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Petition to ask government agencies adopt ICC

Discussion in 'Petitions' started by anniekim, Jul 26, 2018.

  1. strategist

    strategist Senior Member (Voting Rights)

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    These treatments were recommended because a group of British psychiatrists promoted them and produced research that appeared to confirm their efficacy. This started in 1989, well before the Fukuda criteria were created.
     
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  2. Trish

    Trish Moderator Staff Member

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    Hi @Colleen Steckel, welcome to the forum. I hope you find us a friendly and helpful community.
    I don't know which country you are in, but as you are probably aware, in the UK there aren't specialists of this sort who will prescribe on the NHS treatments not listed in the NICE guidelines. And to get treatments into the guidelines, we need clinical trials. It's all very well that doctors in the USA may have been using treatments for years, but if they haven't done the clinical trials on them, we don't get them.

    So all our doctors here can do is, at best, symptomatic treatments for such things as pain, sleep, nausea etc if the patient can tolerate the medications, treatment for co-morbid conditions such as POTS, advise about pacing, and make sure patients are getting the level of care they need. Most of us struggle to get even this.

    What sort of treatments are you suggesting specialists should be providing beyond symptomatic?
     
  3. Colleen Steckel

    Colleen Steckel Established Member (Voting Rights)

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    I am in the US. So, yes, you are right we have expert doctors here (Montoya, Klimas, Enlander, etc.) who are doing treatments that are likely not readily available to many. Including those who don't have access to these expert doctors. Note - not usually covered by insurance so most patients do not have access to these doctors.

    From the IC Primer - http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf
    On Page 11 are the lists of tests that include virus testing for EBV, CMV, HHV6 etc., as well as testing for immune system and neurological issues. When those tests are done the doctors find things that can be treated with antivirals, immune boosting like IVIG etc. These are giving patients some improvement in quality of life.

    That's why I think having the ICC adopted will lead to better treatments for patients. As for studies proving these treatments work... that IC Primer was written by experts with thousands of hours of experience with patients with ME. What we haven't had - because the ICC was not adopted - are studies based on this experience.
     
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  4. Colleen Steckel

    Colleen Steckel Established Member (Voting Rights)

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    Yes... you are right... that did come before Fukuda. But Fukuda being adopted is what led to there being an institutional bias in the US against ME patients.

    I got sick in 1989 - I was treated with respect and given antivirals into the 90s. I had a period of better health and didn't pay much attention to what was happening. After leaving the area that I had received good treatment I was shocked to find out doctors no longer knew about immune system issues or to watch for malabsorption so I was no longer monitored properly and ended up being in Vit D deficiency that led to cognitive issues. I came back into advocacy to discover what a mess the Fukuda had created in mainstream medicine.
     
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Adopting the international consensus criteria doesn’t guarantee anything about access to tests and treatments. And the treatments and tests mentioned in the international consensus primer could be offered without the international consensus criteria being used. The two issues are somewhat separate.
     
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  6. Colleen Steckel

    Colleen Steckel Established Member (Voting Rights)

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    Not sure where you are located but in the US insurance won't cover tests that aren't attached to the code used. Currently the codes used in the US for CFS do not include these tests so we have a very hard time getting doctors to order them. By having the code of diagnosis attached to the testing information that will insure that insurance companies will provide coverage. So ICC criteria having a billing code equals IC Primer testing being covered.

    The other piece of this puzzle of having the right diagnostic criteria and code is for disability coverage. Right now because CFS encompasses a lot of patients who are fully able to work it takes a huge amount of work on the part of patients to get onto disability. If the ME ICC was incorporated into our system then patients would be one big step closer to judges and disability lawyers understanding the severity of the illness in their clients.

    There are lots of downstream effects to which criteria is used and all of those down stream effects are why patients right now are struggling to get testing, treatment, disability, and support.
     
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  7. alex3619

    alex3619 Senior Member (Voting Rights)

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    The ICC is the most recent and up-to-date research criteria we have. It needs detailed exclusions to maintain cohort homogeneity. SEID is a clinical diagnosis, and needs to avoid exclusions as this is a negative in the clinic. However we can get the same, or better, by using ICC clinically provided exclusions are considered as a guide, not a dogmatic rule.

    There is no current substitute for ICC in research. However given how long it will take to force changes in the system, even presuming total success in the politics, it will likely start to phase in as all of it becomes obsolete due to biomarker advances. Getting the science right is critical, and our best research often uses CCC or ICC now, its dominating the advances. So the fight for ME is probably already succeeding.

    The number one need for advocacy is supporting our researchers, followed by opposing bad treatments. In engaging with the NIH I think we need to emphasise that the ICC is the most recent and up-to-date research criteria, so should be mandatory for any grant applications to be considered unless they are looking at definition comparisons.
     
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  8. alex3619

    alex3619 Senior Member (Voting Rights)

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    No, it cannot, not if its applied accurately. The issue here is the same as the issue with fatigue ... doctors too often treat it based as a simplification, without proper consideration of criteria. Depression does not have PEM, MS does not have PEM, they do however have fatigue, and MS includes exercise intolerance. Exercise intolerance is not PEM.

    So doctors unfamiliar with criteria, and unfamiliar with tests, and paying too much attention to fatigue and malaise, will typically get it wrong. This is primarily a problem with medical profession education, and the CDC is still not meeting the community need.
     
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  9. alex3619

    alex3619 Senior Member (Voting Rights)

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    Simpler is probably better clinically, but if researchers cannot handle complex criteria they should change professions.
     
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  10. alex3619

    alex3619 Senior Member (Voting Rights)

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    I support the IOM report as a tool for politics, despite its scientific flaws due to methodological complications. This does not mean I support SEID, though I am not completely against it either, at least for clinical use. Supporting the IOM report and supporting SEID are two different things, relating to two different needs.
     
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  11. alex3619

    alex3619 Senior Member (Voting Rights)

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    Nothing in any criteria will change it either. There are factors beyond ME criteria pushing this. Opposition to ME as a label took off after 1970, when it was branded as a psychosomatic illness. That was very influential. Opposition to what we are calling ME goes back decades before that according to what I have read, but I have not investigated this.

    One issue that often arises in these discussions is about ICD codes. These have political but not scientific importance. They also will not stop doctors diagnosing somatoform or other disorders. ICD rules mean doctors should not dual report codes, but it does not ever stop them from reporting one code is wrong for a patient, and their preferred code is right. We need diagnostic biomarkers to stop this.

    My main two goals in advocacy, currently, are advancing research and opposing psychobabble. Both of these are aimed at better treatment for patients. Getting the NIH to require ICC in research is an important goal. Clinically its not likely to be as effective as we often hope, and I expect will take too long to roll out before biomarkers supersede the effort.
     
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  12. alex3619

    alex3619 Senior Member (Voting Rights)

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    Actually it started in 1970 with the PhD thesis that ME is mass hysteria and McEvedy and Beard.
     
    Last edited: Aug 4, 2018
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  13. anniekim

    anniekim Senior Member (Voting Rights)

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    Very true, but there were still a group of doctors supporting ME was a biomedical illness and they even held a symposium in 1978 at the Royal Society of Medicine to discuss avenues of future biomedical research etc. Link here https://me-pedia.org/wiki/1978_-_Symposium
     
  14. anniekim

    anniekim Senior Member (Voting Rights)

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    That is extremely concerning.
     
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  15. anniekim

    anniekim Senior Member (Voting Rights)

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    Ok, I have slowly read through this thread after putting the petition up. I have learnt some disagree with Jason’s definition of PEM when doing his SEID studies. Apologies I am not doing well at the mo physically so my points will not be particularly cogent! I don’t know how to multi quote either so will just have to put comments in inverted comments.

    Trish, you pointed out you don't understand why Jason persists in describing PEM as fatigue for 24 hours after activity as you believe this is not PEM as Pem is post exertional malaise, not post exertional fatigue. I can’t find it now but Jason cited a medical definition of malaise which gave fatigue as a synonym. So perhaps he believes in medical circles some will view malaise as another word for fatigue. My understanding some people with severe depression cannot carry out everyday activity not only due to emotional apathy but feelings of fatigue and I presume attempts at doing more would make them write down possibly they feel more malaise after attempting. Obviously the post exertional effects in ME are not fatigue and malaise but increase in many symptoms and feeling much more ill.

    Sea you wrote- “I believe we need to be proactive in calling for research, and in critiquing research to ensure it is accurate, but not in demanding that a particular criteria is adopted without research that shows it is the most accurate reflection of the illness. Some of these patient groups are trying to take the place of researchers, it’s not how disease definition works.”
    By this argument, the SEID criteria should not be being promoted as the diagnostic criteria by the CDC, even calling all previous criteria, including CCC and ICC as historical, implying the SEID is most up to date, as I believe the IOM criteria were not evaluated with data sets of patients and controls. *
    *Jason, L. Sunnquist, M. Brown, A. McManimen, S. Furst, J. Reflections on the IOM’s systemic exertion intolerance disease. Pol Arch Med Wewn 2015 pii: AOP_15_067

    I take on board the SEID criteria say "The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity"
    With regards the exclusionary criteria in ICC and other criteria somebody explained it to me in this way which I found helpful as I did wonder what do people do if they have two conditions. They wrote:
    “Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded."

    The important word here is "primary" which means the depressive disorder, or other psychiatric disorder, is determined to be necessary and sufficient to produce the patient's symptoms. Of course, that is a tricky situation requiring a doctor to make a clinical judgment.

    The MDD could be determined to be comorbid, rather than primary, allowing the ME diagnosis. The MDD also may be determined to be secondary occurring subsequent to the onset of ME and related. The patient would then be eligible for both diagnoses. Differential diagnosis is always difficult.

    With the IOM criteria lacking exclusions, primary depressive orders can be given a comorbid SEID diagnosis, even though the four SEID symptoms may be result solely from the depressive disorder and resolve when the depressive order is successfully treated. In that case, it would be, oops, it looks like that patients didn't have SEID after all.

    For example, a recent IOM-based study found a significant percentage of patients with hypersomnolence (daytime sleepiness) in an Atlanta sleep clinic also met the IOM criteria for SEID. The authors of the study gave these patients a diagnosis of comorbid SEID, when it was likely that the sleep disorder was solely causing the patients' symptoms. The comorbid SEID is likely to vanish when the patients' sleep disorders are resolved.”
    https://onlinelibrary.wiley.com/doi/abs/10.1111/jsr.12689

    I have taken on board the comments here and appreciate any corrections to some of my points, but they haven’t persuaded me to not support the petition calling for US agencies to use ICC criteria for both diagnostic and research purposes. I can’t but forget medical agencies such as CDC and NIH in the past have said a criteria should only be used for diagnostic or research and vice versa yet ended up not doing that, I am not filled with confidence that the CDC will make sure IOM SEID criteria (which they call ME/CFS) is only used for diagnostic criteria, so I still support this petition. Medfeb’s comment that least in the US is that the NIH and CDC are saying that any definition can be used, even if it does not require PEM is incredibly concerning.

    Meanwhile, as Cinders said, here in the UK we still have the dreadful NICE criteria that only requires post exertional fatigue.
     
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  16. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    That's not my reading of the study you linked to. The IOM patients are different to the normal hypersomnolent patients, most notably in being drug-resistant.

    While this might mean that some patients with sleep disorders may falsely fulfil IOM criteria it may also mean the reverse: that IOM patients are falsely diagnosed with sleep disorders.

    Given that ME is often misunderstood and isn't believed in, I think both are possible. The clue seems to be that the patients don't get better with drugs, which is typical of ME and not so much sleep disorders.

    As for comparing CCC PEM and ICC PENE, the PEM description of CCC feels better to me, because it captures flu-like immune symptoms in more detail. Where it falls down is in recognising the other possible permutations of PE*.

    PENE includes multiple types of PENE, including muscle fatiguability and neurocognitive effects, but doesn't describe any of them as well as CCC PEM describes the immune part.

    What we really need is a description that captures all of them perfectly. But, for what it's worth, at least one study suggests it's the immune elements in particular that distinguish similar symptom profiles in MS (which has exercise intolerance) and ME (which has PEM): http://biomedicine.imedpub.com/diff...is-and-chronic-fatigue-syndrome.php?aid=19654

    That would mean that while CCC PEM is less encompassing than ICC PENE, the former is actually more diagnostic in some cases. More complex isn't always more useful.
     
  17. Inara

    Inara Senior Member (Voting Rights)

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    This is correct. Still, the political and legal importance cannot be underestimated, especially for those that received the G93.3 diagnosis.
     
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  18. alex3619

    alex3619 Senior Member (Voting Rights)

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    For sure, its useful in many issues, but its not a scientific code. Any insurance or reporting issues do have an impact. Insurance is clear, treatments and tests get funded, but reporting codes tell officials what is going on in the entire community.

    What to consider is this, if you think ICD is evidence of correctness of a diagnosis - if the ICD decided ME was a psychosomatic illness, and put it in one of those codes, would you ever consider that scientifically valid, given the evidence? There are pressures on ICD to do just that.
     
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  19. strategist

    strategist Senior Member (Voting Rights)

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    This study is nonsense. Patients that agreed with the statement that "exercise brings on my fatigue" on the fatigue severity scale were considered to suffer from PEM. The problem is with the study, not the IOM case definition. Nowhere does the IOM report suggest that this is an appropriate way to determine presence of PEM. In fact it explicitly says that PEM is more than fatigue following exertion. The reason this study is bad is probably because it uses data that had already been collected for other purposes.

    https://www.s4me.info/threads/seid-...ilot-study-2018-trotti-et-al.3402/#post-72423
     
    Last edited: Aug 4, 2018
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  20. Medfeb

    Medfeb Senior Member (Voting Rights)

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    This could happen with all other definitions as well, including the ME-ICC. The problem isnt just the definition used, its how the definition was operationalized/how the specific definitional criteria were assessed. To my knowledge, there are no current efforts tackling that problem.
     
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