Re CBT:
One of the times I was psychologically assessed was to see if I was eligible for CBT (I wasn’t). My partner has paid for it privately, and found it to be useful for helping with sleep problems. The therapist didn’t think that they could help with the broader aspects of the illness saying: “You seem to be dealing well with a very difficult situation”.
I think that there’s some controversy over what exactly constitutes CBT (I mean amongst CBT practitioners, rather than just on this forum). I know that a lot here will automatically associate CBT with the rather dishonest and manipulative approach promoted by Chalder etc, but that is not the only way CBT can be used with CFS patients. It is a difficult illness to live with, and for some patients I expect CBT will be able to help them with aspects of it.
You don't seriously think a Medic who believes CFS is primarily psychological is going to post in this thread (under cover) do you?
This whole concept is only going to stir up negative emotions & re-open old wounds.
How about suggesting a thread title to promote a positive outlook & generate some uplifting & inspiring conversation?
I don’t know. We know some read the site. If I was them, I’d want to present my ideas to a sceptical audience as a way of testing them. Forum threads can get off track – but so long as both sides are genuinely interested in an honest discussion I think this would be a good venue: it allows for something close to a ‘conversation’, but with a clear record of what was said, and how arguments were developed.
Not only that, but really... what's the point?
If the intent is to recruit an individual from this field in order to engage in debate with them in the hopes of converting them to our point of view and gain support from them, yes this is EXTREMELY naive.
I really want to get a better understanding of why they think their beliefs are reasonable. There seems to have been a total breakdown in communication between patients and psychologisers and I worry that this means we are misunderstanding them and they us.
I think discussions between opposing viewpoints are always a good thing.
No one can seriously enter into a debate about the nature of the illness there is no no scientific debate possible
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.
I think some others had raised points similar to the rest of your post, which I replied to at the time. Ta.
There is no point in arguing, debating or discussing with a delusional person - in fact, the psychologizers themselves acknowledge that the opposite is the case, that the best way to deal with a delusion is not to encourage it.
LOL. But both sides are trying not to engage with the other’s delusions!
I think this is unfair on whoever is genuinely demented: I feel that I have a responsibility to them to show that their beliefs are unreasonable – just as they should feel a responsibility to explain to me why they think my beliefs are unreasonable. Otherwise we just segregate into little sub-groups, all feeling smugly superior to the deluded others.
@monkeybusiness : Thanks for the e-mail.
Esther I think you've misrepresented people's concerns here in a key way. I, for example, am NOT concerned that fodder will be made available to show how unreasonable people are, because I don't think people are actually unreasonable in their concerns about the psychiatric paradigm and the way its proponents represent the community. I am concerned about how directly engaging with those proponents would allow them to MISREPRESENT, using ad hominem, the concerns of the community. It is a entirely different concern.
You've managed, in your above sentence, to misrepresent stated concerns as people trying to hide the 'unreasonableness' of the community, when that's not the case at all.
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.
Has it occurred to you that people may not be entertaining the same 'doubts' as you because they've rationally, after analysing the evidence available, come to the decision that their position is reasonable and that 'doubt' would be misplaced? Or is it only your 'doubts' that are reasonable?
Of course.
The only way you can really test your doubt, Esther, is by following the advice of the CBT/GET gulags: remind yourself that your body is not really ill, and engage in physical activity. If you really have ME/CFS, I guarantee you will no longer be confused after that.
I'm just unclear about why this type of debate, whether it's an internal conversation or something engaged on the forum with members of the Wessely school -- is constructive for you? After years of this illness I have no doubt that what I'm suffering from is 100% physical, and thus no interest in epistemology. I suspect you're trying to rectify the cognitive dissonance of official research and patient experience, but, I think that's futile. I'm sure you can easily come up with historical examples, both politically and medically, of the people in charge being wrong.
You yourself started a thread about the placebo effect and the problem of self-reported patient outcomes in RCTs and you must be aware of the glaring cohort questions, too. Sometimes the answers are the most simple: maybe people will not to admit to being psychologically ill because they are not. (I say this as someone who has a strong streak of psychiatric illness in her family and no shame about it. I would prefer to be somatic because it would be a lot easier to get well.) The strongest argument against the Wessely school is there there are still so many sick people. Those interventions are not getting people off of disability -- I suspect the numbers are steadily growing. If I were the UK government -- Wessely, White and friends would be so fired.
I certainly agree that there are problems with the way CBT and GET are researched and promoted, but I don’t think the fact that I have found GET to be unhelpful proves that my own psychological and emotional responses ar not a significant factor in my illness.
Indeed – the fact that the psychological research surrounding CFS seems so weak could even make it more likely CFS has a significant psychological component: if it did do, would you really trust those guys to have identified it? I certainly am not impressed by the psychological research that surround CFS, but I’d still be really interested to discuss it all with someone who is.
Because people have been really hurt and their lives destroyed by the Wessely school dominating research for so many years?
I don’t really think that follows. All the more reason to discuss these things with them imo.
Did you try wiki?
http://en.wikipedia.org/wiki/Neuroimmunology
Neuroimmunology is the study of how the manifestation of infection (cytokines) and inflammation affect the central nervous system. (Did you see the Light study about elevated cytokines in CFS after exercise?) I don't know if there is an "official" classification, it's just an area of medical science. My friend works in a neuroendocrine lab and studies neurological disease affected by cortisol (and other hormones) though they're not classified as neuroendocrine. His campus also has a neuroimmunology lab which studies autoimmune-type diseases. MS and lupus are examples. But neuroimmunology could also be influenza, or, spinal cord damage. Understand now?
The WPI, judging by
this VIPdx page, believes that CFS is a disorder of viral pathways and they have a whole flow chart about the lab tests they use to diagnose it! My guess is that the choice of name for the WPI was an issue of politics. The Whittemore Peterson Institute for Chronic Fatigue Syndrome is less likely to get funding than the Whittemore Peterson Institue for Neuroimmune Disease!
Thanks a lot for that link.
I’m still not entirely clear on it all – it has psycho-somatic illnesses in the ‘see also’ section, and it seemed a bit ambiguous as to why and illness would be classed as neuro-immune, but it was still interesting.
I have to concur with Lily. Been reading your posts for a while now Esther. Personally I think you do qualify for a psychological diagnosis. Normally I wouldn't say that to a person, but you are unusual in that you actually seem to want a psych diagnosis. I really think you should go back and get a second opinion from the psychiatrists, because I think they are wrong.
I don’t want a psychological diagnosis – I’m just interested in the truth. If I’m psychologically ill, then I’d want a psychological diagnosis and an explanation as to why it was made. If not, then I want the medical community to acknowledge that.
I certainly want to be unusual though.
Yes, Esther, I agree with Garcia, and just wanted to clarify when I said "I never doubted it", I was referring to myself. And I also agree with Robin's suggestion of trying CBT/GET or other physical activity. I do wish you well, as I think you seem quite lost in a sad sort of way.
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.