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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. Angela Kennedy

    Angela Kennedy *****

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    @ Ester,

    Re your point to me: "If the emotional outbursts you were concerned about were reasonable, then surely it would be preferable to have them used as examples of our extremism, as on a public forum context and explanations can be seen, where as when the psychologisers reference private correspondence or personal experiences no-one can check up on them and they’re generally just given the benefit of the doubt."

    Firstly, it's not just 'emotional outbursts' I'm concerned about, it's reasonable objections as well. Secondly, as I've already tried to explain to you, in the world of ME/CFS politics, reasonable objections are misrepresented in ad hominem attack on the community by the people you want us to talk more with. The community does not have the resources, power or ear of the media to counter every ad hominem attack that's been made on patients and their supporters. But with regard to any 'emotional outbursts', we are still talking about a besieged community of people undergoing terrible illness, psychogenic dismissal, and consequent construction as deviant, with all the material and social exclusions and inequalities that situation brings (and some of us are carers suffering more indirect but maybe similar levels of adversity). Any person who makes any comment with a tinge of completely understandable 'emotion' may still find their words used against them, and this may bring even further adversity their way. It's one thing to make statements in more formal settings: to find yourself in a position with a negatively-disposed powerful medic who is posting where you've come for informal support and more informal and congenial discussion of issues is fraught with danger.

    I do think it significant you use the word 'extremism'. What do you mean by that?

    Regarding your comment: "To me, a prior certainty in your own sanity seems more likely to be indicative of madness than an acknowledgement of the difficulty of coming to such a conclusion". Really? So we're all mad by default, unless we admit we're mad? This has a certain circularity of reasoning resonant of the witch-hunting era. And what do you mean by madness?

    Regarding your point "I really don’t think it’s that clear cut at the moment. To me, it really doesn’t seem as if this debate is over, for example: If it was really so one sided, then shouldn’t the debate be won at wikipedia, and CFS classed as a physical illness? When I read discussions between those who claim CFS has been proven to be a physical illness, and those who are still unsure, it never seems to end in a clear victory for certainty that CFS is a physical illness."

    You either have not been following what goes on at Wikipedia, or you support the what others see as abusive treatment of advocates that have gone on there? Or are you not aware of the capacity for abuse of power at Wikipedia on various subjects? You may need to go to a forum entitled 'Wikipedia Review' (google it) and read it at length to understand some of the problems that have gone on there (not just around 'CFS'). Do you REALLY think there's this polarised mass of those "who claim CFS has been proven to be a physical illness, and those who are still unsure"? Why do you portray people as attributing 'CFS' as organic as claimers of proof, while psychologisers are the reasonable 'still unsure'? That's certainly not an accurate account of what's gone on at wikipedia. There's reams of archived talk pages about both 'CFS' and indeed 'Simon Wessely'. How much of that have you read?

    One more thing: in 2004, after a quote of mine was used by the Countess of Mar in the House of Lords, Simon Wessely wrote an email to me that worried me deeply, and which I made public because I considered it a matter of public interest. More recently a defamatory claim was made about me, and involving him, on Wikipedia. I think you may be unaware of the possible personal cost of trying to engage with proponents of the psychiatric paradigm, directly or indirectly.
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Esther, I appreciate your attempt. I love to hear opposing views to make me think differently, analyze evidence, draw conclusions, gain new insights or validate my previous beliefs. Whether I learn, gain understanding of reasoning of those who I disagree with or come back to my previous beliefs stronger after putting them to the test, it is a benefit for me to hear opposing views.

    But, I do think it is naive to think any psycho doctor who surfs this board would want to post his / her opinions with what they think are vicious hypochondriacs.

    If I was one of those doctors, no way I would jump in here and try to reason with these patients. Likely only the psycho doctors or researchers who spend lots of time with CFS even look at these boards. The rest spend their time in other pursuits. Since CFS is not what they think about all day in their practice, they don't spend their off time looking at CFS boards. They formed their beliefs, "treat" their patients and wait for more studies.

    And, if a psycho doctor spends lots of time with CFS patients, specializing if you will, they surely don't want to try to debate patients in their off time, since they spend all day doing that. It would be in their eyes, like all of us getting free CBT. In their mind, why would they debate people who are not able to reason logically because they are suffering from a psychological disorder?

    I think you are also surprised by the threat the ME / CFS patients feel at a psycho doctor's beliefs being put in public forum. While I don't agree with such feelings, I understand. I don't feel such a threat. But I have not had the experiences that some who post here have. The past for these people have left them ultra sensitive. They see this opposing view as not only a threat, but a force that has actually done harm to them, increased their suffering. So they think it must be squashed.

    In the US, the psycho doctors are much more discrete. It is their little secret. Oh, they talk about it among themselves, surely. But they don't tell the patients and it isn't pushed in open forums. It isn't quoted in news media any more either.

    When I got sick, I had a friend who asked her doctor about my problem, that it looked like I had fibromyalgia and I was having trouble finding a good doctor. Her doctor told her, "You know, fibromyalgia is depression of the body."

    Then an internist told me I had a "different kind of depression." I asked outright, "Do you believe CFS and FM are organic illnesses?" His answer was no. Ironically, he proved his own diagnosis wrong when his nurse called me back a week later to say I had hypothyroidism. (Which ended up being just part of the picture).

    But of the five different doctors I saw looking for answers, none of them referred me to psychologist or psychiatrist. The internist above gave me anti-depressants. Another one did too, but that was not because he though I had depression, it was for CNS overreactions.

    So the psycho doctors don't threaten me because I have an understanding doctor and I know my illness. But, Esther, that is not the case for many here.

    Here are some of the problems with this:

    1) Many psychologists / psychiatrists do not accept the evidence of biological abnormalities in CFS because other psychiatric conditions can cause biological abnormalities. Depression has low serotonin and cortisol abnormalities. Anxiety has noradrenaline, seratonin and Gamma aminbutyric acid abnormalities. So the cries that biological abnormalities mean it isn't psychological or psychiatric, just doesn't ring true with the psycho doctors. They do not see it as mutually exclusive.

    2) When CFS patients become vehement and see it as black or white, it only fuels the psycho doctors that the patients have illogical beliefs about their illness. When patients see every little blip in their blood results as proof they are not somatizing, it only convinces the psycho doctors that that is exactly what the patients are doing. It's a cruel paradox that the more the patients try to prove they're sick, the more they look like they are trying to prove they are sick, as a hypochondriac would do. The extreme response to the doctor's disbelief and damages from it only adds to their evidence, in their mind.

    3) CBT means different things to different people. GET means different things to different people. CFS means different things to different people. So if you don't have a meeting of the minds on the terms, you can't discuss it. As you see, even without a psycho doctor here, the debate became about the terms as much as what is effective.

    This being the case, I see no point in trying to debate these folks or reason with them. Only a microscope will solve this problem.

    The doctors who see it are in one of two camps.

    1) they saw it in the microscope. Klimas is one of them. Only after the test results of the immune system of a CFS patient showed strange abnormalities was she willing to say this is a real illness. Problem is she is an immunologist so she recognizes abnormalities more than the doc on main street and the tests she ran are not what doc on main street knows. Not only do they not run the tests, even if you brought those test results to them, they wouldn't know what it meant.

    2) they have enough evidence through a friend or relative with illness or they see enough CFS patients that they get enough first hand evidence to see what it is.

    I never had any of my friends or relatives doubt my real illness because they knew me beforehand. They saw the before and after Tina.

    Also Peterson and Cheney said that doctors need to listen to the patients, one after another, taking time to hear them out, before they realize what is going on. Osler's Web gives accounts of skeptical doctors who became believers after they heard the patients, really heard them.

    So I am afraid your attempt has failed. But take courage. It won't be long now before the microscope will solve this problem. The tide has turned. The wind is behind our backs now.

    Tina
  3. serenity

    serenity Senior Member

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    i sincerely agree with Carrington & Kim who have both suggested you take this discussion elsewhere.
  4. Esther12

    Esther12 Senior Member

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    I could well be that many of us have lab results which prove some physical cause for our illness. But I think many of us will not, and as a group it seems that there are no tests which prove that CFS is a physical illness, or are able to diagnose whether a patient has CFS or not.

    It doesn't seem that the whole world (aside from the psychologisers) is convinced that CFS is a primarily physical illness. There are psychological illnesses which will lead to abnormal test results (alcoholism, eating disorders) - I don't think CFS is directly comparable to these, but I also don't think that CFS patients tending to have certain abnormal results necessarily proves that it is a primarily physical condition. (Although I certainly don't think that this uncertainty justifies the claims made by the psychologisers).

    Hi Neil. Id really like to see their answers to your questions.

    Im not terribly interested in the difference between CFS and CFIDS. How would you test to see if someone was suffering from CFIDS rather than CFS?

    I think that people should be encouraged to explore their beliefs carefully, but I dont see that as trouble making. In the long-run, I think it almost always leads to less trouble.


    Yup. I got ill after glandular fever. My partner got ill after a tick bite, and testing positive for Lyme by PCR, culture, and every other way possible. Thyroid trouble followed. I seem to have had some mild-POTS symptoms before I got ill (although didnt realise it at the time), and they certainly have worsened. Im still interested in examining my own beliefs as critically as possible though. I think its rather patronising for you to act as if those suffering from serious health problems need to be protected from a discussion. I have rather more respect for us.

    Yeah I did ignore your post saying I should set up my own forum because you didnt like reading my posts. How dare I?

    But surely, as was my point having these comments easily available on a public forum would make them far harder to abuse than the examples they currently use?

    The quotes could be taken out of context and used as examples of our extremism (unreasonableness, militancy, aggression, whatever).

    Were all potentially mad, and it would be crazy not to realise that.

    I was using a pretty loose definition of madness. Its an unreasonable thing to believe, and thus already down the path to madness.

    From my reading of the wikipedia scandal, some CFS patients did go in making exagerated claims and then convinced everyone else that there's was an unreasonable position to take. Weve now got a rather glowing entry for Wessely because its assumed that his critics are a bit nuts. I think that some of the editors of wikipedia have been unreasonable here but I think that they could have been won over if there was conclusive proof that CFS is a physical illness. I fully accept this understanding is based on a cursory glance, and I'm afraid I'm not aware of your involvement or of any defamatory claims made about you.

    Im not presenting the psychologisers as not sure or trying to say those who see CFS as a primarily organic illness are all claimers of solid proof, but there are those who want to insist it have been proven CFS is a physical illness and there are those who are unsure, and it seems that those who are unsure generally win the debate between the two. (Other than on CFS forums, when anyone who is not sure can be classed as a fearsome trouble-maker who it would be dangerous to even listen to).

    I think CFS is probably a primarily organic illness. Id traditionally assumed it was likely to have a wide range of possible causes, but recent reading (and my hope for XMRV) has made me think it could possibly be a more conventional disease. I am still uncertain about all this though.


    @ Tina.

    Thanks for your post although I cant help but slightly resent it, as youve made much of what Ive just typed redundant.

    In their mind, why would they debate people who are not able to reason logically because they are suffering from a psychological disorder?

    This is such a serious problem. I really dont think the psychologisers have realised the terrible damage theyve done by undermining the ability to doctors and patients to communicate honestly with each other. I was reading a paper recently by the psychologisers talking about how important it was for doctors to maintain a good relationship with their patients but without any indication that the treatments and theories they suggest will inevitable serve to disrupt this relationship.

    I may well have a rather misplaced faith in the role that open and honest discussion can have in repairing some of this damage. I think that youre right and it would be easy to do if we developed a more compelling understanding of the causes of CFS, but Im worried that may not happen for a long time if XMRV doesnt lead on to something.
  5. Roy S

    Roy S former DC ME/CFS lobbyist

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    Esther wrote:

    "Indeed - the fact that the psychological research surrounding CFS seems so weak could even make it more likely CFS has a significant psychological component"

    "This is a reoccurring theme for me. Wherever I go, I get in trouble for spreading doubt."

    That's just pretty damned hard to believe...

    At least for me this thread is an amazing waste of time. This web site could use some sort of rating system so sick people with limited mental stamina could get an indication of useless wastes of time.
  6. JPV

    JPV Senior Member

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    There is a rating system for threads on this forum.

    I just rated this one 1 star/terrible.
  7. Esther12

    Esther12 Senior Member

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    The sentance after would have made it clearer that this was meant to be a bit tongue in cheek.
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I am sorry you resent my post. I took so much time in thinking and laying out the post that it took some time. The conversation continued on while I was forming my words carefully and thoughtfully.

    I did not mean to say doctors should not be frank and honest with their patients. I was saying there is no point from their position to spend their off time debating with patients who aren't paying them. They don't see they can convince them, and even if they did, it would just mean they are giving their wonderful services for free. If they believe they must change their patients' beliefs, for which they are paid, then why would they try to do that in their off time for free? Especially in such an uncontrolled environment where the numbers are not in their favor.

    In the end, you are right. Until there is conclusive, I mean six studies show the little bug is in CFS patients and not healthy, there will be very little change. The problem is not lack of discussion, it is bias, lack of evidence, lack of clear definition of who has CFS, etc. The ambiguity and bias and arrogance will keep doctors and patients in their separate camps until the omniscient researchers make a clear determination.

    Tina
  9. jeffrez

    jeffrez Senior Member

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    JPV is right - this is all just beating a dead horse. I don't actually want to participate anymore and am deleting my post. ta ta. :)
  10. JPV

    JPV Senior Member

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  11. garcia

    garcia Aristocrat Extraordinaire

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    JPV you speak for us all! Thank you for expressing it so eloquently!
  12. Esther12

    Esther12 Senior Member

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    Sorry - I was only being playful when I said I resented your post. It was too good for me.

    I knew you did not mean to say doctors should not be frank and honest with their patients, but I think that many doctors feel that they should not because of the work of the psychologisers.

    I quite agree. There seems an undue scepticism about science's ability to progress with CFS amongst the psychologisers which leads a pragmatic disinterest in the sort of investigations which we hope will lead to a greater understand of the cause and treatments for CFS.

    I think your story is pretty apt too. Although it's been all the more damaging in the case of CFS research because the focus on psychological research has served to reinforce the prejudices of many about CFS.

    I'm not sure about just waiting for these guys to drop dead - I'm sure they're grooming replacements as we speak.
  13. _Kim_

    _Kim_ Guest

    Just a reminder that there is a feature that can be activated called the Ignore List.

    Settings > My Settings > My Account > Edit Ignore List
  14. Koan

    Koan Be the change.

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    Dear Esther,

    You have a great deal of energy for debate and, clearly, enjoy it most heartily. Nothing wrong with that, at all.

    While it may seem that many others have equal zeal, I think this is not really the case and that what is being expressed is real alarm that people who have already shown themselves willing to be litigious against PWC should be invited here for a debate! This is not a trivial matter!

    Further, it could be that many feel an honest desire to inform you of the past and present state of this issue in the realm of ME but are, ultimately, frustrated.

    I will admit that I have fantasies of having certain people, who shall remain nameless, tied to a chair (a la Death and the Maiden) until I am able to get them to see sense. And, yes, I do see that I am not fantasizing about a exchange of ideas. But, frankly, neither are they.

    Peace out,
    Koan
  15. Esther12

    Esther12 Senior Member

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    This is really not the case when it comes to CFS. It's a deeply dispiriting topic to take on, and especially difficult to discuss with other patients. But I do think debate is pretty much always a good thing: amongst patients, between patients and psychologisers, amongst researchers - because CFS is such a difficult topic it seems to make it all to easy for people to ignore the arguments of those they disagree with. Encouraging discussion between different camps might help make that less likely.

    I can understand people thinking a discussion with a psychologiser might not bring any benefit, but I have to admit, I still don't understand why some are so opposed to the idea of having a them come here to explain themselves. I have some awareness of the way they've misrepresented patient concerns in the past, and I certainly realise that many here do not trust them - but I do not see how anything bad can come of an open discussion on a public forum (unless we patients were to behave terribly - and I don't think we should assume that will be the case).

    Ta.
  16. serenity

    serenity Senior Member

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    thank you Kim! i was trying to find that ignore button :)
    the reason not to have this debate here is simple - it's tickin everybody off.
    as Carrington said, there are a lot of sick people here.
    why bug them?
    what's the agenda?
  17. Carrigon

    Carrigon Senior Member

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    Esther12, since you have openly admitted to not even bothering to learn about the very subject you are attempting to discuss, that shows a complete lack of respect for the members of this forum. And your obvious joy at openly mocking members who have answered you shows you are deeply disturbed. I will join with the others on here in placing you on ignore, you will no longer get any attention or sick sense of pleasure at our answering your posts, nor do you deserve to be answered until you educate yourself on the very disease you have been attempting to discuss.
  18. Esther12

    Esther12 Senior Member

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    I never said I was not interested in the topic at hand, rather it was your claim that, distinct from CFS, is CFIDS: an immunological disease with tests available that prove it has a real physical cause which I was uninterested in looking in to. I asked you what test was available to distinguish between CFS and CFIDS but did not expect a clear answer. I've found that some poeople are very willing to make these sorts of claims, but they never seem to lead anywhere.

    I'm not sure I'm any less educated about this disease than you. I've seen nothing to indicate that so far.
  19. JPV

    JPV Senior Member

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    Blah, blah, blah, blah, blah...
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Esther-

    I think you enjoy riling people up with specious arguments. You will write very intelligent things and in the next breath state something totally illogical or ostensibly 'ignorant', of which you couldn't plausibly be ignorant. ME/CFIDS is a physical disease, this has been proven beyond cavil. It is often co-morbid with depression and anxiety, just like other serious diseases. I am open to anxiety being a risk factor/minor cause and exaccerbator of the disease. That's it. Those are my two cents.

    FWIW I personally am not interested in a debate about physical/ psych as it is insulting. And i don't want to talk to wessely and company holding out the possibility that it's all one big mistake. No; they are our abusers and I won't deal with them other than to drive them into the sea.
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