Even now we are presented with a central nervous system black box. Neuroscientists have only managed to work with Parkinson's because of localising pathology. There is nothing in ME/CFS unless Felipe has found it. The decent work was done by psychiatrists, who had an interest in neurotransmitters.
I remember a ground round at UC only a few years back when a cardiologist challenged a neurologist to show his speciality could do science. The neurologist accepted defeat. Even with Alzheimer's it looks as if we have been looking at the wrong thing for ten years. Maye in PD too. And in migraine it looks as if the real problem only started to emerge ten years ago.
I am not so sure. People like Leslie Finlay and Tony Pinching understood the prognosis from seeing hundreds of people in the 1990s. Putting numbers on that does not make so much difference.
There should have been more research but biomedical research is not something you can just go and do and get results. Reading a spectrophotometer does not tell you what hypotheses you should be coming up with. Very few people learn how to get new answers. Very few know how to distinguish a good theory from a bad one - even when all the evidence is laid out. Lots of people here do, but that is presumably because they are drawn to a meeting place where that sort of critique thrives. Ultimately that is down to Mark from the old days and people like Graham and Bob who are no longer here.
If that was so – and I believe it was – Finlay didn’t have the courage to tell his patients.
I was admitted to Finlay’s inpatient unit in Essex in 1999, and I continued to see him for several years thereafter. The CBT wasn’t the awful PACE-type CBT, and the staff were mostly kind, but it wasn’t particularly helpful and it did not help me to prepare for the life of severe disability I have had since. It was much more focussed on the prospect of recovery by making the right adaptations.
I told my parents that if I didn’t get better I was going to make damn sure he knew about it, even if that meant paying to see him privately, which was my only option after he discharged me from his NHS service. I did that for a few years until one day, with no warning or consultation, I received a very short letter telling me that he was discharging me from his private practice.
Several years after that my parents attended a talk in Brighton where he was a speaker. He told the audience that the prognosis for people like me (severe for 6 years when I was admitted) was very poor, and that patients were in no way at fault for their failure to recover. I sincerely wish that he had had the courage to tell me and everybody else that when I was his patient.
He did some helpful things, but I think he was intimidated by Wessely and I think that his inpatient facility in a neurology unit was missed opportunity.
Yeah.
It was and probably still is pretty standard that even when doctors tell more or less the truth or provide something resembling a realistic picture, they'll totally undermine that. Via contradictory statements, water muddying theory stuff, via some introduction of personal favourite pseudoscience. Or some combination of these. Slowly eroding patient confidence.
Invariably or near enough, discordant action and inaction, inappropriate communication toward the patient, and exclusion from their services will follow.
In the case of private care the patient's resources run out and they are left with nothing. Or the physician runs out of patience with a lack of positive response from their patient and communication between the two parties is strained. Or the physician steps up. Assists with care that ought to be available to the patient in the public system, based upon complications or co-morbid conditions that the patient experiences. Assists with professional support in the form of letters and statements around access to housing social care and financial assistance.
In the case of the NHS these services are based upon the recovery model. If nothing else the basis upon which the specialist meets with the patient would be entirely at odds with any other prognosis but one of recovery. Alternatively the basis would be one of abandonment. An acceptance that the prognosis is poor for a great many, matched by the medical professional the physicians agreement to abandon their sick patients to suffering and premature death.
Both of the above options are rather embarrassing for the physician. And absolutely devastating to the patient. Patients are routinely abused and abandoned by family friends and partners, taking their lead from the expert. The medical professional, the physician.
There's been a number competent and caring, scientifically minded physicians in these positions. They've helped patients, on occasion, some more than others. But ultimately through their participation in the principle pathway of non-care and ensured abandonment, leading to exclusion from the rest of society's life sustaining resources, they have left people with what they most referred to as CFS, and sometimes ME, with no option but to push themselves physically and mentally to survive by themselves in a hostile environment or to die.
In other English speaking countries and in many European countries death is provided by the state positively encouraged or enforced via impoverishment.
Whether we like it or not physicians hold the political as well as medical keys to life. Yet they do seem to love to revel in their own powerlessness. Oh the institutions won't let them work well, they would otherwise. Oh the patients are too misinformed, we can't help such people.
It is true institutions aren't going to allow for true care of the patient or the people. But doctors are some of society's most influential workers and they need to stand up and fight.
Military training may help with the trauma of the job but it weakens and constrains their ability to be a a political force for themselves and the people.
As for misinformed patients, it's hard to inform a patient of their true physical condition whilst you're simultaneously telling them to their face manage unmanageable pain or to fuck off and die.
So a sensible solution would be for these poor oppressed physicians who can't help but despise their patients, to free themselves. Say what they would want if resources were no object and fight for this. Make it known that they are on their own side and the patient's side and the people's side, the right for treatment for everyone.
The patients and the public will back the doctors who have political demands and a plan. Then they can call this thing whatever they like and it will be accepted.
Currently the best one can hope for is a physician saying I want to help you but I can't, it is forbidden. And yes you must allow me to refer to your devastating condition as chronic fatigue. Yes we know this makes everything becomes very confusing when you develop anaemia and we also refer to your symptoms of this as chronic fatigue, but too bad. We're the experts on terminology and we rate ourselves with this one. The confusion is beneficial, for us.
It is absolutely correct physicians don't like ME nearly as much. It brings the wrong type of confusion. The fact that the term 'ME ' doesn't interfere with every single consultation where fatigue is mentioned (whether denied or acknowledged), the way 'chronic fatigue' does, seems only to be considered a loss, by these physicians.
Given that barely a single doctors can get through their consultations (or conversations on the subject) without switching up CFS, CF and inevitably settling on chronic fatigue, I don't think that we can presume that an adherence medical to accuracy or educated communication is what they are going for here.
It seems that physicians have been dealing with the cognitive dissonance of perpetrating waste basket diagnostics and the devastation and death brought about by such dead end diagnoses by choosing to distract themselves from the material consequences suffered by patients. Via focus instead upon patient language. Whilst cherry picking in their own commitment to accuracy.
This is taken further.
A claim that those patients looking to survive this process, looking for community, who use community terminology, or keep the title for the condition that they were originally given, or the title used by the doctors and researchers who are willing to engage with them ongoing, are via the use or preference for one term over the doctors own, are there by demonstrating themselves quite mad.
Assumption, and insistence follows, that by merely being mad (or having a lax grasp on terminology or biology) a patient is thereby confirmed not ill at all in a medical sense.
They go further.
Patients are marked unworthy of ordinary respect for their lives and humanity. Instead worthy of social exclusion and ridicule.
This isn't enough though.
This logic has a conclusion.
It is apparently, in these physicians and doctors opinion, a duty their duty to educate the public into this contempt.
Various reasons are given.
These can be summarised as; we punish them publicly and humiliate them as we train each other so, as a way to protect society and institutions from these non-patients, these non-persons.
This leaves patients with a problem.
One that many have attempted to mitigate via careful use of language.
Edit: missing letters.
