Psychosomatic medicine and ME/CFS.

[TiredSam]

I really do not wish to continue to defend psychosomatic medicine as this is not the thread and I'm not well. I'm focused on the editorial policy of the BMJ. I'm thrilled that so many now realise how the bias has impacted the ME world, and that things have not changed in recent years. In my view, what the BMJ and Lancet do re ME is a scientific scandal. It would not be tolerated by oncologists, gynaecologists, rheumatologists and other specialities. So pleased we're dealing with this issue now. Let's leave psych medicine behind. Don't let that distract from a serious problem.

Sorry if I’m wrong (I’m not wading back through everything) but wasn’t it you who raised the Gupta program and Lightning Process? If you don’t want a thread about the editorial policy of the BMJ to be derailed it’s probably best to stick to the point instead of throwing in references to subjects on which other members feel they should be allowed to question or reply to.

Subjects like the Lightning Process, Gupta program, psychosomatic illness, and personality testing can sometimes lead to forceful expressions of opinion. There have been enough threads on those subjects where you weren’t taking part to demonstrate that the views expressed by some posters on this thread are perfectly typical and nothing to do with you or meant personally.

I can't keep justifying myself.

Not quite sure whether the word “justify” is the most appropriate one to use here. Whatever, claiming to be excused from discussing a matter you raised any further by appealing to status (being a doctor, being a woman entitled to the same perceived easy ride that men get, being ill, being retired) isn’t much of an argument, very many people on here are female, ill, and not working due to illness or retirement. Some are also very well qualified in scientific and other fields. So what? I’ve rarely if ever seen any of those things rolled out as an excuse for refusing to discuss a matter further. They should be irrelevant.

Accusing people who question your statements of “grilling”, venting displaced anger at the BPS brigade, being sexist, doubting your trustworthiness, honesty and competence etc. are non-arguments. Just stick to the subject, I don’t think anyone deserves having those labels thrown at them, it doesn’t serve the debate at all.

I really don’t mean to harp on, but I can’t help noticing that in the same post where you say:

I really do not wish to continue to defend psychosomatic medicine as this is not the thread and I'm not well. I'm focused on the editorial policy of the BMJ.

You also say:

Re role of personality, CBT might help those alleged to have personality traits that work against them.

And that’s the last word anybody is allowed to say on that subject is it?

Sorry if you think I'm having a go, I'm really not. For me PR is a place to exchange information and opinions so how that is done is important. I love some of your posts and think they're a really valuable contribution to the cause. When I disagree with some of your opinions I'd like to be able to post without being accused of grilling, venting or sexism, and if I am I feel entitled to reply to that.

 

[Aurator]

I've compared ME and hysteria in a paper, published in Meeting Place years ago, and ME has none of the characteristics associated with mass hysteria.

Yes, unfortunately that's not necessarily the position of an influential group of UK psychiatrists, which was my point. And my understanding is that they have not felt it necessary to rule out infections, as you claim; infection, according to their model, does not have to be the sole explanation for the patients' symptoms.

 

[EllenGB]

Yes, unfortunately that's not necessarily the position of an influential group of UK psychiatrists, which was my point. And my understanding is that they have not felt it necessary to rule out infections, as you claim; infection, according to their model, does not have to be the sole explanation for the patients' symptoms.

It started with hysteria as in Wessely, Psychol Med 1987. As someone else remarked, he regards CFS as somatisation par excellence. Infections are limited to triggers only. I can't recall them implicating infection in the chronic phase but someone can correct me on that, I'm sure. I think it is a psychological model really.

 

[EllenGB]

Sorry if I’m wrong (I’m not wading back through everything) but wasn’t it you who raised the Gupta program and Lightning Process? If you don’t want a thread about the editorial policy of the BMJ to be derailed it’s probably best to stick to the point instead of throwing in references to subjects on which other members feel they should be allowed to question or reply to.

Subjects like the Lightning Process, Gupta program, psychosomatic illness, and personality testing can sometimes lead to forceful expressions of opinion. There have been enough threads on those subjects where you weren’t taking part to demonstrate that the views expressed by some posters on this thread are perfectly typical and nothing to do with you or meant personally.



Not quite sure whether the word “justify” is the most appropriate one to use here. Whatever, claiming to be excused from discussing a matter you raised any further by appealing to status (being a doctor, being a woman entitled to the same perceived easy ride that men get, being ill, being retired) isn’t much of an argument, very many people on here are female, ill, and not working due to illness or retirement. Some are also very well qualified in scientific and other fields. So what? I’ve rarely if ever seen any of those things rolled out as an excuse for refusing to discuss a matter further. They should be irrelevant.

Accusing people who question your statements of “grilling”, venting displaced anger at the BPS brigade, being sexist, doubting your trustworthiness, honesty and competence etc. are non-arguments. Just stick to the subject, I don’t think anyone deserves having those labels thrown at them, it doesn’t serve the debate at all.

I really don’t mean to harp on, but I can’t help noticing that in the same post where you say:



You also say:



And that’s the last word anybody is allowed to say on that subject is it?

Sorry if you think I'm having a go, I'm really not. For me PR is a place to exchange information and opinions so how that is done is important. I love some of your posts and think they're a really valuable contribution to the cause. When I disagree with some of your opinions I'd like to be able to post without being accused of grilling, venting or sexism, and if I am I feel entitled to reply to that.

You are having a go. You are wrong in your analysis. I'm not a doctor.

 

[Valentijn]

Meghan Arroll published a study on the LP.

Presumably while she was with Optimum Health Clinic, since they're heavy on those types of therapies? I've read a couple of the papers she wrote while there, and they seemed pretty typical of a for-profit clinic promoting itself - moderate hype, little substance.

Do you have a link to a full article where she specifically discussed LP? I can't find them on Google Scholar ... just an abstract "Association of Neurolinguistic Programming" website. I do recall reading her psychosomatic ME/CFS thesis and being similarly unimpressed: basically that it should be treated like a psychosomatic disorder, but with nutrition and such thrown in to keep the patients happy. And I was even less impressed when the discussion of her thesis on this forum was soon followed by her university blocking public access to it based on the author's request.

Anyhow, nothing I've seen from Arroll thus far is even mildly persuasive.

 

[Valentijn]

You are having a go. It's unfair. You believe what you want to and if you blame me for what's happened, that's up to you. I'll take note of you and those who like this and accept you don't respect me.

No one is having a go. You expressed some opinions which some people disagree with, and wanted to discuss. Your response was that we shouldn't disagree with you because you're an expert. But as ME patients, I'm afraid we're particularly unenamored with any argument relying upon Appeal to Authority.

When you appear to dismiss the contrary opinions of others because we lack qualifications, that, however, is disrespectful. We have intelligence and a lot of awareness of the relevant literature, and it can feel like that is being dismissed out of hand.

I dare say that we all value your contributions to science and ME advocacy, but that's not a reason to expect either unquestioning agreement or silent obedience from us. We discuss things we disagree about so that we can understand them better, learn something new about the subject, and maybe even reach a different opinion.

 

[TiredSam]

I wonder if the male physicians get a similar grilling.

I took this to mean you were a female physician, my mistake.

I'll take note of you and those who like this and accept you don't respect me.

I'm sorry about that because I do respect you. Whatever, I've said my piece and I won't be having a go at you again. As you say, this thread is about the BMJ editorial.

 

[EllenGB]

No one is having a go. You expressed some opinions which some people disagree with, and wanted to discuss. Your response was that we shouldn't disagree with you because you're an expert.

No, it wasn't. But there's a lot of challenging and little recognition of my knowledge and tha tis hard.

But as ME patients, I'm afraid we're particularly unenamored with any argument relying upon Appeal to Authority.

That is my impression but it does not mean you can lash out (due to frustration) at someone with expertise and who is on your side. Which is what I feel has happened.

When you appear to dismiss the contrary opinions of others because we lack qualifications, that, however, is disrespectful.

I havn't. Sometimes lack of knowledge means arguments are not persuasive in a debate about ME and psych factors. I've tried to inform so your arguments are stronger. I've tried to reduce generalisations which seem prejudicial.

We have intelligence and a lot of awareness of the relevant literature, and it can feel like that is being dismissed out of hand.

Have you done an audit of everyone's IQ? I fear mine has lowered to average over the time I've been ill.

Without relevant qualifications and going on what others without qualifications write on the internet, you can make mistakes that I have tried to correct. So the next discussion are more informed. We did not land in this mess because everyone had strong arguments. I'm trying to up the standard but you don't have to review your ideas based on info from me if you don't want to.

I dare say that we all value your contributions to science and ME advocacy, but that's not a reason to expect either unquestioning agreement or silent obedience from us.

I don't. It's so not true.

We discuss things we disagree about so that we can understand them better, learn something new about the subject, and maybe even reach a different opinion.

Fine if the info has a reliable sources. Interesting that you feel I need to learn more (about ME, I assume). Not seen that one directed at Drs Edwards and Shepherd. There are only one or two who accuse me of things I haven't said or done. I appreciate that most are respectful and discussion is constructive.

Can we please note the moderator's request and get back to Dr Smith, if you have a view?

 

[Old Bones]

We don't "know" this at all. It is a myth. I for one was a lazy adolescent when I became ill.

Actually, we do know that "many" (which implies "not all") were accomplished and successful pre-illness. How many as a percentage, I have no idea. But, this reality can't be disputed after considering the number with advanced university degrees, and/or those who held very responsible work positions in a variety of fields.

Here's another wrinkle, though. I first became ill as an adolescent, and although diagnoses of ME and CFS weren't being made at that time, it seems likely this is what I had then as well, based on symptoms. Although I wouldn't have described myself as a lazy adolescent, I certainly didn't have the drive I developed as an adult. Nor did I have the commitments, financial and otherwise, that kept me pushing for too long. Instead, I stayed home from school, stopped all other activities, and rested for many months. I've often wondered if this is why I made what seemed to be a full recovery as an adolescent, but haven't significantly improved after becoming ill in my 30's. Even more baffling . . . why did the adolescent, unhappy in her new school after a recent move, improve; while the adult, with a life she loved (great husband, job, home, friends, etc.) worsen? There's certainly no "one size fits all" pattern, or interpretation, with respect to these illnesses.

 

[Valentijn]

Not true. But without relevant qualifications and going on what others without qualifications write on the internet, you can make mistakes that I have tried to correct.

You're assuming that people without those qualifications aren't capable of rationally assessing the information available and having a legitimate opinion about it. And while some people without official qualifications struggle to make a coherent argument, many others have a great deal to offer.

It'd be a great waste to discount their voices, and that is exactly what has been happening in the ME/CFS arena for decades. As someone with ME, no doubt you have been hit by the same prejudice, with or without your qualifications. I think it's a shame that you would advocate the same attitude that has harmed all of us for so long, even if you seem to except yourself from the "patients to be ignored" group.

Fine if the info has a reliable source i.e. not UKIP type generalisations.

Equating rational disagreement with inflammatory bigoted political diatribes is not an impressive way in which to support your arguments.

Interesting that you feel I need to learn more? Not seen that one directed at Drs Edwards and Shepherd.

I don't know. Are you a supreme being who has already learned everything? I assumed you are human like the rest of us. My apologies if I was wrong about that.

I doubt there would be a need to direct such a comment at @Jonathan Edwards or @charles shepherd in this context since neither of them seem to think that they have nothing left to learn, or that patients aren't allowed to disagree with them until they get suitable qualifications. And, FYI, they both get plenty of disagreement here on the forum, some of it quite heated. Usually both sides seem to learn a bit from it, though sometimes it's just how to agree to disagree after hearing each others arguments.

 

[EllenGB]

If you don’t want a thread about the editorial policy of the BMJ to be derailed it’s probably best to stick to the point instead of throwing in references to subjects on which other members feel they should be allowed to question or reply to.

I would have mentioned this only in response to someone's point. I did not derail.


Accusing people who question your statements of “grilling”, venting displaced anger at the BPS brigade, being sexist, doubting your trustworthiness, honesty and competence etc. are non-arguments.

Not in my view.

Short answers may reflect fact that it answers a question but it's off topic.

Sorry if you think I'm having a go, I'm really not.

Well, I disagree.

For me PR is a place to exchange information and opinions so how that is done is important. I love some of your posts and think they're a really valuable contribution to the cause. When I disagree with some of your opinions I'd like to be able to post without being accused of grilling, venting or sexism, and if I am I feel entitled to reply to that.

Look forward then to posts that don't ask me to justify or challenge my knowledge time after time. Now back to the BMJ. mind you, all has been said, I think. Have passed on read Report to some individuals and would like to post it here but it's a pdf and can't see space for them. but it's blimmin good.

 

[EllenGB]

You're assuming that people without those qualifications aren't capable of rationally assessing the information available and having a legitimate opinion about it. And while some people without official qualifications struggle to make a coherent argument, many others have a great deal to offer.

It'd be a great waste to discount their voices, and that is exactly what has been happening in the ME/CFS arena for decades. As someone with ME, no doubt you have been hit by the same prejudice, with or without your qualifications. I think it's a shame that you would advocate the same attitude that has harmed all of us for so long, even if you seem to except yourself from the "patients to be ignored" group.

Equating rational disagreement with inflammatory bigoted political diatribes is not an impressive way in which to support your arguments.

I don't know. Are you a supreme being who has already learned everything? I assumed you are human like the rest of us. My apologies if I was wrong about that.

I doubt there would be a need to direct such a comment at @Jonathan Edwards or @charles shepherd in this context since neither of them seem to think that they have nothing left to learn, or that patients aren't allowed to disagree with them until they get suitable qualifications. And, FYI, they both get plenty of disagreement here on the forum, some of it quite heated. Usually both sides seem to learn a bit from it, though sometimes it's just how to agree to disagree after hearing each others arguments.

Off topic with unfair interpretations.

 

[Cheshire]

But, this reality can't be disputed after considering the number with advanced university degrees, and/or those who held very responsible work positions in a variety of fields.

That is due to internet distortion. Those who get a diagnosis and then exchange about it on the internet are not typical patients.
In reality, epidemiological studies show quite the opposite. We are not representative!

A community-based study of chronic fatigue syndrome.

Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S

Arch Intern Med

1999


The highest levels of CFS were consistently found among women, minority groups, and persons with lower levels of education and occupational status.

http://www.ncbi.nlm.nih.gov/pubmed/10527290


And there are other studies whose conclusions are similar.

 

[Undisclosed]

Moderator's note -- the last 52 posts relate to an off-topic discussion on this thread. The thread was supposed to be about the BMJ and became about psychosomatic medicine. Therefore, the thread was split and any comments relating to psychosomatic medicine can be posted here.

 

[TiredSam]

But we should definitely take your latter suggestion on board - it is possible that some are questioning you because they feel frustrated that they can't grill White, Wessely, Chalder et al.

I'm sorry but I have to disagree with this, because I see a parallel to a technique I find particularly offensive and has been used to dismiss and abuse ME patients time and again, for example by doctors, the PACE researchers, our friends in the BPS brigade etc.

When an ME patient dares to question things such as the whether their illness is psychosomatic, whether their avoidance of exercise is based on fear which they must be helped to overcome etc, their questioning, or opinion if they've dared to express one, is simply psychologised, for example as an illness-maintaining belief, before being dismissed.

Here we have posters who question psychosomatic illness being told they are simply venting misplaced anger. If that isn't psychologising and dismissing, what is?

 

[TiredSam]

Next BPS parallel - portraying those who don't agree with you as grilling, sexist, "lashing out" etc. What next, vociferous? militant?

 

[TiredSam]

Look forward then to posts that don't ask me to justify or challenge my knowledge

I beg your pardon?

 

[Snow Leopard]

Actually, we do know that "many" (which implies "not all") were accomplished and successful pre-illness. How many as a percentage, I have no idea. But, this reality can't be disputed after considering the number with advanced university degrees, and/or those who held very responsible work positions in a variety of fields.

That is an interesting hypothesis, but I haven't seen any scholarly research to justify that claim.

Instead, I stayed home from school, stopped all other activities, and rested for many months. I've often wondered if this is why I made what seemed to be a full recovery as an adolescent, but haven't significantly improved after becoming ill in my 30's. Even more baffling . . . why did the adolescent, unhappy in her new school after a recent move, improve; while the adult, with a life she loved (great husband, job, home, friends, etc.) worsen? There's certainly no "one size fits all" pattern, or interpretation, with respect to these illnesses.

Because relapse-remitting is one of the initial onset patterns. It's possible that nothing you did caused or perpetuated the remission or later relapse. It could have all been due to factors beyond your conscious control.

I had such a pattern in my first few years. I had a supportive family and I did rest. It didn't stop me from becoming permanently ill.

 

[EllenGB]

where is the psyche? Can you see the psyche on an MRI scan? Can you measure it objectively? No, conclusion: the psyche does not exist. So what are we talking about in psychology. It is not a science but an ideology or philosophy. psychotherapy and CBT is not falsifiable. Sexual abuse in childhood is a popular link that will be attached to almost all unexplained somatic complaints. Psychology is a waste bin for doctors to dump all unexplained somatic complaints. Psychology is taken too seriously. It is a very dangerous ideology!

Psychology is a social science and not dangerous. I get very concerned when I read things like this. Terrorism is dangerous. Anti-semitisism is dangerous. Psychology is a social science and while I regard many studies as not as good quality as those you find in say, immunology, and some as a waste of time (studying behaviour in pubs), I can't think of evidence of it being dangerous. Poor science is and there's poor science all over the place. I don't think I can contribute more so am leaving this thread. I wish all a healthier 2016.

 

[TiredSam]

Next BPS parallel - portraying those who don't agree with you as grilling, sexist, "lashing out" etc. What next, vociferous? militant?

Sorry, should have added Cyberbully to the list:

Playing the victim is another BPS parallel I find manipulative and offensive.