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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Cognitive-Behavioral Therapy: Has Anyone Here Benefited at All?

Discussion in 'Alternative Therapies' started by slayadragon, Jun 15, 2010.

  1. Marco

    Marco Old blackguard

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  2. Mark

    Mark Acting CEO

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    Don't get me started...

    Oh they should. They really should. And they should damn well do something about it as well if they don't want their name blackened by it. They should drum the Wesselys of this world out of town.

    Here's my experience, which perhaps applies in the UK and less so elsewhere, since we're talking about CBT at last...

    I had a form of group therapy for depression based on cognitive techniques. Lots of handouts, lots of discussions, lots of comparing of experiences. An explanation of cognitive theory and techniques, and guidelines for putting them into practice. 12 weeks and that was it. During the same period I took a newish anti-depressant called citalopram. My doc put me on it - he said at first - 'just for a couple of months max with this one'. Then he spun it out and spun it out as I got more and more docile, until in the end after a year of foggy vegetation I summoned up the strength to insist I come off it. He then explained he had been stringing me along as long as possible and had always wanted me on it for a year if possible, because the graph showed that the longer you stayed on it, the greater the chance it would permanently cure you of depression. After 12 months it went above 95% chance you'd never get depressed again.

    So I don't know which of those two therapies really cured me of my lifelong depressive tendencies, but cure me it did. That was about 10 years ago, and I have never slipped back once since then. It was a truly remarkable change. And if you had to press me to decide which one did it, I would say it was the cognitive therapy - or rather, my own extremely hard work at training myself to apply the cognitive techniques. Over a period of many months, I gradually learned to notice when I was getting stuck in a rut, then gradually learned to think back to when that had started, then learned to catch it at the point when it started and note the thoughts that ran through my head, then learned to rehearse answers I could give myself when those thoughts started, then began to argue back at myself with positive thoughts when I started thinking negative thoughts ("oh god I'm useless I can't get anything right" - "listen to yourself that's ridiculous you get lots of things right") until after many months of struggle I began to win the argument with myself.

    So now, whenever I find I have started to feel down for a day or two, as soon as I notice that fact, I fight back, I use every technique I have learned, and I pull myself back out of it. And I do it as fast as I can, motivated by being terrified of going back to a state of month after month of a vicious cycle of misery that I can't drag myself out of, unable to eat, unable to function, in a black hole with no escape. I am not going back to that place.

    So I thank cognitive techniques for all that - but I didn't need a therapist for it, just the information, the motivation, and the group therapy which was great stuff, and perhaps the drugs gave me a bit of a window of support too.

    But that's depression, what does that have to do with ME/CFS? Well I just want to point out that I know from direct experience what is and isnt depression, and that CBT is a powerful technique that can be highly effective in the right context.

    But before the depressive episode started, and still after it finished, I was sick with WTF (my preferred name to avoid insulting those with severe/true ME by nicking their name, and to avoid the 'slave name' of CFS), which is basically a lot like Fukuda CFS - I could fit Fukuda but I never got diagnosed CFS: my doc warned me that was a diagnosis I definitely didn't want and which would bring me no benefit or treatment anyway, except CBT which he could get me anyway. (Now I realise he was probably protecting me, and I can't thank him enough).

    My first 3 years of WTF were wasted on completely pointless regular visits to a GP who I believed was trying to help me and yet seemed incapable of hearing what I was telling him, or seeing the obvious telltale signs of things like fungal infections I tried to show him. I mean, it was bizarre, he literally couldn't see them! "There, right there!" - "I can't see anything". After 3 years of this crap I happened to say "look, I know I describe 5 or 10 weird symptoms whenever I see you, but that's just to try and help you figure out what the hell's going on. I know some are relatively minor but I know they're all connected. They all started at the same time. Anyway I know I go into a lot more detail than a regular patient would, but I hope you understand that's not because I'm a hypochondriac or something".

    And he gave me that look. Looked up from his desk for once - actually looked at me! - and said "what's so wrong with hypochondriacs? It's a real illness you know, just like any other". And so then I knew: it hit me, the sudden realisation that his weird behaviour was explained because from day one I walked in his office with this list of symptoms, he had made that diagnosis - and decided to keep it to himself. 3 years of completely pointless and wasted sessions with a man who had decided my problems were psychosomatic or maybe just trivial - with a year of pointless psychotherapy along the way. Wind forward a few months, a couple of appointments later to confirm what was going on, and I walked out his office mid-session, never to return. Boiling with rage at what he'd done to me. Which I won't describe now, the consequence of his failure to diagnose a completely separate condition which ended in a painful and embarrassing operation, just because he'd never taken a word I was saying seriously.

    My current doc is under the strictest instructions since day one that if he ever tries to pack me off to a shrink I will walk right out the door. Because I've experienced quite enough therapy now, effective and otherwise, to know exactly how much it affects my physical symptoms. Which is: absolutely not at all. I manage all those issues myself, rather well if I do say so myself, and I always have.

    I've slowly learned, on my own, the hard way, that exercise is NOT a good idea, that my "bizarre" and "impossible" allergies ARE real and manageable, that all this is NOT just going to go away, that friends and family will NEVER understand, that society will NOT give me a break, that the NHS is NOT going to help or believe me, but that in the "alternative" world there ARE lots of things that really can help me a lot. And that I'm going to have to pay for them myself because help from the NHS with any of this is NOT on the way any time soon. And that I'll never now be able to live a normal life because it's too late for me now, and I have to somehow accept that and take whatever I can get from life and not dwell too much on what I can't ever have. Like a proper job, a wife, kids, my own home, a garden, that kind of stuff...

    Every few years, doc puts it to me ever so gently. CBT could maybe help you manage things a bit better. I know your illness is real, it's physical, but CBT might help you cope with it more effectively. You live a rather unusual lifestyle, maybe there's a better way...I don't know...I'm only saying it because my hands are tied, that's the only thing I can offer you, I don't know what else to suggest...

    I'd go for it, if I had a problem managing my life that I thought could be managed any better. I have never had anything against CBT in itself. Except that I just don't trust them after what I've learned and experienced with a GP who successfully deceived me for 3 years of monthly appointments, and after Ive learned about the weasley way theyre taught to deceive their patients.

    So now, having read training materials like this:
    "Managing Medically Unexplained Symptoms"
    and having seen the videos of the Wesselyite training, and having been successfully deceived once, I'll never trust another NHS doc or psych as long as I live.

    Thanks for that guys.


    Yeah. Im glad you got something good out of this particular therapist. Be careful with these people though. In their world, they can tell you: yes you really are genuinely sick, no of course you didnt choose to have this illness, yes your illness is real, yes they are really concerned about it. All of that. But they can still say all that and still say quietly to themselves: its a very real illness with a psychological root cause.

    I expect other types of therapists are far less likely to pull that kind of stunt, so my personal recommendation for therapy for the medically unexplained would be: anything but CBT - its just not worth the risk you get a Wesselyite.
  3. Mark

    Mark Acting CEO

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    Oh and just in case were forgetting the research basics: making up your own loose definition of ME/CFS, picking a group of people who fit that definition, giving them a course of CBT and training them to persuade themselves its better for them to think and say I feel fine all the time, giving them a questionnaire a little while later asking them Do you feel fine?, ignoring anybody who drops out of treatment because its making them seriously ill, adding up the statistics and finding that a quarter of those that stayed the course are more likely to say yes I feel fine than they did before your sessions, getting your mates to review your work and say its as brilliant as you said theirs was the week before, then tapping up your mates in government again for yet another funky set of studies to use up the entire ME/CFS funding pot .all proves nothing whatsoever except that you can fool most of the people most of the timeand maybe even yourself, who knows? (I cant look inside the mans head, and god knows I wouldnt want to try).
  4. Marco

    Marco Old blackguard

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    Mark. An excellent and thoughtful post which, to my mind really nails the abuse of what should be a benign and helpful tool.

    kolowesi

    Thank you for this comment which, whether genuinely believed by your therapist or not, has really made my day.

    "Very early on, the therapist told me I would never have chosen this disease, as all my self-esteem came from my work."

    Despite my own experiences of this illness and my conviction that it is organic, I can't stop feeling guilty that I haven't done enough, am contributing to my incapacity, need to give myself a good shake etc and need to take responsibility for being unable to work. I can't escape the feeling that others who believe I just decided to 'drop out', was 'unable to cope with life' etc might have a point.

    But I've always had low personal self esteem. Rightly or wrongly, what gave me self esteem was academic and career achievement. I can conceive of no way that I would jeopardise this to 'play the sick role' and can conceive of NO secondary benefits.

    I hadn't previously recognised how fundamental what I've now lost was to my feeling of self worth.

    Time to give myself a break I think.
  5. Mark

    Mark Acting CEO

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    Thanks Marco. And you've just reminded me here that I forgot to mention by far the best psychotherapeutic solution I ever found in the last 15 years. Repair of all those insecurities and self-doubts and uncertainties and feelings of aloneness about all this - all thanks to group therapy right here on the Phoenix Rising Forums! Validation. Understanding that millions of people are going through the exact same thing. Realisation that even though you know 100% full well that you have done everything you can do and more, that if nobody around you can see or believe that, you still have the self-doubt. Of course we want to work, of course we don't want to 'drop out'. Knowing yourself and what you did to get to where you were before you got sick, how can you possibly doubt it? Knowing the life you longed for and can't have, why on earth would you choose where you are now? It's madness for anyone to believe that. And yet we do, because we can tell that everybody else does. Well not here we don't. We know it too. I hope you can shake off all those negative feelings and get your true self back.
  6. shiso

    shiso Senior Member

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    In answering the question of the thread, I would say the short answer is a simple "no." However, in a more nuanced answer I would say, "depends on what one means by CBT" and "depends on what one means by benefit." But separately, from an advocacy perspective, I feel that giving CBT any more "airtime" than it has already received as a treatment, rather than a strategy to cope with the disease's effects, is detrimental.

    Starting point: CBT is not a medical treatment
    I think almost anyone who knows they have the disease and has tried some form of CBT would agree that given its most positive meaning and wisest purveyor, CBT does not fix much less create a dent in the physical disease, does not get rid of chronic viral or bacterial infections, does not enable one to work when one cannot, i.e., it is not an actual medical treatment that treats the physical cause of the disease (whatever the cause is).

    What is meant by "CBT"
    From what I've understood from the US literature, CBT in its most well-intentioned form (i.e. those advanced by veteran clinicians such as Drs. Lapp and Bateman and not necessarily called CBT) basically amounts to common sense lifestyle management type "tips" that may help a new patient cope with the disease, the type of knowledge that may be no-brainers for long-time patients who have learned such strategies over time on their own but that may not be common sense to a new patient, the core components being "pacing" - the sensible kind where you discipline yourself to stay within your physical and mental stamina limits, and "acceptance" - the emotional resilience to accept the harsh realities of the disease while remaining hopeful (or at least stoic) about getting better with the goal of living the best life possible in the meantime (whether or not one decides to try different types of drugs or other treatments to get better at the same time).

    This is in stark contrast to how CBT is often portrayed - undoubtedly because this is how it has actually been practiced by many in the UK, US and elsewhere, as other's accounts here have testified to - encouragement to push past, instead of stay within, one's limits and to deny, instead of accept, the objective fact that one has a serious chronic illness.

    "Benefits"...?
    In terms of objective benefits to physical illness, I completely doubt the integrity of ANY study purporting to show any kind of real physical improvement via ANY kind of CBT (the benign kind or the harmful kind). I am as mystified as to how such studies were designed, approved for publication, or allowed to pass muster as science.

    Using "benefit" in the broadest possible sense of the term, however, I will venture to say the pacing + acceptance with Zen mindset (for which one needs no doctor, therapist, or specialist) line of CBT MAY provide some patients who may otherwise be lost, given the lack of doctors and treatment options for this disease in many parts of the US and the world, with the benefit of a coping strategy, while they embark on their respective medical journeys to get better.

    I say this solely from my own experience with taking an online "self help" course conducted by Bruce Campbell that comes with a small handbook for coping strategies designed for ME/CFS patients - that probably would fall under the well-intentioned form of CBT I described above. I took the course when I was at my sickest about 4 months into my illness and nearly suicidal from the horror of my sudden disability and concomitant sudden loss of work, income, apartment, social life and boyfriend and hopes for my future, and the course and the handbook helped me to get a rational and stoic grip on what I was dealing with and practical tips concerning how I might go on dealing with it. It was not the least bit preachy, and it helped me get out of denial and taught me some practical tips about pacing. So in ways that have nothing to do with the physical hardships of the disease itself, I would say I "benefited" from this particular course in the broad sense of the word, in my personal circumstances at the time (with just a diagnosis and no clue how to proceed). I can't and don't speak for anyone else.

    Why discussion of CBT as treatment is reviled by patients, and justifiably so
    I think the first and foremost reason why even discussion of CBT is reviled by ME/CFS patients (other than the significant and terrible fact that practice of the wrong kind of CBT has affirmatively made patients worse) is because of the doctors and psychiatrists and psychologists and quacks who present it to patients and to the medical and research community at large as an actual medical treatment, when it is obvious that it is not one.

    While with other chronic illnesses CBT is offered as a complement to actual medical treatment resulting from actual scientific research into causes and treatments, the difference with ME/CFS is that CBT is promoted as a stand-alone treatment when it is just filler. Where is the actual medical treatment that it is supposed to complement? (....) Right. Exactly. Filler.

    I think it is fair to say that in hindsight, the promoting of CBT as a stand-alone treatment for ME/CFS has significantly contributed to (along with the CFS name and other factors) the effect of trivializing the disease for decades and indirectly impeding scientific progress. I can see how any favorable discussion of CBT as a medical treatment, however benign, thus can be seen as continuing to contribute to the effect, however unintended, of keeping ME/CFS mired as a neglected disease that is not taken seriously by the medical establishment or the public.
  7. shiso

    shiso Senior Member

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    Thanks Kolowesi, Marco and Mark for your posts. I'll just say that your posts resonated with me.
  8. Mark

    Mark Acting CEO

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    Very, very nice post Shiso. Thank you for explaining so well why many people don't even want to hear it mentioned. I begin to see that point of view slightly better, with the "purported medical treatment" argument. But really, end of the day, I know I'm standing out of line but I still don't really get this point of view and I don't agree. And I'm speaking as somebody the strength of whose views against the policy of CBT for ME/CFS are as strong as anybody I've ever seen posting here.

    Perhaps it comes down to whether you think that "all publicity is good publicity" or not. That might be true for people (although I would doubt Simon Wessely would feel that the views of him expressed here help his cause) but I can't see it for mainstream and well-known concepts like CBT, which is set for massive expansion here in the UK if the new govt goes ahead with Labour's plans. CBT certainly won't be any better-known or better-respected due to publicity from us.

    I just can't fathom it. I can't for the life of me see how this thread I'm on right now is an advert for CBT. A balanced, respected, world-leading ME/CFS forum features a bunch of intelligent, articulate, well-informed long-term ME/CFS patients with a wide range of views and experiences, and asks them "Has Anyone Here Benefited From CBT At All?" And in basically every single post, the answer comes back: "NO! I was stupid enough to try it, and it's a complete disgrace. I am angered that you are even asking the question here - is this a wind-up? I had it for depression, it was very good. But for ME/CFS it is dangerous and wrong and a disgrace and I want medical treatment and research instead, not this mockery of health provision."

    I like the idea that somebody googling for "CBT ME CFS" might stumble across this page. And I like having the opportunity to set down my views on CBT for ME/CFS. I'm not in the least worried that an army of people are going to pop up from nowhere saying "CBT saved my life, thank god for CBT" and take over the forum. I'm very confident that the reality will come through in our discussion here, and I think that's a good thing. Am I missing something?
  9. alex3619

    alex3619 Senior Member

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    Hi Mark

    I dony disagree with anything you said here. I did CT at a time when Wessely was not really in the picture globally (1989), and found it a useful tool, but no more than that. Indeed I was already familiar with most of the views due to my reading Buddhist philosophy. Were I living in the Uk or any other country that has embraced the biopsychosocial model, then I would never even want to walk in the door of a CBT therapists office, I agree the risk would outweigh the potential advantage.

    Your description of the problems with the biopsychosocial research mostly fits my own view. I personally think that the whole somatic syndromes crowd is desperate to find and confiscate authority over any disease that doesn't have a known cause because the entire movement is dying, science is slowly disproving every one of their claims, and disease after disease has gone from psychological to biological. In a couple of generations the movement may well be dead, but I worry that any newly discovered disease they will try to embrace, just as they have before.

    Bye
    Alex

  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I used CBT when I received a devastating letter from work last spring, I thought I was going to be accommodated at work, because I had a Dr's letter. But my work place did not do anything for me! I was already dealing with a lot of pain and this just sunk me into a depression for a while.

    I then had a flare up from the continuing pain in the late summer/early fall of that year and paid him a couple more visits. He was helpful in listening to me and making not feel insane! He was very supportive and very much believes in our illness.

    My 2 cents.
  11. Martlet

    Martlet Senior Member

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    Fox will do that to you. I found the cure was watching MSNBC between 8-10pm Eastern.

    But seriously, it appalls me. Reminds me of the psychiatrist in East Anglia who told one woman she fell ill because she had too many children and another woman that she was ill because she needed more children.
  12. Marco

    Marco Old blackguard

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    What I find somewhat surprising is that the CBT being pedalled, that is that ME/CFS is largely/wholely caused and perpetuated by faulty illness beliefs and deconditioning, is actually swallowed whole by those in positions of power and even advocacy groups that should know better.

    Conspiracy theories aside (accepting that Prof Hooper makes a pretty convincing case) :

    No doubt, there is the role of the regular trotting out of so called robust RCTs that are claimed as providing an evidence base, but even so, does anyone examine this 'research' critically or even question the underlying logic?

    Governments I can understand. They would much prefer to believe that ME/CFS is a fairly harmless, 'unexplained', probably psychiatric problem that can be easily and cheaply fixed to get people off benefits or PHI payments and back to work. The alternative of a seriously disabling/potentially fatal, neuro-immune disease leading to decades of morbidity and potentially contagious is probably not something they really want to contemplate.

    Joe public either doesn't care if not directly affected or more likely sees ME/CFS patients as an easy target for their prejudices about the undeserving sick, wasters, malingerers etc. Where the government, medical profession and media appear to support this prejudice - so much the better.

    The medical profession generally is a little harder to understand. I'm sure your average physician does find it 'frustrating' having to deal with patients that don't play ball by showing abnormalities on routine tests and can't be sent off with a prescription and I'm sure it doesn't help their egos to be completely out of their depth. And to be fair, your average GP can only work within the officially sanctioned guidelines or face the wrath of the establishment as per Dr Myhill. But isn't the medical profession the least bit curious about the thousands of published studies showing pathology and doesn't this make them feel just a little queasy about recommending psychiatric 'treatments' and graded exercise?

    As for the ME/CFS charities and advocacy groups who give CBT house room. Are they convinced that CBT is being offered as a palliative adjunct as it is with other 'organic' illnesses? Perhaps they believe it may help some patients within the CFS wastebasket - so why not. Perhaps because the whole CFS thing has muddied the waters to such an extent that its impossible to construct a convincing counter argument?

    But getting back to the logic and applying Occam's razor.

    One one hand we are told that ME/CFS patients may have contracted a virus, had psychological stress, over- exercised etc which causes a period of illness. Rather than recovering from this as normal, they start ruminating on the various 'somatic' symptoms, start believing they have a serious organic illlness and become phobic about exercise, withdraw from society, friends, family, the world of work to enjoy the secondary benefits of the sick role. Over time, lying around bedbound or avoiding exercise, they become physically deconditioned, making them feel even more fatigued, demotivated and stuck in sick mode. The simple solution, persuade them they are not ill at all, ignore the symptoms and exercise your way back to being a productive member of society.

    Sorted!

    Just a few problems with the core logic underlying this analysis. If I understand correctly, the peak age of onset for ME/CFS is between 20 and 30 years of age. Many if not most who develop ME/CFS have been active, intelligent, motivated, careeer oriented and often with no previous illness. Logically, by the age of 25 say, isn't it likely that we will have experienced many bouts of the usual bugs, viruses etc, will have been through 'exam stress' many times, know that exercising doesn't harm us or at least know our limits etc and, if lucky, are on the upward career path typical at that age. Why all of a sudden would we sudenly start catastrophising and start believing that we are not going to recover as usual? And lets face it - 'normal' folks are prone to catastrophising even colds and flus (how many times have you heard someone complain that they are dying from the cold). How come these people don't develop 'abnormal illness beliefs'? Do the secondary benefits of the sick role compare to what is lost?

    As for deconditioning, I'm sure it happens when bedbound. But those of us who were physically active prior to illness know that the 'deconditioning' started from day 1. A sudden inability to tolerate aerobic exercise.

    In contrast you could always

    (a) actually listen to what patients are telling you;
    (b) pay a little more than lip service to the thousands of studies documenting pathology;
    (c) and applying Occam's razor, consider the possibility that people with ME/CFS have contracted an organic illness that you have not as yet identified and have not recovered from it.

    The logical course of action then becomes clear. Stop wasting money on psychiatric 'therapies' that have no possibility of working and use that money to crack the illness.



    By the way. My naive questions are largely rhetorical.
  13. Galena1

    Galena1

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    Hi All - Some fantastic and informative posts in this thread that should be made compulsory reading for 'da establishment'.
  14. jewel

    jewel Senior Member

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    Marco -- "And lets face it - 'normal' folks are prone to catastrophising even colds and flus (how many times have you heard someone complain that they are dying from the cold). How come these people don't develop 'abnormal illness beliefs'?" So true!

    " Do the secondary benefits of the sick role compare to what is lost?" Truer still. Thanks for your insights! J.
  15. Tammie

    Tammie Senior Member

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    Too wiped to read thru this entire post, so if I am repeating something, I'm sorry, but to very briefly sum things up.....

    Good CBT involves looking at genuinely irrational and unhelpful thoughts/ behaviors and finding more adaptive/realistic ways of thinking/acting

    .......the UK's perversion of CBT is actually anti-CBT - it is literally the opposite of that, since the therapist is attempting to replace reality (the knowledge that one has a real physical illness) and helpful behaviors (attempts to find good treatments) with the irrational and entirely unhelpful belief that the illness is all in one's head and with harmful behaviors involving trying to push thru their illness

    ETA: Empathy and compassion are earmarks of a good therapeutic relationship, and those qualities are obviously entirely missing in the twisted UK version of CBT
  16. spacee

    spacee

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    I apologize, I do not know how to do 'links'. If you google nf-kp.org, you will find the collection of research articles on this important immune pathway. The research is for cancer but
    there are other diseases listed. To find CFS, click on Disease and scroll down to Chronic Disease States and click.

    There you will find several articles on how GBT/GET can harm patients with CFS. That said, I was able to do graded exercises myself but only when I was on kutapressin (nexavir) and
    later Transfer Factors. So, my personal exerience would say that it is not impossible to do GET, but you have to listen to your body very closely. BTW, I started in a warm, water
    therapy. One on one with the teacher. Exercise 5 mins, rest 5 mins, Exercise 5 mins. I could do that 2 times a week. The physical therapist told me that it would take 3 months
    to see improvement but after that I would be able to join the 30 min. class. By golly, he was correct! After some months in the class, I was able to very, very slowly start land
    exercises. Like go to the YMCA for 5 minutes to used the machines (Yes, it felt completely stupid to do that) after a week, 10 mins, then 15, then 20 mins.

    But there were a number of years that I could not do any of that. Hope this helps somebody!
  17. SteveRacer

    SteveRacer Demon on Wheels

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  18. Enid

    Enid Senior Member

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    Two friends had a brief experience here about two years ago when it was the official and only thing or lose Benefits. Pressurised into accepting DEPRESSION - neither had. Never went back.
  19. Fejal

    Fejal *****

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    CBT helped me lessen the severity of the depression and anxiety, helping me cope better but that's it.
  20. Wonko

    Wonko Senior Member

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    nothign wrong with CBT properly applied - the problem is it's not (at least in the UK) and is used to foist a dangerous and incorrect belief system on pwME

    if it was used to teach people how to cope within their limits then it might benefit some - tho tbh I suspect that most pwME have already figured out pacing etc long before they get to the stage of being called up for CBT

    so CBT - could be good - could be useful - isnt

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