Reader I am going to share with you the greatest secret in M.E. It is just between us. In fact I will never need to know whether you've read or accepted it. It is, and will remain, your secret.
Before you can change your behaviour in a manner that may improve your chances of getting well, or your chances of healing others, you need to put your thoughts in order and you need to set your mind free. To this end, consider the following two facts.
Medicine removed my ability to eat. In my 20s a physician decided that I was "quite healthy really" and so my welfare support was removed. I had severe M.E. I was unable to look after myself and unable to earn. I am here today because others looked after me and cared for me, but medicine did not. You can understand therefore that when I discuss the treatment of M.E patients with doctors, in the back of my mind I am always thinking "Well, since the treatment was to remove my food, anything better than that will be an improvement."
You may see from the above why I became an advocate for M.E patients and why did the job well for many years. But this is not the secret I am here to impart. To understand that you, my reader, have also to accept the following statement of fact.
An M.E activist known worldwide worked to conceal the targetted abuse of M.E patients by M.E activists and, further, went on to promote the untruth that it was all just a story. All this while acknowledging the abuse to me via private message. Their action and the actions of many other M.E activists left M.E patients abused and isolated with little or no support network. You can imagine therefore what I think of M.E activism: "Yeah, awareness of the plight of M.E patients should be raised, particularly awareness of the danger of targetted abuse from within the M.E patient community itself".
So the two facts here are simple: I have seen M.E patients being left with nothing to eat by doctors. I have seen M.E patients being left bullied for years by patient activists. These two facts are not a secret and they are not the secret that I am here to uncover within you, reader.
In the excellent television programme Doctor Who there is a species of aliens who are automatically erased from your mind the moment you look away from them. As with all fairytales; the monsters are real. They are fictional warnings about factual aspects of human nature. And so it is unsurprising to to find that the ugly, raw, unpalatable truth is often rejected: I tell the M.E and the medical communities the facts over and over again, but the particular truth that each group cannot stomach is Silently erased.
"It's honest patients vs evil psychiatrists isn't it?". No. This would be a trivial analysis of the problem, one that very conveniently forgets the targetted abuse of M.E patients by M.E patient activists. It is low quality work to point the finger at medicine while there remain M.E charities that deliberately cover up activists' abuse of patients.
And it works the other way around too. People see what they want to see and erase the rest, even professional people.
"M.E patients are aggressive and either lying about being ill or are delusional". Again, this would be an unintelligent analysis of the M.E problem, one that, again, conveniently forgets that M.E patients have received mistreatment (including neglect) from medicine for decades. Physicians have consistently put the risks from "secondary gain" above patients' reports of primary pain. The doctor-patient relationship is not one of dictatorship and responsibility for repairing the damage done lies with doctors just as much as with the patients they seek to heal.
Let me give you a crystal clear a example of the problem:
An M.E patient is incorrectly branded a liar and their social support removed. Is this okay?
M.E activists are immediately put into a terrible quandary for I have not yet said whether the patient was attacked in this manner by medicine or by M.E activists. If it turns out the deed arose from medicine... Well, then the floodgates are opened: It's an outrage. It's shocking. It is yet another example of the disgraceful treatment of M.E patients by "evil", "Nazi", "fraudulent" doctors. Yet, and this is the kicker, if it transpires that the M.E patient was attacked by a leading M.E activist, there's barely a trickle of complaint. Where there would be protest there are, (and I am not making any of this example up), blog posts supporting and excusing and promoting the idea that it is okay to abuse M.E patients.
I don't know whether human beings are ever going to out-grow tribalism. There will probably always be some shade of "Us vs Them" within our collective character. The important issue, however, is how narrowly we define "Us". Within M.E the patient tribe is defined not simply by their shared experience of suffering but also by their shared adherence to dogma and to a widespread hatred for medicine, particularly a group within psychiatry. Failure to comply with beliefs and refusal to join in with the beatings leads to rejection and exile.
It is noble for a human being to choose to sacrifice themselves or a part of themselves for the greater good of their society, however where a group targets and sacrifices others against their will this is not nobility: These are the actions of a cult desperately attempting to protect itself rather than its members.
The example again:
An M.E patient is incorrectly branded a liar and their social support removed. Is this okay?
Medicine doesn't come out of this looking very good either. Though often couched in lofty prose, we find the very same diversions and justifications for misbehaviour from our medical professionals.
To paraphrase one clinical trial's notes for therapists: "M.E patients may have had negative experiences with medical professionals in the past and it is important to listen to these before starting treatment".
No doctor. No, no, no. When you are told, over and over and over again by M.E patients that they are experiencing character attacks from physicians and that, crucially, THEY CANNOT REPORT HARM FROM TREATMENT, then you stop the study, the interaction, or the treatment and you deal with the problem within medicine. You cannot hope to heal M.E patients until you have healed yourselves.
If a 21st Century doctor cannot think of a reason why they should say sorry to every M.E patient they meet, then they do not know enough about M.E to even begin to treat M.E patients.
Do you see? It is very easy to read this text and gloss over all of the bits about medicine, or if you prefer, all of the bits about activism and come out the other end, entirely unchanged, emboldened even. Isn't it awful that M.E patients had their social support removed? Isn't it wicked to publicly call M.E patients liars? Well, yes, yes it is. But, again, I haven't said which group I am challenging with this statement. In your heart you must know by now that I am challenging both groups and in so doing trying to help both.
In reality it is awful to brand M.E patients sick and crazy whether you are a physician or an activist. The strongest position here is to be against all abuse of M.E patients and all abuse of their physicians. But abuse itself is a hot potato. No-one wants to hold onto the idea for long. And most certainly no-one wants to be left holding it when the cooking time is over. If doctors are shown to be hurting their own patients, or conversely, if activists are shown to be bullying and covering up the bullying of M.E patients or doctors to gain political advantage, their respective claims to scientific or social righteousness collapse. What could be more uncaring than to chose to leave M.E patients to suffer alone for years? What could be worse than viciously and endlessly attacking those doctors who've tried to help you?
Do you see? And will you see in five minutes, in a day, in a week, a year? Will your mind allow itself, privately, (shh, just between us), to consider the M.E issue AS A WHOLE? Warts and all. Without this ability, I cannot help you and there is little point in your reading any more of my work here. It will simply enrage you, or leave you cold and unmoved.
The choice to bias and blinker yourself is your own. It is a secret choice, but it has consequences. M.E patients will remain ill while they play-pretend and ignore the abuse of those targetted by M.E activists. Likewise, doctors will remain impotent, powerless to beat M.E, while they cannot or will not accept that mistreatment has occurred and is occurring.
This is the secret, reader. This is the secret thought in your mind. It may even be a secret that you keep from yourself:
Can you see both sides of the problem? Can you fully process what each means, in isolation and in context? Do you understand? Does the knowledge change you? Or have the ideas presented here, the ones that go against the grain, the ones at right angles to your entrenched world-view, have those ideas already been marked for erasure?
Do you see?
TLDR Summary: M.E patients have been left with nothing to eat by doctors. M.E patients have been left bullied and isolated by patient activists. It is hard, but vital, to be able to hold both these ideas in your head at once.
