When you think about it, it is was only natural for physicians and patients to come at the M.E problem from different angles.
M.E patients, often struck down in their prime, are consumed by the pain and crushing fatigue that now follows exertion. Their bodies feel broken. They do not respond how they did before. The working and social lives that patients used to enjoy now wither away in front of their helpless eyes. Of course they are going to walk into their doctor and say: "Exercise makes me ill!"
Likewise, physicians are trained to view exercise as quite literally vital to mental and physical well-being. The human body needs to be kept in motion if it is to be healthy. Anyone sitting alone, inactive, in darkness over long periods of time is going to develop mental and physical illness. No doctor could, in good conscience, prescribe long-term bed rest to their patients. It would be grossly unprofessional. No wonder they say: "Exercise? Exercise makes us well!"
The battlelines are drawn the moment M.E patients and doctors meet for the first time. The patient wants the doctor to accept that exercise is harming them while the doctor wants the patient to start believing the opposite!! The situation quickly escalates. A patient advised to exercise can start to believe that their doctor doesn't know what they're talking about or is being aggressive: "Why would my doctor prescribe the one thing that makes me worse?"
Likewise, the doctor, knows that exercise is vital. They also know that many, many, patients don't do what's good for them in terms of diet, medication, weight, smoking and fitness. Patients often resist correct treatment. Where this behaviour persists the doctor is likely to question whether their M.E patient is telling them the truth, or is in full command of their faculties.
The conflict here is built right into the condition M.E. Doctors and Patients are merely finding themselves playing out the consequences of the paradox at the heart of M.E: A situation where, for whatever reason, exercise now both helps and harms.
Unfortunately, doctors and patients have dealt poorly with this tension and conflict has arisen, conflict that has lasted decades.
For example; back in the day physicians questioned whether I was lying about my illness. This was based on opinion not evidence. I was given the disbenefit rather than the benefit of the doubt. It turns out that many, many, M.E patients walked into their doctor's surgery with a new, highly disabling and and highly distressing disease and walked out with character-abuse in addition. This is awful medicine. It is harmful and it is commonplace. Even the "Pace Trial" a study into the relative merits of treatments and itself highly controversial within activism circles, acknowledges that M.E patients may well have had negative experiences with health professionals.
It is tempting to believe that reports of mistreatment are a matter of historical fact, however, even as late as, say, 2015, patients' reports of the primary symptom of their condition, "Post Exertional Malaise" were being continually mangled and spat back at them: "I get ill after exercise" would become "You are fatigued", "Tired all the time", "Chronically tired", anything to avoid discussing a cause and effect relationship between exercise and illness. It is incredible that patients have had to wait so long simply to express to physicians the problem that they want addressing. It seems that medicine finds it almost impossibly difficult to accept the notion that exercise can ever be a bad thing.
The dance they have led patients in the meantime has wasted a lot of time.
Patients too are not without blame. They come into the doctor's surgery with pre-existing ideas about their illness, often entrenched, they present sheaves of printed material and they demand expertise that simply doesn't exist anywhere in the world right now. Patients' endless search for validation begins to sound like they've made their bed and they plan to lie in it.
And M.E patients attack physicians. Within the wider world, any researcher or physician is but one unwelcome conclusion away from vicious, sustained, personal abuse. The international M.E activism group, ME Action (please avoid) promoted a petition in which 10,000 M.E patients attacked a single physician. I met and spoke to a well-known researcher who, on police advice, has installed panic buttons in his office following the receipt of threats.
It is tempting to view these events as the actions of extremists within the M.E community, but this is not so. I have seen personal abuse promoted at the highest levels of M.E patient activism. I have received threats to my work and have been quite unable to report my own or the experiences of others to the major British and Irish M.E charities or activists. I have seen physicians harassed by patients while they were recovering from both major surgery and COVID19. I have text from a charity founder explaining why I am to be left to be bullied.
M.E patients have clearly brought misery to their doctors.
There is a clear breakdown in the doctor - patient relationship within M.E. What could and should be a healing interaction of mutual benefit all too often becomes the exact opposite, warfare where everyone loses.
This is not to say however, that progress hasn't been made on both sides.
The bulk of doctors found it impossibly difficult to abuse and write-off all their M.E patients. People from all walks of life, of all ages and all levels of health, were all telling the same story. The cruelty and ignorance required for British doctors to tell all of these people that they were lazy or liars simply did not exist within medicine. Thank goodness for that.
Likewise, the bulk of patients are reasonable men and women, and as physicians started to listen, so patients started to trust them again. They revealed their hopes and dreams and experiences and in so doing they demonstrated to physicians that they were telling the truth, that they aimed to get fit, that they knew exercise was helpful and that they simply had this huge roadblock to recovery: Exercise helps but also makes them ill.
Doctors started to work their way down from "Exercise is always helpful" to a new position that validates M.E patients' consistent reports of illness.
Likewise, patients started to work their way up from "Exercise is always harmful" to validate their physician's wisdom and expertise.
The mid point is where things get interesting. At this point treatments that emphasize exercise and treatments that emphasize rest become one and the same. Far away from aggression and warfare, there is an almost Zen-like moment of tranquil enlightenment that both patients and their physicians can share.
Experienced M.E patients and doctors know that patients have to do some exertion to remain mentally and physically fit, but they also know they have to rest to keep crushing M.E symptoms at bay.
Consider a doctor: They advise exercise and in so doing they see their patient gain fitness. However, as time goes it is clear that their charge is suffering. The eyes betray pain, the face is pale and wan, the movements slow and clumsy.
Exercise in an M.E patient doesn't quite work as it does in a healthy person.
Increasing, or even maintaining the exercise level only makes the patient suffer more. At some point a physician with any humanity will call a halt. Thankfully, rest comes to the rescue, it appears to fix any damage, though the process can take some fair amount of time. The physician is, correctly, concerned about this torpor and as soon as possible restarts advice to exert. The doctor proceeds in this manner: Exercise, Rest, Exercise, Rest, Exercise, Rest...
It is ironic. This patient and this doctor are always opposition. When one is recommending rest the other is recommending exercise and vice versa. Yet, from above, in our God's eye view, we can see the truth clearly: They are both simply alternating between rest and exercise. At the mid point there is no difference whatsoever between the seemingly entrenched patient and medical views of M.E.
Ching!
This is the fold in the page. This is the point where physicians can, if they are very very clever, jump over to the patient point of view and truly gain an understanding of their experience and the validity of their coping strategies.
Likewise, this is the point where patients can, if they are super-smart take the mental leap and see that their physicians are not the "EVIL NAZIs" activists would have them believe. They are, in fact, simply coming at M.E from the opposing direction.
M.E is a complicated trap, a bind that forces patients and doctors into opposition. It is up to both sides to recognise this and to put a stop to it. Only working together, like in the The parable of the blind men and the elephant, can doctors and patients see the full and true nature of M.E and then, together, make some progress against it.
