Discussion in 'Action Alerts and Advocacy' started by Mindy Kitei, Feb 2, 2011.
at CFS Central
After I saw Mindy's editorial yesterday, I sent this to Collins and Mangan:
Great, illsince77 and Mindy. STOP THE PSYCHOBABBLE NOW is sooooo important. It is guaranteed that the rate of reactive depression will go down 85% instantly if the doctor just believes the patient and treats him with respect. And NIH didn't need to fund a study to find that out. The other 15% is from Klimas supporting that study.
Here is the kind of advocacy that will attack this issue: http://www.mecfsforums.com/index.php/topic,5254.0.html
I'm kind of interested to see some psychological studies on the impact on patients of the presumption that they're mentally disturbed/suffering from a psychosomatic illness. Are friends/partners who believe their illness is psychological in nature more/less likely to abandon them? Are doctors who believe CFS is primarily perpetuated by psychosocial factor less interested in helping their patients? Less concerned about any poverty that may result from their illness?
We've been experimented on fro 20 years... may as well finish the job.
Maybe at the NIH conference in April, a pack of patients could show up with T-shirts and signs that say "STOP THE PSYCHOBABBLE NOW!
I've written to you on your blog Mindy and have been answered.
Your comments as below are extremely misguided, and if you really think analysis of psychogenic explanations of CFS have been 'done to death' then you are arguing from ignorance on this subject. You are in effect expecting people with key analytical skills who have been building up excellent knowledge for this community to stop that work and go write a letter/email or fax to some government agency.
I am really shocked you have taken this tack. I think in your zeal to put out a call to action, you have not thought this through. It's pretty divisive and an insult to those of us who have put in such work over the years to argue against psychogenic explanations and their flaws, and the positive effects of that on community knowledge and coherence, as just one example. It's a call to ignorance, in effect.
Critiquing flawed research is important
I know very little about advocacy, but I don't think analyses of psycho>somatic explanations of CFS have been done to death. Psychobabble shouldn't get an easy ride, and authors should be called on it if it is present in their studies. The scientific community in general, and AFAIK the large patient organisations as well, have all failed to do this properly.
Yes, we do need much more funding into biomedical research as a priority, and yes proven organic pathology will help loosen the grip of psychobabble, but frankly, these alone won't make it stop. There is a long history of psychologisation of illness in general, and mind over body psychobabble for known organic diseases still continues today. Don't underestimate the tradition, inertia, and entrenchment of such psycho>somatic ideologies.
Biomedical research funding could be mostly wasted if the issues with criteria are not resolved. Even then, at some stage someone will want to repeat the psychological research after ME/CFS has become better defined and understood. Also, biological abnormalities are more exposed to psychobabble if they are on the frontiers of science and more subtle than previously established disease processes.
Expect to see redefining of terms, goalpost shifting, and an irrational "escalation of commitment". People have compared this to a war. Pushing for biomedical research while ignoring the psychobabble would be like a superior army heading into battle with a vulnerable flank, the fighting will last longer and the victory will cost more casualties. As Tom Kindlon said on the comments page of Mindy Kitei's article, some psychological research is interesting and helpful. It can also be used to help combat flawed psychobabble.
Many patients and advocates have written critiques of particular psychological studies and hypotheses over the years, not to mention other research areas such as the flawed XMRV/MLV studies (eg Gerwyn). I would actually like to see an increase in this sort of activity, but unfortunately much of what has been written is embedded and scattered across countless pages of forum discussions and blogs etc. If only this wealth of information and wisdom was more centralised, involved collaboration among multiple authors, and was better targeted towards those who need to see it?
Thank you biophile.
These are really, really important points.
And sorry for forgetting to mention your work! You have been generating some really important analysis on the forums, a lot which I've certainly learned from.
Supporting the Mindy motion - it's been too long in the hands of the Psychos exclusively. Especially here in the UK. And roll on shifting goalposts in the meantime. They even pop up in A&E when one's suffering blackouts.
Analysis of analysis = more and more analysis, and nothing could please a psychiatrist more.
More clever deconstruction of elaborate constructs = more and more engagement with what you don't want = more resistance, more intellectualising and academic somersaulting = more time/energy wasting, and diverts focus away from the goal we all want to achieve.
Creating clever academic arguments is a diversion tactic.
Nothing could please a psychiatrist more.
I say focus on what you do want (not on what you don't want).
Although I appreciate all the hard work everyone has put in until now on all of our behalves (is that good english ?!) I agree with Mindy that to move forward we have to stop engaging with what we don't want and the past, and look forward and start engaging with what we do want.
No more analysis. It is mental ma... bation and makes you feel better, but achieves NOTHING. (Somebody somewhere is already being extremely well paid to do it much better than you.)
The only action that has made all the difference in the world to the status quo as it has been for the past 25 years is the XMRV discovery and the Science publication.
Did the WPI/NCI and Cleveland Clinic make their initial discovery by engaging in dialogue with psychiatrists to refute their dialogue? No - they got in the lab, looked at where they wanted to go and went there.
If we want to go there too, we can send money to biomedical research facilities and support them, ie the WPI and others, and insist on only research into biomedical causation of ME, and ask for this, and this only, from the funding and policy making bodies. No more talk, just action in the right direction.
Disengage from what you don't want and leave it behind you in the dust, where it belongs.
I had the same experience as Mindy. Being new to the forums, I'm astonished at the many talents and persistence seen here; I just wish it were directed to the solution - toward those outside the forums. It is a war, not an information campaign. We don't need to explain our illness, we need to attack and stop those who are wasting our research money.
What on earth makes you think it's NOT being directed outside the forums?
I'm sorry, but if you think all we have to do is put our fingers in our ears, sing "lalala" and the bad men will go away, you are sadly mistaken. As advocacy strategies go- it's a really bad one- but it is what you are metaphorically advocating by trying to trivialise or judge as futile the work people like me do.
Q. Has CBT/GET helped ME patients get back to work?
Conclusion: This strategy does not work, therefore time to adopt a new one.
Q. Has critiquing psychological abuse towards ME patients stopped the abuse?
Conclusion: This strategy does not work, therefore time to adopt a new one.
There is no judgement, just a 'does it work?' question.
There is no need to keep on at a path that doesn't work - just adopt a new one.
Stop giving them air and they'll stop breathing.
I'm a patient too - its not like I'm talking about something in which I have no experience here.
But you clearly don't know the issues. You really think people critiquing psychogenic explanations are SUPPORTING them? Because that's what you are basically saying. You really believe that the whole edifice of psychogenic explanations will collapse because some patients go 'stop engaging with those psychiatrists' and write angry letters to the government? That's unbelievably naive.
So, pointing out exactly why this whole edifice is wrong- is wrong in itself! By your strange, strange reasoning.
I don't think any of us know how to get people to treat CFS more fairly. I teven think that some forum squabbeling is useful, as a way of developing our own ideas and strengthening our arguments.
Sometimes I see CFS patients campaigning on the basis of arguments and claims that just don't hold water... and I don't think that does us any good. It would have been better to thrash them out somewhere like here first imo.
I am unsure about all this though... we're not in a great situation of strength, and I'm not sure if we are able to make dramatic improvements ourselves. I always think it's worth engaging the arguments of those you disagree with - but this may be one of my own delusions (I know quite a lot about Zyklon B following a discussion with a Holocaust denier. After all my research, it seemed he wasn't interested in the evidence at all!)
Well - i wrote this in response to Mindy this morning (some grammatical errors corrected- probably not all of them). I think it sets out why I am so shocked at what's being proposed both here and by Mindy herself in her comments (not just the first blog).
I think Biophile has made some extremely salient comments on the issues in particular in this thread, and would implore people to read it.
Hi Angela, none of my comments above were intended to personally offend you and if they have I am sorry.
The way I like to approach the illness is to focus on what I do want, ie fund physiological research with what tiny resources I have. This is why Mindy's post has resonated with me. There a millions of us and even a 1 or $1 each to a biomedical research foundation (ME Research UK) and WPI and others will help to move us in the direction we actually want. 5 from each of us to a responsible research institue could outdo the meagre UK MRC budget of 1.5 million instantly for eg.
If you must engage with these psychos understand that nothing you say will change their mind or change their actions. Nothing. Any more than anything they say to me or you will change my mind or your mind about what is causing our illness.
What you are trying to do is fundamentally change the nature of the human mind - it can't be done. What you are hoping to do is change someone else's mindset (ie Wessely's) to agree with your own. In other words, you are trying to be right.
Meantime he is trying to change yours and everyone elses to his way of thinking - and we don't like it either. And we say he is 'wrong'.
I am also writing this email and trying to change or influence yours to my way of thinking - it won't work of course and you won't like it either - minds like to reason and debate and discuss endessly and be right and - .. nothing changes.
Similarly, if White and Wessely's mind and discussion treatments actually changed anything, they'd be out of a job. Its all just - mental.
In the meantime, while we have all been posting/debating/engaging the intellect here in the past few hours, how many of us also actually pledged money to the WPI or ME Research UK to move a step closer to what we say we want? Or have we all been spending time getting distracted and engaging in intellectual arguments and counteractions - like I have? See how it can go on endlessly?
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