I have seriously considered M.E for the last decade. I have turned the issue over and over and over in my head, for hours and hours and hours each day.
Throughout this period I have always factored in the idea that some M.E patients aren't M.E patients at all:
They are lying.
M.E is ill-defined, extremely easy to fake. The primary disbenefits of M.E dwarf all other considerations, however, in their absence, that dreaded phrase from psychiatry bobs to the surface again: "Secondary Gain".
There is a benefit to an individual from faking M.E.
The diagnosis, "You're a liar, get out of my surgery", is valid for a percentage of "M.E patients". It is a brilliant diagnosis in these cases, but it is also bold, for it puts the physician in the position of potentially causing untold harm to the patients in their care.
A doctor who applies the diagnosis of "liar" to all of his M.E patients is to be avoided like the plague.
Earlier I wrote about my surprise and depression to find that so many M.E patients don't care to ask questions to determine their true condition. The state of M.E is not simply a physical one, M.E exists within an often hostile social environment. It is a vital life-skill to be able to work out who to trust and who to avoid. But, M.E patients don't come and ask. The absence is remarkable.
You may say that my own personal credibility is shot, that my views are rubbished and I that have been successfully tarred and feathered and driven out of town by those academics who wish to use abuse to control discussion. However, I have been here for a very long time. And, looking back, even well before I lost my audience, very few patients came and asked me about the true picture in M.E.
And it bugs me. Not so much personally any more, I accept that I was left to be bullied, that most of my friends in M.E were no such thing. It bugs me, because I am attempting to improve treatment for M.E patients and I see that patients are resisting:
One gets the strong impression that M.E community dogma must be proven right, even at the expense of patients remaining ill indefinitely.
It is not enough to seek a treatment, said treatment must also prove exercise was harmful and that psychiatrists were hate-mongering frauds.
But wait. That can't make sense. Not even the most ardent M.E activist would remain locked in the slow-motion agony of M.E just to win a point. Surely, the only people who would crush discussion, bias research and hound researchers out of M.E are people who who don't need to find recovery ...because they're not ill in the first place?
And this idea leaves me to reconsider just how many people are lying about having M.E.
I am lucky when I approach this question for I know something as a fact that others, especially doctors, could never have known for sure:
I know of at least one person who has never lied about his M.E.
If you want me to be more specific; my diagnosis is split between CFS and Post Viral Fatigue. I go with latter when describing my medical history. I do this because I am so ashamed and humiliated by any association with M.E and the ruthless abuse I have witnessed and experienced at the hands of M.E patient activists.
I had the classic M.E combo of an atypical response to EBV following a series of upper respiratory tract infections. I had intolerance to heat, light, alcohol and, obviously, mental and physical exertion. My M.E was severe for an extended period during my mid twenties and, more recently, during the period when M.E charities left me to be bullied.
When doctors have told me that I am lying about my illness, in reality all they have done is to tell me that they don't know their job. As, I say, it is a very bold move to accuse patients of lying. There is the potential for catastrophic damage. Hence, I do not approach the matter of large-scale lying in M.E in any way lightly.
When considering this question I am interested in two sets of facts.
On the one side, I know that some of the most well-known M.E activists in the world are happy to lie in public about M.E and conceal reports of harm from patients. The M.E community chooses its leaders. M.E patients clearly do not select for honesty and this is a grave concern.
The concern is brought into sharp relief by the sheer scale of the absence of requests for clarification of critical points of fact and for recovery information. Personal attacks stand in place of rational argument. There is little drive towards truth.
M.E patients' lives are supposed to be at stake, yet many act as if they're engaged in a drunken slanging match in a pub car-park. There is little sense of seriousness and a worrying fading out of reality.
On the other side of the argument we find a high degree of consistency in terms of medical history. We see a shared pool of common experience and most valuable of all, we see genuine insight into the condition and its wider effects.
There are certain observations about M.E that ring true. They've never been made before, but an M.E patient immediately recognises them as valid and worthy, and wise. When I was an advocate for M.E patients on Twitter I used to aim to pump out ten new observations about M.E every day. They are the glue that binds a true community together and, though I deleted my work years ago now, I see that I am not needed. Just today I saw a beautiful, heartbreaking, tweet that told me: This person knows exactly what M.E is all about. This person is not lying.
But you know, I worry that a whole helluva lot of people are lying about having M.E.
M.E is easy and profitable to fake. The M.E patient community is easy to exploit. Patients are immediately seduced by perhaps their most critical lack: Social position. M.E patient charities and activists block reports of abuse. This action alone creates a deliberate and misleading omission within M.E awareness raising efforts. It is funny to receive abuse for years and then read a charity claiming in The Guardian that it didn't happen. And I don't mean funny, hah-hah, I should say it is creepy. It raises my blood pressure, it heightens my senses, it puts me on edge, it warns me:
Not everything in M.E is as it seems; Not by a long way.
