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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
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The CAA Pamphlet to Educate Doctors

Discussion in 'General ME/CFS News' started by starryeyes, Dec 24, 2009.

  1. starryeyes

    starryeyes Senior Member

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    :Sign Good one: Justin! It's great to have a lawyer here.
     
  2. Cort

    Cort Phoenix Rising Founder

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    I don't know if you can entirely get away from CBT. Dr. Klimas recommends it; Dr. Jason's study had CBT elements in it; perhaps you could reframe it as something that can aid any patient with a chronic illness but not as a specific treatment for CFS. The problem as Orla noted is that doctors give up the ghost after hearing that CBT may help. They should understand that behavioral therapies could be of use to anyone with a chronic illness but they don't get that.

    I think its interesting that Lynne Matallana, the founder of the National Fibromyalgia Association wrote a book on FM that credited a great deal of her recovery to using CBT like therapies and she highly endorsed them. The thing is that FM, while still controversial, has better standing in the medical community now; it can handle that - the research will continue. Federal funding for CFS research, on the other hand, is actually sinking lower every year. We're not solidly established in the research community.

    On the other hand I will say that if the stress is involved in CFS then behavioral therapies that incorporate a mindful approach to the way we live and think will and should have benefit. This only makes sense - if our stress systems are flattened by everyday stresses - as they certainly appear to be - then you have to take extra care about things not only like too much activity but also like negative thought patterns. These thought patterns dont cause CFS - alot of people have alot of negative thought patterns - but they IMPACT CFS patients more because their systems are so sensitive. If CFS patients are sensitive to external stimuli such as crowded environment, lights, odors etc. then why not internal stimuli? IF the system is exhausted isn't it going to be tweaked by everything? Whats the difference between CFS patients system over-reacting to small amounts of drugs and CFS patients systems overreacting to the hormones and cytokines released by the stress of negative thoughts? Either way its a system out of balance, frayed and bleeding.

    My prediction is that at some point its all going to come together and we're going to understand why all these diverse therapies can be helpful.

    I think GET can and should be dismissed entirely. I think its very dangerous program and if the CAA hasn't vigorously come out against it then I think they should and I can't imagine that they wouldn't.

    One problem with issues like cardiac dysfunction and mitochondrial dysfunction is that there really aren't enough solid studies to prove to the scientific community that its present in CFS and I think the CAA wants that before they're going to say its there.

    I looked at the CFS Toolkit and it really is disturbingly heavy on CBT. The CAA produced their own physician program over a year ago- I don't know why the Toolkit is still up there but its not a very pretty document. One problem is that CBT has gotten the lions share of treatment studies. There haven't been that many other ones but Dr. Lerner has published studies on Valtrex I think it was -they should certainly be represented because with the right patient that drug works. Most treatments are NOT going to get studies on them. of course, the CAA and other groups will have to rely on anecdotal information from trusted sources on them.
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    As on most things, I agree with you here. I was just addressing GET and the British model of CBT. CBT or another psychotherapy specifically to help someone deal with a chronic illness is good. Specifically CBT to help a patient change unhelpful (maladaptive) beliefs such as that they do not have a serious illness or they have a purely psychological illness and that they should just push through it would be helpful to most pw/ME. I would be happy if this appropriate type of CBT were promoted or listed as being theoretically and anecdotally (or what ever type of evidence exists) helpful. But it has to be specified that the unhelpful illness beliefs to be challenged in the patient are those mentioned above and not the spurious "neurotic fear of activity" and other "abnormal illness beliefs", in the parlance of Wessley et al.
     
  4. Gerwyn

    Gerwyn Guest

    The only scientific evidence for CBT is a comparison between people with mild depression having CBT or antideprssents or both . both wins hands down.


    The problem of course is that antidepressents dont work in this group of patients at all.So CBT is as good as atreatment known not to work

    So a combiination is better than treatments innefective on their own.

    We dont know however whether the combination is better than placebo because there was no placebo arm

    Every other claim for CBT has been extrapolated from this study.And any therapy has been generieralised as CBT.

    mild depression based on anger,grief unfullfilled expectations Seiglemans helplessness and so on does respond to talk therapy--

    CBT is unique in its inability to foster change in this group the relapse rates are horrendous
     
  5. starryeyes

    starryeyes Senior Member

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    Thanks to Stuart for posting these links some months ago here at PR.
    Here's what your doctors had to go through to receive Continuing Education Credits from the CAA:

    Course Instructions

    1. Read all required materials:
    These include:
    1. Didactic Text
    2. Assessing and Documenting Impairment in CFS (Appendix A)
    3. Energy Conservation in CFS (Appendix B)
    4. Cognitive Behavioral Therapy Fact Sheet (Appendix C)
    5. CFS Resources (Appendix D)
    6. Case Study One: Lillia
    7. Case Study Two: Rita
    2. If your session times out or if you must re-enter the website go to https://www.clinicalrounds.com/obiexam/cfidslogin2.asp. Access your progress profile by clicking on the course description for Course Two, WB1032, CFS: Diagnosis and Management. Once you open the new screen click on “Begin Exam” located under “Status” and complete the Self-study Learning Assessment. After participants successfully* complete the exam, they are given access to the Self-study Course Evaluation and the certificate of completion.

    *Participants are given two opportunities to score 70% or higher on a learning assessment and are also asked to complete a course evaluation. At that time, a certificate can be requested.

    http://www.cdc.gov/cfs/cme/wb1032/introduction.html

    This is a different page on the web by the CAA that tells doctors to treat us using CBT and GET. This is also called a "Tool Kit". It needs to be removed from the web too.

    http://origin.cdc.gov/cfs/pdf/Cognitive_Behavioral_Therapy.pdf

    Here's one of the CAA's GET Guides:

    http://www.bartscfsme.org/Documents/GET booklet web July 2009 (2).pdf

    Here's yet another page where the CAA extols the virtues of CBT and GET:


    "Patients can learn to modify their activities to avoid postexertional malaise and therefore improve their health status and function. Postexertional exacerbation of the illness must be considered when developing intervention strategies for people with CFS. It is essential that rest and activity are balanced to avoid both deconditioning from lack of activity and flare-ups of illness due to overexertion."[/B]

    http://origin.cdc.gov/cfs/cme/wb3151/chapter1/framework.html

    And yet another page by the CAA that says things like: "CBT is about examining how your thoughts, feelings, actions and symptoms relate to one another. This enables you to understand the link between them, and then try out new ways of breaking those links. A CBT therapist helps you to understand your illness and change the way you manage it."

    "GET is all about gradually increasing your physical activity in order to reverse the inactivity and physical deconditioning associated with CFS. We know that exercise/activity helps to reverse many of the physical consequences of CFS."


    "Do these Treatments Work? Since 1996 there have been eight published studies of these two treatments, compared to various other treatments. These studies were reviewed by for independent groups of scientists, who all concluded that active rehabilitation with CBT and GET are the most promising of all treatments in adult patients able to attend hospital clinics.
    This year a further study showed that CBT was also helpful in treating adolescents with CFS. No study has shown any pattern of harm caused by either treatment."

    And then there's a picture of Peter White again, smiling away at us.

    http://www.cfids.org/sparkcfs/clinical.pdf

    There are many more materials than this by the CAA. Do you think they'll remove them now that they say they've changed and are no longer associated with the CDC? Do you think these materials are still being used to train doctors today?
     
  6. Orla

    Orla Senior Member

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    Treatment and attributons

    I mentioned this before:

    <Some of my concern would be about the impression medical people would get if they saw CBT recommended for ME/CFS.

    Personally I think counselling might be more value neutral in the impression it gives, and also in a way in what it does (not that I would want that as a cornerstone of "treatment" either). Anyone could go to counselling. One does not have to have a mental health problem as such to go to counselling. Other stategies could also be listed, if listing psychological support measures, such as supportive listening, education, and support groups. These are just the sort of thing that would be suggested for other medical diseases.

    The problem with CBT is that I think there is a good chance the minute a medical person would hear the phrase CBT, their brain would go to phobias, depression, maladaptive behaviours etc. (I only studied psychology for a year, a long time ago, and this is what springs into my head when I hear CBT). So in the medical person's head this could be what we would be lumped in with. I don't mean that in an offensive way to people with other condtions and problems. It is just that it is wrong and misleading to view ME/CFS medically as a mental health and behavioural problem.>

    Here is an interesting post

    Effect of physician-recommended treatment on mental health practitioners' attributions for chronic fatigue syndrome.

    http://www.forums.aboutmecfs.org/sh...ent-on-mental-health-practitioners-attributns
     
  7. Dolphin

    Dolphin Senior Member

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    Age of onset

    In this population study:
    the mean "age of onset of fatigue" for the CFS group was 36.3 - see Table 4 at: http://archinte.ama-assn.org/cgi/reprint/159/18/2129

    So, like you say, younger than 40-50.
     
  8. muffin

    muffin Senior Member

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    Stress is involved in every single illness and disease. Stress knocks the immune system and plays games with the brain. So yes, prob it hurts those of us with CFIDS but it also hurts those with every other disease. Maybe those with cancer, MS, Parkinson's, depression, broken bones, heart disease, and so on also would benefit from CBT. But hitting the CFIDS people alone with CBT is insulting. And it is meant to be insulting by the CDC. The CDC wants us to look as weak as possible and they have done a rather fine job of instilling this in the heads of the doctors and public.
     
  9. Dolphin

    Dolphin Senior Member

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    Yes, CBT is a loaded term - it's a mixture of cognitive and behaviour therapy. What sort of conditions can be effectively treated by CBT alone? Generally psychiatric ones.

    Also, the CBT that is promoted in the literature from the UK and the Netherlands doesn't focus much on stress management. It is about things like focusing on symptoms less, fear of activity, doing more activity, etc.
     
  10. Sunshine

    Sunshine Senior Member

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    What CBT is used for and when:

    As anyone who is in the healthcare profession will tell you, CBT may be useful and is designed for people who have dysfunctional illness beliefs.

    Cogntiive Behavioural Therapy.

    Cognitive = the way we think and process 'data'
    Behavioural = the way we act and carry out 'tasks' both alone and in groups
    Therapy = process of carrying out the new changed set of rules. The core plan.

    Cognition is directly linked to behaviour: we act upon our thoughts. CBT 'works' on the premise our misplaced thoughts alter our behaviour. CBT can only be used effectively on a behavioural issue and not a biological one. Psychology affects biology, both positive and negatively. Psychology is not the cause of pure biological illness, and not the cause of CFS.

    CBT is a tool. If your mental cognition is already optimised, CBT will not produce any lasting functional gains in ANY illness that limits functioning. CBT is entirely unhelpful for those who think normally (conventionally), or conversely equally unhelpful for people who will not engage with CBT and the benefit it may bring.

    Misplaced 'faulty' thinking can and does often affect those with chronic illnesses, CFS included. This is what CBT is apparently only used for in CFS by the outsider who is not aware of CFS politics and how politics has seduced medicine and covered it's eyes with dollars.

    Example of benefits of CBT for biological illness/disease:

    Some people after suffering an MI (heart attack) may believe they are in great danger of a repeat event and restrict themselves from all activity. This has physical, mental and social negative affects. The person who is terrified of another potentially fatal MI may stop everything and refuse to go far from a hospital or from a place of safety. (e.g. the home). This could lead to...........

    * Further deconditioned heart (that is already permenantly weakened) by avoiding all exercise/walking
    * Anxiety, significant risk of agoraphobia in some
    * Social exclusion, lack of contact with people who 'want to go out'.
    * Relationship breakdown etc.

    CBT in this situation could be helpful. (NB: Benefits are never predicatable like a medication).

    Lets look at a 'controlling' situation that is not based on sudden damage, or sudden onset of fear of death. E.g. Diabetes. Some people with diabetes become incredibly depressed over the requirement of undertaking an insulin regimen once diagnosed. Again, this has physical, mental and social affects. Same with Asthma. Some continue to smoke with asthma and have many unnecessary attacks taking themselves out of work or the home and into the misery of hospitals. In some ways, this is self destructive.

    In these situations CBT may be helpful if this brings positive changes to the person.

    Anyone who states (especially psychologists/psychiatrists) that they don't believe you are mentally ill if they are suggesting CBT to you as a CFS patient, is a liar. CBT requires mental illness to positively affect your behaviour. Yes CBT is used in physical biological illnesses/diseases as described above, but only for people who cannot successfully 'think'.

    Sit down with a diagnosis of MS, and you will not be offered CBT by your doctor.
    Sit down with a diagnosis of Parkinson's disease and you will not be offered CBT by your doctor.
    Sit down with a diagnosis of Rheumatoid Arthritis and you will not be offered CBT by your doctor.

    Why?

    CBT is a therapy for people with mental illness issues who are damaging their lives either subconsiously or willingly.

    Yet............

    Sit down with a diagnosis of CFS and you will be offered CBT by your doctor!!!!!!!!!!!!!

    Why? Because of politics. Not because of what CFS is.

    The issue for CBT then in CFS, is how it is metered out. This is a very very important point that cannot be stressed enough.

    The history of the faulty 'one size fits all' use of CBT in CFS.

    What is UNIQUE in the CFS scope of things, is CBT is proposed by psychiatrists as a UNIVERSAL TOOL OF MANAGEMENT in CFS patients. Psychiatrists and undeducated medics etc believe CFS is a dysfunctional illness belief and all cases of CFS are the same. This comes from medics own faulty illness beliefs, ironically these are the people who need CBT themselves. Prejudiced, bigotted and biased people sadly maintain ill feeling towards people with CFS.

    When these people are doctors themselves, this becomes dangerous. Astounding 'cures' of 70%+ for severe CFS patients are produced as 'evidence based medicine' by psychiatrists. Read the papers, read the criteria used, read the drop out rate, and read the length of time the CFS patient functions at a sustained level at it is clear that the miracles of CBT in CFS are pseudo scientific research written by bigots, read by bigots, produced for bigots.

    There are never miracles in CBT in any biological/organic chronic disease, period. If there were, then the person (by logic and classification of having a biological/organic disease) cannot have had a bioloical organic disease. This is forgotten by psychiatrists and supporters of the psychiatric view of CFS, because it de-legitimizes their findings. These folk who suggest 'CBT for all CFS' as a way to 'treat' CFS believe CFS is a life-style choice, and CFS is learnt response, a form of avoidance of activity and responsibility.

    This is why, unlike people with Asthma, Diabetes, Heart Disease or any other serious chronic health issue, in CFS, CBT is recommended UNIVERSALLY.

    Not only is this inappropriate, it is insulting for the person with CFS, who often has entirely normal cognition and does not need CBT. (Rates of depression in CFS are no higher than MS. MS patients are not universally given CBT at all, only for people who need it). Indeed, no other chronic neuro immune illness has CBT recommended as a 'cure' or as a management strategy other than CFS.

    This cannot be ignored:

    It is critical that medical professionals/friends/family who know a person with CFS who are uneducated on CFS are aware of this fact when innocently recommending CBT most probably when reading the CDC website on CFS management and treatment protocols.

    Reality:

    Outside the 'unique' situation of the much maligned and neglected group of CFS patients, CBT is always metered out in clinic on a case by case basis. This is done by talking to the patient and enquiring about their barriers to activity and ability. A person attending a health psychology course for clinical obesity with a bad attitude who uses CBT may have some benefits if the 'new' mindset created by challenging automatic negative thoughts is sustained over time.

    A person wtih CFS who is mostly a positive person who endures severe unrelenting muscle pain at rest and severe disablement, yet manages not to take large amounts of pain killers, rarely complains, and 'paces' their life (we all pace, it's common sense) does not need CBT. CBT will force these CFS patients to ignore physical symptoms and within time, they will relapse. Some will not recover. In extreme cases (if attending a gym and forcing their body), they may die if CBT is used in combination with exercise.

    NB: For graded exercise to be used effectively in CFS, it must be used in combination with CBT. The CBT creates the new mindset, and effectively 'programmes' one's brain to ignore the pain, shortness of breath, dizzyness etc a CFS person will experience when going to a gym. If successful, a programme of graduated activity and CBT works in people who are mentally ill and misdiagnosed with CFS. Within months, their CFS symptoms often vanish and they are back at work and they do not relapse!!!!!!

    What is wrong, is the views of people who believe this would work for people with genuine CFS, who have an underlying neuro immune disorder. It cannot possibly work. If so, why do the CDC recommended it? It's obvious why. To make the 'failed' CFS people on CBT the fakes, and the cured (fake) CFS patients the hero's who really 'try hard' and 'apply' themselves. (We've all seen the victory websites on the Internet of 'beating' CFS, a fine accomplishment in an incurable disease that has no treatment).

    CFS is 'presumed' by the CDC and other groups to be linked to deranged beliefs. There is simply no evidence that CBT works in people with neuro immune disease and increased activity can be sustained without relapse. There is some evidence CFS patients are willing to be compliant to suggestion and temporarily increase activity levels.

    In CFS, the underlying immune disorder will eventually (if not in days/weeks but months) lead to a relapse in the illness. This is what separates pathology with psychopathology. CBT is brain washing, we all know that. One can brain wash one's self in a positive matter to cope. CBT enables us to cope, when we cannot cope. Yet there is a limit on it's safety and it's point of insertion into a persons life with ANY chronic illness. If we are going to brain wash our population in medical circles, it must be under consent from the patient, and because the patient is interested and agrees they 'think' dysfunctionally. Sadly, the average long term CFS patient is easily manipulated and co-erced into treatment they do not wish to do, to 'please' the practioner and to not be labelled as mentally ill by refusal to comply.

    This must be stopped.

    Universal CBT for all, will never work and in people who are submissive and desperate to please, will only harm people as they will do far too much. The long term benefits of CFS in people with proven classic CFS abnormalities do not exist. The harmful biological effects of CBT forcing CFS patient to exert themselves do exist.

    We know from research activity in CFS causes some very nasty things to happen to the human body:

    Increased inflammation via Cytokines/Chemokines
    Increased Oxidative stress
    Gene changes
    Hypoperfusion to the brain stem
    Increased lactate[
    Vasoconstriction/I]

    People with CFS who feel very ill at rest, who are forced to do increased activity (via CBT) are therefore harmed to make them (allegedly) better. Yet none of the above is 'better', but actually worse. 'Success' using CBT for CFS are in people who meet only psychiatric CFS criteria who's CFS includes the mentally ill and for people without the classic immune symptoms and post exertional malaise. Include these people in any CBT trial, the 'success' rates drop from 30%+ of temporary increased activity to far lower. (Post exertional malaise and crashing with latent response, is the defining feature of CFS. Take this out, and CFS is no longer unique).

    CBT is a powerful tool:

    I can use CBT and convince a diabetic to eat more carbohydrate food.
    I can use CBT and convince an asthmatic to work in a dust laden paper mill.
    I can use CBT and convince a heart attack survivor to take up athletics.

    The question is, is it moral I do this and is it appropriate for the person I do it too?

    As activity in CFS is shown to induce inflammatory responses that make pain worse, that induce relapse and other distressing symptoms, CBT in CFS is only appropriate for a sub-group of CFS patients who are in ownership of dysfunctional beliefs about their CFS and who could do much more if they actually did do much more. What is the true percentage of this small group? No one knows. This is only a low percentage of people with CFS, and to suggest we ALL need CBT is as previously explained offensive to most and equally damaging.

    An Asthmatic having constant asthma attacks in a paper mill may well be more 'productive', well may be less of a tax burden, but they are also suffering. Equally so a CFS patient who is in terrible pain from ignoring the physical symptoms who relapses (eventually) from increased activity and who waits months or years to get back to where they were because of CBT is also suffering.

    CFS is defined by unstable, unpredictable, and un stoppable relapses in physical functioning from viruses/infections, from 'stress' and from activity. This is no different to Lupus. No Lupus patient will be told 'people like you' benefit from CBT'. No they don't. The same should apply for people with CFS. It's never, 'people like us', as we are all individuals.

    We don't become a world united group of dysfunctionally thinking CFS patients, because people with vested interests who deny CFS affects people with neuro immune disease say we are. Some people who aren't optimising mental clarity and life choices benefit from CBT with ANY disease, not just CFS. Yet are already mentioned, CBT is recommended as a way to 'get better' from CFS to ALL sufferers which is simply not true.

    If stereotypes guide medical management, then racism/sexism/homophobia etc are all great and we should introduce these into the medical profession also. Maybe not though....... Yet prejudiced views about people with CFS remains and CBT 'for all' - remains too.

    Which must stop.

    This where the CDC and other groups are very mistaken and 'dial a CBT' for their patient (instead of a pizza) when actually, very few of us ordered up CBT at all, but are being presented it on a plate as if it's our finest meal we could be served and we should all be terribly grateful or people trying to help.

    Err, no.

    People in helping professions know this, and also can detect quite accurately who CBT may help. Let me make that perfectly clear. People who still (after decades of bio medical research findings in CFS) demand that CBT is on the menu for ALL people with CFS, and that it reduces symptoms long term, are delluded and should consider CBT themselves to train out their own unhelpful beliefs. The use of CBT must always be appropriate. Inappropriate therepeutic intervention in any disease can be harmful, and even fatal. That includes CFS. Anyone with CFS who undertakes CBT in combination with a graded activity programme should be able to consent to CBT and be an adult.

    CFS patients may be keen to take legal action against ANY medical professional who tells the CFS patient to go against what their body is telling them, only to relapse from mildly affected to severely affected. Especially in the light of recent XMRV findings in CFS patients.

    The use of CBT in persons with CFS is clearly NOT the same as in other diseases (where CBT is given only to those with dysfunctional thoughts) and this needs to change very soon before a swathe of litigation takes place for those now in wheelchairs who were functioning at a higher level, before CBT induced a permanent relapse.
     
  11. Mithriel

    Mithriel Senior Member

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    Beautifully stated.

    Mithriel
     
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Yes, i agree. And this is how the myth that CBT cures CFS started. It is such a loaded term and practice, that any organisation purporting to be representing CFS patients should be very sensitive about perpetuating the myth, and avoid using the term or referring to the practice.

    What I don't understand is why anyone who has battled with CFS, battled with trying to get recognition from friends, family, doctors and the authorities for an obviously biological illness, is trying to defend a practice where the potential dangers to individual patients, and the CFS community as a whole, clearly outweigh the small benefits? Yes even healthy people could do better with CBT. It is not a cure, just a coping strategy.

    I would much rather funding go towards finding a cause of CFS than to ill-conceived treatment practices run by those who clearly have their own self interest at heart.

    The CBT pushers can make a valuable contribution - if they all fell into a big hole in the ground and were never seen again, the collective good vibes generated could possibly be enough to cure a whole generation of those suffering with CFS.
     
  13. Marco

    Marco Old blackguard

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    Sunshine

    That is just brilliant!

    You have completely demolished any pretence that the use of CBT in ME/CFS is for purely supportive or palliative reasons.
     
  14. Leitwolf

    Leitwolf

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    Hi

    Has anyone of you seen “body snatchers”? The discussion here reminds me strongly of that film. Those who apparantly flipped sides show a lot of paralleles with those aliens in the movie. Not only they would constantly play down the sheer monstrosity of the action, they would also try to persuade us by telling how the grass is greener on the other side. It will all be good, just give up your perception, your behavior, yourself..

    I oppose CBT not only because it is appearently useless and harmful, and is instrumentalized to diminish and fool the sufferers. Most of all I am against it, because I would like to stay who I am! I would like to keep my cognition, my behaviour, my conscience just the way it is. I see no reason to give it up, just because I have a physical disease (btw. I have been working as system analyst, my IQ is above 145 and I do have a proven immune (MBL-) deficiency). I would love not to be questioned by any person not half as bright as myself, who makes money with by the fraudulent use of his doctor title, and is morally questionable, to say at best.

    What’s more, isn’t this a very strange discussion? Ever since, mankind has been fighting wars over feelings and believes. Comparably unimportant aspects as how to practice your religion have led to millions of casualties. That makes me think our cognition could be something valuable, something worth fighting for, and certainly nothing to give away for free at the next shrink. No sir, I will not give up my will. Especially not for the empty promise of a symptom relief. And I think we should regard all these attempts to diminish us as what it is – a straight forward declaration of war on the patients. No one should ever dare to question the will of a free man as this clearly violates human rights. The reluctance to accept this simple conscensus puts CBT promoters into perspective.
     

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