Another good commentary by Dr. John Greensmith:
"Work Phobia and Anxiety Disorder, Not Laziness"
Whenever the physical cause of an illness is not yet known, as is the case with M.E. (Myalgic Encephalomyelitis), [known in the US as CFS] it is often assumed that there is not one to be found and the sequence of steps usually followed is:
1) it doesn't exist;
2) those claiming to suffer from it are lazy malingerers, even though they have had a previously good employment record, or attendance at school and they just need to be "helped" back into work by a carrot or stick approach;
3) it must be a psychiatric illness, even though there is no previous psychiatric history and the recommended treatments are a spell in a psychiatric hospital for the most unfortunate, or some short-term psychotherapy such as Cognitive Behaviour Therapy (CBT), the first of which scars people for life, even makes some end their own life; the latter of unproven lasting benefit, for more than three or four decades.
And, still, step 4 is not considered: that is, we don't yet know the physical cause and ought to be looking for it.
When a physical or neurological cause is eventually discovered (as in the case of MS, for example, which had previously gone through the same phases as M.E. is going through now), the doctors and researchers who had resisted the idea will now say that they were acting on the best evidence available at the time - usually their own and ignoring any other that did not fit their prejudice - and the same process will be repeated for the next generation of patients with an illness not yet understood.
There are perhaps 150,000 M.E sufferers [in the UK], some diagnosed for as long as five decades, praying for researchers to learn from previous mistakes and proceed more expeditiously to step 4, well-designed biomedical research, supported by adequate funding to carry it out.
Dr John H Greensmith
On a related note, Dr. Michael Wilkes writes at http://www.sacbee.com/health/story/342749.html
When we are young, we're taught never to make promises we can't keep. We learn that a promise is something people come to expect and plan around.
But as we grow older, we find ourselves making promises without thinking through the consequences. Sometimes we make a promise when we are under emotional pressure, and sometimes we don't have all the information we need.
We learn that our promises can have a profound impact on a recipient -- people generate expectations and alter actions based on a belief that our promises will be kept.
In medicine, promises are particularly important. In fact, promises are at the core of the doctor-patient relationship.
In this case, the junior doctor promised -- with good intentions -- something that was not possible in our society. Patients, if they are of sound mind, need to be involved in their own health decisions. ... ethics, which require patients to make their own medical decisions.
The family considers the problem a lack of honor and a promise not kept. The doctor blames poor communication and cultural misunderstandings.
Everyone in this case loses. The mother, because she has not been prepared for cancer and is caught off guard. The family loses trust in American doctors. The junior doctor loses the chance to remain involved in the care of a woman she liked, and she loses the chance to demonstrate the devotion she has to her patients and the privilege it is to be a doctor.
* * *
This is the problem ME/CFS patients face: doctors who lose sight of the fact that it is a PRIVILEGE to be a doctor, and allow their own ego and hubris to eclipse the patient's right to make her own medical decisions.
Instead of saying "I don't know" or even "Modern Medical Science doesn't know", they come up with theories that blame the patient, and when the wrong medication doesn't work, they blame the patient for that, too. As a result, a huge percentage of CFS patients have lost faith in Modern Medical Science. The promise to "first, do no harm" has been violated so often that they have no reason to trust any more.
I was promised "I want to help you" and relied on that promise. Yet, when I attempted to make my OWN medical decision, that I did not want to take medications I'd previously been told not to take because of prior adverse reactions, I was inevitably overruled and told to do what I was told. The notion that I might have some valid information was foreign to them; another doctor warned me that the last prescription could have been fatal if I had blindly trusted those doctors to put my health ahead of their egos.
When I asked for the treatment recommended by my former specialist (and other CFS experts), it was unreasonably refused, not because it was dangerous or experimental but because it required the doctor to re-think his position on CFS. As detailed by Dr. Greensmith, someone with a stellar history of employment was wrongly tagged as a malingerer, and a psychiatric history was invented where none existed, in order to justify handing out anti-depressants that specialists and researchers know to be totally useless against CFS. The doctor didn't bother to verify my work habits with my former employer, or my psychiatric history with records maintained by his own medical group; his own "prejudice" (to use Dr. Greensmith's word) clouded his thought process and these falsehoods found their way into my medical records to justify what the facts would not support. When two psych evaluations were sent to him stating that there was NO depression, the symptoms were compatible with physical illness, he ignored those, too.
Like the SSDI judge, that doctor only wanted to see evidence that supported his position, and anything that contradicted him was summarily disregarded. As observed by Dr. Greensmith, they "say that they were acting on the best evidence available ... their own, and ignoring any other that did not fit their prejudice." You can put tons of research materials in front of such people, and they will still insistthat they know better than people who've devoted their lives to researching the disease.
Perhaps in 1984, when the first modern CFS outbreaks occurred, it was plausible that some could argue that CFS is malingering or psychiatric. But in the next few years, numerous OBJECTIVE markers were discovered by doctors treating the patients, who diligently sought a valid reason for the symptoms (as opposed to CDC doctors, who never saw patients and outright refused to when offered the opportunity).
Anyone after 1990 who was still of the opinion that CFS is fakery was clearly oblivious to the facts demonstrated by uncommon blood tests, endocrinology, brain scans, neurological exams, etc. discovered by the researchers.
Yet, in 2000, I was still being tagged as a depressed malingerer by a man who could not get past the sexist notion that divorcees want alimony, not jobs, nor process the notion that I'd been the primary breadwinner throughout the marriage. When presented with information that The Association was recommending cortisol tests, which would be diametrically different with CFS than depression, the request for that test was ignored, making it clear that he didn't want to see proof. His colleagues similarly refused to order tests which would have documented the problems I described; at my last appointment in 2003, they were still ordering only those blood tests which should be negative in CFS, and brushing aside requests for tests which would be positive.
A later specialist, horrified by the documented failure to prescribe pain medication for a patient reporting severe pain, and sleep medication for a patient reporting severe sleep disturbance, asked the rhetorical question "what would it have hurt?" to give me a trial of the medications I told them the experts recommended. The only answer can be, it would have hurt their egos to admit they might be wrong.
The medical community must learn -- repeat after me -- The PATIENT comes first; my ego comes second.
Don't, like the junior doctor described by Dr. Wilkes, make promises you can't keep. The patient understands "I want to help you" to mean that you will do anything possible to get her healthy and back to work, not that your mind isclosed. If you mean "I've already made up my mind and will ignore any evidence that I'm wrong", say so, so that she can find a doctor willing to do the right thing for her, and not just protect his own ego. As he says, I "generated expectations and altered actions" because I believed the promises made to help me; if I hadn't expected that promise to be kept, I would have found another doctor whom I did believe.
The simple phrase "you'd be better off with another doctor" would've been more beneficial to my long-term health than the empty promises I got for years. And fixing my health would've gotten me back to work faster than bullying and cajoling, telling me that I can do a job which I know full well I am physically and cognitively incapable of performing to an employer's satisfaction because I have repeatedly tried and failed to do similar tasks. His prejudice led him to conclude that I hadn't tried, and wouldn't try unless I was bullied to return to work, and to ignore any evidence that I'd already lost one job and been denied dozens of others because I couldn't perform the necessary tasks.
My only mistake was in believing worthless promises from doctors at a place renowned for research who had no intention of doing the research required for open-minded inquiry and active pursuit of a physical reason for my symptoms. They must bear the responsibility of yet another CFS patient now viewing doctors with distrust. I didn't reach this point on my own.