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

WHO: A clinical case definition of post COVID-19 condition by a Delphi consensus

Discussion in 'Long Covid news' started by rvallee, Oct 6, 2021.

  1. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
    See also this thread:
    International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)
    ____________

    Today, the World Health Organization has published a consensus definition and guidelines for Long Covid.

    https://apps.who.int/iris/bitstream...ition-Clinical-case-definition-2021.1-eng.pdf


    Background: A proportion of those infected with SARS-CoV-2 experience long-term symptoms. Definitions of this emerging condition vary, leading to complexities in advancing research and clinical policy development. Over the course of the pandemic, various terminology including long COVID, long-haul COVID or the WHO-recommended post COVID-19 condition have been proposed. Still, a globally standardized clinical case definition of this condition remains lacking.

    Aim: We aimed to determine the most important domains and variables for inclusion into a globally relevant and standardized clinical case definition for post COVID-19 condition.

    Methods: We conducted a two-round Delphi exercise, followed by a mixed, iterative consensus process. Five groups of stakeholders were engaged: patients, patient-researchers, external experts, WHO staff and others. Participants were chosen for balanced representation across age, gender, specialty, area of expertise and geography. Pre-defined statistical thresholds for consensus and disagreement were established.

    Results: There were 265 participants in Round 1, with 241 complete responses and 24 incomplete responses. In Round 2 there were 195 participants, with 178 complete responses and 17 incomplete responses. From an initial list of 14 domains identified, 11 were selected in Round 1, and one was added in Round 2 for a final total of 12. Each domain consisted of multiple questions and a total of 45 items were asked in the survey. A clinical case definition was developed with those domains that reached the pre-defined thresholds and further expanded with values that reached borderline significance. Wording was trimmed in an iterative process with patients and patient-researchers.

    Conclusion: Through a large global consensus process, a working clinical case definition of post COVID-19 condition, including 12 domains, is now available for use in all settings. This definition may change as new evidence emerges and our understanding of the consequences of COVID-19 continues to evolve.
     
    Last edited by a moderator: Dec 18, 2022
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
  3. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    So from what I understand, a 70% consensus was necessary for a symptom to get included in the case definition. For PEM it was 67%. Damn, very close! So right now it is just one of the other symptoms. However, the authors say the case definition is probably temporary and may change in the future.
     
    Hutan, sebaaa, Leila and 7 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
    Hutan, Chezboo, Leila and 3 others like this.
  5. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights)

    Messages:
    345
    I noticed that in the webinar itself a number of presenters mentioned PEM or PESE, that GET could be harmful or at least not helpful, that NICE recommended against GET, that patients may seem better then relapse, and that many tested interventions showed that 'respecting' symptoms and symptoms exacerbation was key. Some participants also commented and asked questions which reinforced that sort of messaging, which was great for visibility.

    There was plenty to criticise too in terms of the old chestnuts, but these were some positives.
     
    Hutan, alktipping, Skycloud and 4 others like this.
  6. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,494
    Location:
    Belgium
    Here's the definition:
    I think it is rather vague (much like many ME/CFS criteria).

    You don't need a confirmed SARS-CoV-2 infection, symptoms only have to last for 2 months. Only vague symptoms such as fatigue, or shortness of breath are highlighted. And these symptoms can be of new-onset, they can fluctuate or relapse... whatever. Symptoms usually have an impact on everyday functioning, so that isn't a selective criterium either.

    Not sure how this definition will be helpful in clinical practice or research. It seems more like a political statement that long-term disability following SARS-CoV-2 infection needs to be recognized (even if we are very poor at defining it).
     
    Hutan, Chezboo, Joh and 8 others like this.
  7. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,494
    Location:
    Belgium
    Further thoughts:

    I suspect that unexplained symptoms such as fatigue, shortness of breath, and cognitive dysfunction lasting longer than 2 months are quite common in the general population at any given time and that these symptoms may turn out to have multiple causes.

    Similarly, in the years of the corona-pandemic (2020-2021) lots of people were infected with SARS-Cov-2 and many more are unsure whether they were because lack of accurate testing.

    Consequently, I think this WHO definition will result in the label long covid being used for many unclear health complaints that have little to do with SARS-Cov-2 infection. This will cause confusion for patients where this label is applied incorrectly.

    I also suspect that this situation will be unhelpful for patients who did develop long-term and serious disabilities because of SARS-Cov-2 infection. I think it is in their interest to have a more stringent definition.
     
    Hutan, Joh, alktipping and 9 others like this.
  8. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    alktipping, sebaaa and Art Vandelay like this.
  9. Arvo

    Arvo Senior Member (Voting Rights)

    Messages:
    796
    There's also no specification for "cognitive dysfunction", it is, as usual, left rather vague.

    There's a difference with having trouble with finding words at times, acting a bit confused or being a tad forgetful, which is rather common and can have many causes (including stress),

    and

    Continuously and combined being a hazard for leaving on the stove (or even leaning into it when it's on), using very wrong words, not noticing it when you do very odd stuff, not being able to write your name or certain letters, switching letters when writing or leaving out parts of words, not being able to combine simple information to a logic endpoint and suddenly being completely unable to remember easy, routine things you do every day, like forgetting where your house is or how to cook a dish.
     
    Chezboo, alktipping, Mithriel and 3 others like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
    There's no reference point for this in medicine, no terms, no concepts, it's been completely ignored and dismissed as vaguely psychological, so they really have nothing to work with. It would be great if they recognized that it's a need, though, instead of whining for years about how it's hard and no one knows where to begin so no one ever does.

    We're still at the stage where the colloquial term of brain fog is the best term to use simply because medicine has completely failed at taking this seriously. Lots of work ahead, but there's nothing to work with because the necessary work wasn't done in the past.
     
    Chezboo, Wonko, Arvo and 2 others like this.
  11. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    The New Zealand Science Media centre asked some experts about the new case definition:
    Long Covid Gains Official Recognition – Expert Reaction

    More specifically:
    - Dr Anna Brooks, Cellular Immunologist and Senior Research Fellow, Maurice Wilkins Centre, University of Auckland, who alse mentions ME/CFS
    - Dr Stephen Ritchie, Infectious Diseases Specialist and Senior Lecturer – Clinical, Molecular Medicine and Pathology, University of Auckland
    - Emeritus Professor Warren Tate, biochemist, molecular biologist and ME/CFS expert, Brain Health Research Centre, University of Otago

    I liked Warren Tate's opinion the most: He welcomes the case definition but also mentions that no such thing for ME/CFS exist (and calling it a sister disease). Also:

    “There are some slightly puzzling aspects to this announcement. Long COVID has generally been accepted to be a group of post-COVID conditions (e.g. specific organ effects, post-traumatic stress disorder, and perhaps the most common, post-viral fatigue syndrome), although not with universal agreement. Here, the definition has been derived for the group and so the patients may still be diverse, requiring differing strategies for improving their health. The definition itself may eliminate some of the subgroups while including others. In reality, the symptoms chosen for the definition will largely identify the subgroup with post-viral fatigue.

    “In fact, as defined here the condition’s features are incredibly similar to its sister disease ME/CFS and the WHO definition almost mimics a clinical case definition for that disease. In that sense it is surprising that people who have been suspected but not formally diagnosed with COVID-19 would be included within the definition. These could be people with ‘classic ME/CFS’ that has arisen from an alternative source.

    “Although the purpose is admirable – to derive a common case definition that could be used worldwide and focuses wholly on COVID-19, it is surprising there was no clear reference in the WHO’s release to how similar this is to the clinical case definition for ME/CFS, and how these diseases should now be considered together.​
     
    Hutan, rvallee, NelliePledge and 6 others like this.
  12. Arvo

    Arvo Senior Member (Voting Rights)

    Messages:
    796

    This is exactly one of the key points that should be adressed. It's the same as what they did to "fatigue" when the psychiatrists hyjacked ME.

    Saying that it's all so hard and mysterious is complete nonsense, and mainly psychiatric narrative. The answer to big strides in that department was easy accessible and low tech: just spend time with patients and listen to them. Ask about things, hear what they are saying (all of it, not just what you were asking for), analyse, then ask again.

    Looking at the late '80s, while interpatient contact was greatly limited in comparison to now, there was quite some knowledge around that ME "fatigue" was something else than normal, with different characteristics. There were accounts of people trying to describe it. If someone would have had the budget, time and inclination to collect and analyse patient descriptions of their symptoms, this "mysterious" puzzle would have looked a lot clearer.

    Regarding fatigue, they might not have had the terms for it, but patients would have explained in their own words, how their bodies felt if they went beyond their limits, and the PESE/PEM mechanism. (I, as Lyme patient, could have told you everything about this weird, characteristic characteristic thing I had that I called my Two Day Dip - I thought it was just me, I only learned about PESE and it being a Thing for other people too much, much later.) Or, regarding cognitive dysfunction, what that meant in practise.

    I think he biggest reason that didn't happen was probably the psych takeover and narrative push (because it stunted medical research to get to that point, while keeping everything vague served them), but also because researchers who were looking into ME were busy with their own patch (+ it wasn't their expertise) and doctors with their full practise (which did lead to the closest descriptions with some detail, but no concerted effort). There was no money or person appointed to sort this particular thing out, and it wasn't the patient centered time yet, it was the Eminent Men Who Say So centred time. (It still is, but looking back it is so freakishly absurd how, especially in psychiatry, patient experience and account was non-existent; it was all what Men In White Coats said about them that was deemed reality, no matter how nonsensical, even if most of it was on It-is-so-because-I-say-so basis.) Add a big dollop of arrogant certainty that you know everything already anyway and don't need to learn something new, with extra spoons of misogyny and ableism, and voilà:

    we're still at fatigue and brain fog 30+ years later.
     
    alktipping, Hutan, rvallee and 2 others like this.
  13. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    2,815
    In the 80s among doctors who specialized in ME, patients and patient groups there was discussion about treatments but there was a sense of what the disease was. Ramsay's description that it was characterised by an abnormal response to exercise (extreme, prolonged and often delayed), variability of symptoms over hours, days months and years and as he said "an alarming tendency to become chronic" is still accurate. The variability is like that of MS; the more severe the disease the less variable it becomes.

    The only thing that may be disputed now is that he believed it was caused by infection even if that infection was subclinical.

    Then, with no warning as far as I was concerned, a group of psychiatrists I had never heard of decided it was a disease of fatigue, renamed it, and redefined it so that these critical symptoms were ignored.
     
  14. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    Medical News Today: WHO issues clinical case definition of long COVID

    I believe the WHO should also create a case definition for stillnotgettingitis, a terrible chronic psychosocial disease so many unfortunate doctors suffer from.

    From the article:

    Dr. Al-Aly, the chief of Research and Development Service at the Veterans Affairs St. Louis Health Care System, said: “This definition is too little too late. I was hoping that the WHO definition would be more comprehensive and more inclusive. It does not move the field forward a single inch.”

    Dr. Al-Aly noted that the WHO definition “is based on only symptomatology — ignoring a lot of the manifestations caused by COVID-19, including new-onset diabetes, heart disease, kidney disease. [Moreover,] it also conditions the diagnosis on the idea that symptoms cannot be explained by an alternative diagnosis.”

    “[This] makes long COVID a diagnosis of exclusion — further marginalizing long COVID. I worry that this myopic definition of long COVID may be used by governments and health insurers to debase long COVID, deny insurance coverage, etc.”

    Dr. Al-Aly also cautioned that gaslighters may exploit the shortcomings of this definition.

    No other expert opinions were included.

    Full article: https://www.medicalnewstoday.com/articles/who-issues-clinical-case-definition-of-long-covid

     
  15. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    This has been published in the Lancet now, with the accompanying text somewhat changed in a few places. For example, in the original one ME/CFS was briefly mentioned, although not really in the context of being a similar medical condition:

    From a historical perspective, it took years to define AIDS/HIV, with the first human immunodeficiency virus (HIV) cases identified in June 1981 and the naming of acquired immune deficiency syndrome (AIDS) in September 1982, with the WHO AIDS surveillance case definition developed in October 1985 (15). Other examples are systemic exercise intolerance syndrome (SEIS) (formerly called chronic fatigue syndrome) (16), and most recently, post-intensive care syndrome (PICS) (17).​

    This paragraph is missing entirely from the version in the Lancet now, so there is no mention of ME/CFS at all.
     
    Last edited: Dec 24, 2021
    alktipping, sebaaa, Hutan and 5 others like this.
  16. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,055
    Location:
    UK
    Who makes these changes?
     
  17. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    Suggestions for change in the final version could come from the Lancet editorial team, from peer reviewers or be made by the authors themselves.
     
    alktipping, Ash, Trish and 3 others like this.

Share This Page