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The Norwegian ME Association's report on severe ME

Discussion in 'General ME/CFS News' started by mango, Jun 25, 2019.

  1. mango

    mango Senior Member (Voting Rights)

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    I've only read the summary so far, but it looks amazing.

    Here are a few Google translated quotes from the summary:

    "A key message in the report is: The most ill ME patients are an extremely vulnerable group with minimal or no margins, where even small mistakes can lead to prolonged and severe deterioration. Help that harms is worse than no help. Anyone working with the patient needs basic knowledge about what characterizes ME, and must show respect for the patients' and relatives' experience, needs and wishes. All help services must be designed in collaboration with the patient and any relatives."

    "One main message in the report is that the scope and type of care and assistance must be based on what each patient can tolerate and need, and be considered in the context of the housing situation, financial situation and help and support that the patient receives from relatives."

    "The support system
    The responses about the help services describes a system that fails many of the sickest ME patients. There are three main problems:

    (i) insufficient assistance is offered;
    (ii) the assistance provided is not adapted to the needs of the sick and leads to deterioration;
    (iii) lack of knowledge and understanding of the sick person's needs and challenges at all levels.

    In addition, the application process for support and aid schemes is so energy-intensive that many choose not to apply, even if they meet the requirements and are entitled to the schemes. "

    "Only 1 in 3 say they feel they are believed by healthcare professionals, and only 10% of those with severe ME believe they receive adequate health care, compared to 20% of those with very severe ME. Many do not get home visits by healthcare professionals when they need it. A large proportion is de facto without health care.

    About 2 out of 3 respondents have had such negative experiences with one or more health care providers that they no longer dare to contact them. Many free-text responses emphasize that it is better not to get help than to get help that causes extra strain and harm for the sick."

    "Main principles for good help
    The survey asked questions about what changes the respondents would like in health care, municipal services, NAV [DWP] and other actors. Many emphasized that the help service must be based on solid knowledge of the disease. Two basic characteristics of ME must be the foundation of this:

    (i) ME sufferers have an activity and stimuli intolerance. Activity and stimuli beyond the tolerance limit lead to symptom deterioration (PEM) which can be severe and last a long time. For the most severly ill people, this intolerance is extreme, and even the smallest stresses can cause severe and prolonged deterioration. For the severely ill, the assistance must be arranged with the focus that one should not under any circumstances risk harm to the patient.

    (ii) The disease and symptoms fluctuate from day to day. All help services therefore require great flexibility on the patient's terms. At the same time, predictability is an important part of a good help offering, but part of the "predictability" is getting help when needed in an unpredictable situation."

    "The greatest knowledge about this patient group is currently with the patients themselves and with their relatives. As a group, these patients are too ill to participate in studies, and there is little or no formal knowledge of care. All those who are to work with this group of patient must meet patients and relatives with humility towards the experiences and the expertise they possess."

    "Overall, the report reveals a patient group with a serious disease, a very large - sometimes extreme - burden of disease and an extensive need for help. The situation of patients with a very severe degree of ME is in many ways shocking and often compared to dying patients. The public support system is not sufficient, and in some cases, interventions also worsen the condition. The way to a better life situation for ME sufferers is not always more help, but accurate help."
     
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  2. mango

    mango Senior Member (Voting Rights)

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    From the introduction, Google translated:

    "This report illustrates the situation of the sickest 25% of people with ME in Norway with regard to the burden of disease, support and the role of relatives. In the report we try to balance hard numbers and facts with thousands (literally) of free-text responses from patients and relatives who expand the picture, and are describing a very serious situation."

    "This is the first systematic survey of the sickest ME patients in Norway, and describes a group of patients with very heavy disease burden and relatives living in constant crisis. The report does not come with specific recommendations on what constitutes correct support or care but presents important principles for giving correct support.

    The appendix also contains a number of free-text responses with comments by the sick and people close to them, about how the support offered can be improved."
     
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  3. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    This sounds great! I’m so excited there is this information specifically about Norwegian ME warriors. Sounds like they were very blunt.
    [Edit: grammar! Can I have my old brain back now please!]
     
    Last edited: Jun 25, 2019
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  4. mango

    mango Senior Member (Voting Rights)

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    Editing the images in the report is probably not allowed, but they are so striking that I couldn’t help giving it a try and quickly translate at least a couple of them, just to give you a bit of an idea.

    Figure 15: Disease course.

    figure15.png


    Figure 22: Percentage who have experienced that contact with one or more healthcare providers has been so difficult that they do not dare or want to contact again.
    figure22.png
     
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  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Looks a really useful and telling resource. Yet more good stuff from the Norwegian ME Association.the point about no margins is the hardest thing. An unavoidable hospital visit may be way outside the energy envelope, the patient is well aware of the payback and deterioration risks of going outside the margin, yet it’s unavoidable. This type of thing might well be the reason for the pretty awful trajectory reports of the very severe whereas other gradings are more able to be able to weather life’s challenges because there’s more room to accomodate them.

    I wonder if this is a resource NICE would consider ?
     
    Last edited: Jun 25, 2019
  6. mango

    mango Senior Member (Voting Rights)

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    Figure 5: Functionality of the extremely severely ill (the 9 most sick patients in the study).

    figure5.png

    Sorry for the low-quality job on these translations and images. Please let me know if you find any mistakes.
     
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  7. Colleen Steckel

    Colleen Steckel Established Member (Voting Rights)

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    I haven't compared for accuracy, but it is definitely understandable.

    I think that's one of the best visuals I've seen to help understand the level of severity.

    "Severe" understanding truly varies depending on what criteria a person is using. But no matter which criteria is being used, this chart cuts through the noise and truly gets the point across. "Extremely Severely Ill" - is that same a "Very Severely Ill" in the other chart?
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    This looks pretty fair and accurate. I guess we should expect some furious outrage from the ideological squad in the next few days? An accurate assessment such as this basically makes a solid case that they are promoting a human rights disaster, which is entirely accurate.

    This clearly shows, once more, that the status quo is completely disastrous. Its proponents will no doubt be more enraged at being shown they are in the wrong than at how horrifying the reality and quality of life are for ME patients, which they clearly couldn't care less.

    The most important point is that every time this is independently assessed in different countries we find the same thing. The findings are consistent, reliable and speak clearly of a catastrophic breakdown by health care institutions. Continuing with failure is as indefensible as always, but every bit of evidence that confirms what we already knew, and what advocates have pleaded for decades, strengthens the case for massive accountability. Not in a decade, or 5 years. Now.
     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    This directly contradicts the narrative that ME patients are heavy utilizers of health care resources. Not that it ever had any evidence but this has been my experience as well. There is often an initial heavy use of resources to make the diagnosis, which is entirely the fault of health care systems that make it harder than necessary, but once that is met there is usually a comprehension that it is hopeless to expect any help.
     
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  10. mango

    mango Senior Member (Voting Rights)

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    No, what is translated here as "extremely severely ill" (ekstremt alvorlig syke) is not the same as "very severely ill" (svært alvorlig syke). The extremely severely ill is a subgroup from within the very severely ill group of respondents.

     
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  11. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Many free-text responses emphasize that it is better not to get help than to get help that causes extra strain and harm for the sick."

    Very sad but true
     
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  12. mango

    mango Senior Member (Voting Rights)

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    Another Google translated one (again, sorry about the low quality).

    Figure 3: Functional level of people very severely ill with ME ("How often can you perform these activities?")

    figure3_v2.png

    Edited! The heading in the previous version of the image was wrong. Should say "very severely ill".
     
    Last edited: Jun 25, 2019
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  13. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    These people seem barely alive. Horrible.

    Am I correct that there were 586 patients in the study of which :
    • 95 patients had moderate-severe ME.
    • 444 patients had severe ME.
    • 47 patients had very severe ME.
      • of which 9 who had extremely severe ME.
     
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  14. mango

    mango Senior Member (Voting Rights)

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    Yes, correct.
     
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  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    A clearer understanding of severe ME is so important.

    Most people if they know anything of ME at all think only of ‘mild’ forms or of people who are able at least to get our occasionally in a wheel chair.

    This is such a valuable report.
     
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  16. Medfeb

    Medfeb Senior Member (Voting Rights)

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    This looks very interesting. Would love to read the whole thing. I may have missed it but is there an English translation of the full report? Google translate doesnt deal with a file this big
     
  17. mango

    mango Senior Member (Voting Rights)

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    As far as I know there's no English translation as of now. It doesn't say anything on the webpage nor in the report about whether they are planning on publishing an English version or not.

    There are pdf splitters online where you can upload your file and divide it into several smaller pdf files for free. This one for example:
    https://www.ilovepdf.com/split_pdf
     
    Last edited: Jun 26, 2019
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  18. Medfeb

    Medfeb Senior Member (Voting Rights)

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  19. Hutan

    Hutan Moderator Staff Member

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    @mango, thanks very much for this. This is such a large sample; it's really valuable information.

    Can you make any comment as to what proportion of the 'at least severe' ME population in Norway this report might cover? How were the people identified and contacted?

    As it stands, assuming all people in the category were sampled (which of course is very unlikely), given the Norwegian population, more than 1 in 10,000 people fall into the 'at least severe ME' category.
     
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  20. mango

    mango Senior Member (Voting Rights)

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    @Hutan, I only know what's in the report, so I'll add a few more quotes:


    (Edited a few spelling mistakes.)
     
    Last edited: Jun 27, 2019
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