a`\ 

MM on ME

 

Apr 13, 2010

 

 


+ 1 * mm

Hello Parvo,

You wrote:
 

Quote Originally Posted by parvofighter View Post
MODERATORS and fellow forum members:

Courtesy is nice
I started up a new thread because I believe the issues I raise below transcend our being courteous and accepting and tolerant of each other on this forum. I wholly support the concept of a civil, caring society here. However I categorically do NOT agree with giving forum members carte-blanche to put the health of our participants at risk.

Drawing a line on unchecked CBT practiced on this forum
Specifically, I am asking you as a group to consider the ethics of whether we should draw some kind of a line: how far will we collectively tolerate risk to the health of our members, resulting from unchecked Cognitive Behavior Therapy, actively practiced by a small minority of members on unwitting members of this forum?


Medicolegal risk.
What legal liability presents when a forum doesn’t protect its patients from dangerous recommendations about health practices, or exhortations to ignore physical signs and symptoms? Does the forum have a policy on posters who repeatedly , skilfully, and subtly recommend practices that are outright dangerous to the health of ME/CFS patients, and that at their core involve encouraging patients to ignore clarion physical signs of injury, damage or illness?


The last straw: Insinuations to ignore Sun Intolerance - a known risk for organ damage
My last straw: 2 individuals - as part of a continuing and well-recognized theme encouraging patients to ignore their very real physical signs - are now inferring that patients also ignore sun intolerance – a symptom that is known to be potentially associated with immunological cascades, auto-immune inflammation, organ damage, and yes, death. Look at the science I have posted on the linkages between chronic EBV infection, PVB19, lupus, sun intolerance etc. http://www.forums.aboutmecfs.org/sho...the-heat/page3
(Starts @ Post #27) .This is no trivial matter. Ignore serious sun intolerance, and you risk organ damage. But that is what these lighthearted CBT enthusiasts are recommending.

Believe it or not, CBT is actively being practiced on unwitting forum members. And I'm calling it. It looks like a duck, quacks like a duck, and tastes like a duck....

Ethical/legal considerations
Is it possible that this forum could be shut down by a lawsuit? Isn’t there an ethical obligation to “do no harm”? Has this forum become the free treatment/manipulation arm of the psycholobby? I for one believe that it IS possible to be academically enlightened - without allowing vulnerable members of our forum to be given very, very dangerous medical advice.
And this stage may be a necessary maturation of this growing forum.
Protecting forum members from unwanted manipulation and CBT
The forum has rules that prevent individuals from attacking individuals. But what about when a small cadre of the usual suspects (2 individuals in this case) endanger an entire patient population on this forum through repeated dangerous insinuations and recommendations about our health that repeatedly exhort us to ignore and press through physical symptoms?
Do we have a standard about how far is too far, when it comes to endangering the lives and health of patients here - however subtly and skilfully these recommendations are slipped in?

Many of us are well aware of the immunological cascades , cytokine storms, etc. which arise from “pushing” through a crash, or pushing through post-exertional malaise. Many of us are living the consequences of vasculitis: heart and stroke complications as a result of opportunistic, persistent viral infection. Many of us are also well aware that not every "CFS" patient has Canadian-Criteria post-exertional malaise, and that we need to show solidarity in our quest for biological research for the potential subgroups of ME/CFS. All the more reason for us to be precise and meticulous about how CBT/GET are presented on this forum, so that patients who suffer immunologically from trivial activity don’t do permanent harm to themselves by listening to the CBT claptrap insidiously filtered into our forum. As a sage poster advised me, why risk permanent immunological damage when we are potentially SO close to a CURE for ME/CFS?

Source thread: the important topic of Sun Intolerance
The repeat offenders have now embarked on more on the "false illness belief" theme: advice for patients to ignore the dangers of sun intolerance. Dangers that include permanent organ damage. (See 5-part link above) What responsibility does this forum have to protect its members from repeatedly dangerous “medical” advice: I.E. “It’s all in your head: push through your symptoms!”


Has there been consideration given to the legal liabilities inherent in not moderating the behavior of regular offenders who routinely endanger the wellbeing of this entire forum: ME/CFS patients – this forum’s market base?

Is it time for a policy?
I submit that it's time to develop a policy to this effect:
 
  • No gratuitous attacks on individuals (which we already have - and which I may well have contravened by raising this issue.)
     
  • No CBT practiced here. In other words, exhortations or insinuations for patients to ignore their medical symptoms will not be tolerated because it's unscientific, immoral and dangerous.
     

Preserving the soul - not just the heart of this forum
I have intentionally posted this publicly to raise a very large red flag that I believe this forum to be on exceedingly thin medicolegal ice. While civility - if not outright ribald humor as per the Church of False Illness Beliefs - is the heart of this forum... what about it's soul? My personal belief is that this is no time for a laissez-faire attitude when patients health is being tangibly endangered repeatedly by dangerous and wholly unscientific CBT techniques, practiced openly and unchecked on this forum. Let me be crystal clear: I believe that regardless how skilfully cloaked these exhortations are, any message to NOT trust your physical symptoms borders on criminal negligence. Who is prepared to say "Oops" if just ONE patient ignores sun intolerance, and goes on to develop organ failure? When we are SO CLOSE to a potential cure for many of us?


Does that mean that I'm suggesting that CBT cannot be discussed here? Absolutely not. But to see it insidiously PRACTICED here, manipulating patients to make seriously dangerous choices about their health? That's dangerous, and I'll have no part of it. Much tho I love this place, Parvo needs some clarity on this issue.

A big +1 - and great posts, Parvo.

Whether all of what you say can be discussed rationally and reasonably on this forum (where the great majority do try, in good faith (bona fides), and usually succeed doing so, finely and honestly also) is somewhat problematic - and Katie proposed not so long ago two kinds of Community Lounge, that might help if implemented.

We'll see... and for me there always is my site if I really want to say what I think, only moderated by me myself.

And I do in particular like your proposed new forum rule, though I also add that some may have been tricked in good faith by the practised CBT, which when served skillfully may sound persuasive to some who did not have the time or health to read the Canadian Overview and professor Hooper's Magical Medicine.

Best regards and best wishes, Parvo:

Maarten.

P.S. I'll later add some links. (And Parvo: please take care of your health...)

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