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The role of psychology in chronic illness

Discussion in 'General Treatment' started by Cheesus, Sep 18, 2013.

  1. Cheesus

    Cheesus Senior Member

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    Hi guys,

    I feel I am probably going to phenomenally unpopular for bringing this up. Nevertheless...

    I have recently dropped all supplement etc., and my main treatment method is now the Gupta Programme, good food, psychotherapy and meditation. Doing this for only three months so far I have begun to notice tangible positive effects such as the ability to walk further and carry out more tasks day-to-day. There are certainly ups and downs, and my throat is currently massively swollen, however I feel my lows aren't so low and my highs are getting higher. It's still early days, but I am confident that I will ultimately return to health.

    The role of psychology in the treatment of M.E. has a terrible reputation due to the past assumption by doctors and 'specialists' that our illness can be treated via antidepressants and CBT. Obviously this is hugely mistaken. M.E. is unquestionably a physical illness, not a psychological one. The reason for our incapacitation very much exists somewhere at a biochemical level.

    However, I am learning more and more about how the mind can impact our physiology and it is honestly shocking. Meditation, for instance, will alter gene expression to improve mitochondrial function. Similarly, the placebo effect is treated like some kind of medical accident to be avoided. However, in a study into a type of key-hole knee surgery, the actual surgery was found to be no better than a placebo. Instead of heralding the excellence of the placebo effect (some participants were now free of knee pain), the only conclusions that could be drawn were that the surgery was useless.

    People with M.E., myself absolutely included, will go out of their way to tip the odds in their favour, however implausible or unlikely it might be that it will lead to a recovery on its own. I have had multiple hair mineral analyses, salivary tests, dental work, supplemental or dietary regimes etc. etc.. This is not to say that those things don't or can't benefit out health (though I often question whether some of these things have made me worse), however my point is that I am surprised that people are so willing to put so much stock into these treatments, however they cannot face the possibility that the mind might be the linchpin preventing them from staging a physical recovery.

    An element of my illness has been massive over-sensitation. This can manifest as a wired but tired feeling, noise or light sensitivity, or massive irritability. The massive stimulation of the sympathetic nervous system in these instances has a knock on effect on the endocrine system, ultimately unbalancing the HPA axis. Like dominos, our physical systems fall as, for instance, our cardiovascular system becomes stressed, our gastrointestinal system becomes imbalanced and, perhaps most importantly, the mechanisms of the immune system take a terrible battering.

    In treatment, we often try to fix one of these things. In some people the adrenals might be weakened and thus they are incapable of picking the rest of the system up, in others they might show a predominant Th2 immune response and thus are incapable of ridding themselves of their initial viral infection, in more still the immune system might switch too aggressively to a Th1 response and never calm down, thus resulting in constant flu-like symptoms. Trying, then, to treat the underlying cause becomes an exercise in finding a specific needle not in a haystack, but one in a big pile of needles! What is the main cause of our malaise if all of our systems are malfunctioning?

    The human body, however, is a very capable machine and, in many instances, given the right tools it will provide its own maintenance. We try to assist it in doing this by removing amalgams etc., however many deny that hope, positivity, love and acceptance can allow the body the space it needs to begin to address its own issues. By embracing and cultivating these qualities systematically rather in a sort of half-arsed, piecemeal kind of way we are stimulating the parasympathetic nervous system, thus allowing the HPA axis to right itself and the immune system to come back to homeostasis. We are literally stimulating the body to enter its rest and repair mode, whilst simultaneously calming the nervous system so my neighbours stereo won't cause me to want to crawl back into the womb.

    I recall a post on this forum where someone recovered after going away to a tropical beach for three months. The posters were wondering if it was a change in their water or food, or if it might have been the differing geological formations or the variations in the earth's magnetic field that caused their recovery. Could it not instead have been that that person finally let go? That they finally allowed their body to address whatever it was that held them in such a miserable state? That sunshine and happiness cultivated a healing atmosphere?

    I am not here to blame people for their illness. I am not saying that it is the general negativity of the M.E. population that is causing the illness, because I know so well that many of you have been through the mill with people telling you it is all in your head, and I also know that many of you stay quietly confident. However, the systematic cultivation of positive psychological qualities is so frequently overlooked, whereas we will happily approach the systematic removal of toxins and pathogens from our food and bodies using some far out techniques.

    This post, then, is a rhetorical plight for many of you to also add to your healing repertoire the possibility that we also needs to heal ourselves psychologically, in addition to removing toxins etc., before real change can take place.

    If you would like to read a very well researched book that discusses the impact of psychology on physical illness (which includes an extensive bibliography which cites plenty of well respected medical journals), then I encourage you to check out Mind Over Medicine; Scientific Proof That You Can Heal Yourself by Lissa Rankin M.D.

    When drafting any responses, please keep in mind I'm not saying your illness is psychological, or that it is your fault, or that I know what's best for you. I'm just saying be open to the possibility that we need to address psychology as well as physiology.
    Wayne and helen1 like this.
  2. Tammy

    Tammy Senior Member

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    Very well said Cheesus and I for one have not taken your post in the wrong way. Blessings to you and keep doing
    whatever YOU feel is right for you. I cheer you on and send you hugs.
    Beyond likes this.
  3. A.B.

    A.B. Senior Member

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    Three months doesn't mean much. CFS symptoms come and go. It takes longer to see whether something is really helping or not.

    You also list four different interventions, two of which have nothing to do with psychology (meditation and good food). The Gupta program I'm unfamiliar with. In any case, out of these four interventions, you focus on psychology. Even if your program is helping you feel better, you don't know which of these interventions are helping and to what degree.
    xchocoholic and Valentijn like this.
  4. Esther12

    Esther12 Senior Member

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    I think that psychiatry will probably be more helpful than hair analysis. That's not saying a lot. It's probably more harmful too.

    Personally, I'm open to the possibility that my health problems are entirely psychological. I've got no idea, and don't really care. Most of the psychological work around CFS is quackery, and until they start holding people accountable for the misleading and manipulative claims made to patients, I'm gong to be deeply wary of anyone promoting the routine medicalisation of the cognitions or behaviours of CFS patients.

    Having a more relaxed time will make people feel better. There are cognitive techniques and tricks which can be used to make people feel more relaxed. Some of these help by overcoming unreasonable thoughts which make people needlessly stressed, some of them work by promoting a moral and intellectual cowardice which detaches people from reality.

    It's important to note that lots of different things are caught up in 'the placebo effect'. Generally, when people receive a medical intervention from someone they like, they will feel a desire to report some improvement, to be generous, and to be a 'good patient'. This means that subjective self-report measures tend to rise for useless interventions. Some quacks try to take credit for this, and claim it's the magical healing power of placebo, when really it's just response bias. This is not a wonderfully sophisticated understanding of how mind, brain and body interact, it's just a lack of critical thinking.

    For CFS, three trials how shown how CBT leads to patients filling in questionnaires which indicate improved levels of fatigue and disability, but actometers measuring the amount of activity that they are able to do show no improvements. There have been other studies for a range on conditions showing how the 'placebo' effect seems to effect questionnaire score, but not more objective measures of health.

    If you're feeling better, then that's great. Honestly, it sounds like you are better off giving up on a lot of the past alternative stuff you were putting time, effort and money into. To me, it doesn't look like the Gupta programme is any more respectable though. Some people find all sorts of things helpful, but I'd be cautious about promoting talk of HPA recalibration as being any more science based than homeopathy.
    Valentijn likes this.
  5. Cheesus

    Cheesus Senior Member

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    Thanks, Tammy :)

    I'm conflicted about how to react to the other posters, and realise now that I probably should have not posted this here as I have set myself up to be drawn into a squabble with no side budging but in which a lot of emotional energy is expended. I am not a master of argument, I am probably less intelligent that some, and I don't have at my disposal the reams of information earned by years of intense research. As a result, I think I should just say that I have said my piece, and I am happy for people to take it or leave it as they deem fit.
    Wayne, taniaaust1 and Little Bluestem like this.
  6. Valentijn

    Valentijn Activity Level: 3

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    It's also important to keep in mind that you've said yourself that you don't fit the diagnostic criteria for ME/CFS. While positive thinking and taking a break from being over-worked might indeed help with a lot of problems, it does not cure ME/CFS.

    Also you have only had symptoms for about a year - spontaneous recovery is a lot more common during that time for people who do have ME/CFS, hence it's rather assumptive to attribute improvement to a specific treatment undertaken during that period. Especially when, as noted above, you have made several different changes in lifestyle and treatment at the same time.
    Clodomir, taniaaust1, ~ Ariel and 5 others like this.
  7. Esther12

    Esther12 Senior Member

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  8. Sparrow

    Sparrow Senior Member

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    I've had some good and solid improvements at times where I've given myself more rest, less stress, etc. Stress is a powerful thing, and is already known to have a very real physical effect on lots of other illnesses (MS, cancer, etc.). There's no reason it shouldn't hurt us too. And extra periods of rest (whether meditating or relaxing or what have you) have all kinds of reasons to be beneficial to those of us with this illness in particular, even if just to keep us from overdoing it so much and holding our own progress back.

    The placebo effect is very real, and actually really cool. Some of the interpretations are possibly crap, but there are a lot of places where the effect can be measured very objectively for various physical problems (blood levels of things, etc.), and a real difference shows up. Very neat. There's still so much we don't understand about the brain and the body and the things it is capable of.

    In the end, I approach this pretty similarly to the way I would if I had cancer. Am I going to trust peaceful thinking alone to get me fully well again? No, probably not. But am I going to ignore anything that could give me some kind of benefit without making things worse? Not at all.
    SOC and Valentijn like this.
  9. Cheesus

    Cheesus Senior Member

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    Thanks I stole it from an anxiety website I frequent :)

    Yeah that advice does look pretty sensible! I wish I had heeded it more closely then. With so much differing advice though its hard to know what to do and can be very scary. I've been wound so tight for years and I'm finally beginning to undo that and though I am still ill I am slowly becoming happier, which is phenomenal.

    Since posting that I saw a more senior member of the medical team and she gave me the full diagnosis.

    I am not saying that this is absolutely or singularly the answer, or that it is the sole cause of my notable (but as someone pointed out unreliable) improvement. I just want to expand treatment horizons. It is a multifaceted illness with likely multifaceted treatment solutions. Anyway, these things are helping me to be happier which means as much to me as my energy. If it helps other people with M.E. be happier too than that is great.


    I've really quite stressed myself out by doing this and I have no idea why I thought it was a good idea :rolleyes: I'll mark it down as a learning experience.
  10. Esther12

    Esther12 Senior Member

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    Always trust the care bears. Pink ones especially.

    I think that 'horizons' for CFS treatments are way too wide! Better to do more to restrict the claims made to patients to those that are supported by clear and compelling evidence.

    Prioritising doing nice stuff will lead to people feeling nicer... but I'm pretty uncomfortable with the way in which some try to medicalise this, or set themselves up as being biopsychosocial experts. Better to give patients more power over their own lives, and leave them to live as they choose imo. I think that a lot of the stress in CFS patient's lives comes about as a result of biopsychosocial approaches to the illness.

    I'm not sure CFS is any more 'multifaceted' than any other diagnosis, and I am wary of the use of the term as it can be used by those making money from CFS patients to imply sophistication, subtly, an appreciation of complexity, etc. CFS is a quack-fest, with lots of unsupported claims, and patients likely to have all manner of different problems being lumped in together - I'm not sure that makes it multi-faceted though. More dung-heap than diamond.

    It's good to hear that you are feeling better, but as you've said, this is just one case, and I'm not sure that it's worth others trying to draw lessons from it.
    Valentijn likes this.
  11. Cheesus

    Cheesus Senior Member

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    Well, I don't agree with you but I certainly think you have a very intelligent approach to it and I respect you for that. Your logic flows well, but it drawn from a different well of understanding and experience than mine. I can hardly fault you for that, and I hope that it leads you down the path to good health!
  12. Esther12

    Esther12 Senior Member

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    That sounds quite psych influenced... but I want you to fault me! and explain the specifics of why you disagree. You might be right, and be aware of evidence or arguments that I am not. Avoiding disagreements can mean that people end up avoiding truth. These different approaches could illustrate why I am concerned about the routine psychologisation of patient approaches to life.

    edit: Sorry to hear that you're feeling stressed about just posting here. It's just a place for people to explain what they think, so there's no need to worry about it. Stay cool!
    ~ Ariel and Valentijn like this.
  13. IreneF

    IreneF Senior Member

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    It's important to draw a distinction between psychogenic disorders and psychological treatments. A psychogenic disorder is sometimes called psychosomatic; it presumes the cause of a physical disease or symptom is mental or emotional. My cat used to suffer from psychogenic bladder problems. We treated her as best we could, but the problem didn't go away until the other cat died.

    Psychologic or behavioral treatments can be applied all kinds of problems, both physical and mental. I don't know if psychotherapy cures anything, but it can help people deal with whatever is confronting them.

    I think that CFS is physical, not psychogenic, but psychotherapy (including CBT) can help one deal with it.

    Does this make sense? I'm quite foggy right now.
    SOC, Snow Leopard and roxie60 like this.
  14. ~ Ariel

    ~ Ariel

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    Helllo Cheesus, (et All),

    I am very glad for you that embracing the GUPTA program is making you feel so much happier !
    I appreciate your motivation to expend treatments horizons - indeed, to me, this is an important function of investing oneself into communities such as PR - that sharing our views and experiences might contribute to collective or individual expansion of all sorts - and I imagine, rightly or wrongly, that you might feel rather passionate and enthousiastic about it if it is working so well for you.
    Drafting this response, I am keeping in mind, as you invited, that you are not saying my illness is psychological, or that it is my fault, or that you know what's best for me, and I am grateful to you for that.

    I'm open to the possibility that we need to address psychology as well as physiology, in fact, I have been doing so myself for years. But which shcool of psychology? "Different stokes for different folks !" ~ There is a cornucopia of different psychological approaches and schools of thoughts, some more prevalent, more widely embrassed by the establishement than others, some more alternatives, less well known and/or accepted. I have considered most of them & studied quite a few, so as to inform my personnal choices in the matter. Concerning the GUPTA approach and paradigm, having read and watched all free materia available, I am quite certain it is not for me. I resonnate considerably more with the neo-jungian approach to Psyche, as well as some aspects of eco-psychology, the work of .R.D Laing, & certain gestalt schools , have found the the Family Constellation work pionnered by Bert Hellinger incredibly useful and liberating.This being said, I totally appreciate that , as you point out so wisely, my choices & determinations in the field of Pshycology draw from a different well of understanding and experience than yours,or any others here, and as such, entirely personnal and subjective ~
    I hope that your adherence to the GUPTA programm leads you further and further down the path to good health! ~[​IMG]
    Tammy and Cheesus like this.
  15. Cheesus

    Cheesus Senior Member

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    Well the thing is that you are approaching this from a different angle to me. The truth is I don't have absolute answers, I wish I did. Rather I only have inference from what I have read and my life experience. I have suffered from an extremely severe anxiety disorder, and the physical manifestations of what was essentially an unbelievable stressed psyche were frankly extraordinary. Treating the mind in that instance alleviated a number of physical symptoms. It is with that appreciation if the mind-body connection that I approach CFS. I had seen first hand the impact the mind could have on the body at the severe end of the spectrum so I am very open to the idea of a more subtle and nuanced relationship too, particularly when there is a great deal of emotional and mental turmoil associated with having an incurable, debilitating chronic illness.

    Moreover, I have subsequently read a number of well written and researched materials, such as that book I initially cited, which lend a huge amount of credence to the idea that our psychology and physiology are deeply entwined. I have spoken to a number of people who have been through the Gupta Programme with excellent success. My CFS clinic with the NHS is in strong support of me attending psychotherapy, the Gupta Programme and regular meditation classes (whoever said meditation wasn't a psychological exercise either has a different definition of psychology to I or they have an entirely different understanding of meditation) because they have seen the influence the mind can have on CFS.

    For some this is largely inadequate, especially given that inference has given birth to a number of wacky and entirely unreliable alternative treatments. Cultivating positive mental and emotional qualities, however, is a win-win situation. It doesn't come with a warning label of 'die-off' which people think is ultimately healing rather than hindering them. It just encourages personal exploration with the ultimate intention to be at ease with yourself.

    I also disagree that CFS is not multifaceted. I think if it were a localised pathogen that was the same from person to person then the therapies that some people find useful would work for a larger proportion of people. The truth, however, is that it is more likely an inter-system malfunction with different causations for different people. Again, this is not concrete, however it is an idea fed to me by my GP, my CFS clinic, a number of articles I have read, and the frequency with which biomarkers of CFS are identified but causation is still elusive.

    With these two precepts in place, it is easy to see how I would find psychological approaches to be a potential part of the solution, as they can contribute to an 'every little helps' approach. Moreover, in my title I referred to its role in chronic illness, rather than simply M.E. I did not then make explicit that I do not think it is M.E. alone. As someone mentioned, psychological factors can play a role in a number of other illnesses such as cancer.

    The difference here is that I see your understanding as x is the problem and y is the treatment. I am not saying at all that I know this to be incorrect. With that understanding, however, I can see why the psychological factors would fall by the wayside as surely they are insignificant or even potentially harmful (in that they distract from the real cause).

    Do you see where I am coming from? Can you appreciate why I put our differences down to a differing well of experience and understanding?
  16. taniaaust1

    taniaaust1 Senior Member

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    I can see how psychology can help those of us who have anxiety like yourself but some of us rarely get anxiety or depression either. Psychology DOES help anxiety or depression and those two things do and can cause many symptoms or if one has ME/CFS make things worst.

    I currently have neither of those things, I rarely feel sad, I dont get anxious often (I have been at times in the past but its always due to BIG situational things eg a dr used my ME/CFS to get to my boyfriend and had had unprotected sex with him .. I had over 10 weekly sessions of psychology over my feelings around what happened there, the double betrayal but unfortunately didnt help me at all.. it was only time which got me over that (I ended up in the ICU over a year later after a suicide attempt over that.. after all the therapy I'd had.. my boyfriend was still friends with the dr who'd betrayed me, I couldnt heal from this betrayal while this stuff was still going on).

    Ive had tons of psychology (years of it all up) but it didnt help me much at all for my issues (all severe situational things), psychology actually left me wiped out and sick in bed for a long time due to the exertion of going to an appointment, that was the worst thing I could of been doing when I needed instead to be resting (so in my case seeing a psychologist did have huge negative impacts on me and used up very valuable energy which would of been best used for other things). It wasnt the psychologist, I tried 7 different ones and none of their recommendations helped me at all, (I already was doing the trying to think postive thing, meditation etc etc all before I'd even gone to see any of them.. there ended up being nothing they could suggest other then giving me some supportive counselling (just someone to talk to which I get just as much out of from the chat on this website anyway).

    They actually made me feel worst (5 out of the 7 made me feel bad, one of those 2 which were okay had no affect at me at all and the final one was good for me to to talk too.. thou as I said draining and hence could trigger my ME). Due to not knowing enough about my illness and them giving me suggestion after suggestion for stress relief that couldnt work for me (as I said I'd already tried all the meditation stuff and positive thinking and affirmations even before I went to see them so all that was left was other suggestions

    eg here are some things psychs have said to me
    "go out for a walk when stressed" (said when I cant even leave my house alone due to collapses. I'd love to go out walking if I could, that comment was upsetting)

    "when stressed try holding some ice to distract you" (I had raynauds disease so couldnt hold ice as it would just make the raynauds disease worst or set it off),

    "listen to music for calming" (when I have neurotoxicity the beats of any music nearly cause me seizures and are unbearable to me. I can often need complete silence),

    "fling yourself with a rubberband to distract yourself from negative thoughts) I ended up doing that till I was sooo bruised up and it didnt help my stress level at all (all that would of done is to add to my already abnormally high noradrenaline from my POTS),

    "go out more" (I was unable too, I also cant drive due to the illness)

    "phone a friend when you feel down" (I'd lost all my friends due to the illness)

    "treat yourself with some nice food" (I have severe food problems and there is hardly any treaty things I can eat.. so that comment just made me think of all the things I cant in fact eat and miss which already was an issue I was trying to deal with).

    Another one suggested some strong mint thing to suck (forgot now what it was) for distraction if feeling stressed.. the thing she suggested was full of chemicals and just made me sick.

    Colour distraction stress relief.. it goes like this. Look for 4 things of a set colour in the room, then look for 4 things of another colour and so on, do this till you feel less stressed. Well that wiped me out more (I'd go throu every colour and still feel whatever situational stress I was feeling eg say I'd stressed out that night as I was tired but too sick to cook so having to go without dinner so trying to distract myself from being hungry. That stress relief technique was too much thinking on my brain and having to think wears me out, it can trigger off more ME symptoms for me.. not only that when I get over tired I can feel "wired" (as it was far too overstimulating) ..all that stress technique is sent my brain into hyper mode while even more tired. made things then so I couldnt sleep when I needed to do so.

    All those psychs were nice but just couldnt help and usually made me feel worst. Thank God none of them suggested GET as they could all see I was too sick for it (I actually feel asleep right in the middle of two of my psych appointments, just going there wiped me out way too much). Even the one who was good to talk too and didnt say anything stupid to me, didnt help at all any of my ME symptoms.

    In my own case meditation didnt help me at all either, Im a yogi so was doing all kinds of forms of this anyway (I was a yogi when I got sick.. it certainly didnt stop me getting this illness or crashing down more and more into it). I used to not only do relaxation meditation but also postive visualisation ones too but due to the ME and how its affected my brain waves (which shows up as abnormality on EEG, I can no longer visualise at all. I still do meditate at times but nothing to do with ME (as as I said, meditation doesnt help me with it at all).

    Anyway.. my experiences with psychologists for years just showed me how difficult my case is and how little they can help me and helped remind me every time I saw one, how little they understand about ME. Some of the psychs actually gave up on helping me, one only lasted 3 sessions with me before saying she didnt think she could help me. others passed me on to another as they were at lost on what to say after they screwed up so many times.

    Im always happy when I hear that psychology is helping someone but many of us have tried it and havent found it to be helpful at all for ME. (I think those of us who have been sick long term if havent already seen a psychologist at some point or another to help us deal with a ME/CFS situation (I had much counselling over how badly doctors were treating me), nearly all the rest here probably have already tried things like postive thinking, relaxation, meditation.

    You seem to still suffer from anxiety even with your current treatment as you seen to be over worrying about peoples responses to your post. I can see how some therapy or postive thinking or learning to be stronger within yourself could help you..

    One thing which did help me a bit was changing my diet, not to thou eatting what people consider to be good food. I previously had an extremely healthy diet but that was all very wrong for me as I had food intollerances and issues with high insulin and needed a far lower in carb diet then a diabetic one due to my extremely abnormal insulin reactions.

    anyway. best luck. I hope you continue getting well.
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  17. Snow Leopard

    Snow Leopard Senior Member

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    It can and should be as simple as that.


    But this is not what is pushed by the medical community in certain parts of the world, where psychiatric treatments are not only promoted as improving quality of life for some sufferers (due to better coping etc). But a treatment that leads to recovery in a substantial proportion of patients, a claim that I personally dispute on the lack of objective evidence of remission/recovery (specifically employment status or actigraphy). I believe such strong claims are the wrong way to go because it is deceptive and it polarises patients so that even those who might actually benefit from psychotherapy and a particular type of graded exercise therapy (one that includes pacing - not all GET is the same!) are not able to do so because they are so put off by the models and language used.

    I have both tried and heard of others trying all sorts of treatments over the years. If each of those treatments led to the improvements we thought we were feeling at the time, I daresay we would all be recovered by now! I'm not afraid to admit that it seems the short term feeling of improvement after certain things that I tried over the years, may in fact just have been in my mind, because I wasn't actually actually able to increase my activity levels at all in the long run.
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  18. Valentijn

    Valentijn Activity Level: 3

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    A diagnosis from the NHS does not at all indicate that you have "real" (CCC or ICC) ME. The definition used by the NHS is more in line with idiopathic chronic fatigue, and the way they apply it means that very many different problems get thrown into the same wastebasket.

    While this may mean that the psychological treatments offered might be helpful for you, or at least not harmful, please keep in mind that psychological treatments aimed at denying illness symptoms and/or increasing activity levels are extremely inappropriate for patients who actually have ME. Psychological and exercise treatments have been repeatedly proven to not help ME patients, and a large majority report harm from those treatments.

    If you do not have post-exertional malaise or the other symptoms required in the proper ME definitions, then you have probably not been properly diagnosed - I would suggest you keep pushing for an actual diagnosis. At best it would indicate that you have atypical ME.
    SOC and Clodomir like this.
  19. Cheesus

    Cheesus Senior Member

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    What makes you think I don't have PEM?

    EDIT: or that i'm suggesting exercise or denying symptoms?

    I think I'm going to back out of here now. I should have seen discussions would take this turn.
  20. Esther12

    Esther12 Senior Member

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    [1]I don't think that this is a surprising perspective. I expect that everyone will have realised that feeling worse emotionally can lead to unpleasant bodily sensations. From what I have seen, no-one's disputing that, or surprised by that. That doesn't serve to legitimise the routine medicalisation of the psychosocial aspects of the lives of all those with health problems though, or mean that those with health problems should do any more to adopt particular cognitive or behavioural approaches than anyone else.

    [2] The Lisa Rankin book you mentioned looks like a hilarious quack-fest, and I worry that you could be being misled by it. I was reading about her in the Daily Mail recently:

    http://www.dailymail.co.uk/health/a...ook-shows-incredible-influence-mind-body.html

    I've been trying to find a source for her claim that 30% of cancer patients lost their hair when being given a saline drip as placebo, as they were told it was chemotherapy. This seems to be the only interesting thing mentioned that isn't just an anecdote. There is lots of uncertainty and randomness in life and medicine that cannot be well explained - collecting anecdotes about people's strange experiences and miracle cancer cures can allow people to present any quack theory as being evidence based - it's a shameful way to behave.

    Have you been able to find the placebo hair loss study?

    I found this: http://serendip.brynmawr.edu/bb/neuro/neuro99/web1/Kinser.html

    It claims: "For example, a study in England was done where 100 men were told that they were taking chemotherapy, when in actuality they were taking inactive saline solution. 20% of these men lost their hair, demonstrating the power of the belief of effects of the treatment. (4)"

    However citation 4 is just this:

    4- Mining Co. Alternative Medicine Information: http://www.altmedicine.minigco.com/library/weekly/aa100998.htm?terms=placebo+eff ect&COB=home (Note: this link takes you to the Mining Co. search engine)

    I've found lots of mentions of this study on wacky websites, but no reference to the actual study. Does is exist? Is it a well done piece of research? No-one seems to care.

    James Coyne has written a lot about the spin and misleading claims which have sprung up about 'positive psychology' and cancer. He takes care to check his citations, and reference them properly. eg: http://blogs.plos.org/mindthebrain/...over-cancer-info-from-peer-reviewed-journals/

    [3] I like meditation, but there's no good evidence for it having any value as a treatment of CFS. The Gupta programme is full of unfounded claims - that the NHS is promoting this to CFS patients just shows how little respect they have for patient's right to be spoken to honestly. If you have problems with anxiety, then it certainly makes sense to try to find ways of improving them - right when you first joined here I advised you to focus on relaxing and playing about, because that's what it sounded like you needed. That you've been helped with some of your anxiety problems isn't an important lesson for others about how to view CFS though, or a justification for things like the Gupta programme.

    [4] I disagree that it's win-win, and have seen this sort of routine medicalisation of people's cognitive responses cause real harm. Judging mental and emotional qualities in those sorts of terms often leads to a pragmatism which I think corrupts vital aspects of our own humanity. What is 'positive' is deeply contested, and medicalising this matter gives undue power and authority to a small number of doctors and researchers - I don't think that this is a healthy ('positive'!) thing for society.

    [5] This is the sort of thing that worries me with a term like 'multifaceted', it leads to claims like: "it is more likely an inter-system malfunction with different causations for different people".

    It sounds like this is a informed and sophisticated understanding of a complicated problem, so long as you don't really think about what information is being communicated. I think that language like that tells us no more about the nature of CFS than what I had said, but does so in a way which people could confuse for making meaningful positive claims:

    Also you set up a false dichotomy between your 'multifaceted' understanding of CFS, and CFS being caused by a single pathogen that should be easily treatable.

    You also say "The difference here is that I see your understanding as x is the problem and y is the treatment." - what led you to see my understanding as being that?

    Some of those trying to make money out of their sophisticated biopsychosocial expertise like to pretend that they only alternative is to think that CFS must be caused by X, and treated by Y; or that lots of people pretend that the mind is utterly detached from the operation of one's brain and body. When people need to straw-man other's views in this way, it's a pretty good indication that they're have little real knowledge of their own to contribute.

    [6] The evidence isn't good on that one, as the Coyne link above details, and it's far from clear that 'every little helps' when it comes to medical interventions. They can often be harmful, or have costs that outweigh the benefits.

    [7] I think that you underestimate the extent to which our difference stem from you having been misled by Gupta, Rankin, etc. I'm not at all surprised by, or challenging, your personal experiences. It sounds like you've benefited from doing the sort of things that I suggested you try, and I hope that this continues. It does seem that you are keener on trusting and being guided by certain dubious sources of expertise than myself, but I know that some people are like this. I just don't think that there is any great lesson here, or interesting revelation for others to learn from, and that your view that this is results from inaccurate views about how people typically view CFS. Lots of people with different problems can get given a CFS label - sadly it seems that very few of these have problems which can be successfully treated through psychosocial interventions, but some do. That's great for you, and best of luck with it, but please do not slip into assuming that your experiences indicate that if more people with CFS were to use the sort of interventions that you have found helpful, that they would be likely to improve too.

    When you first posted here, I said:

    Hopefully you are going to be someone who recovers. Maybe this would have happened while you'd been praying to magic crystals. Maybe you really found the Gupta programme useful. Who knows? As the Rankin book shows, one can find anecdotes for anything, but they're of little real value. Some people aren't as lucky from you, do not improve, and find the psychosocial approaches around CFS to be actively unhelpful - there is no reason to think that this reflects unduly narrow horizons, a failure to understand how mind and body interact, or a commitment to the belief that for CFS 'x is the problem and y is the treatment'.

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