Patients who "get it"
@Esther12: One of the reasons I come to this forum is because this is a community of patients who "get it". With some exceptions, and even though we don't always see eye to eye on the evolving science (and that is stimulating), this is a community of patients who are fighting for recognition, medical care, deeper scientfic understanding, and justice. I am astonished how many threads there are that discuss bizarre symptoms that I have too. There is so much to learn about ME/CFS, and connecting the myriad physiological dots of course, is the essence of understanding this disease. This is a fascinating, supremely complex multi-system disease that is not only beyond the competencies of those in the psycholobby, but also beyond those of many medical doctors too. To be fair to the psycholobby, it is the combination of the medical community's abandonment of ME/CFS (read "cop-out" in the face of complexity), combined with the raptor-like attention of the psycholobby, that has got us in this mess, where most of us are undiagnosed, much less receiving immunological treatment.
A complex multi-system disease looking for capable hands
And so I'm always fascinated by medical shows that capture the journey of patients with rare or unrecognized diseases - that finally fall into capable hands. These are typically characterized by bizarre, multi-system manifestations - like those in ME/CFS. The hallmark of these "eureka" medical moments are typified by physicans with intellectual curiosity and the humility to recognize that they don't know everything. As Jerome Groopman wrote in his classic book, How Doctors Think
"If you listen to the patient, he is telling you the diagnosis."
The psycholobby's blunt instrument
Contrast this with the reality that the psycholobby encourages more and more dilute definitions of ME/CF, and who apply a similarly blunt instrument to treatment("CBT/GET for all, they cry!). This merely confirms for me that many of their members (not all, I would add - just look at Dr Ellie Stein) are using a very blunt intellectual instrument indeed. And the trend is downward, not upward (just witness the BMJ's last oeuvre). (To see just HOW blunt their instrument, read the thread on the British Medical Journal's so-called XMRV study in ME/CFS, which used 20-year old blood: http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research
The last thing we need
The last thing that seriously ill ME/CFS patients need is someone to plant the seed of doubt that this complex neuro-immune disease is all their fault; that the remitting/relapsing nature of this disease proves we're neurotic. This is easy to do in the early stages - believe me, I kept pushing myself to get more fit, healthier. You name it. And I crashed even harder, and very likely did irreparable cardiac, neurological, and immunological harm to myself. Why should a patient for example with RNase-L abnormalities - in other words, who clearly has an abnormal antiviral pathway - WHY should they explore the psychogenic causes of their being unable to fight a biopsy-confirmed persistent viral infection? Other of course, than to learn to cope with a chronic illness - as patients with other chronic diagnoses do.
Support to cope with incompetence
In discussion with other ME/CFS patients, frankly the best support they've gotten from a psychologist was the encouragement to PUSH for a diagnosis - rather than to blame the disease on themselves (i.e. engage in the kind of "dialogue" you're so humorously recommending):
"You've got so much going for you. You WANT your life back.
It just doesn't fit. This isn't depression. ADVOCATE to get to the bottom of this!"
And so, many patients here receive help from the psychological/psychiatric profession to cope with the medical system's incompetence in dealing with this physical illness. Iatrogenic despair and grieving, you might call it.
Allow me to qualify this: discuss CBT as a coping strategy, while the big boys (i.e. molecular biologists, retrovirologists, hematologists, oncologists, cardiologists, exercise physiologists, etc) do their work to treat this biological illness? Sure. Discuss GET as a pick-me-up after, say, all chance of exercise-induced cytokine storms and aberrant auto-immune response etc. has been eliminated with antiretrovirals, immunomodulators, and targeted antiviral therapy for opportunistic infections? Sure. But why "discuss" CBT/GET with personalities who have no understanding of the scope of ME/CFS science, and who at best are able to deliver a tired infomercial on somatization?When thoughtless comments go bad
Along comes a post like this that in my eyes shows a stunning lack empathy. That you are so apparently blithe about stirring up this hornet's nest perhaps underscores my point about the psycholobby and Narcissistic Personality Disorder. If we were indeed to encounter a member of the psycholobby here (which would surprise me no end).
I understand why some people would be concerned by the idea of encouraging this sort of discussion, but if you really want to avoid reading it, you could just not do so.
On the contrary, you show little understanding of why we are so deeply concerned for our fellow patients. I and many others seek these types of posts so we can add a voice of reason. And so we can stand up for other patients, to ill to post for themselves.
I'm not worried about being brainwashed over the internet (although for a while there, Islamic Jihad was looking mighty tempting).
You give the psycholobby too much credit if you believe they can brainwash us. But they most certainly can #$%!@ with our minds. Frankly, your cavalier post reminds me of an indifferent child, stirring an ants nest with a burning stick.
There have been numerous examples of proponents of the psychological model misrepresenting the concerns of patients in order to try to make them seem absurd. Largely, they get away with it because they're respected and we're not.
Esther12, while it is refreshing to see someone take the injustice in the ME community in such a lighthearted manner, you are perhaps gravely underestimating the power of this community. In just a few short months this forum has exploded, and continues to grow. Patients are not sitting back, and are fighting back not just with emotion. You would be wrong if you thought there were a question that,
maybe we'd be able to restrain ourselves sufficiently and present ourself in a clear and cogent manner
Your dismissal of forum members is palpable, as is your indifference to genuinely upsetting seriously ill patients.
To be honest, I don't think a thread like this could make things any worse: those looking for an excuse to dismiss us all as unreasonable miltants fighting to pretend we're ill already have their excuses. I'd have thought that having a discussion on a forum like this would be far better for us in public perception terms than having the psychologisers able to present their own representations of our views as matters of fact.
I'll tell you what's better for public perception of the ME/CFS community. It's the intelligent and heartfelt posts on this forum - with full recognition of feeling goaded by someone who is indifferent to the pain they cause. It is the intellectual eviscerations of a medieval and unscientific treatment model that pushes exercise and mental self-flagellation onto a population of patients with neuro-immune disease and possibly the next AIDS. It is the exposure of an incestuous old-boy's club who peer-review each other's unscientific missives - and have done so for decades. And it is the exposure of misrepresentation of not only ME/CFS cohorts, but ME/CFS patient interests - at the highest levels of government (just read my post on the BMJ).
This isn't paranoia. It's measured, cold, hard reason.
Very sexy biomedical science on ME/CFS.
And it's coming to a neighborhood near you.