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Poll - Have You Ever Believed In Psychosomatic Illness?

Discussion in 'General ME/CFS news' started by DigitalDrifter, Jul 17, 2023.

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Have You Ever Believed In Psychosomatic Illness?

  1. Yes

    5 vote(s)
    6.5%
  2. Yes But Not Any More

    29 vote(s)
    37.7%
  3. No

    28 vote(s)
    36.4%
  4. Not Sure

    11 vote(s)
    14.3%
  5. Other - Please Specify

    4 vote(s)
    5.2%
  1. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    3,611
    Same for me, just with migraines not asthma. I was not making up that excrutiating pain that made me unable to do things I enjoyed. That my migraines would typically last for the duration of a school day made many adults in my life believe I was malingering to get out of school. Typically enough these people would ignore the three-day migraines I would get when being exposed to too many triggers (exercise and sounds for me, quite like my ME really).
     
    Ash, alktipping, NelliePledge and 4 others like this.
  2. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    599
    I interpret the original question asked broadly, in meaning, do I have any belief in psychosomatic illnesses? I pointed out that in some cases (as you've highlighted with an obvious mechanism) I will consider its existence. I don't think this thread is only about the ideas Wessley and Chalder support, but as a whole if psychosomatic illnesses exist in general.

     
    Ash, Binkie4, Trish and 1 other person like this.
  3. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    898
  4. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,962
    Location:
    Aotearoa New Zealand
    Last edited: Jul 21, 2023
    NelliePledge likes this.
  5. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,962
    Location:
    Aotearoa New Zealand
    Here's the relevant bit. Italics are in the original.

    "A second trial carried out in Oxford (reference 455) divided a group of 60 ME/CFS patients into 30 receivingCBT and 30 who were given 'no further explanation or advice' about their illness - apart from being advised to increase their level of activity (described as 'medical care alone'). Twenty-two out of the 30 receiving CBT achieved what was described as a 'satisfactory outcome' - a change in their Karnofsky score (a similar type of disability assessment to the one described on page 117) of more than 10 points, 12 months later. Only eight of the 30 receiving 'medical care alone' achieved a similar degree of improvement. Deterioration was reported in four of the CBT group and three of the control group. Of particular interest was the fact that a significant number of patients in both groups were suffering from a depressive, anxiety or somatisation disorder. The authors failed to provide any information on which factors might have helped to predict a favourable outcome."
    ....
    "My conclusion about the value of CBT is that it may be a useful form of therapy for a subgroup of people in ME/CFS who are not managing their lifestyle readjustment in an appropriate manner (and this may mean doing too much or too little) or who have unhelpful rigid beliefs about the cause(s) of their illness and how this affects their management. It may also be of help to those with co-existent depression or those who are experiencing considerable difficulties in coping socially or psychologically. If you feel that CBT could be of benefit to you, then this is a matter which needs to be discussed with your GP. Referral can then be made to a specialist unit which has therapists with the necessary expertise. For people with ME/CFS who are coping perfectly well with their lifestyle management and have no psychiatric or emotional problems, I don't believe that CBT has any benefits to offer. I am also aware of disturbing instances where inappropriate (and sometimes quite harmful advice) from a therapist has had adverse effects, so do make sure that you are referred to someone (preferably within the NHS) who fully understands the illness."

    There's no evidence there that Charles believes in somatisation - the italics indicate that he is quoting something from the paper he is referring to. I think his point is that this patient sample may have had some mental health issues which might account for the reported improvement.*

    I don't think we necessarily have to assume that if Charles Shepherd thinks something, he must be right. But his statements here (edit - as so often elsewhere) seem reasonable.

    * Even from that scant description, there was a lot wrong with the trial that is mentioned. The "controls" were told to "increase their level of activity" and left on their own. That's hardly a neutral control; it makes this trial highly flawed. Then there is the improvement that is likely over time. The lack of information about dropouts. And the use of only a subjective outcome. And so, the trial does not tell us about the benefit of CBT, for PwME either with or without mental health issues.
     
    Last edited: Jul 21, 2023
    alktipping, Sarah94, MeSci and 4 others like this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    52,387
    Location:
    UK
    Do we have information on what variety of CBT was used. If it was effectively a trial of supportive CBT versus being told to exercise, then it's not surprising the CBT group did better on questionnaires.
     
    alktipping, Sarah94 and Hutan like this.
  7. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    898
    My point was also that he doesn't take the opportunity to be critical of it, he should have mentioned the lack of evidence for the concept as well as the double standard of evidence required for medical professionals to accept such a concept.
     
    alktipping, Sarah94 and Sean like this.
  8. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,962
    Location:
    Aotearoa New Zealand
    But that wasn't the point he was making there in those paragraphs. If he had tackled that issue, it would have taken the piece off-topic. I think we'd need to see a lot more convincing evidence to conclude that Charles believes in somatisation.

    And then, my point was, so what if he does? A lot of people in leadership positions in ME/CFS groups believe in things that are questionable or even straight out barmy. Thinking about the Medical Advisors to patient charities that I know, it's a whole lot more likely that they hold weird ideas than they don't. That shouldn't be surprising. ME/CFS has certainly not been a prestige field. If you are a great, rational doctor, you have many more attractive options. With a lack of any firm knowledge and a whole lot of desperate people, clinicians with weird ideas can, and do, succeed. (Charles is actually one of the best Medical Advisors of an ME/CFS charity that I can think of.)

    I don't think the fact that people in ME/CFS organisations are often poorly informed creates a double-standard. There's a lot of misinformation and lack of clarity everywhere, and we need both medical professionals and decision-makers in advocacy groups to be better at following the evidence and, when evidence is lacking, we need them to be better at being compassionate. Slapping a conversion disorder label on someone when you can't find another reason for their symptoms is neither evidence-based nor compassionate.
     
    alktipping, Sid, Sean and 2 others like this.
  9. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    599
    It is quite a controversial topic, but I thought I would revisit this because recently, I recalled someone I have known since my adolescent years who I would describe as possibly having something that comes across as MUS/FND.

    Although not surprising, everyone has differing views about psychosomatic illness. I see the benefit of discussing it because, in my opinion, it helps me argue against the psychologisation of my physical symptoms during contact with health professionals.

    I will refer to the person in question as person A.

    Person A is a relative of very close childhood friends of mine. We met through these friends as teenagers. Before I met person A, I heard about them from another close friend who met them first at a social gathering. I received a call from a friend, upset that person A had appeared to feign illness at her relative's party. My friend described person A had dramatically thrown herself on the floor midway through the party and began shaking as though they were having a fit. She described her as rolling and shaking and making faces. Of course, everyone at the party was very concerned and immediately rushed to the aid of person A. Except for our close friends, the known relatives of Person A. My friend and the other partygoers began providing person A with provisional aid. Person A was offered water and was advised to get some fresh air after they came round from the first episode of fits. As person A was led to get some air, they started having fits again. Of course, everyone now felt it was a medical emergency and agreed to call emergency services. My friend says that despite all this, person A's relatives seemed strangely detached from the situation.

    According to my friend, when person A realised that emergency services were being called, they started to come around and pleaded with everyone not to call an ambulance. I would now say this is a reasonable request in some cases, as I know someone diagnosed with Epilepsy who doesn't like being taken to hospital if they recover quickly from a short episode. However, according to my friend, Person A's attacks appeared severe and prolonged in nature. The partygoers were shaken and profoundly concerned but ultimately respected the wishes of person A. At this point, the party was now over as everyone just wanted to ensure person A was okay, and afterwards, they began to leave.

    Once the party ended, my friend, person A, and their relatives remained. My friend was in the kitchen helping to tidy up when the relatives of person A entered the kitchen. My friend expressed their concerns about person A and asked if this kind of thing had happened before as it felt very serious. The relatives explained person A had a history of appearing to fabricate illness, amongst other lies, so they were not surprised that person A did not want to go to the hospital. They apologised for their relative's behaviour. Of course, my friend was now upset as it seemed person A had ruined their aunt's party for attention.

    I spoke to my close friends - the relatives of person A, who confirmed person A was known to occasionally fabricate lots of things, which to them felt like some form of mental illness with which they sympathised due to person A's hard upbringing.

    When I met person A, all seemed fine the first couple of times, until one day, they said they could no longer walk midway through a journey and sat on the ground bawling of leg pain. We were with person A's uncle, who told them to stop pretending. We continued to walk while some of us took turns to support person A. We asked person A if they wanted an ambulance, which they declined but continued to yelp out in pain.

    As time went on throughout the years, my close friends sometimes complained about the relatively small but annoying lies person A would get caught telling. It caused friction in their relationship. As time went on, they had less contact with person A.

    Many years later, one day, person A showed up at their home saying they had a baby that unfortunately passed away. While one of my friends consoled person A, my other friend came into the room and asked what was going on. The person comforting person A relayed the story and showed her the picture of the late baby. My friend said they were shocked and disturbed at what they saw because the image was of a baby belonging to another friend. At this stage, my friend asked person A to leave their home.

    Over the years, more people began to report other strange stories person A would tell. One that sticks out is where person A told a man who left the UK that they had fallen pregnant before he had left. My friend said they walked in on person A, imitating a child's voice. When the call was over, they asked person A what it was all about and person A confessed to pretending they had a child for the man.

    The most recent news I've heard about person A was around a year ago. My friend told me person A had shown up at their parent's house, saying their mother, who lived in a different country, had died after being sick for a while. My friend's parents were very saddened by the news and felt greater empathy for person A due to the history of difficulties. One day, my friend's father bumped into the uncle of person A and passed on his condolences for losing his sister. Person A's uncle was startled and grew concerned as he explained he wasn't informed of his sister's death. He immediately called his sister, who answered the phone and told her he was relieved she was okay, but person A had been telling people she wasn't alive.

    I can't say for sure person A was not actually ill during all of the above instances, but their frequently lying behavioural patterns make me sceptical. Even so, there will be plenty of occasions when person A is genuinely ill and they should receive medical attention and appropriate testing each time it is deemed necessary.

    I wanted to share this account as it might provide an idea of MUS/FND patient characteristics. Would it be expected for a patient only to fabricate or exaggerate symptoms, or would this pattern happen in other areas?

    The neurology literature outside of BPS research I've read where functional cognitive symptoms are sometimes referred to recommends neuropsychological evaluation for screening because of the ability to interview someone who knows the person well check for brain structural deficits, mental & physical illness symptoms and behavioural presentation.

    https://elmirmohammedmemorypsy.file..._s-guide-to-neuropsychological-assessment.pdf




    [Edited for clarity]
     
    Last edited: Oct 8, 2023
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  10. ToneAl

    ToneAl Senior Member (Voting Rights)

    Messages:
    129
    Location:
    Adelaide Australia
    Maybe that's the point it's a only in the eyes of the doctor not in any physical evidence.
    So there is limited research into the early detection of disease when physical and imaging testing is negative. So more effort should be in into research to devise more robust tests.
    So they should give up the idea of fnd or psychosomatic diseases.
     
    EzzieD, LJord and Sean like this.
  11. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    898
    That would be malingering or Factitious disorder which is not what MUS/FND/Psychosomatic are claimed to mean, however in practice some medical professionals often use FND Etc as a euphemism for malingering or hypochondria.
     
    livinglighter, Sean and Hutan like this.

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