Positive article in the Times about ME

[Gerwyn]

Hello Gerwyn,

Just woke up, which is also the reason not to turn to you sooner.

I hope the reply gets in, but won't be amazed if it doesn't. In any case, for those who've read parts of my site and some of my thoughts on health-professionals, that tend to come served in satirical sauce:

(1) I have a long history of spoken and written controversy, mostly about the decline of Dutch education, and so far have done most of this alone (except as a so called "student leader" ca. 1980)
(2) If I do it alone, I can be very satirical and sarcastic, and mostly am concerned with the truth.
(3) Now there are possibilities of organized groups of people with ME and a good education, some thinking and planning should be done about diplomacy and what may be called the politics of ME. With more people and some coordination, we can use a many-pronged approach, and praise what deserves praise, especially in journalists, for - I take it - they do take a risk of e.g. an irate Simon Wessely calling their bosses.

As I may have said before on the forum: Lord Chesterfield was a clever man and a diplomat, and he adviced his son many things about "how to make friends and influence people", and one of his key sayings here is "If you want to be pleased, then please". Dr. Johnson, his contemporary called this "the morality of a whore and a dancing master", if my brain is not too tired, for which diagnosis a lot can be said, but what we - people with ME - need, are journalists willing to listen to us and willing to take a risk to speak mostly for the patients rather than for the authorities.

And this may take some flattery, some non-saying of bitter things, perfectly justified as they often are, and also some awareness that journalists, especially as regards ME, lack lots of knowledge people with ME and health-professionals often have, and do run a risk of displeasing pretty powerful health-professionals.

This does not mean one desists from satire and personal attacks, but in its own place, to back up the nice requests and praise.

Anyway... none of this is in criticism of anyone. I only try to briefly explain how we - people with ME - may go about it if succeed in getting organized, and find people among us of various capacities, to get our points of view across in various tones of voice.

And one of our strong points here is that (1) the NICE-approach, to call it that for the moment, is based on pseudo-science. "The public" and the vast majority of journalists are not up to making this judgment, but (2) it is something almost all real scientists - i.e. those who are not psychiatrists or psychologist, and don't have a medical degree they may risk by opposing a professor of psychiatry - will mostly agree psychiatry and psychology aren't much of real sciences, and (3) if they look at the evidence will agree something fishy is going on as regards psychiatry and ME, while (4) the general public does not seem to be very fond of psychiatrists and psychiatry, and rightly so (also given the nonsense it spouted about many subjects between 1900 and 2000).

But I am pretty certain you mostly agree, and will later today get to you privately, if this works by way of the forum's still wacky software.

Best regards,

Maarten.

P.S. The site is here: www.maartensz.org. Note that it is 150 MB text, and part of it - mostly in Dutch though - is strong satire. It is fairly well read, in that I have since several years over 300 different daily visitors, between 2000 and 3000 daily hits, and over 100.000 yearly visits. (But this is mostly not because of ME, but because of philosophy or programming. Anyway, in any 24 hours, my texts are read about 72 hours, which apparently miraculous fact comes about through having at least 300 daily visitors.)

P.P.S. One of the notions I have been playing with - having written a Philosophical Dictionary - is a ME Dictionary. I think this might make a very useful sort of thing, especially if put together mostly from contributions from members of the forum, but edited. This helps also to summarize lots of information, and refer people to "what I mean by .... is under this link" etc.

I agree with everything we must mis politics science and spin fight fire with more fire

 

[thefreeprisoner]

Psychiatry? Bad science. Psychology? Only sometimes.

And this may take some flattery, some non-saying of bitter things, perfectly justified as they often are, and also some awareness that journalists, especially as regards ME, lack lots of knowledge people with ME and health-professionals often have, and do run a risk of displeasing pretty powerful health-professionals.

Absolutely. Well said Maarten!

This does not mean one desists from satire and personal attacks, but in its own place, to back up the nice requests and praise.

Satire? Yes, absolutely. (As you can see from my sig which features a clearly fictional set of psychiatric consultants .)
Personal attacks on the other hand - I disagree. Well, in the sense that a personal attack is saying something like "x psychiatrist is an ignorant b***h and deserves a slap". Which I think is against the rules of this forum.

And one of our strong points here is that (1) the NICE-approach, to call it that for the moment, is based on pseudo-science. "The public" and the vast majority of journalists are not up to making this judgment, but (2) it is something almost all real scientists - i.e. those who are not psychiatrists or psychologist, and don't have a medical degree they may risk by opposing a professor of psychiatry - will mostly agree psychiatry and psychology aren't much of real sciences, and (3) if they look at the evidence will agree something fishy is going on as regards psychiatry and ME, while (4) the general public does not seem to be very fond of psychiatrists and psychiatry, and rightly so (also given the nonsense it spouted about many subjects between 1900 and 2000).

I totally agree with you about psychiatry there, and about the NICE approach being pseudo-science. In my opinion psychology (at least, most psychology, if done well - important caveats there) is a legitimate science. Most psychologists (if they're studying for a BSc rather than a quasi-philosophical Freudian BA, most of which I think have now been phased out) receive proper training in the scientific method, experimental design and statistics.

For example, a former staff member of mine is currently studying for a PhD in Psychology. She has carried out research into how Williams Syndrome patients' learning difficulties could be the results of disordered sleep, and thus perhaps enable us to learn from that about how sleeping helps consolidate short-term memory into long-term memory for learning. (At least, as far as I understand it, but my memory is swiss cheese since this latest bout of ME.) It's proper science done right. Mind you, perhaps a biologist might come along, evaluate her scientific method and say 'cobblers' but it looks rigorous to me (admittedly a non-scientist).

Rachel xx

 

[Marco]

"Most psychologists (if they're studying for a BSc rather than a quasi-philosophical Freudian BA, most of which I think have now been phased out) receive proper training in the scientific method, experimental design and statistics."

I have to take issue with this Rachel. I'm not aware of any distinction in course content between a BA and BSc in Psychology, at least not in my day, and the scientific, method, experimental design and stats were an integral part of the course. Freud was an optional side-issue.

On the more substantive matter, I agree that we really need to cultivate any journalists who appear on-side. Were there not also similarly sensible articles lately in the Daily Mail (in this case a writer on a major daily who can speak honestly from a personal perpective) and a English regional newspaper?

The Mail particularly should be more than interested in how the government have misused scarce research funds and rolled out an expensive unproven 'treatment' pilot based on a psychciatric agenda. Perhaps they could be persuaded to do a follow up piece while the Gilderdale story is so current (and covered on BBC Panorama this evening).

Regards

Marco BA Hons Psychology.

 

[thefreeprisoner]

Maybe I have foot-in-mouth disease, not ME

I'm not aware of any distinction in course content between a BA and BSc in Psychology, at least not in my day, and the scientific, method, experimental design and stats were an integral part of the course. Freud was an optional side-issue.

OK - I stand corrected.

That'll teach me to base a whole opinion on a quip by a psychology lecturer during a visit to York University in 1994

Sorry Marco!

On the more substantive matter, I agree that we really need to cultivate any journalists who appear on-side... [snip]... The Mail particularly should be more than interested in how the government have misused scarce research funds and rolled out an expensive unproven 'treatment' pilot based on a psychciatric agenda. Perhaps they could be persuaded to do a follow up piece while the Gilderdale story is so current (and covered on BBC Panorama this evening).

AMEN to that. I can't believe this isn't happening already, however... surely at least some of the UK ME charities must be up to similar sort of things? I'm keen to ensure... given our limited energy and resources... that we're not duplicating any work.

Rachel xx

 

[Gerwyn]

As a Psychologist I,m concerned about the creeping sociology which is making some psychology courses less scientific and even questioning the validity of the scientific method at all preferring discource analysis and not focusing on the mind at all--social constructivism is yet another-They are sociological perspectives and no doubt useful but they have nothing to do with the scientific study of the mind!.......There I,ve got that off my chest! In the Uk I suspect we need celebrity endorcement(sadly) who can be briefed on the science and write in the popular magazines and appear on chat shows endorse campaigns etc which are profitable for the media and demonise the opposition if we have to.

 

[Marco]

It wasn't a dig Rachel. I would have added a little wink but couldn't see any icons available on quick reply.

For what its worth, after studying a single hons 'proper' psychology degree, I still found lots of it too wooly and fluffy for my taste (social psychology especially) and ended up doing a final year thesis on computational vision - at least that had a bit of a scientific edge.

It also left me more cynical to an extent. Any time I witness some poor unfortunate being beaten up in the street I assume its just a bunch of psych undergraduates doing a bystander intervention study and walk on!

 

[Bob]

I found this related story in the Times as well... it's also a sympathetic story:
http://www.timesonline.co.uk/tol/life_and_style/health/article7008987.ece

 

[usedtobeperkytina]

The term is "diplomacy."

As Reagan said, paraphrased, "negotiate with kindness, but carry a big stick."

We need good cops and bad cops. We need some with the biting tongue and then we need some reaching out with respect to attract.

Tina

 

[thefreeprisoner]

Hi Maarten,

OK, thanks... I guess I'll let you and Marco argue the toss, seeing as I have blundered into a debate that I really don't know that much about.

Having said that, I am not sure IQ is an accurate thing to rely on (much as it gives my ego a lot of stroking) to assess the quality of research, seeing as it was also invented by a psychologist and controversies abound in the method of testing. I am sure you know all of this already.

However, one thing is clear, (which does prove your point, but doesn't rely on psychological research) and that is the fact that the amount of people admitted to University is increasing rapidly (in the UK at least) and a dilution of quality research would naturally follow, allowing dross to become mixed in with the gold. Unfortunately, in the water tank of ME research, the dross tends to float to the top :worried: and I think we can both agree on that.

Rachel xx

 

[Marco]

I'm not going to argue with Maarten on the issue - I'm sure he's generally correct . Psychology as a subject area is so broad that it can be as easy or difficult as you wish depending on what you choose to study. My own wry impression after graduation is that the certificate should have come branded as a Walt Disney production, but then I do have higher qualifications in engineering and computing to help me retain some cred. What I do know is that the research/stats content was sufficient to allow me to become a government statistician which will either reassure you as to the degree content or depress you as to the state of government statisics.

Getting back on topic, I feel strongly that someone should be contacting these sympathetic journalists to do some investigative digging. There's plenty of material on this site. It just needs pulling together. I'm more than willing to do this but I'm 'entertaining' friends for a few hours this week which means losing two or three days while I try to make the hovel presentable and then decompress from the stress of a few hours chatting (don't you find general chit chat and telephone calls leave you spinning?).

If I can pull something together I can put it back to the forum for comment. The UK MRC funding debacle looks to me like a good place to start. It might be better if someone from the UK 'throws the snowball' though.

Regards

Marco

 

[thefreeprisoner]

Tread carefully

Yes, always a good idea to get back on track.

From my campaigning and (rather more limited) PR experience I know that personal contacts with journalists are everything. We need to find somebody first and foremost who has those contacts and then talk to the journalist directly to find out what kind of stories they want to print on the heels of the Gilderdale story.

Do we have any PR people in our midst?

Rachel xx

 

[Marco]

Yes, always a good idea to get back on track.

From my campaigning and (rather more limited) PR experience I know that personal contacts with journalists are everything. We need to find somebody first and foremost who has those contacts and then talk to the journalist directly to find out what kind of stories they want to print on the heels of the Gilderdale story.

Do we have any PR people in our midst?

Rachel xx

No - But the Me Association has Neil Reilly. What's he doing with himself presently?

 

[thefreeprisoner]

No idea. I'm not really familiar with the ME charity scene - all the names are so confusingly similar and I can never remember who supports or believes what.

Is anybody here on speaking terms with Neil Reilly?

Rachel xx

 

[Gerwyn]

Hello Rachel,

You wrote i.a.



As to satire: Your sig is excellent, and it is satire and it is personal, and also it is a personal attack (for whoever can decode it). I don't mind in general in that I believe nobody has the right to impose their views on you or me other than a judge in a court (so things like rules of a forum, such as also on the present forum - which I agree should be there - are conventions, and I think they should first and foremost prevent infighting and next prevent the forum being legally liable for what any of its members post).

But as to getting personal again, Rachel: You are MAD! Stark raving INSANE! You have Munchhausen by proxy, tons of dysfunctional beliefs (that may end up destroying your spine, just as the doctors told us males long ago: don't you dare touch it again!), and you're just a poor dysfunctional loonie - IF you are not a malingerer, that is! Courtesy of professor Simon, The Honest One. So there, and now that I and the whole world, and all English bureaucrats KNOW this, I and they will treat you accordingly, filled with the good faith of professor Simon - who is an honourable man - W.'s wise teachings, for they all have learned this from our good and noble British professors Weasely, Whitewash, Chaldatan en Sharke, who never lie, never speak doubletalk, and always mean as well as saints may do, on a fine day. So don't YOU - fraudulent sort of thief from the public money that you must be - dare to protest against these noble profs! They wouldn't needed to have spoken of the doubledealing fraudulent likes of you, if YOU - yes YOU! - had proper selfcontrol and no dysfunctional beliefs! It's all YOUR fault, if not of your parents also! You dysfunctional dysfunctional!

See why I take it personal? O, moderators... I think your IQs are easily up to it, but the above is what lit.crit. students learn to distinguish as "satire". (That is: The writer may be sick, but he means well. And the poor raver just read too much Swift and Hazlitt, also clearly sick men, who unwisely dared to take things personal and to believe they had their own mind to think with, in a world that seeks enlightenment from the Frauds and Weaselys.)

And of course you take it personal too - this clever psychologist educes from your sig, and don't you protest for We Psycho-folks all know about Resistance, The Unconscious, and Compensation for Complexes - and I think you are perfectly justified in doing so.

But indeed no... this does NOT mean one needs to always personally attack somebody who personally attacks one. Yet sometimes it is or may be justified, and as it happens yon trickcylists not only offended me personally but their pseudoscience also overlaps with fields I have a lot of knowledge about.

In any case, when I feel my satire-glands itch, I always can relieve them on my own site, which was built for the purpose (and my own protection, in fact: I may well have been dead without it, though indeed such dangers as threaten me do not come only from ME).

As to psychology: You wrote yourself



With the caveats, and a ton of pinches of salt...yes, perhaps. But to show what I mean, and why I have been active as regards university education, you also add, wisely and correct in principle:



Ehrmm (<-psychological cough)...no. I did not. And I took the full 6 year course for an M.Sc. in psychology. NOBODY did learn this, already thirty years ago. What they got was a travesty of it, a parody, a homeopathically diluted selection from a ghost of an abstract from it. The average IQ of the students in my time - quite a few who are now Lectures, Professors, indeed Psychotherapists - was ... 115.

And that's 30 years ago. These days, the study length has been halved, the IQs are still lower (50% of the population can now attend and finish a university, in Holland, if their parents can pay it, and become a Doctor in some supposed science that is no science, such as "European Studies", "Business Administation", "Freedom Theology with a minor in Sports" a.s.o. I kid you not: Literal truth).

How do I then know what I know? By acquiring it myself, mostly, which I had done already before I started studying in the university for a degree age 27. And yes, there are some good psychologists, just as there are some good psychiatrists, and some good men and women: They were born with some talent for it and trained it properly by their own efforts.

Finally - and this is not the theme of this forum, except to explain to the naive that psychologists are not what they like to pretend, very often - although I don't know by far as much about the English universities, I have seen a fair amount of books used in the teachting of it in English universities, and most of it was bad, simply bad, and much of it also managed to look bureaucratic, in language and presentation.

And the best book in psychology - much recommended, but a long read - is on my site, and is indeed what originally lured me into studying psychology, since I was and am interested in human reasoning of all kinds, and hoped for more of the same:

- William James, The Principles of Psychology
- http://www.maartensz.org/philosophy/James/Principles/PrinciplesTOC.htm

This is a good as it can get, and since this was published it rarely or never got as good, though yes... there is some sensible psychology e.g. by Goffman, Milgram, Miller, Piaget (with qualifications) and some more. But these were all individual people far beyond the level of any ordinary psychologist one will meet as an ordinary patient. He or she may be honest and mean well, but I can't believe he or she got anything like a decent scientific education or knowledge, and if they are thus qualified nevertheless, as may happen, it was mostly by their own efforts.

Best regards,

Maarten.

Hi Maarten-----Some of us neuropsychologists and our cognitive bretheren are sometimes quite good(He says hopefully!!!) neural networks ruleok seriously though a lot of Psychology is about as unscientific as it gets, apart from psychiatry of course, I,m helping my wife with her masters in educational "Research"--OH MY GOD I,ve discovered the cause of our educational decay in one fell swoop This is where all the sociologists are hiding and deliberately undermining the scientific method as inappropiate for the study of education AAARRGH.
On a more positive note perhaps we could start our networking campaign via Martin Samuel and use his various contacts

 

[thefreeprisoner]

No further questions your honour.



Rachel xx

 

[usedtobeperkytina]

Well, I did send my letter to 60 Minutes. I did my part.

Tina