1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

CBT, GET, ME/CFS & the norm of social responsibility - some thoughts, for what they're worth

Discussion in 'Action Alerts and Advocacy' started by Tom Kindlon, Jan 19, 2014.

  1. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    250
    Likes:
    759
    (just an observation)

    I’m reading an introductory psychology book to try to fill gaps in my knowledge.

    I came across the following:

    --------------
    .
    -----------------

    I think this is one of the reasons why the models underlying CBT and GET are annoying: they assume we have caused the problems we have. Similarly, we can overcome the impairments and symptoms if we just try hard enough. In such a situation, “the norm of social responsibility” applies and we aren’t considered worthy of help and support.

    As I’ve mentioned before, the model of the illness that Peter White and the Barts service seems to have e.g. based on their submission on the draft NICE guidelines (some extracts here: http://bit.ly/11KW7zm i.e.
    https://listserv.nodak.edu/cgi-bin/...P=R2063&I=-3&d=No Match;Match;Matches seemed very similar to me to the model some people might have for people who are very obese i.e. that they caused the condition themselves and that they shouldn’t receive too many supports and aids – they can conquer it with enough will-power and that giving supports like parking badges may get in the way of them pushing themselves enough.

    It annoys me when people say that the reason one doesn’t like the CBT and GET models for ME/CFS is because one is prejudiced against mental illnesses. It is a lot more complicated.
  2. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,807
    Likes:
    907
    US
    You make a great point.

    Since we appear healthy or mostly healthy, some people jump to the conclusion that we must be causing our fatigue by being out of shape, not getting out enough, not socializing enough, not pushing through, etc.

    So others don't feel guilty about saying cruel things to us and otherwise mistreating us.

    It applies to how we are treated in many ways, not only for CBT and GET. Some of us have heard we are "too young" to have joint pain, real back pain, etc.
  3. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

    Messages:
    362
    Likes:
    433
    England
    That definitely helps to explain people's attitudes to us.
  4. Snowdrop

    Snowdrop Senior Member

    Messages:
    384
    Likes:
    541
    Toronto
    I think what Tom Kindlon had to say above is very central to the reasons for a great deal of cruelty toward the vulnerable.
    I think this concept ought to get more attention and the institutional perpetrators called on it.
    MeSci, SOC and Tom Kindlon like this.
  5. alex3619

    alex3619 Senior Member

    Messages:
    6,902
    Likes:
    10,560
    Logan, Queensland, Australia
    This attitude has been discussed in the medical literature before, and even goes back to the American Civil War. In the nineteenth and earlier centuries there was always an attitude of the the deserving and undeserving disabled. Not all disability was equal. Similar the notion of shunning the sick goes back to the pre-Christian era, and includes things like shunning or stoning those with leprosy. The Inquisition burned women alive, or incarcerated them in prisons, for being different, as it meant they were possessed by the devil.

    Ancient pagan medicine had a practice of drilling holes in skulls to let out bad spirits.

    Cultures always create a picture of normal and abnormal. Within abnormal there is acceptable and unacceptable abnormal. These are cultural phenomenon, and so not very easy to investigate scientifically. This is in the realm of history and sociology a lot more than psychiatry.

    Currently we have the DSM trying to define abnormal, using predominantly cultural practices within their profession. There are only superficial trappings of science, which fits the definition of pseudoscience.
    MeSci and biophile like this.
  6. Sean

    Sean Senior Member

    Messages:
    1,169
    Likes:
    1,758
    I freely admit to be blatantly prejudiced against ideas and practices that have no solid scientific basis, don't work and cause harm, and equally prejudiced against the people who continue to promote such things contrary to the evidence.

    Guilty, m'lord.
    Tito, MeSci and Tom Kindlon like this.
  7. alex3619

    alex3619 Senior Member

    Messages:
    6,902
    Likes:
    10,560
    Logan, Queensland, Australia
    Prejudice, or reasoned analysis? ;)
    Tito and MeSci like this.
  8. Sean

    Sean Senior Member

    Messages:
    1,169
    Likes:
    1,758
    I claim. You decide. ;)
    alex3619 likes this.
  9. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,574
    Likes:
    1,208
    Florida
    imho. We all do. It's whatever we've been exposed to in our lives, education or personal experience, that decides what we believe.

    I thought health nuts were nuts until I became one. I've seen certain practices within this arena that I still won't pursue but that's just me. This realisation changed my life for the better.

    Great info here as usual. tx .. x
    MeSci likes this.
  10. Tito

    Tito Senior Member

    Messages:
    285
    Likes:
    378
    I agree with the above observations. But there must be an extra element. For example, smokers who develop a lung cancer do receive proper medical care (and extensive research) even though they brought it on themselves. Is it because many doctors are themselves smokers? After all, they are the ones who decide/influence fields of research, fundings, treatments available to patients, etc.
    Sidereal likes this.
  11. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    250
    Likes:
    759
    Smokers may have brought lung cancer on themselves. But most people would accept that the smokers can't cure it themselves once they have it.
    So that's one difference anyway.
  12. alex3619

    alex3619 Senior Member

    Messages:
    6,902
    Likes:
    10,560
    Logan, Queensland, Australia
    Smoking has a long history of being considered normal behaviour.
  13. Tito

    Tito Senior Member

    Messages:
    285
    Likes:
    378
    I did not express myself clearly. What I meant is that beyond the aspect of the deserving/undeserving disabled (not my personal view though), there is also the question of the doctors' own interests. Let's take the research on a cure for AIDS. I am probably very cynical but I am personally believe it has to do more about the Nobel prize at the end of the path than curing Africans and homosexuals ... (to put it very bluntly; as we all know they are second fifth-class citizens...o_O)
    My cynical self believe that when an illness affects doctors (through their health, their social group or their career), they tend to take it much more seriously and they manage to get funds, proper diagnosis criteria, etc.
  14. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    250
    Likes:
    759
    You could be right. I think it would be good if more people, including doctors, told people about their illness.
    A UK study of GP attitudes* towards ME found they were more sympathetic if they knew somebody in their social circle with the illness.

    *Fam Pract. 2005 Aug;22(4):389-93. Epub 2005 Apr 1.
    Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge.
    Bowen J, Pheby D, Charlett A, McNulty C.
    SickOfSickness likes this.
  15. Tito

    Tito Senior Member

    Messages:
    285
    Likes:
    378
    I saw an interview of Montagnier years ago about his discovery of HIV. He said that in 1981 nobody at the Institut Pasteur wanted to associate his name and therefore risk his career for an illness affecting gays (the only known affected group at that time). It was because he and a couple of his colleagues were very young and were just entering the field of research that they decided to work on that illness. Basically because they had nothing to loose professionally. Additionally, it was new and therefore exciting.
    It summed up very well how medical research works.
  16. Snowdrop

    Snowdrop Senior Member

    Messages:
    384
    Likes:
    541
    Toronto
    Possibly it's because the wealthy also smoke and the tobacco industry is huge.
    You want to give smokers hope otherwise they might quit.
  17. Tito

    Tito Senior Member

    Messages:
    285
    Likes:
    378
    I think you're right... :(
  18. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,807
    Likes:
    907
    US
    I agree. Many of the doctors who fight for us know someone close with the illness, or saw many become ill at one time. Without either of those, which is harder for them to discount as psychosomatic, it is hard for someone to believe, since it is against their training.

    I believe that many of the best clinicians are interested in difficult puzzles, because they want to make discoveries and publish papers. Some are motivated by prestige, but most have partly good motivation, or completely good motivation.

    Most want a puzzle they feel they have a good chance of solving. (Not many people play games or puzzles that are way beyond their skill level.) Many clinicians will lose interest because of "CFS" being looked down upon by at least 90 of every 100 doctors.
  19. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,807
    Likes:
    907
    US
    :jaw-drop: That is one of those horrible truths you hate to think about.
  20. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,807
    Likes:
    907
    US
    Oh I didn't see your post before I posted. It's sad there are few to stand up for us, but sometimes the few can do enough. There are more coming on board every year, and more funding is coming.

See more popular forum discussions.

Share This Page