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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My embarrassing, ignorant questions!

Discussion in 'General ME/CFS Discussion' started by markielock, Jul 17, 2017.

  1. markielock

    markielock staying independent, one day at a time

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    Hi guys,

    Despite living CFS for 7 years, I still have some rather embarrassing ignorance surrounding the subject. I would be grateful if anyone could clear up some of these confusions for me!

    1. M.E. AND CFS ARE DIFFERENT


    From what I can gather, "M.E. is characterised by damage to the brain and the brain stem (which is observable on brain scans, and is similar to the CNS damage seen in M.S.)". Apparently there are very specific tests to diagnose this.

    My understanding of CFS is that it's an umbrella term to describe the clinical landscape of symptoms we all experience. We get labelled with this when no one can describe where our symptoms come from.

    • Are my definitions of CFS and M.E. accurate?
    • Why do we combine CFS/ME together as a term if they're different? Is it because they have similar symptoms? Whats the connection? I have been using the two interchangeably, have I been wrong to do this?
    • Is it true that M.E. is actually fully testable? Despite my diagnosis of a post viral fatigue, I was never tested for M.E. Would there be a reason why this wasn't the first thing to be explored?

    2. RESEARCH INTO CFS

    There is a lot of research going in to CFS to understand the underlying mechanics and a means to diagnose it. What I don't understand is if CFS is a clinical landscape, does that not mean the symptoms, despite being common to everyone with CFS, can originate from different things?

    Do the people doing the research have reason to believe it is a very particular illness that is waiting to be properly discovered or are they trying to just trying to follow the symptoms to find the most common reasons why these groups of symptoms would manifest? Or are both things considered possible right now?

    The more I learn about my condition there more I realise the vast, vast gulf of what has been left unexplored. There are legion of seemingly common tests that could hold the key to a diagnosis for me. It makes me a bit upset at medical professionals of whom I've sought help, especially since it was a group of experts at my local hospital who apparently specialised in this stuff. If my assumption that CFS is a clinical landscape with many origins, I feel like I'm still at the start of my mission to figure out the source of where my symptoms come from.

    Thank you for taking the time to read and hopefully answering my ignorance! :)
     
    Skycloud and besedaris like this.
  2. lansbergen

    lansbergen Senior Member

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    It was called ME and then came the psychobabblers and it was degraded to CFS
     
  3. PinkPanda

    PinkPanda

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  4. Murph

    Murph :)

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    1. Most people call it ME/CFS. There's a lot of politics around the name with many who claim stigma and lack of research into the disease are caused by the name. Those people mainly prefer Myalgic Encephalomyelitis as the name. Mostly because it sounds scientific although there is another subset that claims the two are distinct. I am not aware of evidence that the two are in fact distinct.

    2. The problem of false diagnoses and disease definitions ruining research is a massive problem. Many people in the studies may not have ME/CFS at all. For a long time scientists searched for a biomarker that could help define the patient population. Many have been proposed but none has stuck, often because they are impractical or not universal enough.

    New disease definitions (e.g. IOM definition) list cardinal symptoms that define the disease. Most say the chief one is post exertional malaise - feeling very bad after exercise.

    The reason to believe it is a real disease is mainly that -despite fuzziness at the edges - many many many people describe many of the same symptoms and similar disease onsets.
     
  5. parabola

    parabola

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    My understanding is that CFS = 'tired all the time', and has been weaseled into ME language as an easy way for ME to be classified alongside depressive illnesses which cause lethargy and hypersomnia. This classification is for the purpose of withholding insurance and social security since the onus can then be placed on the sufferer to complete GET or take antidepressants lest they be seen as refusing treatment.

    'ME' covers all of our symptoms which mimic viral infection like the the fevers, flu-like muscle aches, the fact that we get PEM, have difficulty sleeping and neurological symptoms- in the case of ME, being tired is a knock-on effect of dealing with all these things rather than the sole presenting symptom.
     
  6. Denise

    Denise Senior Member

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  7. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    this happened in 1988, the CDC stablished "chronic fatigue syndrome" as the most damaging disease name in the history of medicine. Here is the paper that started all: https://www.ncbi.nlm.nih.gov/pubmed/2829679
    It seems that some guy named "Gary P. Holmes" is responsible for a big deal of our suffering since that dreaded day on 1988, I was 3 yrs old back then, 10 years before becoming ill. Shall his name remain forever infamous for all eternity.
    More info here:
    https://academic.oup.com/cid/articl...e-Chronic-Fatigue-Syndrome?redirectedFrom=PDF
    http://me-pedia.org/wiki/Holmes_criteria
    @markielock
     
    Last edited: Jul 17, 2017
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  8. Esther12

    Esther12 Senior Member

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    I'm afraid that you're asking about things that we're all pretty ignorant about, and for which there's a lack of good evidence. Nothing embarassing about your ignorance at all - better than imaging you know more than you do, which is easy to slip into with ME/CFS.
     
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  9. Alvin2

    Alvin2 Senior Member

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    There may be a difference between ME and CFS, there may not be, there may be subsets or there are several conditions being put under a catchall umbrella. There may also be differing comorbid conditions We really do not know yet.

    Everyone presents a bit differently, this is common even in well researched conditions from Narcolepsy to Parkinsons, the disease mechanism is the same for all people with a given condition but how their symptoms progress is quite different from individual to individual. This probably has to do with genetics, trigger, age, environmental factors, medications/treatments, etc.
     
    Last edited: Jul 17, 2017
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  10. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    indeed, the possibilities as to what ME/CFS actually is are virtually endless, they could be a cluster of a dozen different diseases with similar symptoms, a very variable single disease with the same underlying mechanism, etc. When I think about it I get actually overwhelmed and a little hopeless, as the problem seems to be sooo complex that it is so hard that a solution might arise soon. If you think about it, wherever it's been searched in people with ME bodys, anomalies has been found, the disease/s seem to affect practically every body system... it's as complex as it gets. Nothing in our bodies is safe from ME's grasp, it seems
     
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  11. Alvin2

    Alvin2 Senior Member

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    I don't see it that way.
    We all seem to have similar symptoms from cognitive issues to PEM to sleep abnormalities. If we assume the pyruvate dehydrogenase theory is correct and something is causing the block as Dr Davis found then we have a disease mechanism (yet to be proven of course). Now whats causing this could be variable, from microbiome abnormalities to viral trigger to immune/autoimmune to genetic abnormalities (Dr Davis doesn't believe so) or who knows. Its possible there are many possible triggers leading to the same condition, but it is possible here are a few overlapping conditions. Its also possible that all these ultimately cause the same abnormality, all roads leading to Rome as it were.

    At this point we can only speculate and driving ourselves nuts won't get us anywhere except becoming crazy.
     
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  12. markielock

    markielock staying independent, one day at a time

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    Thanks so much for the info so far guys, it's helping me gain a better perspective on the landscape surrounding these issues. I'm hoping I can now go and explore it a bit more and gain some new insights :)
     
    Skycloud likes this.
  13. Alvin2

    Alvin2 Senior Member

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    Your welcome.
    The only bad question is the one you don't ask
     
  14. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I agree

    Also in the UK if you have PEM and meet the NICE guidelines for diagnosis you have ME/CFS or CFS/me. That has been the case for all diagnoses since they merged the names whether we like it or not. I guess you can call it either ME , CFS or the merged name once you are diagnosed. personally I think both names are misleading and have equal stigma. I think that once they have a diagnostic test and understand the condition more (including disease onset and progression) they should change the name to something more meaningful. I don't think we are very near to that point though , so we should probably just stop worrying about the name and focus on more important things.

    We should obviously pull up any doctor or researcher conflating the disease proper with "chronic fatigue" as a symptom.
     
  15. Wonko

    Wonko Senior Member

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    As someone with M.E. and the resultant cognitive limitations I feel safe stating that there are no complex problems.

    Like a fly trapped in a room there is only "did it" and "ouch, wall". Without even enough recall/awareness to vary the starting conditions to try and vary the result the outcome/solution is down to dumb luck. Dumb luck is not susceptible to careful rational thinking or planning, it is not a complex thing, it either occurs or, most of the time, it doesn't.

    It is susceptible to persistence, or at least persistence increases the odds over simply giving up, but even then.....not so much.

    The majority of us are like that fly, all buzzing around in a room, some rooms have a window, some rooms even have an open window, we're mostly persistent, for a while, if we were all in the same room we might have a chance of getting out, if we could co-operate, notice that someone had got out, and remember how to follow them, but we're not, we're all in different rooms, buzzing around, smashing headfirst into walls, or giving up and coming to rest to scuttle about until disturbed by external events.

    That's M.E., that's me.
     
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  16. ahimsa

    ahimsa Sick since 1990

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    Hi @markielock

    If you ask 5 different people "What is ME vs. CFS?" you'll probably get 6 different answers. ;)

    I'm not an expert but as far as I can tell nobody really has a good answer yet. So there's no need to feel embarrassed by not having definitive answers.

    Doctors (clinical and research) use different diagnostic criteria for determining who has ME vs. CFS vs. SEID vs. whatever name you'd like to call this illness. Here's one article talking about the various diagnostic criteria that might be helpful for you: http://tidsskriftet.no/en/2015/10/what-exactly-myalgic-encephalomyelitis

    I do not believe that anyone in the world has one specific test that definitively diagnoses ME / CFS / SEID. I've love to see a link to a research study or government website if you think such a test exists. (not a website created by patients)

    There are research tests that show promise (e.g., that 2-day CPET test measuring VO2 Max and others, plus some other tests that I can't remember) but I don't think any of them have been completely verified and accepted yet. I think there's still a lot of uncertainty.

    As far as the name, that is also under debate. Here in the USA most patients and doctors have moved to using the ME/CFS combination. The name is important in some ways (affects how patients are treated and whether doctors/researchers get funding) but in other ways, who cares? What we need is treatment or a cure. So the whole name discussion can get very complicated.

    In my opinion (and many others), the name CFS is demeaning and not very useful. It has lead to the false idea that people are just "tired all the time" which means other important symptoms (immune, autonomic dysfunction, neurological, etc.) get ignored and are not treated. Additionally, it means that patients who have "chronic fatigue" from some other illness get misdiagnosed with CFS. And it means that some doctors don't take ME/CFS/SEID patients seriously and also underestimate the degree of disability.

    On a personal note, it seems that the CDC left out a lot of important diagnostic criteria when coming up with their diagnostic criteria. Or else they examined folks with a completely different illness than what I have.

    This leads to the idea that there could be a lot of different subsets (some new data is out on that now). Also there seems to be a difference between when a patient first gets sick and when that same patient has been sick for more than 5-6 years.

    Anyway, there's a lot information out there and not a lot of consensus on answers.

    I'll end with this link to a summary by ME Action: http://www.meaction.net/about/what-is-me/

    I hope this is not too rambling and full of errors. And more than that, I hope it is somewhat helpful. :)
     
    Last edited: Jul 17, 2017
  17. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    sorry but my memory is, as spected, quite bad. Is this pyruvate dehtdrogenase hypothesis the big finding that was made in the last year and that was much discussed at this site?
     
  18. Webdog

    Webdog 84-91% are undiagnosed

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    On a personal note, I was diagnosed using Institute of Medicine (now Academy of Medicine) criteria. So technically I have Systemic Exertion Intolerance Disease or SEID.

    I tell people I have ME/CFS, which is what the Academy of Medicine report and (now) CDC use. If people look puzzled, I tell them it's also known as Chronic Fatigue Syndrome.

    My primary care doctor wanted to diagnose me with ME (due to my neuro symptoms), but my HMO doesn't recognize ME as a diagnosis. The only diagnosis allowed is CFS, so according to my medical record, I have Chronic Fatigue Syndrome by default.

    In the U.S., I wouldn't put too much into the "ME vs. CFS" debate until we have a diagnostic test and know more about its cause(s) and subgroups. But perhaps things are different in Scotland.
     
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  19. Alvin2

    Alvin2 Senior Member

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    there are probably a few good threads on it if anyone can hunt them down, but here is the study
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/
     
    lauluce likes this.
  20. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina

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