Sorry, Jeanette's blog post about Walitt was an attack. What do you call this?
"Walitt’s claims lack even an inkling of science. In the demeanor of a hokey cult leader, he lays out his horrifying *beliefs* about fibromyalgia."
Everyone needs to take a breath and step back and mediate on this! Walitt is using complex language that should not be taken superficially.
In my opinion Walitt is using deliberately obfuscating language. It is not complex so much as vague and misleading. Jeanette was telling it like it is.
He does make a couple fairly good points but then jumbles them all up in completely made-up theoretical musings
about how these illnesses are simply an "experience of normal". While from one vantage there is some truth to that (it is our normal now, and
many of us have learned to cope with that) he presents some ideas that are really dangerous to people who are not properly educated about neuroimmune disease.
He is essentially making a case for not even trying to help patients who bravely live with an ongoing array of symptoms that would have The Hulk in tears.
My "experience of normal" is pain, orthostatic intolerance, awareness of my own horrible-to-witness cognitive decline, isolation, loss of career, friends, hobbies and
much of my treasured independence, poverty, and the looming spectre of homelessness.
I am a long-time meditator, and I credit that with having kept me sane and relatively equanimous, considering what I live with every day. I also have the discernment to know I do not have to chose to believe poppycock fantasies like that, and to seek whatever relief I wish to; and I need professionals and scientists who see reality clearly so they can contribute to and collaborate with me in my pursuit of the healthiest possible life. (I am also personally much more inclined to Alternative and Complimentary medicine, but I have no truck with the kind of BS this guy espouses.)
I think it is reasonable to expect my medical professionals to have at least the desire to help me manage the worst of the symptoms, regardless of what "normal" looks like to them, me, or anyone else. No one should have to live like this with zero input (much less compassion) from medical professionals. We have already been tossed aside enough--now is NOT the time for more of that!
Walitt has wrapped up a fantasy in pseudo-science-speak and a very damaging one at that. Don't treat these people, it upholds their inability to deal with normal life. [ETA: I have paraphrased, accurately-- see @Valentijn's post below for the direct quotes]
Only people who have never had neuroimmune disease can spout crap like that--and people who habitually indulge thought-forms and belief-systems and spin stories from them with no regard for whether they are based in Reality or not.
So learning that someone with beliefs like that is heading up key research at a major govt agency is alarming, and merits strong language. I have a different communication style to Jeannette's, but I appreciate her candor and wrathful skillful means in letting NIH know that this is not an acceptable choice. Demure sidelining is not the appropriate response to where we are right now historically, politically, or scientifically.
I most certainly do not plan to take a step back. If we are going to issue directives to the patient community, my suggestion would be leaning in at this crucial juncture.
Lean in and let them feel the full heat of our collective body/mind!
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