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The Psychiatric view of ME/CFS. What is it?

Discussion in 'Action Alerts and Advocacy' started by Orla, Dec 19, 2009.

  1. Esther12

    Esther12 Senior Member

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    I only meant to refer to 'open minded' in a relative way. We're all more or less open minded about different topics. I'm pretty closed minded about homeopothy - maybe in twenty years time we'll be working with a new form of physics which will have validated the homeopaths, but currently I just think of it as a placebo and psychological aid. It's often reasonable to be closed minded, and I quite understand those who were especially badly affected by the psychological lobby or GET now being closed minded about further claims as to the efficacy of GET, CBT, etc. I'm still unsure as to what level of scepticism is warrented, and think it's quite possible I'm being unreasonably open-minded in my own approach.

    I've found GET to be of no use for myself, although I did not find it to be as severely damaging as some of the people here have reported. I'm certainly not pro-GET and CBT. I'm not doing them because I don't think it's likely they'll help me.

    From my understanding of your post, I don't think we really disagree about anything significant.
  2. Quilp

    Quilp Senior Member

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    Thanks for your clarification

    I certainly agree that ones own experiences coagulate into beliefs that although appearing eminently reasonable, can and often are, detached from reality and the wider experiences of the general populous.

    It's often said that one person will tell a hundred others of a bad experience, but that one person will tell nobody of a good experience. Of course such an example is true of the medical profession in general and ones wider experiences in particular.

    I do remember one of your posts that stated that you believed ME to be real ( biological, organic in nature ) but that you hadn't totally ruled out a psychological explanation. This resonated with me to such an extent, that I wanted to explore this further, especially against the backdrop of having experiences ( good or bad ) being intrinsically linked with ones beliefs. Indeed I find it fascinating because I have never met anyone with M.E that has been open to the idea that the illness could be wholly psychological even after the fever pitched level of indoctrination of the 1990's when, quite frankly, it was a terrible time for anyone suffering with this dreadful disease.
    Can I please ask you to elaborate ? I am genuinely interested, fascinated, and if i'm honest, sceptical.

    Please forgive me if i've got the quotes wrong, i'm beginning to lose track.

    Kind regards, Mark
  3. Esther12

    Esther12 Senior Member

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    I'm afraid my position is really just one of ignorance. Until a solid understanding of a physical cause of CFS (and ideally treatment too) is found, I'll be open to the possibility that it is entirely psychological. I don't think we're likely to be able to get an interesting discussion out of that. The evidence indicating physical causes for CFS is compelling, but not overwhelming imo (indeed, it is widely rejected).

    I think it's more likely that there are neurological problems related to CFS, and this could include a psychological component - but again this is a position of extreme uncertainty and not one I'd want to defend as likely.

    I have no idea what causes CFS, and that leaves a lot of open possibilities. I understand that questioning one's own sanity is often uncomfortable, but I find the possibility of my own madness interesting - especially the difficulty of ruling it out. To varying degrees, I think most people are slightly crazy.
  4. Alice Band

    Alice Band PWME - ME by Ramsay

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    It might be a form of hope, Esther?

    If one is mad then there is the possibility that a treatment could make one "un mad" and therefore restore one to full health and functioning.

    The problem with that particular area to put one's hope in, is that it doesn't happen to people with ME (not in my experience).

    If it was happening we would all be clamouring for the treatment.

    There will always be people who are misdiagnosed and have psychological problems as their primary problem. I can understand why people would hope that they fall into this catagory if they want to get better and believe that somewhere in the world of psychiatry there is a cure.

    Sadly, if one has ME or CFS this is a hope that will not be realised.

    I guess you should be looking at what proof you would need of your own "madness" and who you can trust to diagnose or treat it.

    I've not met that attitude in people with ME, so I am only guessing. You will know best.
  5. Esther12

    Esther12 Senior Member

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    I think it's more likely to stem from my own interest in philosophy, consciousness, theories of knowledge, etc, etc. I seem to be unsually willing to think in an abstract manner about my own situation too.
    alex3619 likes this.
  6. Dolphin

    Dolphin Senior Member

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    I noticed that myself. Very frustrating. I have actually seen a few of the intervention studies in the field e.g. CBT are like that in a way (i.e. collapse "no difference" and "made worse" into one category so it is not easy to quote the percentage made worse). I don't think this would be acceptable in a drug trial.
  7. Dolphin

    Dolphin Senior Member

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    Not exactly the same question but you might find this of interest:

    Short references:
  8. Dolphin

    Dolphin Senior Member

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    Hyping effectiveness and efficacy of treatments

    I'm not sure if it has been brought up so far in this thread but one thing one has to keep a look out for is the hyping of the effectiveness and efficacy of GET and CBT based on GET by proponents.

    Firstly, if many people including many medical professionals, here that graded exercise/graded activity programs are safe and effective in a condition and are not told that a ceiling can exist, they can think that the person can exercise themselves back to full health, functioning at the same level as the person did before they became ill.

    And people who promote such views rarely do much to dissuade people of such a view.

    It is also apparent in recent years that professionals, and Peter White and some CBT proponents in the Netherlands in particular, have started talking about GET and CBT (based on GET) leading to recovery and full recovery.

    A closer look at the studies generally shows that the definitions of recovery and full recovery are misleading.

    Again, claims by drug companies would most likely be much more strictly regulated.
  9. Dolphin

    Dolphin Senior Member

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    The outcome measures are usually pretty rubbish. For example, GET is supposed to increase activity levels. But no controlled study (that I am aware of and I have heard others say this also) has ever shown that people actually do more at the end of it.

    What they generally do is to use questionnaires which can have all sorts of problems with them.

    Fred Friedberg has published some papers which found that programs involving walking weren't leading to people actually doing more steps in a day. Instead, people had clearly replaced some of what they were doing with their walks. So in effect, they were actually doing less functional activity across the day! That is to say that say somebody has 5000 steps in them. If they don't do any more because of the program which involves a commitment of 1000 steps a day, that means they only have 4000 steps for the rest of the day to do all the necessities of living (including perhaps minding children, relatives, working, etc).

    It is interesting to see what happened in the multi-million pound PACE trial. There was a change somewhere along the way from when it was being submitted to when the protocol was published in 2007. When Action for ME wrote a letter in support of the application for funding to the Medical Research Councl in 2001, the programme used pedometers at the begining and end of the trial. This would mean one could check whether people had actually done more following the program. But by the time the protocol was published in 2007, the use of pedometers was dropped not at the beginning of the trial but at the end of the trial.

    This trial is going to cost over 4 million of UK taxpayers' money but it won't test the basic premise: that the GET and CBT leads to greater activity levels.

    My guess is that Peter White, Trudie Chalder, Michael Sharpe and co thought it was too much of a gamble to use the pedometers at the end of the trial especially when they saw what Fred Friedberg was finding. They knew the questionnaires had given them the results they wanted from previous trials.

    Again, with a drug trial, one might have an outside body setting the outcome measures. One wouldn't let proponents hand-pick outcome measures that they thought might give the results they wanted.

    The dropping of the use of the pedometers is very odd. I would love to know exactly when it happened. For example, was it after the Medical Research Council, Dept of Work and Pensions, Scottish Chief Scientist, NHS, etc had approved the trial? It seems very likely that at least one of these had approved the trial before this happened. One isn't supposed to change a trial after it has gone through review procedures.
  10. Esther12

    Esther12 Senior Member

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    This is pretty much what I found. I could increase my level of 'exercise', but this inevitably led to either ever cumulating fatigue (which meant I eventually had to cut back and rest up) or real drops in other activities, especially more intellectually challenging ones which just could not be maintained with the level of fatigue generated by the exercise program.

    I didn't get the adverse reaction some people here mention, but I really wasn't able to find any way to gain an overall improvement. It just seemed to make my life less enjoyable, by taking energy away from things I enjoyed and spending it on an exercie program instead. It's possible I was doing somthing wrong, but I don't know what.

    I don't know anything about this, but that sounds a shame. Seeing as this does seem to be the big expensive GET trial, I was hoping there would be some useful data from it. I guess we'll have to see what's included when it finally comes out.
  11. Dolphin

    Dolphin Senior Member

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    Sorry, I missed that when writing my earlier comments about hype. It's a good point.

    In Belgium, they set up rehabilitation clinics for CFS (Fukuda criteria). The interesting thing about them was there was an external audit so the outcome measures were a bit stricter than normal.

    In total, in the region of 1000 were assessed and approximately 600 patients had details included in the report.

    They found on the questionnaires, there was some improvement. Although as I recall, the authors said there was a neglible recovery rate.

    However, there was virtually no change on the exercise test.

    And the people at the end worked less hours on average. This was the same when they followed them up later. The number working decreased. One can work out from the statistics that a lot must have given up work as a small percentage started up work (there is a table on the latter).

    It cost millions of Euros to run these rehab clinics - this wasn't cheap.

    One problem about it is the report on the clinics is in Dutch and French so not many people will have seen it but one or both of the Maes/Twisk paper's discuss them in English (one of these papers can be got for free as we said already by giving your E-mail address at: http://node.nel.edu/?node_id=8918 or else directly at:
    http://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf - that's this one: A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.Twisk FN, Maes M. Neuro Endocrinol Lett. 2009;30(3):284-99.


    Here is the other one:
  12. Dolphin

    Dolphin Senior Member

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    One doesn't need to wait. One can read about the outcome measures etc at:
    Protocol for the PACE trial.
    The authors confirmed they dropped the pedometers at the end in a comment at: http://www.biomedcentral.com/1471-2377/7/6/comments
  13. Dolphin

    Dolphin Senior Member

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    Yes, it's an unusual attitude.

    I think a couple of distinctions could be useful. There are many possible psychological therapies. So one can be particular sceptical about the CBT/GET one and still open to other ones. And so one can get annoyed about the undue prominence given to CBT/GET with regard to facilities, research funding, etc.

    Also, I think it useful to remember that one only has one life. Pretty much nothing is 100% certain in life. About the only thing that is certain is mathematics i.e. 2+2=4 but that can be said to be a tautology as 4 is defined as 2+2 in a way.

    So I and lots of others want to have an increase in the treatment options presented to us. We have one life. There might be a tiny tiny percent chance that a perfect exercise program could work. But the chances seem very small for my particular case and it's not clear if that exercise program would be the one that is being presented now.

    While there seems a much higher probability to me that other areas of medicine can come up with useful interventions involving drugs. For example, IVIG works for at least some people. Ampligen appears like it could help. Interferons seem to help some from what John Chia said. Anti-virals seem to help some.

    If I had the option to re-run my life a million times, I might well chose at least one where I sat back and didn't challenge the CBT/GET approach. But to me, it doesn't look like the best option so I don't intend leaving it unchallenged at the moment in this one.
  14. Esther12

    Esther12 Senior Member

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    Thanks. That was kind of interesting.



    I don't think my attitude is so different from yours. Maybe I am especially uninterested in reading papers on GET and CBT, I think I'm also especially doubtful of my ability to influence the approach of the medical and scientific community. I may have less energy too - although it's difficult to distinguish between dedication and increased ability (it would have taken me a long time to write the kind of referenced replies you did... and the thought of doing so makes my brain throb. Hopefully it's not such a burden for you).

    I've never had any interest in being a part of the 'CFS community' (sounds less fun than other on-line interests!)- I only joined here because of the XMRV news.

    I think it's a matter of percentages, rather than entirely different beliefs though.

    I think people can dislike the way I talk about emotionally charged issues in a rather detatched manner, but I normally try to do so sensitively. From my point of view, it's the attitude of others which seems rather strange. We're all in difficult situations though.
    Last edited: Dec 4, 2013
  15. mvwu

    mvwu Guest

    Orla, thank you for helping us understand the irrational belief system that motivates the actions of these influential psychiatrists. And thank you, TomK, for posting the link to the Twisk and Maes' review. That article, by showing CBT/GET to be NOT based on evidence and, in addition, to be potentially harmful, makes it abundantly clear whose thinking patterns need modification.

    There is enough material in this thread and its links to give an enterprising journalist one heck of a story. Anyone over in the UK know a good investigative reporter?
  16. Orla

    Orla Senior Member

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    Hi Martlet, Yes, thank goodness there are some good psychiatrists out there who see reality as it really is, and give good advice.

    Some people might be interested in these two pieces by psychiatrists.

    ON THE MORBID FASCINATION WITH PSYCHIATRIC MORBIDITY
    by Alan Gurwitt, M.D., USA

    "Every so often there is an upsurge of debate about the place of psychological problems in regards to CFS, FM, and ME. As a psychiatrist who has been seeing patients with these illnesses since 1986, as well as following the literature closely, I have often been embarrassed by and angry at many of my colleagues who fall in line with self-declared "experts" who see somatization everywhere. Ever since the mid-1980's there have been "researchers", with an uncanny knack at cornering research funds because of their already-formed biases that are in synch with the biases of the funding government organizations, who declare CFS, FM, ME to have a psychological basis or, more recently and insidiously, avoiding specificity about etiology, indicate that CBT and graded exercise will do the therapeutic job, thus in part implying a major psychological causative factor."http://www.cssa-inc.org/Articles/Morbid.htm


    And this document from Eleanor Stein might be of use to people, either to give to doctors, counsellors, psychiatrists, or just for some useful information on ME/CFS:

    Eleanor Stein MD FRCP(C), Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists

    http://sacfs.asn.au/download/guidelines_psychiatrists.pdf

    This is one of the section (you get an idea what is in the booklet from this):

    ME/CFS is NOT a Psychiatric Disorder . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7

    3.1 Rates of Psychiatric Disorder in CFS Are Similar to Rates in Other

    Chronic Medical Conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7

    3.2 Rates of Personality Disorder in ME/CFS Are Not Elevated . . . . . . . . . . . . . .7

    3.3 Genetics of Depression and ME/CFS Are Independent . . . . . . . . . . . . . . . . .8

    3.4 Physiological Measures Between ME/CFS and Depression Differ . . . . . . . . . .8

    3.5 Illness Severity and Not Psychological Factors Predict Outcome . . . . . . . . . .8

    And she writes: "It is important to note that no CBT study has reported that patients have been improved enough to return to work nor have they reported changes in the physical symptoms of CFS eg. muscle pain, fever, lymphadenopathy, headache or orthostatic intolerance."

    ...in patients with ME/CFS, neither exercise tolerance nor fitness has been shown to improve with exercise programs
    "
  17. xanadu

    xanadu

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    Conflicts of interest

    Good links, Orla. Alan Gurwitt is being diplomatic though. In 2006, the UK Parliamentary Group on Scientific Research into ME reported that

    http://erythos.com/gibsonenquiry/Report.html

    The "advisors" include some of the most prominent psychiatric researchers. There has been no investigation to date.
  18. Alice Band

    Alice Band PWME - ME by Ramsay

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    Esther

    I think it's more likely to stem from my own interest in philosophy, consciousness, theories of knowledge, etc, etc. I seem to be unusually willing to think in an abstract manner about my own situation too.

    -------------

    Thanks for that reply Esther and I am sorry to hear that your partner has CFS. Must be so very difficult for you both.

    Funnily enough, I started out thinking about this abstractly and discussing the philosophical side. Over the decades I found that there was nothing new, true or relevant I was finding in this area and I wasn't reaching any new insights.

    In fact I was finding that more and more that this approach didn't fit the reality of the situation I was in.

    We are all different of course and you probably find the opposite.

    Wishing you and your partner the compliments of the season.
  19. Orla

    Orla Senior Member

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    Comment on what CBT is, or isn't

    This isn't ME/CFS specific but I came across this useful website (posted on another forum) that has some very interesting commentaries on CBT and related issues.

    He comments in various places about what CBT is and isn't. This is one of his comments:


    "...CBT is designed to treat mental illness. There is no such thing as CBC (cognitive behavioural counselling) for helping mentally well people with the problems of everyday life. The fundamental difficulty with compulsory CBT for trainees that theres no illness to treat, so it would simply be going through the motions in a limited and pointless way.

    Disappointingly, the view was expressed in this discussion that CBT is just a bunch of techniques for living life, and that anyone at all, mentally ill or mentally well, can learn techniques. I think its extraordinary that someone with so little understanding of how CBT works should be found piping up in what was meant to be a serious discussion. Its as I wrote above even in an orientation as simple as CBT there are therapists who do not understand the methodology."


    http://cbtish.wordpress.com/2009/10/15/twist/#more-1761

    The site is worth a look as there is other interesting stuff there also.

    Sometimes CBT is sold to patients as just a coping technique, that non-mentally ill people can find useful. Sometimes this is being done dishonestly by those who think ME/CFS is a behavioural and mental health problem, and they want to hide their true beliefs/intentions from the patients, other times this idea is promoted by sympathetic people who are trying to be helpful.

    I wonder if sometimes what is being called CBT may be more supportive listening with some good tips, rather than strictly speaking CBT (which is to correct very maladaptive beliefs and behaviours)? I think this is what the Overview of the Canadian Guidelines are getting at when they say (as I mentioned before):

    Some physicians, who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them CBT. We urge such doctors to use the term Self Help Strategies and avoid using the terms Cognitive Behaviour Therapy and Cognitive Retraining Therapy."

    From An Overview of the Canadian Consensus Document, http://www.cfids-cab.org/MESA/me_overview.pdf



    Orla
  20. meandthecat

    meandthecat

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    Hi Katie I know how you feel. Uk medicine does everything it can to disempower us and at a time when we are most vulnerable. Feeling scared is not unreasonable given the challenge, I'm 6 ft and built like the proverbial BSH and I am wary. I am also very angry and that makes them behave, stuck in some poky consultation room with me must be like getting up close and personal with the Hulk.
    stay strong

    impressive posts orla

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