The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Input wanted from people who consider ME to be different from SEID

Discussion in 'Institute of Medicine (IOM) Government Contract' started by snowathlete, Feb 25, 2015.

  1. snowathlete

    snowathlete

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    As I understand it, some people believe that ME is a different disease from SEID. Believing (as I understand it) that myalgic encephalomyelitis is an accurate term describing their disease pathology and that the description of SEID in the IOM report is an inaccurate description of their disease.

    I've been playing that through in my head and considering some hypothetical situations such people might find themselves in in the future and I'm wondering what you might do in such circumstances.

    I'm interested firstly in how you arrived at the conclusion, personally, that you have ME and not SEID? Particularly, I am thinking about encephalomyelitis (brain and/or spinal cord inflammation) here.

    Some other people consider themselves to have the disease described in the IOM report, yet disliking the name SEID, will continue to use the label ME to describe their disease. How will you distinguish yourselves from these other people with "ME"?

    Where might you stand if research into SEID results in findings of brain and/or spinal cord inflammation in SEID patients? Perhaps, or perhaps not, resulting in the name SEID being dropped in favour of ME, once backed by this evidence. Specifically I'm wondering whether you would then consider the two diseases (ME and SEID) to be the same disease after all? Or still different?

    Where might you stand if research into SEID results in a treatment being approved for patients with SEID? As an example, let's consider Rituximab. Let's assume it is found to work well in ~60% of patients, but no solid data on subgroups and why it works in some but not others. With a mortality rate from treatment of between 2.4-10.4% (as in this mortality study).

    Where might you stand if research into SEID results in a bio-marker, (such as a blood test) for the disease? I would imagine you would get tested, if it was safe and affordable, but I don't know if that assumtion is right?

    If you did get tested and were positive, would you then consider yourself to have SEID? Or still ME?
     
  2. Nielk

    Nielk

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    I am trying to understand why you included the mortality rate study?
     
  3. Sasha

    Sasha Fine, thank you

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    At the risk of going briefly off-topic, that mortality rate looks a lot higher than what I thought the Rituximab mortality rate was. What do you think, @Jonathan Edwards?
     
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  4. Nielk

    Nielk

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    The IC Primer on p. 5 states re. Neurological impairments -

    My spect scan showed this exact abnormality.

    In addition:

    My qeeg shows elevated delta and beta frequencies.
     
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  5. Nielk

    Nielk

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    I can't stop people from using whatever label they wish. The way to qualify it is though through which criteria. I would qualify myself as ME-ICC.
     
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  6. Nielk

    Nielk

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    If that were to happen, wouldn't they have to adjust the criteria accordingly? the criteria would have to include then this biomarker. I'm sure then everyone will have to be re-evaluated to see which criteria fits them.
     
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  7. caledonia

    caledonia

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    In the upcoming ICD-10-CM, ME and CFS are mutually exclusive - two different diseases.

    I've been playing that through in my head and considering some hypothetical situations such people might find themselves in in the future and I'm wondering what you might do in such circumstances.

    If you fit the criteria in the ICC you have ME.

    This is incorrect and will cause confusion. They have CFS/SEID, not ME. This is why "Ramsay's Disease" is being floated as a "nickname" we can use instead of SEID.

    I don't think this would happen as ME has it's own ICD-10-CM code and is mutually exclusive from SEID. SEID will have to get yet another new name.

    If a treatment for SEID worked on me, I wouldn't care what they called it, if I was better.
     
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  8. snowathlete

    snowathlete

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    I included it as I anticipated the reply that it depends on the weight of potential risks & benefits. so I tried to quantify it a bit.
     
    Last edited: Feb 25, 2015
  9. snowathlete

    snowathlete

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    Thanks for all your answers.

    Such a finding may well not result in a usable biomarker. Might be too invasive or expensive, or not have enough specificity, etc.
     
  10. SpecialK82

    SpecialK82 Ohio, USA

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    Sorry to go off topic - Nielk would you mind sharing how you were able to get a SPECT in the US? And did insurance cover it? Thanks
     
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  11. snowathlete

    snowathlete

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    Thanks for your answers.

    Isn't there a contradiction here? A person may meet ICC criteria (so as you point out would have ME) and also the IOM criteria (so as you point out, would have SEID) and feel the IOM report describes their disease best, and yet still prefer to use the label ME.

    Asking them if they meet ICC-ME may well fail to clear things up as they well answer yes.

    Take someone a little like me for instance: I meet ICC-ME. I also meet IOM-SEID. Now, I think SEID is more accurate than the ME label, and I think the diseases are the same thing. But there are other people identical to me but who dislike the SEID label and will continue to use ME.

    As you say, could get confusing.

    Interesting your point about the exclusive ICD codes.
     
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  12. snowathlete

    snowathlete

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    No doubt!
    But what I was trying to get at was, would you risk taking the teatment if the clinical trials for such a drug were done on SEID diagnosed patients only?
     
  13. Nielk

    Nielk

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    It was ordered by a neuro-feedback practitioner and was not covered by insurance.
     
  14. Nielk

    Nielk

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    ME/CFS patients are taking the risk right now in Rituximab trials even though it's been only approved in some cancers and RA.
     
  15. SOC

    SOC

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    Yes, but it would be a treatment for SEID, based on SEID research on SEID patients, not a treatment for ME. If SEID and ME are two entirely different diseases, then the research wouldn't apply to your condition.

    If you didn't have a SEID diagnosis, the treatment wouldn't be available to you. Would you then decide that you actually do have SEID in order to get the treatment, although you had been denying SEID up to that point? Or would you not seek out the treatment because it is treatment for SEID and not ME? Would you want there to be follow-on studies of the same treatment in ME patients to find out if the treatment was effective for ME (and wait another 5 years for that to happen) before you would seek out the treatment?
     
  16. snowathlete

    snowathlete

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    Yes, they are, but not everyone is willing to take those risks. Some people haven't applied to go on these trials because of those risks and uncertainties over whether the potential benefit outweighs those risks. There is even a poll on here somewhere where the question is (and this is a parphrase from memory) "Would you risk taking Rituximab treatment now if you could have it" and I seem to remember a lot of people answering "No".

    Potentially, patients who believe that their ME is a different disease from SEID could end up in a similar situation, where the same sort of uncertainties exist, no?
     
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  17. caledonia

    caledonia

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    I fit both criteria too. That is a tough one. I would worry about it making me worse, as I don't do well with drugs in general. Of course, my doctor's opinion would weigh in there too.
     
  18. SOC

    SOC

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    Yes, but why would you think research based on SEID patients would apply to you, an ME patient, if SEID and ME are two entirely different illnesses?

    Also, the ME/CFS patients taking the risk with Ritux are involved in clinical trials of the effectiveness of Ritux in ME/CFS, so that doesn't apply to @snowathlete 's question which is about standard treatments, not clinical trials.

    What if a treatment was found to be effective in SEID and approved for SEID patients, but not for ME patients. Would you want the treatment to be only available to ME patients as part of clinical trials as Ritux is now? Assuming that anyone was even doing a trial of the treatment in ME patients. What if no one undertakes such a trial? Would you consider that treatment not appropriate for you because it is a SEID treatment? Or would you change your mind about your diagnosis in order to get the treatment (which seems unlikely since you believe they are two entirely different diseases).
     
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  19. Nielk

    Nielk

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    ME/CFS patients take immune nodulators, anti-virals and other treatments that are used for other diseases
    In reality, I did take Rituximab last year. I was approved for it because I have been diagnosed with RA. I would not have tried it though if it wasn't for the possible fact that it might help with my ME. Unfortunately it didn't help.
     
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  20. snowathlete

    snowathlete

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    As the IOM report was on research that included (among others) the term ME, I would imagine that the FDA would currently consider people with the label ME to be approved as well, if a SEID drug was approved. I think that would likely be the current interpretation. But things could change, especially if people believing ME is a seperate disease really push for that to be recognised seperately.

    For the purposes of the question I was assuming you could access the drug if you wanted to. Say the FDA authorise it for "SEID and it's other names, ME, CFS, etc." Would that give you enough confidence to try it or would you disagree and not want to try it.
     
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