Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Investigation of suspected chronic fatigue syndrome/myalgic encephalopathy

Discussion in 'Latest ME/CFS Research' started by Kyla, Feb 9, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    http://tidsskriftet.no/article/3447861/en_GB
    (open access)

     
    Woolie, Valentijn, Cheshire and 2 others like this.
  2. deleder2k

    deleder2k Senior Member

    Messages:
    1,115
    Likes:
    4,782
    A crucial factor for the low rate of diagnosed was that the Canadian criteria were used. Estimated 0.1% of the general population versus 2.5-3.0% for Fukuda.
     
    Woolie, jimells and Valentijn like this.
  3. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,891
    Likes:
    5,328
    Scotland
    Fukuda is generally estimated to be 0.2 to 0.4% , I think. The empirical definition is about 2.5%

    What clinical criteria are generally used in Norway?
     
  4. lansbergen

    lansbergen Senior Member

    Messages:
    2,505
    Likes:
    2,710
    A total of 48 patients (13.2 %) were diagnosed with CFS/ME,
     
  5. deleder2k

    deleder2k Senior Member

    Messages:
    1,115
    Likes:
    4,782
    I consider that as a pretty low number. If the Fukuda/Oxford criteria were used this number would be a lot higher.

    @Scarecrow, The Norwegian Health Directorate recommends Canadian criteria for adults, but it is only a recommendation.

    This one is interesting:

    [​IMG]Source: http://bmjopen.bmj.com/content/4/2/e003973.full
     
    Woolie, Scarecrow, mango and 5 others like this.
  6. lansbergen

    lansbergen Senior Member

    Messages:
    2,505
    Likes:
    2,710
    Why is 13,2% low? Do I miss something?
     
  7. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    It's 13.2% of a sample referred to a clinic with presumed ME/CFS. The other 87% turned out to not fit diagnostic criteria.
     
    deleder2k and BurnA like this.
  8. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,860
    Yep, something kind of big :)
     
  9. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    I noticed that Wessely always finds higher rates than most researchers, no matter which criteria is used.
     
    Scarecrow, Valentijn and BurnA like this.
  10. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    Was this study based on one clinic, or one assessment technique used in multiple clinics? It would be really interesting to know the overall "success" rate vs. other clinics, i.e., what percentage of everybody coming through the door is able to resume "normal" life - the outcome measure that matters most.
     
  11. lnester7

    lnester7 Seven

    Messages:
    2,389
    Likes:
    3,427
    USA
    DO YOU FEEL Worse after exertion? Is not that hard!!!!!!!!!!!!!!!!!!!!:bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
     
    MEMum, ScottTriGuy and BurnA like this.
  12. deleder2k

    deleder2k Senior Member

    Messages:
    1,115
    Likes:
    4,782
    It was only at one clinic. Canadian criteria was used.

    I think there is a study from the same department at Haukeland, but the CDC criteria was used:


    They looked at "follow-up of employment status in patients with chronic fatigue syndrome after mononucleosis"

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4248085/
     
    Last edited: Feb 10, 2016
    MEMum and jimells like this.
  13. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine

    I'm not qualified to judge if the study is robust or not, but the numbers sure look better than anything from the PACE People. I recall several recent threads discussing the likely prognosis for patients, especially younger ones. This study should give a little hope to them, even while we are still limited to symptomatic relief. We must've discussed this study before, but of course I've forgotten.

    @deleder2k thanks for posting this.
     
  14. deleder2k

    deleder2k Senior Member

    Messages:
    1,115
    Likes:
    4,782
    It should be noted that the results are only from patients that got ME from mono. Contact 2 was at 11.4 years. 55% working sounds really good, but remember that they may have held a 10% position, in a customised job.
     
    jimells likes this.
  15. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    I think I might be very impressed with this study, with some reservations, but I'm not yet certain as there are a lot of details to analyse and reflect upon. It seems like quite a comprehensive investigation of the patients - they even had lumber punctures which suggested biomedical abnormalities in some cases, and MRI scans.

    This could be a great paper to present to our own health service providers, to demonstrate the sort of initial investigations and delineation that should be carried out. Although I'm not sure how the list of biomedical investigations compares with recommendations by various ME/CFS advocates.

    In addition to the 13.2% CCC patients, a further 4.9% were given a diagnosis of (ICD G93.3) post viral fatigue syndrome. A small number were diagnosed with fibromyagyia.

    There were a further 12.9% (47) for which no specific diagnosis could be made, but some nonetheless had milder cases of fatigue and malaise but did not meet the CCC criteria and so were diagnosed with ICD R53 malaise and fatigue. (I guess these were what might be called cases of ideopathic chronic fatigue). Others had a suspected nervous system disorder and were diagnosed with ICD Z03.3:
    "No specific diagnosis was made for 47 patients, who received symptom diagnoses such as R53 malaise and fatigue, or Z03.3 observation for suspected nervous system disorder. These were primarily patients with mild symptoms and no definitive somatic or mental illness, who did not fulfil the criteria for CFS/ME."

    6% had 'burn out'.

    Quite a large proportion of the patients were given a wide range of psychiatric diagnoses, which perhaps gives some insight into how ME/CFS has become a waste basket diagnosis, and why there's so much confusion and stigma associated with the illness. (i.e. ME/CFS is a common misdiagnosis for people with complex emotional needs who doctors might find challenging to give good care to.) e.g. A couple of the patients were victims of ongoing (domestic?) bullying and abuse.

    There seems to be quite a lot of patients who were given functional/somatoform diagnoses, which I'd like more information about.

    I'm not sure what to make of the following:
    21.1% were diagnosed with somatoform disorders and
    14.8% were diagnosed with F48 Neurasthenia.

    I didn't think that 'neurasthenia' diagnosis was actually used in the modern era of medicine. I didn't think it meant anything other than fatigue caused by emotional distress, or something similarly vague.

    So, many of the diagnoses were vague or undefined fatigue-related illnesses (e.g. somatoform, neurasthenia, ICD R53 fatigue), but did not conform to CCC.

    It's an interesting and quite complex study.
     
    Last edited: Feb 10, 2016
  16. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,556
    Hmmm. Is this what James Coyne calls the "puffer fish" phenomenon? Talk your research up by claiming that the problem affects more people than it does?

    I notice there's a lot of this kind of big-talking in psychological medicine. You know, loads of patients have unexplained physical complaints, the problem is endemic, these annoying patients are up taking time and costing money - and we're the folks to help you out with it!
     
    Cheshire, MEMum, jimells and 3 others like this.
  17. deleder2k

    deleder2k Senior Member

    Messages:
    1,115
    Likes:
    4,782
    A doctor has commented in the article in Norwegian. He criticises that the Canadia criteria is used instead of Fukuda. The doctor points out that there is no evidence the use of it will help diagnose another disease than Fukuda (3)
    He asks someone to explain to him what the difference of CFS/ME and postinfectious fatigue after PEM (lasting more than 6 months) is.

    3. National Institute for Health and Clinical Excellence. Clinical guideline CG53. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. London, NICE, 2007. http://guidance.nice.org.uk/CG53 (15.02.2016)
     

See more popular forum discussions.

Share This Page