1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Management of functional gastrointestinal disorders, Fikree and Byrne, 2021

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Jan 23, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Open access, https://www.rcpjournals.org/content/clinmedicine/21/1/44

     
    Sean, MEMarge and Peter Trewhitt like this.
  2. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    905
    Should read as 'Psychotherapy is mostly ineffective"
     
    merylg, EzzieD, Missense and 6 others like this.
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    Such articles assert that ‘functional’ conditions have ‘high healthcare utilisation’ but I wonder if they have the evidence to back this up. Even if they form a significant proportion of medical consultations, if you look at it from the patient perspective do people with conditions so labelled use more health care on average than people with other conditions?

    For example though I have had significant IBS symptoms since the onset on my ME some thirty years ago, it is over fifteen years since I have consulted a doctor on this particular symptom. Even then it was just to discuss medication on how to manage my IBS on a journey to the Falklands, Chile and Antarctica when at times access to a toilet might be problematic.

    Indeed it is the general understanding of people with ME (though obviously we need adequate data on this) that the more severe our symptoms the less likely we are to see a doctor. Personally when my condition was milder I would see my GP once or twice a year to monitor my bloods, consult on any new symptoms or manage any changes in my life. In the last six years or so with my condition much worse, being unable to attend surgery I have only seen a doctor twice; once in relation to the deterioration of my ME and once following an acute neurological episode (probably a TIA), when I refused referral to a neurologist because I felt the health cost of attending an outpatient appointment some thirty miles away potentially weeks after the event was far greater than any benefit of obtaining a more accurate diagnosis. I suspect an average of seeing a doctor once every three years does not represent ‘high health care utilisation’ when compared to most other comparably disabling conditions.
     
    Michelle, rainy, merylg and 10 others like this.
  4. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,733
    Location:
    UK
    Your trip 15 years ago sounds fascinating @Peter Trewhitt.

    Sorry your health has declined so much.
     
    merylg, Missense, alktipping and 2 others like this.
  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    Luckily I have periods of relative remission in the thirty years of my ME enabling with planning and the right medication a trip to Tibet over twenty years ago, before a dose of flue triggered a major relapse, then to South America and Antarctica fifteen years ago and a trip to Japan under ten years ago before my current deterioration. So I always have the hope that further improvement might be possible.

    My experience is that my utilisation of health care relates not to my current health but to my understanding of whether my doctor is able to do anything to help it or not. [And now whether I see it worth the fight to try to get a home visit.]
     
    Michelle, rainy, merylg and 5 others like this.
  6. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
    1,197
    My experience is that my utilisation of health care relates not to my current health but to my understanding of whether my doctor is able to do anything to help it or not. [And now whether I see it worth the fight to try to get a home visit.] .from peters post above . this is exactly the choice i make is the doctor going to be useful or not if not why the hell would i put myself in harms way to see one . i think very many people with chronic illnesses behave the same way .
     
    rainy, MEMarge, merylg and 1 other person like this.
  7. Agapanthus

    Agapanthus Senior Member (Voting Rights)

    Messages:
    209
    I have had the whole gamut of digestive issues from the beginning, with a Dr diagnosing my brother and I with 'acidosis' in the 1950s - not sure that it was that, but we were both sick a lot.

    When I reached my late teens, IBS kicked in properly with a lot of diarrhoea issues for which the first Dr prescribe Valium (without any checks on it). Thankfully the 2nd Dr I went to at least sent me off for some tests to make sure it wasn't anything more serious ( it wasn't). I took Codeine Phosphate for 4 years.

    Throughout my adulthood the problem got worse and then moved upwards and I then had gastritis (I thought it was 'just' IBS so ignored it for a long time). I was put on PPIs which probably did more harm than good after the first few weeks.

    Eventually with by then several diagnoses, including CFS/ME as well as IBS, I pretty well gave up on Drs unless I was going for something very specific. I had one last go at it when I ended up with constant pain in my abdomen and after an endoscopy (my 3rd) I was given a new label of Functional (or non-ulcer) Dyspepsia.

    After that I was on my own and did my own research and food trials and have pretty much sorted out the whole thing alone, without a psychotherapist or a Dr. I had to exclude some foods and eat differently but it was worth it for losing the pain. Recently I had Covid-19 and though I had it mildly, my digestive system has been at war with me again since I began to recover - a form of Long Covid I guess, though I am only at about 6 weeks post virus so far. I have worked out this time that Histamine Intolerance has a part to play (probably always) and that if I take Digestive Enzymes, they help the other bits not working well at present. I have also used Betaine HCL for a long time too, and an array of herbs.

    What does 'maladaptive patient behaviours' mean? I googled it and it sounds like 'blame the patient' to me.
     
    MEMarge, alktipping, merylg and 6 others like this.
  8. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,048
    Location:
    UK
    I've been diagnosed with IBS over and over again by various doctors and under various circumstances.

    As well as the IBS diagnosis, I was also told, a long time ago, that my problems were functional - this was before I knew what it meant, although I remember being deeply suspicious because the diagnosis led nowhere, apparently required no treatment, and was apparently forgotten as soon as it was made.

    I think I might have got my first IBS diagnosis in my late teens, but I can't remember with any certainty.

    The only treatment I got (in my 20s) was a prescription for half the normal adult dose of Ponstan, which had no effect whatsoever, and a prescription for Fybogel which also did nothing. I have always wondered if the odd dose of Ponstan I was prescribed was deliberate or was a mistake by either the doctor or the pharmacist. If it was a mistake it was the first and only one of that type I'm aware of in my life, and I think it was deliberate.

    I was also prescribed an anti-spasmodic of some kind about 20 years ago which also had no effect. It was frequently insinuated that I had brought my problems on myself by eating badly and not eating enough fibre, and there was an assumption that I was attention-seeking and drug-seeking.

    I can't even remember how I wangled it now, but nearly 20 years ago I actually got a laparoscopy to look for endometriosis. What they actually found was dense adhesions gluing my bowel to the left side of my abdomen which they freed up. Result? No more IBS - or at least a 90% improvement.

    I wonder if psychotherapy would have removed those adhesions? <sarcasm>
     
    rainy, Missense, MEMarge and 7 others like this.
  9. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    2,815
    Ponstan was the name of an NSAID which they used for period pains and abdominal pains as it probably helped with endometriosis. It was also fantastic for toothache! They stopped prescribing it years ago.
     
  10. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,048
    Location:
    UK
    It might have been good at full dose, but I never got to try that option. It was a doctor in a Family Planning Clinic that told me that my GP had only prescribed half the normal dose, but my prescription had not been renewed so I couldn't try it at full dose.
     
    MEMarge and alktipping like this.
  11. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    2,815
    I've remembered that its generic name was mefenamic acid. Ridiculous that you had all that pain but no one did a laparoscopy to actually look to see what was happening!
     
  12. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    6,048
    Location:
    UK
    In my experience with doctors and bowel problems, they appear to think of the bowel (and the digestive system generally) as a simple tube and usually think that problems only occur with the inside of the tube. The idea that there could be issues on the outside of the tube rarely seems to cross their minds.
     
    Mithriel and alktipping like this.

Share This Page