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ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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Please post here if you're a medic who thinks CFS is primarily psychological!

Discussion in 'General ME/CFS News' started by Esther12, Mar 26, 2010.

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  1. starryeyes

    starryeyes Senior Member

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    I appreciate hearing how people feel about this and I understand where you are coming from. I don't think we should be inviting the enemy to explain themselves to us because that will just give them a platform here for their harmful beliefs and I'm afraid that there are some people here who would even agree with them.

    This forum should be a safe haven for those of us who are suffering with ME/CFS.

    What does your Sig translate to in English, Alesh?
  2. Esther12

    Esther12 Senior Member

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    CBT/GET is so vague, and gives them so much room to hide, but psychologisers and psycholobby were so clearly terms created by their opponents. There must be a better word we could adopt?

    I've just been using a reverse dictionary, and 'quack' kept coming up. I don't think they'd embrace that one either.

    You what?

    I've never said I speak for the forum - I'd have thought it's quite clear to everyone that I do not. But I do speak for myself, and will continue to do so, even if it doesn't fit in with what others would like to hear.

    I've been pretty consistently interested in this discussion, but there are topics surounding CFS which I'm not terribly interested by. When I think people are criticising me unfairly I can get sucked into ten page discussions about those bits too.

    @Alesh - I did actually continue your Holocaust comparrison - but it took me to strange places, so I've had to delete it.

    It's not a good idea to insulate yourself from arguments you worry might be too compelling! If they really were able to explain there position convincingly, I'd be happy to accept I was wrong. I don't really see how this could happen, and this isn't something I'm concerned about, but we should always try to stay open to the possibilty that we got something moronically wrong.

    I under-estimated how many people saw the forum as a safe haven, and how they could see discussions like this are a breaching of their own sense of security, even though they could just choose to ignore it. I think that there's a danger in seeing this forum as both a safe haven, and a place to educate and inform patients and others about CFS- there will be something of a tension between these two aims so long as so much about the nature of CFS remains uncertain.
  3. Esther12

    Esther12 Senior Member

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    I've still not found a phrase I'm happy with, but Karin Spaink (http://en.wikipedia.org/wiki/Karin_Spaink) created the term orenmaffia ("mind mob") that's now in the Dutch dictionary - a preferable derrogatory label imo.
  4. Alesh

    Alesh Senior Member

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  5. Angela Kennedy

    Angela Kennedy *****

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    I think Esther, that you are confusing the need for a safe haven from bullcrap with a fear of 'compelling arguments', if you think the psychiatric paradigm provides those! I certainly don't.

    The problems with the current obsession by certain doctors with psychogenic explanations for 'CFS' is that those explanations are incoherent and untenable, AND that they have led to dangerous beliefs about the illness, leading to the dangers of psychogenic dismissal of serious somatic illness, and inappropriate, 'treatments' being proffered. Sadly these explanations have been seductive to some - doesn't mean they are right. My position is that they are based on the seductive but flawed belief system of 'magical voluntarism' which has led to the (il)logical extreme of 'mind over matter' beliefs. among other flawed reasoning.

    When people here want a safe haven from those professionals who spout, to some, incoherent bullcrap (as a a synonym for fatally flawed reasoning - and I think Orla's recent postings on the Liverpool CFS/ME clinic's line of reasoning has delineated that extremely well - thank you Orla!) this does not mean they are afraid the incoherent bullcrap is right, or 'compelling'. They just haven't got the energy or time to 'debate' with long reams of the stuff. Even I, a non ME/CFS sufferer, have been unable to answer all your claims on this thread that I find flawed, for example, because of lack of time or energy. You, for all i know, may then think it's because you are right. If some proponent of psychogenic theories for CFS comes on and spouts reams and reams of authoritative but incoherent deliberations, it is likely to make many people horrified, but unable to address each point. the ream-writing psych guy (or gal) then wins the point by default, at least in their own minds. This principle seems to work well in the peer-reviewed literature as well. Get reams and reams of flawed claims published enough- it takes gargantuan effort to debunk, especially by people not considered peers (patients and their supporters), then loads of those claims get through and accepted as 'fact'.

    This is the issue- it really is not about psychogenic explanations being 'compelling' - far from it!
  6. Esther12

    Esther12 Senior Member

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    If they don't have any compelling arguments then it seems strange to say it would be dangerous to have them post here as they would convince other members.

    I've not found any of their arguments to be complelling - but I'd still be interested to hear them speak for themselves. Maybe I've misunderstood something.

    On-line forums seem to me to be the ideal place for tired patients to be able to engange in this sort of discussion. We can take as long as we wnat to reply, avoid answering when we feel especially ill, have access to a clear log of what's been said... sounds ideal for CFS. I think this forum would be far less likely to leave claims unchallenged than most of the places where the psychologisers present their ideas.

    It's not your lack of replies which make me think I'm right.
  7. Sing

    Sing Senior Member

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    Hi Esther,

    I bet you would be very capable of arguing successfully against those people/positions. Maybe you could go after them on their turf, instead of here, and report back. People like me, not up for a direct fight with them, could "watch", and maybe cheer, from the sidelines.

    Angela, I agree with a lot of what you wrote. I think your analysis also applies to those of the "spiritual" people, the alternative practitioners or transpersonal psychologists, who regard the cause of the disorder as mental. Maybe it is a higher order of mental, of thoughts which are superconscious or unconscious, instead of conscious ones--but still some of them insist that this is causative rather than physical dysfunction or breakdown. By their logic really, all disease, degeneration and death are caused by wrong thoughts, not just our illness. But I don't find such a view very compassionate or helpful. If the only place we operated was on the spiritual plane, fine, but we also inhabit bodies and have to deal with physical reality, and this can be limiting and painful--to say the least!

    Sing
  8. Mithriel

    Mithriel Senior Member

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    Esther said

    I find this incredibly offensive. How dare you assume we do not want this thread for the reasons you give. If you can't understand the science fine, but don't make assumptions about the rest of us.

    The idea of a psychological basis of ME is just plain wrong. Saying you have an open mind can be an excuse for laziness. Find out the facts. Go and read about the epidemics and history, look at the science, read the documents by Professor Hooper and Margaret Williams, then you might be ready for a proper debate.

    Mithriel
  9. Gerwyn

    Gerwyn Guest

    It's not a good idea to insulate yourself from arguments you worry might be too compelling!

    A compelling argument made by a proponents of the view that ME is a psychological disorder would be about as likely as creationists aknowledging the primacy of evolution.


    ! If they really were able to explain there position convincingly, I'd be happy to accept I was wrong.

    They could explain their position very convincingly Stalin and Gobbels were also very good at that but only a fool would believe them.Are you really saying that you are open to be convinced that ME/cfs is a psychological condition by people using words!?



    I do speak for myself, and will continue to do so, even if it doesn't fit in with what others would like to hear.

    The problem is that you dont speak for the facts



    I don't really see how this could happen, and this isn't something I'm concerned about, but we should always try to stay open to the possibilty that we got something moronically wrong.


    You may have got something moronically wrong.The psychiatrists have certainly got everything moronically wrong .There is however not even a remote possibility that we have got biomedical causation of ME wrong .It is a fact.

    I under-estimated how many people saw the forum as a safe haven

    .I think you underestimated people's intelligence
  10. Koan

    Koan Be the change.

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    That would be one possibility, yes. It is the most appealing (least objectionable) one so let's go with it, shall we.

    I give you the benefit of this possibility.
  11. Angela Kennedy

    Angela Kennedy *****

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    'Tired patients'. Really? They're tired? Is that your own worst problem? Tiredness? Do you think that's why ME/CFS sufferers can't answer your own long deliberations? They're 'tired'?

    I think you may really not understand the high levels of physiological impairment many people diagnosed with 'CFS' or 'ME' are actually suffering with, if you think their problem, after what I and others have explained in detail to you, is that they are 'tired'! It's rather like claiming a stroke victim, or chemotherapy undergoer, or comatose patient, is 'tired'.
  12. starryeyes

    starryeyes Senior Member

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    Oh very interesting Alesh. So you're stating that psychologizing ME must be destroyed? Is that correct?
  13. Esther12

    Esther12 Senior Member

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    @sing: Wouldn't it be great if they had a public forum where they were all casually discussing their ideas in public? Sadly, academic journals, etc, don't really seem suitable and trying to enter into a private correspondence is quite different to what I had in mind. It might be the best of a bad lot though.

    You see, this is why a forum like this is so good for these sorts of discussions. When someone quotes you out of context there's a clear paper trail that anyone who wants can follow back. The post Mithriel quoted from was clearly a reply to someone else saying they thought that others here would end up being convinced by the orenmaffia, and it wasn't even an especially daring one.

    You can still find it incredibly offensive if you want though.

    What debate do you think I need to prepare for? There's nothing of substance in your post to get going with.

    1) Surely a better analogy would be 'as likely as a creationist presenting a convincing argument'.

    2) 'People using words' is not much of a limitation. Words are pretty good at communicating ideas and information. I think they can be very convincing - although I've never found Stalin's of Goebbel's to be. Which of their arguments do you find compelling?

    3) What facts have I contradicted?

    4) The 'fact' that CFS is not a psychological illness does not seem widely recognised. No-one here seems to have access to the over-whelming evidence which proves this fact either. Some people here speak as if Wessely etc are publishing academic papers arguing that the world is flat - it's not that clear cut.

    5) No - I've pretty consistently assumed that people are intelligent enough to distinguish good arguments from bad, to be able to develop and explain their own ideas, to be able to avoid posting things which would serve to discredit CFS patients. I think that we can all sometimes act stupidly, but that we should still proceed on the presumption that are capable of acting sensibly too.

    I am occasionally surprised at how ill some of the people here are. I'm also sometimes surprised at how well some of the people here are. Given the wide range of difficulties that people with CFS suffer from, it's difficult to know how ill each individual poster is.

    I've not spent long imagining why some people don't reply to my posts. It's never even occurred to me actually. Why do you think some people don't reply to your posts?

    I think 'tiredness' is a very significant problem, and there's nothing dismissive about my use of the word.
  14. Angela Kennedy

    Angela Kennedy *****

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    Esther, one problem with your belief that 'tiredness' is a significant problem, is that the words 'tiredness' and 'fatigue' are ubiquitous experiences in both illnesses (including psychiatric conditions) and health. Both terms have been used to select patients for research cohorts that do not have any other signs of organic illness, but then falsely extrapolating to people with serious multi-system dysfunction. In addition, 'tiredness' and 'fatigue' do not begin to explain the dysfunction found in people say, with Canadian defined ME/CFS. In addition, the focus on terms like 'chronic fatigue', by certain psychiatrists, as a wholly incorrect conflation with chronic fatigue syndrome (as a synonym for ME, ICD-10 G93.3- a neurological condition) leads to the belief that tiredness is the only problem in this terrible, neurological condition. This leads to healthy lay people saying to severely impaired patients "I get tired too".

    An absurd and horrifying situation.

    Is this something new to you? I take it you were ignorant of this situation? It's been documented many times though. Would you like me to dig out some references for you that explain more?
  15. V99

    V99 *****

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    I'm only going to comment on this point. Here's a good place to start http://www.meactionuk.org.uk/magical-medicine.htm

    It may be a new presentation of the evidence, but much of the information is not new. By ignoring this level of evidence, and claiming it does not exist, Wessely and others are essentially claiming the earth is flat. As Professor Hopper has asked, what amount of evidence will it take?
  16. Esther12

    Esther12 Senior Member

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    No.

    Just because some people misinterpret these words doesn't mean that I feel any need to stop using them - especially here. Tiredness and fatigue do seem to be significant problems for many of the posters here, and certainly are for me, and I don't feel that this does anything to de-legitimise my own illness.

    I understand that using these terms can play into the prejudices of others, but using other terms allows people to claim we're over-analyzing our symptoms, or exagerating, or one of the other various smears CFS patients face. Damned if you do, damned if you don't.
  17. Gerwyn

    Gerwyn Guest

    To esther

    ) Surely a better analogy would be 'as likely as a creationist presenting a convincing argument'.

    NO

    2) 'People using words' is not much of a limitation. Words are pretty good at communicating ideas and information. I think they can be very convincing - although I've never found Stalin's of Goebbel's to be. Which of their arguments do you find compelling?


    I dont find any propaganda convincing however skillfully disguised

    Words are very good at conveying misinformation and propaganda. Ideas are not facts Words can have multiple meanings skillfull protagonists know this and exploit the fact in constructing very plausible and apparently convincing arguments .I am sure you would find words convincing most people however would want facts.Just because words are convincing it does not make them true



    3) What facts have I contradicted?

    you have not contradicted any facts because you have not used any

    4) The 'fact' that CFS is not a psychological illness does not seem widely recognised. No-one here seems to have access to the over-whelming evidence which proves this fact either. Some people here speak as if Wessely etc are publishing academic papers arguing that the world is flat - it's not that clear cut.

    The fact is not recognised by people with a vested interest in denying it even in the face of overwhelming scientific evidence to the contrary.Some people misdiagnosed with cfs may well have a psychological illness and, in fairness ,they may not be able to understand the science. Indeed such denyers of biomedical causation may not be able to recognise anything at all.I dont think anyone claims that wesselly is publishing academic papers of any kind. As for refernces of biomedical evidence of causation how many do you want.I would offer the references of evidence re psychological causation but I cant there aren't any!

    5) No - I've pretty consistently assumed that people are intelligent enough to distinguish good arguments from bad, to be able to develop and explain their own ideas, to be able to avoid posting things which would serve to discredit CFS patients. I think that we can all sometimes act stupidly, but that we should still proceed on the presumption that are capable of acting sensibly too.

    Its not a question of good or bad arguments but a question of fact versus propaganda.Inviting clever manipulative psychiatrists who are highly skilled in the misuse of words would be acting stupidly whatever the presumption
  18. Gerwyn

    Gerwyn Guest

    I note you dont want to see any facts on this matter.

    It is impossible to exaggerate the absolute literal absence of energy and exhaustion which lies at the core of this illness.

    It is however a simple matter to trivulize the illness by using the word tired.if you understand that using this term plays into the hands of denigrators of our fellow sufferers then why one earth are you using it.
    A great many people with ME cant get out of bed let alone "overanalyze" their symptoms.

    When in a war you dont give ammunition to the enemy
  19. V99

    V99 *****

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    Tiredness is not a symptom. This is what anyone gets when they do a lot, or don't get enough sleep. Or when they canoe for 36 km in one day, or after they have the flu.

    What patients with ME have is entirely different. It effects you differently. It is a symptom of the disease.

    Tirdness implies that everyone in the world experiences this symptom. They do not.
  20. Esther12

    Esther12 Senior Member

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    Thanks. (My head is now pounding though.)

    I've only skimmed section two, but they seem be throwing everything in, rather than trying to construct one overwhelming argument. There are quotes about XMRV being the cause of CFS, but also quotes about CFS being heterogeneous - seemingly without addressing the tension there, and presenting both as authoritative and without contradiction.

    There's certainly a lot of evidence of various biological abnormalities amongst CFS patients, but I don't think that these yet add up to proof that is not a psychological condition. It's hard to prove a negative, and I'm certainly not impressed by the claims of the orrenmaffia (is it catching on yet?), but I think the nature and cause of CFS is still unknown. The magical medicine piece presents a lot of reasons to think that physical abnormalities are at the heart of CFS, but doesn't even seem to be trying to prove that this is the case, or develop a unified argument.

    They started by talking a lot about Martin Pall's work - as if it was pretty authoritative. I've really not kept up with recent CFS research - and don't know him. Is he well regarded here? It seemed like they were citing unpublished work - maybe this will be conclusive proof, but I've not seen it yet, and they didn't seem to go into much detail..

    1) Yes.

    2) You'd said that Stalin and Goebbals could explain their position very convincingly - I don't think so.

    I'm not sure about this, but I think that for something to be a fact, it would need to be symbolically expressed. You cannot point at a person and say "That is a fact."

    Sometimes words will be used dishonestly or stupidly, as was the case with Stalin and Goebbals, but it seems neither of us find them terribly convincing, so I do not think that we need to worry about that. Personally, I think that had either of them engaged in the sort of open ended discussions that can take place here, this would have served to undermine their totalitarian regimes, that depended upon a restriction of free speech and debate. Too much free discussion and debate was not a problem in either case.

    3) You'd said 'The problem is that you dont speak for the facts' - I assumed this meant you thought I'd made some factual error. You actually meant that I am not acting as spokesperson for some entity known as 'the facts'?

    4) One reference to an academic paper proving biomedical causation for CFS would be fine (assuming it's been replicated).

    5) You'd started by saying I was underestimating the intelligence of people here, and end by saying that, while you would not be conned by the psychologiser's propaganda, they're so smart that they would be able to trick other, less gifted members of the board? I don't think it is I who is underestimating the intelligence of members here.

    I'm not at war. I'm not going to fight dirty. I don't like propaganda.

    In a debate, I want to highlight my own weaknesses to my opponent. It's wonderful to genuinely lose a debate, as you will have been shown that you are wrong, and allowed to learn and progress.

    The ways we describe our illness can be used against us whatever we do - best not to worry about it imo.

    It is possible to exaggerate how badly CFS affects patients - I could have a go if you wanted.
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