of aims becomes intelligently self-defeating. While M.E activists publicly attack M.E patients they model how to mistreat M.E patients to the whole world. They generate social stigma. When they round on journalists, they disseminate stigma far and wide.
While M.E patient activists deny hope of recovery, so they lock patients into a belief system that paints M.E as incurable, progressive and without hope. These ideas serve the agenda of biomedical activism but they do untold harm to those M.E patients who are exposed to them.
Recovery stores are attacked by M.E activists.
The top rung of the patient ladder is the patient aim. It is the idea that a patient may be able to escape the misery of M.E, if only one keeps on trying. This aim is smashed to pieces as M.E activists drive a wedge between M.E patients and their physicians.
M.E activists misdirect community ire onto useful scapegoats in medicine. Such a witch-hunt helps no-one, but the witch-finders.
It's a helluva prediction. But as I tried to explain to Mr Kindlon of the Irish M.E association many years ago now: M.E patients are liable to become the very things they set out to challenge: biased, abusive, unscientific and neglectful.
Remember:
You are being shown the future, not to make you miserable, but to enable you to avoid it.
As the future fictional freedom fighters say:
"No fate but what we make".
Good luck.
