CFS etc over on Bad Science

[natsci]

Either:

1: A genuine interest in CFS

2: They've realised a lot of people seriously ill with CFS struggle to deal with the uncertainty that surrounds the condition, so think it will be ammusing to kick them arround for a bit.

3: Really 2, but they'll tell themselves it's 1.

Some of the claims made by people here deserve a bit of a kicking, but I think that having to deal with someone who has no understanding or experience of the condition is unlikely to go well. Maybe it will be useful though. I'm kind of curious how it will go, in a morbid sort of way.

*sigh*

What a wonderful default. Maybe if you assume 1), you might have more success communitcating. ME should be more widely known about than it is, but if your standard opinion is 2), I can see why most people don't bother.

 

[Gerwyn]

Psychiatry has its issues, surely, but it can be literally a lifesaver for mentally ill people. The progress made in psychiatry in the last 50 years has been remarkable.

I have a lot of mental illness in my family and have seen first hand the benefits of psychiatry and psychiatric medication can do to help people. What a small subset of psychiatrists have done with ME/CFS is unconscionable, but, it doesn't mean the profession as a whole is useless or unscientific.

It sounds like a lot of the people at Bad Science are arguing that we simply do not want to accept that we are mentally ill. There's nothing shameful or bad about being mentally ill, it's simply not applicable. Treating ME/CFS with an antidepressant is like treating schizophrenia with an antibiotic. In truth, I would prefer to have a somatic disorder to having ME/CFS simply because it would be treatable.

I question whether psychiatry itself has made any progress.They have borrowed treatment schemes developed by psychologists.They have also been given reasonably effective drugs by the pharmaceutical industry.Y+they have howver created nothing themselves.Even their terminology has its origin within psychology or psychoanalysis.Somatoform for example is classically Freudian and actually meant to be a metaphor.They have however created a great deal of mental illness wher none existed.Presumably by the time DSM 10 comes about we will all suffer from a psychiatric condition.Then the lunatics will well and truly be in charge of the asylum.

At this moment in time there are no proven treatments for a somatoform disorder That is why DSM 5 is such a poinless waste of money converting medically unexplained symptoms into psychiatric symptoms of unknown origin with no cure. That is very typical of psychiatry,s "contribution" to medical science

You are right though there are a good number of kind and well meaning members of the breed

cheers
Gerwyn

 

[Esther12]

*sigh*

What a wonderful default. Maybe if you assume 1), you might have more success communitcating. ME should be more widely known about than it is, but if your standard opinion is 2), I can see why most people don't bother.

I didn't assume 2.

Maybe if you didn't assume so much about others assumptions you'd find it easier to communicate, although perhaps harder to play-out your 'world-weary skeptic surrounded by loons' role. *sigh*

 

[xanadu]

I read some more of his posts and Bad Science, especially the ones regarding Ean Proctor. I don't know what really happened with Ean. MJ rejects Ean's own words in favor of an article citing a medical investigation in a "peer reviewed" paper. It's here if anyone wants to read it.

Yes, mj rates a spin piece by a Wessely crony above the complainants.
http://www.meactionuk.org.uk/Caroline_Richmond_Deja_vu.htm

 

[Min]

Dr Crippen's tired old drivel about M.E. from the Guardian (where Ben Goldace writes) is being now rehashed on the BS board

I started this thread on Badscience because on the main thread about the Sarah Myhill GMC complaint new members were derailing the thread and making it unwieldy by posting on unrelated or distantly related subjects rather than starting new threads as tends to be the norm. Wessely had been brought up several times which is why he is one of the new threads I started.

If you like I can start up a new thread on the psychiatric paradigm (presumably you mean the paradigm in general rather than with regards to ME/CFS). Or you can start up one yourself if you wish.

All the best

MIKE

thanks but no thanks mate - we're fresh out of the photos of animals' genitalia and swear words encouraged on your board where there are pages and pages of deliberate taunting and lampooning of sick people , and where only the misinformation that Myalgic Encephalomyelitis (classifed as a neurological illnes by the WHO since 1969) is somehow a somataform disorder seems acceptable to the closed mind regular members/jeerers

we are well aware that new threads about M.E. have been deliberately started there just in order that the lampooning can continue - (a new one 'How many conditions are psychosomatic?' has just popped up where everything except housewife's knee now seems to be a somatoform disorder)


take it somewhere else mate, we are a support group

 

[Min]

Why are you people coming from bad science to post on this forum?

They're pretending to be concerned and intererested, and then taking quotes from here to post there so they can continue their jeering at and taunting of sick people. Reading their forum is like swimming in a sewer.

 

[MEKoan]

What Min said, "tired old drivel" indeed.

and what Esther said:

Maybe if you didn't assume so much about others assumptions you'd find it easier to communicate, although perhaps harder to play-out your 'world-weary skeptic surrounded by loons' role. *sigh*

This bear finds the baiting very boring.

Peace all,
k

 

[Gerwyn]

I guess I wanted to see things from the other side. Once I'd read this thread I thought it would be irresponsible of me not to correct those points.
Since you would be welcome on Bad Science, if you were willing to read the thread before posting, and when stating 'fact' supplying evidence (generally in the form of published peer-reviewed papers from a reputable journal - as of the type found on search engines like PubMed), I hope you will extend the same courtesy to me here.

Edited to add: And, whilst I understand the principle of defamation, why is that statement defamatory? Defamation is ''expressly stated or implied to be factual'', none of that quote is.

I,m afraid you dont know your law.Scientific fact is always found within scientific journals with a reputable peer reviewed process.this is what makes a journal reputable ,Pubmed publishes a range of papers some with scientific content and some not.Purely qualitative antipositivistic studies are being increasingly peer reviewed using totally subjective criterea. The majority of studies carried out within psychiatry fall into this latter category.In these instances peer reviewed is no guarantee of quality or sadly objectivity.Unfortunately people who are not scientists dont often realise the difference

 

[Gerwyn]

I started this thread on Badscience because on the main thread about the Sarah Myhill GMC complaint new members were derailing the thread and making it unwieldy by posting on unrelated or distantly related subjects rather than starting new threads as tends to be the norm. Wessely had been brought up several times which is why he is one of the new threads I started.

If you like I can start up a new thread on the psychiatric paradigm (presumably you mean the paradigm in general rather than with regards to ME/CFS). Or you can start up one yourself if you wish.

All the best

MIKE

I think the thread on psychiatry can be summed up in one sentence

Paradigm Paralysis

Perhaps the greatest barrier to a paradigm shift, in some cases, is the reality of paradigm paralysis: the inability or refusal to see beyond the current models of thinking [2]. This is similar to what psychologists term Confirmation bias.

I think so therefore it must be true.Psychiatrists interpret everything they experience in accordance with their biases.ironically considering their purported expertise they are not aware of this!

 

[Esther12]

I just want to stand up for the BSers a bit here.

I think that a lot of the claims made about CFS (by patients and doctors) are inaccurate and would benefit from careful criticism. Some people here can end up stuck in their own bubble, assuming that anyone who disagrees with them must have some hidden agenda, and open, honest debate is always a good thing.

I'm just worried that if you come to a forum for CFS patients, who are dealing with a very difficult condition and have little access to useful conventional medicine, that you need to be willing to think very carefully about why people think and behave as they do, and what a 'normal' response would be in such conditions. I think CFS patients often come across as a bit barmy because we are in such a difficult position, and people have an instinctive preference for treating unfortunates dismissively. (Check out the Just World Hypothesis and its ilk). CFS patients have been badly let down by conventional medicine, so many patients have ended up embracing some of the peculiar alternatives available - I don't think this situation is as amusing as some on the BS board seem to.

I'd really like to see a respectful and honest discussion take place here. But I think it's unlikely to occur. It would require a lot of work and understanding from the BSers, and from what I've read on their board I don't think they're really that interested.

(I suppose everyone has varying standards here. A lot of the points I've made here are very similar to criticisms people have made of me for my own brash mannerisms - and I've been ill with CFS for eight years now, I really have thought about it a lot!)

 

[Dx Revision Watch]

...All the best: You are one hell of a woman, if you don't mind my French!

My husband says I am to tell you that I am the "woman from hell" - not "one hell of a woman". But nevertheless, I accept your complement graciously, Maarten.

Had "Dr Crippen" (and likewise a number of apparent medical professionals who commented on his ME related blog postings using similar disparaging terms) not been writing and commenting under the cloak of anonymity, he (and they) would presumably have taken care not to bring his (and their) profession into disrepute.

Suzy

 

[Badsciencemonk]

Originally Posted by Badsciencemonk
I started this thread on Badscience because on the main thread about the Sarah Myhill GMC complaint new members were derailing the thread and making it unwieldy by posting on unrelated or distantly related subjects rather than starting new threads as tends to be the norm. Wessely had been brought up several times which is why he is one of the new threads I started.

If you like I can start up a new thread on the psychiatric paradigm (presumably you mean the paradigm in general rather than with regards to ME/CFS). Or you can start up one yourself if you wish.

All the best

MIKE
thanks but no thanks mate - we're fresh out of the photos of animals' genitalia and swear words encouraged on your board where there are pages and pages of deliberate taunting and lampooning of sick people , and where only the misinformation that Myalgic Encephalomyelitis (classifed as a neurological illnes by the WHO since 1969) is somehow a somataform disorder seems acceptable to the closed mind regular members/jeerers

we are well aware that new threads about M.E. have been deliberately started there just in order that the lampooning can continue - (a new one 'How many conditions are psychosomatic?' has just popped up where everything except housewife's

knee now seems to be a somatoform disorder)


take it somewhere else mate, we are a support group [/QUOTE]

I started thre treads that I personally started for my stated reasons and no other. I do agree that I often find the use of language on the site unnecessary and I think you have misread the consensus of opinions but I suppose you are entitled.

However, many would say that the tone of your reply to me was a little rude but I accept feelings are running high

Edited to apologise for sloppy use of quote tags

 

[Knackered]

I started thre treads that I personally started for my stated reasons and no other. I do agree that I often find the use of language on the site unnecessary and I think you have misread the consensus of opinions but I suppose you are entitled.

However, many would say that the tone of your reply to me was a little rude but I accept feelings are running high

Edited to apologise for sloppy use of quote tags

You're inviting very sick people on this forum to post on a forum where a great number of people were jeering and making fun of people with this illness, what do you expect?

 

[Angela Kennedy]

I started this thread on Badscience because on the main thread about the Sarah Myhill GMC complaint new members were derailing the thread and making it unwieldy by posting on unrelated or distantly related subjects rather than starting new threads as tends to be the norm. Wessely had been brought up several times which is why he is one of the new threads I started.

If you like I can start up a new thread on the psychiatric paradigm (presumably you mean the paradigm in general rather than with regards to ME/CFS). Or you can start up one yourself if you wish.

All the best

MIKE

Thank you for clarifying your reasoning behind the threads starting Mike. You should still be made aware though, at least for your own information, of the effect it seems to have had (ME/CFS community being misconstrued or even misrepresented as preoccupied with Simon Wessely).

Thank you but I will pass on going over to BS. Firstly - because of the reasons already given in this thread by myself and others. I am suprised and dismayed at the blind acceptance of the 'woo' of psychogenic explanations/ 'mind-body healing' over on BS. I'm shocked (have been for some time now) at how people have failed to apply their self-lauded critical faculties on this one, even up the ranks to your guru, Ben himself. One of our forum members here, 'Biopsychobabble', has already written a completely appropriate comment on this thread about the problems on BS over these issues.

Secondly - my work in this area is developing well in an academic fashion, and I do not want to waste time trying to correct the same old misconceptions about the community and its critiques of the 'psychiatric paradigm', which has been frankly relentless and demoralising (jeez - the old "you look down on mental illness sufferers" inferences! Do you KNOW how OFTEN the community is faced with THAT canard?) followed by trying to defend against ad hominem, which is also relentless, and the appeals to authority - which are often fallacious (my evidence trumps your evidence games etc.).

Plus the comments about victims such as Sophia Mirza, Ean Proctor etc. are horrifying. We are talking about people's lives and reputations here. I think BS has ethical problems, frankly.


If you take this as a cop-out, then so be it.

 

[Badsciencemonk]

(jeez - the old "you look down on mental illness sufferers" inferences!

Actually I have made a couple of posts on that subject but it was largely to do with specific new users - shodan1 springs to mind - rather than the cfs community in general.

As far as your other comments go I would like to respond but if I do I will be interpreting other badsciencers' posts for them which I think would be confusing and counterproductive.

I actually know very little about CFS and am trying to educate myself which is another reason I set up separate threads so people could separate different subjects from the whole Myhill situation.

You will note I did leave a post on the main thread suggesting people moderate their invective but boys will be boys! I did suggest gentle mickey taking (but not about peoples' illness)

By the way Ben is not my guru. If I was going to treat him like one he would need a nice bald head like mine rather than those silly curls!

Joking aside I hope I do not need to agree with you on all your points for me to wish you all well. I hope when everything has calmed down there will be more constructive debate on tis everywhere.

All the best

Mike

 

[Adam]

Pointless

Sorry, skipped three pages of this thread when I realised what was happening here. This thread (like a few others we have had) is

POINTLESS

The best thing to happen to this thread is me saying that it is pointless and...I have a point which is not pointless, because there is a point to it, which is things that are pointless do not have a point. On the other hand points are not pointless. I mean, I could go on, but then that would be pointless and I've just run a bath too.

This is pointless but I like doing it anyway

:Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue:

Of course you could argue that me using an emoticon, known as retro tongue DOES have a point to it.

It either shows I am terribly immature for my age, or fed up, or annoyed, or just plain silly. All of which would suggest that there probably ISN'T a point to me representing my feelings, and the way in which I am doing so is pointless.

I think I have a point there.

Hmm.

Perhaps my point is that even pointless stuff has a point to it, because...

by making a point in a rather pointless fashion does in fact, get a point across.

I'll leave everyone to make their mind up if I have a point or not.

And finally an anagram...

MLEEVUKCIPORTENIUSRIMIAURONE

G'night all

 

[Adam]

Thread closed

thread closed

thread closed

 

[rosamary]

No. We need more rope!

 

[Adam]

No. We need more rope!

I don't do knots. I don't believe in them.

On the other hand...

 

[Adam]

You can get that at BS, in plentiful supply or else use a whale's penis.

I'm with Adam on the grounds (1) there be trolls here (2) who are also by their own admission neither patients nor advocates while (3) are clearly being not even supportive: Go play at BS, it exists for that purpose.

Maarten.

Quite so. Quite so.

And don't forget folks trolls are not as stupid as you might think they are.

In the words of the late great Bard of Kilburn, to whom my current signature is dedicated...

"There ain't half some clever B**T**RDS"