A biomedical researcher starts to look at M.E. It's classified by the W.H.O as a disorder of the nervous system (G.93.3). He sees that M.E often follows on from viral infection (eg EBV) and understands the issue immediately: The patient becomes ill after mental or physical exertion.
Our researcher then talks to other biomed researchers who agree. It seems insane, perverse, cruel even to attempt to treat patients who report illness after exercise with exercise. They conclude that the psychiatric researchers who've been doing just this don't know what they're talking about.
They then make the bold claim that if graded exercise helps a patient improve then said patient never had M.E. This claim is pure symptom-denial. It would mean that every M.E patient who reports Post Exertional Malaise, but who then goes on to report recovery would have their diagnosis removed and years or even decades of experience of P.E.M invalidated.
In truth; Gradual exercise increase is going to be a part of every single recovery from M.E. Research into how to restart exercise is always going to be relevant and useful.
Meanwhile a psychiatrist has already had his own revelatory experience : He notices a feedback loop. "Of course!", he thinks: M.E is is behaviourally re-enforced. Patients are unfit and experience symptoms as a result, but in response they choose to rest. This makes them increasingly unfit and this increases their symptoms!
His colleagues agree as this is a known class of problem. Once the cycle is broken, in this case by exercise, "the chronic disease" disappears, freeing the patient. M.E patients just have to suspend their belief in the permanence of M.E for long enough to be freed from it. They conclude that a combination therapy of CBT to challenge illness beliefs and Graded Exercise therapy to deal with de-conditioning resulting from inactivity will treat M.E.
They experience two problems. Firstly, patients report harm from exercise therapies. It is a consistent theme. Secondly, the illness beliefs that sustain the postulated feedback loop are, over the course of two decades radically strengthened by the rise of patient advocacy and then the dominance of militant patient activism.
Highly aversive symptoms in response to exercise, graded or not, are a hallmark symptom of M.E. Breaking this effect is a non-trivial task - for both patients and their physicians.
We can see there are two major positions here and the problem is about to get more complicated.
The biomed researchers find objective evidence to support their case that M.E is a biomedical problem (Eg: two-day cardiopulmonary exercise test, CPET). Not to be so easily outdone; the psychiatrists (correctly) point out that behaviour can and does cause radical biomedical changes so the existence of such biomedical abnormalities does not settle the question one way or the other. And, anyway, they've created a study, "The Pace Trial", that settles the matter!
A deep and bitter conflict develops within M.E research over the simple direction of cause and effect within Myalgic Encephalomyelitis:
Does M.E cause broken, inverted, sleep, or does poor sleep bring on the symptoms of M.E?
Does M.E cause low activity, or does low activity cause M.E?
Does pain limit movement, or does lack of movement bring on pain?
Etc. Etc.
At this point a biomed researcher takes a look at the "Pace Trial" and goes "Hold on,
wait a moment!!". He's probably independently noticed the key query about this trial that I myself sent to Dr
Tuller some years ago: Patients were repeatedly told conclusions during the trial. To a biomedical researcher this is the equivalent of a doctor on a drug trial winking to a patient and whispering ("You're lucky! You're getting the real medicine! *Double thumbs up*), it's unacceptable.
At this point the biomed side loses it. To some of them, Pace seems either flawed or
fraud, and they conclude that M.E patients need to rest while proper biomedical research is done. The questions over the running of "Pace" are used to write-off all the work that has been done thus far by psychiatric researchers on CBT (Cognitive challenge to illness beliefs) and GET, Graded Exercise Therapy, (Now more correctly GAT, Graded Activity Therapy).
Biomed then go further, much further. Understanding and acceptance of the biomedical point of view is put forward as proof of intelligence: ("We know it’s a molecular disease, people who say that’s it’s not are a fool and they are totally ignoring reality, you can call them a fool you have my permission.” Ron W Davis, OMF 2017). No matter how bad you may believe the "The Pace Trial" and CBT/GET to be, at least we had the freedom to debate them without suffering personal attacks. There can be no bigger scandal in M.E than academics publicly endorsing or permitting attacks on their research rivals and those M.E patients who agree with them.
Psychiatric researchers were unmoved and unabashed by the hoo-hah and hokum surrounding the debate. They had already pointed out that all conditions should be approached from the perspectives of both mind and body. The reductionism involved in treating complex, systemic, illnesses as purely molecular diseases does seem quite unjustifiable. This may be why the biomedical position in M.E is often supported by personal abuse rather than argument.
Abuse is a way to win an argument. It's just not a scientific way to win an argument.
The Pace trial remains a study that attempted to compare the effects (and the safety) of three behavioural interventions in M.E. After the exclusion of the objective Actiwatch data it draws conclusions from subjective measures. Whatever you think of its methodology, analysis or re-analysis, the Pace Trial contains a very good description of CBT/GET as an intervention for M.E. As I do not reject the utility of such treatment for M.E patients, I refer to The Pace Trial notes often.
So. Which tribe is right? Is M.E a physical or a mental problem?
The way I look at this question is via my family's experience with another condition, asthma. When my child has an asthma attack (thankfully very rarely these days), I tell them to do what I did, my father did, and my grandfather did, (it's the same kind of approach recommended by the UK NHS):
Sit down.
Calm down.
And take your Salbutamol.
My children don't know much about what causes asthma but they know that these actions work. It is great, it is amazing in fact, to be able to switch-off a massive asthma attack with just a few puffs of a biomedical agent. But then; the other treatments really help too.
When one is unable to breathe the last thing you want is a doctor hovering over you going "YOU CAN'T BREATHE!! YOU COULD DIE!!!". Stress is a trigger for asthma. A calm and soothing approach is appropriate and this is true of self-care also. If you get stressed out your Heart Rate climbs and you demand more oxygen from a system that's already struggling. This panics you further. See? A genuine psychological feedback loop, (just like the psychiatrists talk about), the knowledge of which helps me TO NOT DIE from an asthma attack.
The instruction to "Sit down" is an interesting one, for it's a pure behavioural response. Asthma is very often triggered by cold air, wind or our breathing (eg: while running or laughing). Sitting down and sitting still removes theses triggers without interfering with our ability to breath too much. It's a behaviour that changes our biochemistry and our objective bodily response.
"Sit down" and "Calm down" are of most help in the absence of a SABA like Salbutamol (Albuterol), however in my family's experience, they assist in every case, in every attack.
An asthma attack is a crisis, it is literally life-threatening, and our approach is a three pronged affair: Behavioural, Psychological and Biomedical.
Imagine if the purveyors of Salbutamol wouldn't talk to the behaviourists?! Imagine if psychiatrists refused to prescribe a SABA?! Imagine if the psychological triggers for asthma were considered "junk science" by biomedical proponents and researchers were targetted for abuse?! Imagine if asthmatics were told to pick a side!! It would be ridiculous, absolutely ridiculous.
I'd think that this was all very bad science indeed. In fact I'd walk quietly away from it and my children and I would go on using all three treatments to deal with our asthma.
You see, the philosophical question "Is asthma a physical or psychosomatic condition?" is far less useful to patients than the more basic and practical question: "What helps to make my asthma go away?!"
And so it is with M.E. What helps? Are there behaviours that help? Are there useful psychological coping strategies or treatment strategies? Are there drugs that help?
Over the course of 35 years I did find some little things that help. Eg: I found that by waking up 3 hours early and taking paracetamol (Tylenol) helped prevent pain from waking me fully up far too early each morning. The additional sleep made me feel so much better that over time I didn't need any medication. The fact that I had found some measure of control in my life with M.E made me feel happier. As did grieving for my previous active life and my career in medicine. Avoiding stress helped too.
I had much less success (ie, I fell on my ass) when I tried to use an anti-histamine based sleeping aid (Diphenhydramine) in order to regulate and deepen my sleep. And over time I found that my own behaviour could turn a day's illness into a month of miserable bottomless fatigue. Worse, there were certain psychological states that were so awful that they dwarfed the physical M.E symptoms entirely. Eg: When you have a stream of vicious, hateful, abuse directed towards you from activists, the mental state engendered needs to be addressed as a priority. It is dangerous.
An M.E patient should should add every treatment that they can to their personal armoury.
The above includes any and every behavioural, psychological or biomedical approach that works for them at any particular time. In future articles I will for example suggest when and where the use of CBT, Graded Activity Therapy, pacing, exercise and rest can help M.E to recover their function.
The war between researchers is a symptom of science collapsing within M.E.
Patients need to stand well back from it. They will need to protect themselves from it and from the extreme biases thrown out from it. It is not currently safe to discuss exercise, illness belief and recovery from M.E in public.
Biomedical, behavioural or psychological ideological warfare should be set aside and M.E patients should use all available avenues to corner and reduce their symptoms and recover their function.
The real issue in M.E is the fact that coping strategies are almost always at odds with treatment strategies.
An M.E patient has to make an impossible choice: Do they live with ever increasing symptoms while trying to gain fitness? Or do they try to live without symptoms but also without exertion?
"As long as I don't try to do anything, I'm not too disabled."
The burden of this dilemma is best shared between patients and doctors. The war is best left far behind.
"When two tribes go to war, a point is all you can score."
~ Frankie Goes to Hollywood, 1984
