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Of the ICC-ME authors who have subsequently published in the field (based on PubMed), all have subsequently used ME/CFS and/or CFS

Discussion in 'General ME/CFS news' started by Tom Kindlon, Jan 26, 2020.

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  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    @Colleen Steckel

    If a ME diagnosis helps you access useful treatment for some aspect of your illness, then getting that problem diagnosed would make it even easier to access treatment. For example, if a ME diagnosis helps you access medication used to treat immune deficiencies then getting the immune deficiency diagnosed would be even better than the ME diagnosis for accessing treatment. I don't know what kind of treatment is helping you so I used the example of immune deficiency.

    Going along with my example, from my point of my view it would make no sense to suggest that ME is associated with immune deficiency when that is not something generally true, even if some people are going to find that helpful to get the care they need. A person might fit diagnostic criteria for ME and have immune deficiency but that would be individual variability, a misdiagnosis or just a coincidence.
     
    Last edited: Feb 27, 2020
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  2. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I sometimes wonder: if high-quality research were to show that drug X is safe and leads to a substantial improvement in pain and fatigue in patients diagnosed according to the Fukuda criteria, would those who prefer ME per ICC still argue that CFS has nothing to do with them? Or would they want to try drug X as well? I suspect the latter.

    I bring up this thought experiment to demonstrate that diagnostic criteria ain't the only thing that matters in research...
     
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  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The International Consensus Criteria paper and International Consensus Primer are both full of ME/CFS and CFS citations.
     
    Last edited: Feb 28, 2020
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  4. dave30th

    dave30th Senior Member (Voting Rights)

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    exactly. I face this constantly.
     
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Firstly, this is a long post, so I apologise in advance.

    There are a few things to consider here. I prefer the term 'ME' but for the many reasons listed here and elsewhere, I think 'ME/CFS' is a compromise we'll have to live with for now.

    The point of a compromise is that there has to be a little give on both sides, otherwise it's not a compromise. Ideally, we can move towards use of ME (or an even better term, if science demands it!) solely, but until then we have to be able to actually get on with things, which makes compromise necessary. If every research paper fell apart at the title, nothing would get done.

    I think there's a very appealing, seductive argument about 'real ME'. It's ultimately essentialist, I think, and it's so appealing precisely because it offers the promise of certainties in an illness plagued with uncertainty. There are similar arguments that crop up in other groups, so it's not unique to us (internal debates about who 'really' counts as black, Jewish, a woman, a feminist, disabled, a Buffy the Vampire Slayer fan, Labour, Tory, etc).

    The argument goes:

    If only all the research looked at real ME, using real criteria, real tests and real experts, and if only we separated the real patients from the pretend patients, we'd suddenly have a very clear perspective about what's happening in ME and all the answers would fall into place.

    However, it could easily be rewritten as:

    If only all the research looked at our ME, using our criteria, our tests and our experts, and if only we separated ourselves from the pretend patients, we'd suddenly have a very clear perspective about what's happening to us and all the answers would fall into place.

    The first argument (until you paint it in us-versus-them terms) is a really compelling solution for many people because it gives them certainty. It also gives them an identity to rally around: we're this, the enemy or outsider is that. If only the world could give us this one simple thing we know we need, everything will be fixed!

    It gives people a feeling of validation from others who also believe this, and creates a sense of belonging and being in on the secret. And people really, really like simple answers ('It's God!' 'It's Russian bots!' 'It's all in the mind!').

    But it's simply not true at present. Life isn't that simple. Diseases are messy and complex. Explanations are tricky. Multiple things can be partially true at the same time (take classical physics and quantum physics). The pieces don't always fit.

    But this argument suggests that the pieces do really fit. We just have to ignore everything that's inconvenient.

    It's unrealistic because if we only used ME research, there'd be only a handful of papers at present and we would be able to conclude even less about the illness.

    Most of the evidence used by those who advocate for this viewpoint uses CFS criteria and refers to CFS, ME/CFS or CFS/ME.

    There are a number of additional problems, as far as I can see:
    1. The process of peer review almost guarantees that papers will refer at least to ME/CFS if not CFS or even CFS/ME. That's not going to change unless you can force a bunch of people who fundamentally disagree with us to change their language. That's as unlikely as getting the 'real ME' people to back off. So saying you want 'ME research' or for your money only to be spent on research that uses the name 'ME' is unreasonable and impractical. It's also hypocritical, because 'CFS' research is used when it suits those who want ME only.
    2. Most researchers in the field don't use ICC. Those who prefer to use the term ME can't agree on which definition is best (Ramsay, Nightingale, ICC, London, London Revised). Those definitions don't really agree with each other 100% either. Even those who wrote the ICC don't use it, with some thinking it was a mistake.
    3. The ICC still has weaknesses as a consensus criteria. It essentially boils down to expert opinion informed by literature review, which is fine, but it's not the sole or best way to define criteria. It can become an echo chamber. Similarly, NICE 2007 was also created in that way but has the benefit of having included lay members and being sent out for public consultation (arguably there were problems with the latter, but hopefully you see my point).
    4. You could argue, for example, that something like Leonard Jason's four-item (empiric) criteria is another valid method, because it uses empirical methods to find the symptoms most likely to distinguish patients from controls and similar diseases, rather than just looking at opinion based on a literature review.
    5. The ideal criteria (in lieu of a biomarker) would probably consider a range of factors: empirical criteria, literature review, expert consensus and a public consultation to cover the bases. It would also have clinical and research experts, and lay members on the committee. Other criteria, such as Ramsay and Nightingale, are potentially even worse because they're the opinions of one expert each. (London has 2-3, IIRC.)
    6. The ICC doesn't select a homogeneous population. Because there are so many options to choose from, patients can look quite different at the end. All that's guaranteed is that they all have a lot of symptoms.
    7. It may just select moderate to severe patients, which of course leaves out the milder group. It may actually select patients with multimorbidity. That's potentially dangerous because ascribing everything to ME means that symptoms which might have another, treatable cause are dismissed as part of ME.
    8. A comparison of all the criteria found the relative size of the patient cohort selected by the ICC was almost the same as the four-item criteria, so why is one better than the other?
    9. ME and CFS have the same WHO code, and this is supposed to be used internationally. The other code is Chronic fatigue, unspecified. R53.82, which is arguably incorrect coding for our condition anyway. [ETA: There's a longer explanation of this below.]
    10. But more importantly, patients don't control which code they get; doctors do. It would therefore make more sense to campaign to retire the R53.82 code altogether to avoid ambiguity.
    11. I'm highly sceptical of ME Advocacy's decision not to do that. It reeks of elitism to me. It further entrenches divides by including in our community only those able to advocate for (and get) a G83.3 coding on their own records, while those who can't or who are unable (perhaps the most vulnerable in our community, ironically) are kept outside of advocacy efforts. I imagine those with better insurance would fare better in this situation than those on worse insurance plans.
    12. There's no guarantee that anyone claiming to have real or pure ME actually does, or conversely that anyone with CFS doesn't have ME. Without a biomarker, it's impossible to know for certain, but at least some of those patients will be proven to have other illnesses in time. Diagnosis, even with tests and restrictive criteria, is still a 'best guess' process.
    I also note some worrying trends, such as policing of language within our own community in a way that excludes some (it's one thing asking experts and journalists to use our terminology, but each patient is entitled to use whatever language they find most suitable), social media pile-ons for those who don't toe the party line (i.e., bullying), repetitive posts saying the same thing and derailing conversations (which hampers discussion), and an 'in-group' mentality that exhibits unfavourable or unpleasant attitudes to those who are outside that group (again, bullying and cliquishness).

    It all strikes me as being very un-scientific, actually, despite the stated aim being to increase rigour in research of ME. Besides which, it means we keep having the exact same conversations, over and over again.
     
    Last edited: Feb 28, 2020
  6. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    This maybe needs some clarification for those who are not familiar with the U.S.'s ICD-10-CM:

    In the WHO's international edition of ICD-10 (for which the most recent release is ICD-10 Version: 2019) the ICD-10 "Concept Title" code is:

    G93.3 Postviral fatigue syndrome

    The specified Inclusion term for ICD-10 Version: 2019 (which has retired the prefix "Benign") is Myalgic encephalomyelitis, which takes the G93.3 code.

    Chronic fatigue syndrome is not included in the Tabular List; but it is included in the Alphabetical Index, where it is coded to the G93.3 Concept Title code. So all three terms: PVFS; ME; and CFS are coded to, or indexed to, G93.3 in the WHO's ICD-10.



    The U.S. health agencies, NCHS and CDC, were licensed by the WHO, Geneva, back in the 90s, to adapt the international version of ICD-10 for use in U.S. health systems. The WHO does not control the content of the U.S.'s "clinical modification", which is known as ICD-10-CM.

    (The U.S. NCHS/CDC has used the international version of ICD-10 for Mortality data since 1999. But it is not obliged to use ICD-10 for Morbidity since it was licensed to develop and maintain an national adaptation.)


    The R53.82 Chronic fatigue, unspecified code and term are specific to the U.S. ICD-10-CM.

    (The term "Chronic fatigue, unspecified" was inadvertently included under the Synonyms list under ICD-11's 8E49 Postviral fatigue syndrome in the ICD-11 Beta draft. But in January 2018, I submitted a proposal and rationale for its removal from ICD-11, which was accepted and implemented in March 2019.)


    So there is no R53.82 Chronic fatigue, unspecified in the WHO's ICD-10, nor is the term in ICD-11, nor in any other clinical modification - it is a term and code specific to the U.S. ICD-10-CM.


    For the U.S. ICD-10-CM, the Concept Title term remains

    G93.3 Postviral fatigue syndrome


    and the specified Inclusion term is Benign Myalgic encephalomyelitis, which takes the G93.3 code.

    So these two terms follow the WHO's international edition for chapter location and hierarchy.


    But for ICD-10-CM, "Chronic fatigue syndrome" as "Chronic fatigue syndrome NOS*" is located in the Symptoms, signs chapter as an Inclusion under R53.82 Chronic fatigue, unspecified and takes the R53.82 code, like this:


    ICD-10-CM FY 2020 edition:

    R53.82 Chronic fatigue, unspecified
    Chronic fatigue syndrome NOS


    Excludes1: postviral fatigue syndrome (G93.3)


    And under the G93.3 code, there is a reciprocal Excludes1 type exclusion for Excludes1: chronic fatigue syndrome NOS (R53.82)

    *NOS = Not otherwise specified



    To recap: in the U.S.'s ICD-10-CM, these are the terms:

    Chapter 6: Diseases of the nervous system

    G93.3 Postviral fatigue syndrome
    Benign Myalgic encephalomyelitis
    Excludes1: chronic fatigue syndrome NOS (R53.82)


    and in

    Chapter 18: Symptoms, signs

    R53.82 Chronic fatigue, unspecified
    Chronic fatigue syndrome NOS
    Excludes1: postviral fatigue syndrome (G93.3)




    You may not follow the proceedings of the twice yearly U.S. ICD-10-CM Coordination and Maintenance Committee but in 2010, 2011 and 2018, proposals for alternatives to this current chapter location and code hierarchy were discussed but not resolved.

    I am in the UK and won't give an opinion on this. But not everyone in the U.S. would welcome the relocation of the CFS term to the G93.3 location.


    EDITED to add Note:

    Canada (ICD-10-CA): Postviral fatigue syndrome is the G93.3 Tabular List Concept Title. Benign myalgic encephalomyelitis; and Chronic fatigue syndrome are both inclusions under G93.3 in the Tabular List.

    Germany (ICD-10-GM): Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome] is the G93.3 Tabular List Concept Title.

    Chronisches Müdigkeitssyndrom bei Immundysfunktion; Myalgische Enzephalomyelitis; and Postvirales Müdigkeitssyndrom are all inclusions under G93.3 in the Tabular List.

    Australia (ICD-10-AM): Postviral fatigue syndrome is the G93.3 Tabular List Concept Title. "Benign" has already been retired for ICD-10-AM* and the G93.3 inclusion term is Myalgic encephalomyelitis.

    *I don't have a date for when the ICD-10-AM retired the "Benign" prefix but it predates the release of ICD-10 Version: 2019.
     
    Last edited: Feb 28, 2020
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  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I was recently called "...Toxic, patronising and lacking in any sort of consideration." on Twitter for expressing a polite objection to the statement:

    "...They tend to be the older, longer suffering MEeps, obsessed with the history and politics of the disease."
     
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  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    And I would argue with that characterisation too, since it's not a requirement to be older to insist on others using the ME terminology. There are, of course, rude people in all walks of life.
     
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  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I had almost tagged you in the post to provide clarity, but assumed you would.

    I think my point still stands. What exactly is CFS NOS? Fukuda? Oxford? CF? Or is it just ME without co-morbidities? It's an inappropriate and unclear label, regardless.
    No, I expect not. But who suffers for this (I'm not really targeting this at you, Suzy; it's a more general question)?

    If, as has been argued, ICD codes are essential to getting proper treatment, and ME patients can only get proper treatment if they get the G83.3 coding, then adding another code potentially harms every ME patient since they could readily be given the wrong code by a clinician biased against the term ME.

    This fear of 'watering down' ME some people have is going to, as a direct result, throw everyone who isn't lucky enough to get an ME label to the wolves. CFS is still the more popular of the two terms in America.
     
    Last edited: Feb 28, 2020
  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    As I've said in my post:

    "NOS" in ICD classification systems means "Not otherwise specified".


    Donna Pickett and other CDC and U.S. health agencies have given the following guidance:

    https://dxrevisionwatch.com/2011/10...-cm-cfsac-and-the-coalition4mecfs-initiative/

    Extract from my post:

    What is NCHS’s rationale for retaining CFS as (CFS NOS) in the R code chapter?

    According to the background document Dr Wanda Jones presented to the Committee:

    As it relates to CFS the use of two codes is consistent with the classification as there would be a code to capture CFS when the physician has determined the cause as being due to a past viral infection (G93.3) or if the physician has not established a link with a past viral infection (R53.82).

    If code R53.82 were eliminated it would not be possible to disaggregate cases that are now distinguishable through the use of two codes.

    There is a general equivalence map between ICD-9-CM and ICD-10-CM codes, however, if a concept is not carried over from the earlier version to the newer version data will be lost going forward.


    Source: Extract: ICD-related questions from CFSAC for May 2011 meeting


    Dr. Jones clarified for the Committee that if, in the clinician’s judgment, it was considered there is enough evidence to attribute the patient’s illness to a viral illness onset then the clinician could code to G93.3 (Postviral fatigue syndrome). If “however they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes.” [1]

    It has been further confirmed that testing for a viral illness is not required to assign a code – that coding is based on the clinician’s judgment.

    And from the NCHS September 14 meeting Proposals document:

    In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.​

    [Extract ends]


    Bear in mind that the U.S. was still using ICD-9-CM, its adaptation of the WHO's long since retired, ICD-9, right up until ICD-10-CM was finally implemented in October 2015.

    So the U.S. didn't adopt ICD-10-CM for Morbidity until 21 years after the UK had adopted ICD-10.


    You would need to put that question to those who don't support the relocation of CFS under G93.3 for ICD-10-CM.



    CDC chose to move CFS under the Symptoms, signs chapter (as CFS NOS) back in 2004 and provides the guidance I have pasted above. Bill Reeves was the driver for this variation. In 2003, there had been a different draft proposal for ICD-10-CM. (If you are interested to know what that was, I can find the screenshots later today.)


     
    Last edited: Feb 28, 2020
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  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Thank you. So the problem with NOS, as I can see, is that gradual onset patients or those without viral triggers would all get shunted here. It's telling it was Reeves who did this, too.
     
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  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    In 2003, the NCHS/CDC published a draft of the ICD-10-CM for consultation, testing etc.

    This had been the proposed structure for the terms as the draft has stood in 2003 (screenshots sourced from 2003 draft Tabular List, a copy of which I have archived.)

    In 2004, Bill Reeves gave a presentation at a CFSAC meeting which was attended by Mary Schweitzer. Reeves presented a slide with changes to the draft which first appeared in print when the next draft was released (in 2007) and which were retained when the ICD-10-CM was adopted in October 2015.

    So this is how the draft had stood in 2003:


    [​IMG]
     
    Last edited: Feb 28, 2020
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  13. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    That's about it, yes.
     
  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Indeed. But my objection was to the suggestion that having knowledge of, or interest in the history and politics of ME equated to "obsession".

    As I politely pointed out to these individuals, you cannot take the politics out of ME and the history is crucial for context, whatever position one holds.
     
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  15. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I agree with that too. I think you can know the history and prefer the term ME without everyone falling out all the time (I'm not including you in this).

    I also think your job is a pretty specific one but also an important one. I'm sure we'd have been shunted under something else if people hadn't fought for it, which would have had ramifications.

    I also think there's a need for researchers and those who set policy to discuss why they use terms with each other, and with stakeholders, to make sure they're keeping relevant and on-track.

    I think it's probably not constructive for each of us, as patients, to fall out over it, though.
     
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  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    And the irony of dismissing me as "...Toxic, patronising and lacking in any sort of consideration." because I objected to the use of "...older, longer suffering MEeps, obsessed with the history and politics of the disease." was not lost on those familiar with my work and what I have achieved in relation to classification and terminology systems to safeguard patients.

    Hey ho.
     
  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    To be honest, Adam, I've been doing this for so long, now, that as far as I'm concerned, they can go and boil their own heads. I just don't have the time or patience for them.
     
  18. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    If the external ICD-11 Neurology work group and its internal managing editor had had its way, CFS would have replaced PVFS as the Concept Title (lead) term for ICD-11.

    And CFS and its proposed inclusion, (B)ME, would have been relocated under the Symptoms, signs chapter under Symptoms, signs or clinical findings of the musculoskeletal system.
     
    Last edited: Feb 28, 2020
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  19. Colleen Steckel

    Colleen Steckel Established Member (Voting Rights)

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    Apologies that this is longer than I hoped and may have fallen into rant territory. I appreciate those who bear with my attempt to be coherent.

    I see where you are going with this argument. But I see it differently.

    From my point of view and experience of 30 years, I have witnessed many patients diagnosed with CFS and/or ME/CFS who ended up having something else (often something that is listed as needing to be screened for in the IC Primer). I remember there being studies using Fukuda that contradicted what was found in patients using CCC or ICC. (Sorry I don't have examples handy. I think TRPM3 might be one of those.)

    Science is about removing variables. The first variable is patient selection. We are seeing more and more move from the CCC criteria to using the ICC.

    It's hard to know if all the comments you made were directed at me specifically or if I was lumped in with some others. I would NEVER throw out a study just because it was labeled CFS or ME/CFS-CCC and wasn't labeled ICC. To start with that would mean throwing out everything prior to 2012 which makes no sense as this disease has been written about/researched since at least the 1930s.

    We have some excellent work done by respected researchers who had no choice but to use the CFS or ME/CFS label. I think anyone who has been in the community a while knows which research is to be respected and which does not properly reflect this patient population.

    But having to guess which studies are applicable to ME going by a CFS or ME/CFS label is a very sloppy approach to science. If all those studies were considered of equal value we'd be looking at a lot of inappropriate psychiatric science mixed in with the science we know applies to the ME patient group.

    In order to bring in new researchers and expect them to be able to reproduce the science they will HAVE to know which patient group is appropriate. I continue to believe that using the ICC and the IC PRIMER to screen patients is the best approach. I'm pleased to see more quality researchers agree. Studies using anything else is worth reviewing and if necessary doing stratification of patients. It is important to note that even studies that aren't using the ICC are starting to pay attention to stratification of patients who are in the more severe category. That is a very welcome approach and likely to lead more quickly to finding out if the more severe have different disease manifestation/progression than those who exhibit fewer or milder symptoms.

    I strongly object to the term "pretend patients". That is offensive language and adds to the divisive tone. Of course, I don't think ANY of these other patients are "pretend"! I think it is quite likely many of them need to be properly evaluated. As Dr. Hyde has pointed out much too often patients given the CFS (or ME/CFS - aka SEID) label have not been properly screened. Dr. Guthridge is currently on twitter listing many of the diseases that are too often lumped in with the ME/CFS patient population.

    Let's at least agree that no matter which label or criteria is used that ALL patients need to be properly screened for all the possible diseases/conditions that could have landed them with any of these labels. This is a problem that is seen in the EDS, MCAS(D), MCS, POTS, Fibro, and many other patient communities. We should all be fighting for insurance/government health agencies to start spending money up front to make sure we are accurately diagnosed instead of fumbling around for years, often using $ we don't have to get private testing that finally gives us the diagnosis we should have had years sooner.
     
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  20. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    It's fine. It's not a rant at all. Although I should warn everyone that my reply is long too.
    Loose criteria in trials have always been a problem and no one will disagree with you there. But things like TRPM3 still need to be independently verified. It's not as easy as saying that the null result in following this up is due to criteria differences. It might be, but we simply don't know. A single result that we like doesn't make something true.

    It's also worth noting that regardless of which criteria were used in that trial, the paper refers to 'CFS/ME' and not ME. That's because the name we use often has little relation to the criteria used. It's safe to say NICE 2007 wasn't the criteria used in that trial.

    So whether a patient calls their own illness CFS, ME or something in between is no indication of how they were diagnosed. It's also no indication of what exclusionary testing they have.

    In the UK, for instance, NICE 2007 recommends a basic panel to exclude obvious alternative diagnoses (autoimmune diseases, hepatitis, anaemia, etc) but some/many/most of us will have had other tests based on history because most GPs don't think of ME as a first resort. I have a family history of asthma and autoimmune disease, so I had additional tests, including an MRI, to rule those out.

    Quite often, the referral to a 'CFS clinic' is a last resort, so that basic battery of tests is done at the end after subjecting you to a range of other investigations.

    But there's still a problem in that multiple negative test results can bias clinicians against you (they start to think you're making it up), can be demoralising, and can delay diagnosis. There is a complex issue here which needs thorough discussion and probably a lot of nuance.

    Finally, there's an assumption here that only people diagnosed with non-ME criteria are misdiagnosed because people using ICC will also use every test in the IC Primer. However, there are people diagnosed by all criteria who are misdiagnosed, few clinicians will treat the list in the Primer are as an essential checklist, and in practice, clinicians mix and match approaches based on their own clinical experiences (cf: the report from BACME in the UK which shows clinics use a combination of criteria with their own clinical judgment).

    All tests aren't universally available. The average person doesn't have limitless insurance coverage, or if they live in a country with free healthcare, there will be a necessary limit on exactly how many tests can be offered.

    If a person's history doesn't suggest RA, to give an example, most clinicians probably won't do much more than a basic blood panel. But there are also anecdotal stories of people diagnosed with ME later developing MS or Parkinson's, so it's also possible that tests come back negative at the time because their disease is subclinical or not yet at the stage where it's easily apparent. That's something that exhaustive testing can't always pick up.
    Yes and no. It's also about finding the truth, despite our own biases as human beings. In science, ideally, you should test a hypothesis from every angle until you're sure it's right.

    The problem with ME research is that there's a lot of crap and not a lot of good. That requires investment, training, confidence and vision.

    But I think even some of the 'heroes' of the ME research world are sadly doing low quality work or a low volume of good quality work. We need fresh blood urgently, and especially money.
    Where's the evidence of this? Few of the ICC authors themselves use the criteria. That says to me that this statement is false.

    Of course more papers since 2011 have used the ICC, but that's because it didn't exist before then. It doesn't mean it's being used much.

    What I see is more researchers using a combination of criteria (usually Fukuda and CCC) to see if there's a tangible difference between the two cohorts. That's probably sensible, since if there's a major difference between them, that may help us identify subgroups and/or alternative diagnoses that are being missed.
    I specifically didn't name anyone because it was a long post and I didn't want it to feel like an attack. But they're also general points made on my own observations. We all get things wrong and close ranks at times. It's not a flaw specific to one person.

    The conversations on here are mostly very civil, thanks to the moderators, but I see things on Facebook exploding all the time. It's not any one person there either.

    There's just a common narrative that underlies most of it, which is really depressing because it's just the same soundbites over and over again.
    Two things really:

    i) Why can't the same courtesy be extended to patients who use various terms? Why do we attack each other over using the wrong terms but researchers get away with it? Patients may just be using the terms that have been imposed on them by clinics or the health service. (I'm not saying you're doing this, BTW, but I do see pile-ons when people use the wrong terminology.)

    ii) While we have ideas about who's doing good and bad research, we also have to be careful not to give researchers we like a free pass.

    The Griffiths team, for example, to use a finding you mentioned, may announce results we like, but are they really giving us the best science they can?

    Many people would argue they aren't. They exaggerate their findings and use tiny patient samples which make their results very hard to have faith in. We deserve better than this.
    You're conflating two issues here: research and clinical practice.

    I already agree that stronger criteria are better for research, but you haven't engaged at all with the flaws I pointed out in the ICC, which selects a less homogeneous group than the CCC. If precision is what you want, ideally you want patients with the same core symptoms.

    Having a set list of fatigue, PEM, sleep dysfunction, neurocognitive impairment and pain (with options for autonomic, neuroendocrine, or immune manifestations) seems better than ICC's pick-and-mix approach.

    Diagnostic criteria should identify the most characteristic (and prevalent) symptoms, rather than every single possible symptom, and will always require a work up with clinical judgment.

    In clinical practice, it's more important to diagnose someone quickly to start treatment. We hear again and again how patients have to fight to get any sort of diagnosis. The longer they wait before treatment, often the worse their symptoms are. Why would we try to make that harder for them?

    In clinical practice, a diagnosis will always be a 'best fit' and liable to change if new information arises. That's just the nature of how it works. That's why practising clinicians prefer CCC (or even IOM), because it's straightforward.

    Yes, patients should have a proper work-up and exclusions. But they shouldn't still be waiting for a diagnosis 12+ months down the line! Exclusions have to be investigated based on relevance to the patient. Not every patient needs an MRI with contrast if they show no symptoms of MS. Some of the exclusions can be investigated while a 'suspected ME' diagnosis is entertained, if needed, so patients can at least access relief for pain and sleep.
    I agree. We still desperately need more good quality research though.
    I used intentionally pointed language, but you've just proved my point again.

    You're still claiming that many patients labelled with CFS, ME/CFS or SEID will have incorrect diagnoses, while failing to acknowledge that a) the name used often has no relation to which criteria were used at diagnosis; and b) many ME-ICC patients are misdiagnosed too.
    A lack of exclusionary testing is a problem, I agree, but there are many patients who've undergone the Byron Hyde model of extensive testing and still come out feeling pretty raw about it.

    Testing itself has a burden on patients in terms of post-exertional relapse. It's not as simple as sending everyone for 100 different investigations.

    Insurance companies won't pay to do every possible test just because it's in the IC Primer. Neither will state-run healthcare systems.

    Until we have a biomarker, there will continue to be mistakes (and we'll probably still have mistakes even after; that's unfortunately how real life works).

    Simple answers may be seductive, but it doesn't mean they're right. Healthcare systems and societies are machines with vast numbers of moving parts.
     
    Last edited: Feb 29, 2020
    Keela Too, Hutan, Hoopoe and 7 others like this.

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