CBT/GET potentially harmful to ME/CFS patients

Orla

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Part 3 (probably my last on this discussion so don't worry!)

<Because this is a forum for people with CFS, many of whom will have shared experiences, I worry that it could encourage a mode of expression which will make it more difficult for us to communicate and convince outsiders of our ideas and concerns>

Talking on this forum is not the same as talking to the ignorant in the 3D world. Why assume we cannot make that distinction? Obviously people are going to talk in a different way here than elsewhere, and we should be allowed to let our hair down a bit.

And for myself, wherever I am, I'm not going to try and convince prejudiced/hardline psychiatrics who have a financial interest in maintaining their position. They have already written us off as crazy.

< CFS patients are pretty widely dismissed by the medical community as militant (another good comparison with African American civil rights?)>

People defending the status quo regularly dismiss the expolited/oppressed as crazy, too pushy, too militant etc. once they start campaigning for their rights. If having an opinion backed up by evidence is militant, then yes I am militant.

We could learn lot from the civil rights movement, they certainly did not advance their cause by sitting at the back of the bus and being quiet. This passage from Martin Luther King seems apt:

"I have been gravely disappointed with the white moderate. I have almost reached the regrettable conclusion that the Negro's great stumbling block in his stride towards freedom is not the White Citizen's Councilor or the Ku Klux Klanner, but the white moderate who is more devoted to "order" than to justice, who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice, who constantly says, "I agree with you in the goal you seek but I cannot agree with your methods of direct action"; who paternalistically believes he can set the timetable for another man's freedom; who lives by a mythical concept of time and who constantly advises the Negro to wait for a more "convenient season".

Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is more bewildering than outright rejection."

(Why We can't Wait, Letter from a Birmingham Jail, Harper & Row 1963)

<and I think this could be changed if we took a more cautious and self-critical approach to the presentation of our ideas.>

Some people have done that and it has been a disaster.

Also, there is a world of difference between useful self-criticism, and becoming crippled intellectually, and drowning in a quagmire of inaction by too much focusing on one's own abstract intellectual thoughts. I think it is useful to have a studied opinion and to act on it, once one is always open to learning. I am interested in not just thinking about things, but actually doing things to improve our existence.

<but I do think it's worth recognising the limits of this approach, and that we can become influenced by our own cognitive biases in a way that can lead others to dismiss our viewpoints>

Having an opinion doesn't mean being irrationally biased.

To give another example, I don't believe the earth is flat, not because I am prejudice but because of evidence to the contrary. I feel I don't constantly have to correct my "bias" for thinking the earth is not flat as that would be a silly, impractical, waste of energy.

The essence of the psychiatric views have already been disproved, but if we don't act to counteract their views in public scientific progress will be held back.

Orla


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Esther12

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Hi Orla.

I fear that a full reply to you would lead me to little more than point scoring.

I think some of your comments were rather flip, misguided and unpleasent, and I'd quite like to reply in kind. I just don't think it's worth my while.

I would be interested in any especially damning recent papers by the psychological lobby, and what you meant by "Some people have done that and it has been a disaster".

Other than that, I think we're just talking past each other.
 

parvofighter

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Slam-dunk Orla, way to go

Orla, you're a gem. I just posted a note on another thread, then realized it was equally applicable here, so I am reposting here as well. Lest there be any ambiguity in my next post below, allow me to emphasize the key points:

1) CBT/GET-as-primary-treatment-for ME/CFS is scientifically spurious and morally repugnant to those of us who are losing our lives to ME/CFS. Regardless of how CBT/GET is sugarcoated, it's like trying to "treat" a starving child by painting their toenails a pretty color. CBT/GET for depression is another matter, and there's lots of great research to show that doing more can be a good thing. But the "do more, you'll feel better" maxim is ludicrous in the face of biologically robust ME/CFS and post-exertional malaise (PEM).

2) Us ME/CFS'ers WANT to get better. Listening to veritable infomercials on a psychogenic-based industry that profits off the backs of patients with biological illness doesn't cut it. Our resistance to the CBT/GET-as-primary-treatment for ME/CFS is logical, scientifically based, and intuitive. Anyone who lives with PEM gets it. This is not rocket science. Anyone who studiously, and I would argue relentlessly, ignores crystal clear clinical histories of patients with Canadian/Fukuda criteria will not get it.

3) If you have very mild/early ME/CFS, with symptoms that wax and wane, I can see how one might doubt the symptoms. I did for years. I should also note that I was so professionally invested in the CBT/GET philosophy as a rehabilitation medicine professional/patient myself, and such a go-getter, up-by-the-bootstraps Type A personality, that it took several years of ignoring my waxing and waning symptoms until my symptoms had progressed to the point where I had no choice. I finally actually listened to my body, and recognized how chillingly predictable and relentlessly, progressively debilitating post-exertional malaise was. Yes, even when I wasn't expecting it. MS & RA patients don't get laughed out of town because their symptoms wax and wane. Why should this be any different for us? I will also add that my initial ME/CFS symptoms were indeed multisystem and nebulous. I can see how it's easy to doubt PEM when it's mild, and attribute it to lack of motivation. I did that. Unfortunately however, this disease has had 11 unchecked years in which to progress to the point where PEM and ME/CFS is entirely unambiguous and indeed devastating. I now also have stroke symptoms and cardiac pathology - biopsy-confirmed, with antibodies against the inner lining of my blood vessels: a known and abundantly documented sequelae of persistent parvovirus B19 infection (also a known cause of ME/CFS - see Kerr's work on this, or type in keywords "parvovirus B19 endothelial " on PubMed: http://www.ncbi.nlm.nih.gov/pubmed). ME/CFS is a dangerous, multisystem disease that can kill you - or just rob you of your life. And yes, it will present differently, depending on the stage of severity, genetic/environmental factors, and on which opportunistic infections you might have.

4) There is no reason why someone with mild ME/CFS should not explore all possible treatment channels, including biologically-based and psychogenic-based modalities. However be mindful that there is an extremely profitable CBT/GET lobby, whose financial interests are best served by preserving the status quo and treating all patients with fatigue as psychologizers. In other words, conflict of interest. Fortunately there is a growing MOUNTAIN of biologically-based research that not only credibly and scientifically accounts for the complex ME/CFS symptoms, but also points to honest-to-God treatment. Do not ignore this mountain at the behest of the CBT/GET lobby. CBT/GET at best (and I'm being generous here) are merely coping strategies for ME/CFS. All I can say to the newbie ME/CFS patients is: for your own sakes, please do your homework. Read the Canadian criteria document: http://www.cfids-cab.org/MESA/ccpc.html Document your symptoms. Trust your gut. Advocate for genuine care. Do not allow yourself to be abused into abandoning medical care for this biologically-based illness.

5) Definition of ME/CFS criteria make ALL the difference in research outcomes. Look at the CBT/GET in particular with a gimlet eye, as they notoriously use the most liberal criteria (larger market size for these empire-builders). Challenge any research so you understand whether they were in fact studying ME/CFS patients, and by which criteria (the Canadian and Fukuda are the most robust. Don't take my word for it. Read the criteria yourselves). Are they really studying ME/CFS? Nebulous fatigue? Or the poor souls who have "just" depression? The icon below is a great image to capture how the CBT/GET have profitably muddied the research waters:


Pull out the depressed patients from this icon, and "research" claims of CBT/GET treatment success plummet.

6) Medicine IS bizarre, and requires an open mind. The arrogant assertion that ME/CFS has been studied to death - or the categorical dismissal of Medically Unexplained Symptoms as hypochondria - completely misses the reality that we know very, very little about the intricate workings of the human body. Humility is required to understand complicated, multisystem diseases, which can defy our preconceptions about what is "normal". Case in point: this image from a program with the Discovery Channel on Indonesia's Tree Man: http://www.yourdiscovery.com/web/my...uide/tree-man-half-man-half-tree/?cc=US&cc=CA . A chilling example of the ravages of the Human Papilloma Virus on an immunocompromised patient. Virus + immune compromise. Not all that different from XMRV at a microscopic level.


As Michaelangelo famously said, "I am still learning". The CBT/GET lobby have shown every indication that they are ossified in the past.
 

parvofighter

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Perspective of a rehabilitation medicine professional with ME/CFS

Here's my post from another string.

Playing NICE: circle time is over

Thanks tomk, Mithriel, cjbrennan for your great posts. Allow me to expand on this NICE theme.:);):D

In my view, discussion of CBT/GET as primary treatment for ME/CFS is as irrelevant to the XMRV finding - and to the scientific pursuit of an ME/CFS patient getting better - as one can get. And before anyone shoots me down for my transgression, I'm speaking not only as a decade-long, PCR/immunohistochemistry biopsy-confirmed case of persistent parvovirus B19 and ME/CFS, but also as a former medical professional with double degrees in Rehabilitation Medicine.

Allow me to qualify this: 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. 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.

Any physiotherapist/ occupational therapist/ physiatrist (and even psychiatrist - there are a few stellar ones researching ME/CFS) worth their salt would be jumping through hoops in enthusiasm, to learn more about post-exertional malaise and VO2Max abnormalities (eg. U of Pacific), mitochondrial dysfunction, opportunistic infections, RNase-L dysfunction, genetic signatures, etc. And of course XMRV. So indeed it's no surprise that Ivy League university Cornell has just joined the illustrious WPI team. Or that there's a veritable international race to replicate WPI's findings. Or that 75 of America's top virologists/retrovirologists dropped everything to meet at the Cleveland Clinic to fast-track XMRV research.

Please heaven, give us a break with this unscientific CBT/GET-as-treatment-drivel. Rest assured, as a good rehab professional I've been there, desperately trying to toe the party line. Done that. Made me profoundly worse - not just once, but many times, because I was so sure that I could judiciously exercise my way out of this beast. And no, I'm not just a sample size of 1. If the CBT/GET lobby were to come down from its lofty perch and care to listen to ME/CFS patients with classic post-exertional malaise (particularly those with Canadian or Fukuda classified ME/CFS), the verdict is unanimous. Graded exercise - much less ANY exercise - can be and is poison, particularly to people with PEM and who can't do basic activities of daily living (ADL).

Frankly, I'd be grateful if avid proponents of CBT/GET-as-treatment-for-ME/CFS could conduct this vapid marketing elsewhere, or on a dedicated marketing thread, where respondents want a monotonous, single-theme infomercial rooted in narcissism, rather than intelligent discourse on diverse matters that deeply affect our health. My observation is that the vast majority of people on this forum want to LEARN, and most importantly, want to GET BETTER!!! CBT/GET as a core strategy in our ME/CFS community's pursuit of health is illogical, unscientific, and downright bizarre.

It does raise the issue of moral hazard however, and the MBA in me gets it that a veritable multi-million $/ CBT/GET industry built on the lives of patients suffering from a retrovirus and known opportunistic persistent viral infections is understandably loath to relinquish its cash cow.

Additionally, I am reminded of the research finding a disproportionately high rate of Narcissistic Personality Disorder in the medical profession. Self-selection in action. Think: someone who despite the facts continues to propagate his/her skewed view of reality. Someone who will stop at nothing to get his/her way. Someone who is clinically incapable of empathy. To my fellow ME/CFS patients. Look up Narcissistic Personality Disorder (NPD) I know you guys are beautifully internet literate, and thank heavens for the power this gives us. I will eat my Canadian Winter Olympics hat if key personalities in the CBT/GET saga dont have NPD. But then again, NPDers are clinically devoid of insight they will never get the grievous damage they have foisted on this patient group. And they won't stop unless we stop them. Thankfully WPI is doing just that.

Those of us who are fighting to get our lives back from this devastating illness and the chorus is resounding on this forum are not deaf or blind to the CBT/GET lobbys thinly-veiled malice, and concerted effort to show us - and the world - the error of our misguided ways. To the CBT/GET lobby, please do not mistake our silent observing of your obfuscations for meek agreement with your flat-earth exhortations.

Weve got science on our side. Which, not coincidentally, underscores that the symptoms we've been describing to our docs for the past several decades are quite simply the unvarnished TRUTH. As for the inevitably crumbling CBT/GET lobby?

Its a tale told by an idiot.
Full of sound and fury.
Signifying nothing.
 

Gingergrrl

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@Dr.Patient, I was actually looking at this thread last night but am confused, was the text cited by @parvofighter part of a letter writing campaign or study? It is incredibly well written and I am hoping it went somewhere very important. My mind is not working well enough to go back and read the whole thread.