Isn't clinical observation just an informal version of a clinical trial (a clinical trial which may be questionnaire based)?
No, they are not the same. Many docs observe patients and then publish case studies, like the one attached. Two of my doctors saw this case study and gave it to me and said they felt it might be helpful in my case.
You say that treatment efficacy questionnaires are ludicrous,
I don't believe I said questionnaires are ludicrous. I just don't find them effective at providing actionable information.
Look at the 2 notable patients who had effective spinal surgeries - do we all run off and do that too? I'm not sure that treatment would be equally effective for all of us, do you? (Though, as a patient, I asked my doctor of PT to evaluate me for the problems described by the other patients, to find its not a fit for me.)
I just find that the scale you repeatedly trot out and judge treatments one by one against to not be very useful.
An overall disease scoring system doesn't make much sense, when ME/CFS us such a heterogeneous phenomenon at present and the impact of categories of symptoms on functionality, quality of life, and ability to work, think, talk, or exercise varies so widely. You only seem to value a particular treatment if by itself, unrelated to any other treatment or variable or preexisting condition or genetic or environmental factor, it moves a significant percentage of the population of ME/CFS patients up one notch on this rather arbitrary scale.
As a patient, my goal is to improve my function and quality of life. There is NO single treatment that has moved me anywhere near one notch on your 4 item scale, and its a rare phenomenon for others.
What has worked is looking at the body as a system of interrelated systems with genetic predispositions and environmental influences and carefully selecting groups of treatments that improve the function of each system, how they relate with other systems and work synergistically to reduce symptims and improve overall function and quality of life.
In the world you describe, its something like "what made this student get from early education to A levels to an Oxford degree? Was it learning the alphabet, learning the history of the Boer War, learning to divide fractions, or to learn Latin?"
Or was it the synergistic components of a thoughtfully designed program?
but clinical observation is in essence the same thing, but just not written down on paper. The doctor observes what works in his patients, and remember it. Though clinical observation may be less accurate, as it relies on the doctor's memory, which may be a selective memory, ie, he may remember the successes more than the failures.
Maybe things are done differently in the UK, but here in the US, doctors are expected to keep records of patient symptoms, patient labs, hralth history, patient treatments and patient progress. Depending on the doctor's employer, business relationships, need to be paid, and personal goals, how this documentation is created and whether it is kept private or made public varies widely.
Much as I would like to read it, long documents like that are beyond my cognitive capabilities. Not so much because of brain fog, but due to the brain damage I sustained from a viral brain infection in 2005, which affected my reading skills (by causing severe ADHD). I used to read one book a week, but since the brain infection have not read a single book. Brain fog makes things worse, but it's the ADHD which is the main issue.
Given the copious reading material you provide to all of us, and the questions you are asking me which are covered by experts in the paper I shared, this seems somewhat disingenuous. It's an easy to read paper, divided into 6 chapters, covering 94 pages.
I truly believe that if you can be generating so many questions, providing so many references of your own that you expect us all to read every page of, that you might be able to tackle a 94 page book, over a reasonsble amount of time, even if you could only absorb it a page or even a paragraph at a time. The reading level is much simpler than the voluminous reading you have mastered enough to provide to us. It might be quite helpful to you and lead you down some new avenues.
I've tried many things to try repair the brain. The only thing that seems to have helped with repair is daily breathing oxygen from an oxygen concentrator. That seems to have improved the ADHD in a permanently way, though only to a certain degree. I'd like to try HBOT, but last time I enquired at my local multiple sclerosis HBOT clinic, which does very cheap HBOT at £25 per session, they told me they could not accept ME/CFS patients, only MS patients.
Functional Medicine provides a number of helpful tools which can greatly and positively impact brain function.
I have had my own cognitive issues, and immediate family members with stroke, Parkinson's, ADHD, Aspergers, and bipolar2, and have seen the limits of conventional psychiatry and neurology after visiting 23 psychiatrists and 11 neurologists with family members or on my own, and witnessing the effects and side effects of numerous brain-altering drugs.
It was at the point of seeing the dangers of psychiatry and psychiatric and neurologic drugs that I first learned about functional medicine and about effective testing patients to identify and treat biochemical imbalances through coordinated supplement plans, selective use of pharmaceuticals, and additional and effective treatments like HBOT, PEMF, cranial sacral therapy, mindfulness, deep brain stimulation to heal the brain.
This is a long way from what I call "cookbook medicine" where doctors match symptoms to ICD10 code and then to a pill, and send patients on their way. It is overly optimistic to think that for a disease as heterogeneous snd complex as ME/CFS that one intervention will make someone one giant step better. At best, if it works, someone got really lucky.
But, having seen the wide variety of research findings showing abnormalities across many complex organ systems, it seems that at best, it will take multiple synergistic interventions to gain traction.
Of course, I'd be as excited as anyone if someone found a magic pill tomorrow.
But right now, reading all the literature, seeing what's working in case studies or by anecdote and making educated guesses based on adequate laboratoryand other tests, symptoms and unique health histories seems to offer the most promise.